Re: Weighing in on the issue

[Guest guest]

Deb, that was wonderful. We should keep it and give it to all the newbies!

I know how I felt coming here but I was very into using the antibiotics.

Since I have been on them since 1997 I also get a little frustrated with

people who do not SEE the antibiotics are the way to go. so I refrain from

commenting and let other newbies talk to them. It's like politics. I just

don't understand how others can't see my point of view and get mad so rather

than losing friends I steer clear of political talk when I am around them.

Thank you Deb.

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of DEBBIE GIBSON

Sent: Saturday, June 19, 2010 11:17 AM

support group

Subject: rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it

all here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even

for some who try everything, including antibiotics! What works for some,

will not work for everyone. Some need to add dietary change, some need to

juice exclusively, some need to do a detox, etc..etc...Despite doing

everything one can, some patients do not respond to anything...and despite

their best efforts and will to live, they die. These diseases are scary but

at places like this BB we can all be supportive and caring....even if a

patient refuses to see things our way...each of us have to come to

conclusions on our own...they either will, or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could

not stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in

minocin use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a

while know we have to make our own decisions...for some....like my mom for

example, she takes whatever her DRs tell her to take...I feel like I have

earned my wisdom through trial and error, what works for me, listening to my

body and asking for and receiving the great support and help on this

board...Ethel has been a Godsend and not just about abx protocol but about

juicing, detoxing, coffee enemas, etc...

Every new little symptom would simply freak me out...it takes time to learn

to live with these diseases...to deal with everything hitting us seemingly

all at once....and there is soooo much info we are hit with when first

diagnosed...it is normal to waffle back and forth...it is also very normal

to be veryyy unhappy with your DRs...I have had some real DUDS! One

physician told me and I quote " Why are you fighting this so hard, its

terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I

took much heat for that because he was not a proponet of the abx

protocol...but he gave us good info and spoke eloquently about advancements

in care...Education is arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you

can drag a horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the

same lung disease I was dx with..Obliterative Bronchiolitis...my case was

either caused by minocin use or the RA...it has been written up in journals

as both, so who knows...his case...not specific...no minocin use, no

RA...but he is in the paper, he is dying and giving an interview...he is on

the lung transplant list...AS WAS I....I look him up and call him...the form

of chemotherapy I used to stop this disease in its' tracks is available

here...he is veryyy excited, he speaks to his physician...his DR tells him,

nah, it does not work...we will just wait for the lung transplant...OKKKKKK!

What can I do? I met with him, gave him all the information, showed him my

lung function tests, before and after...his Dr told him nah...lets do the

lung transplant.....the patient decided to do what his DR wanted him to

do...get a lung transplant, take a lifetime of anti rejection

drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his

body from the OB attacking his new lungs??? Ah well...I tried, I tried

hard...last I heard from him, he was still waiting for his lungs and on

veryyy high doses of steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some

of us take a while to come around, and some never do...we are here to be

stewards, guides to help others...to give back to patients as was given to

us...I may not use the abx protocol any longer but I still have a wealth of

knowledge to offer re labs and physicians, etc...and others here have a

wealth of knowledge to offer re alternative treatments to augment or help

our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs

needed to be fired...sometimes venting is all we need to do...just vent to

others that understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we

don't turn any patients away even if they are not quite on our wave length

yet...do I think the ABX protocol works...without a doubt! ....do I think

its worth trying...Absolutely! I would be on it if I could...but....everyone

has to come to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Debbie, you're great. As always, ready to help everyone else. I'm sharing your

letter with Patti - maybe it will " goose " her to get back on the antibiotics.

That's a shame about the fellow who has opted to get the lung transplant. What

a sad, sad situation. Did you put it to him that getting a transplant doesn't

change the possibility of his lungs being attacked again? Is he elderly? I

think the " older generation " (except for me!) tends sometimes to believe that

doctors should have the last word on health matters. We're from that generation

that was taught to unconditionally respect positions of authority - doctors,

teachers, preachers, policemen. Well, we know now that they are just like the

general population - some good, some bad.

Anyway, thanks for being you.

Ellen

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection drugs...ok....no concrete evidence that the lung disease will not come

back with a lung transplant...because if his body is causing it...what stops his

body from the OB attacking his new lungs??? Ah well...I tried, I tried

hard...last I heard from him, he was still waiting for his lungs and on veryyy

high doses of steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

I am angry I could spit.  How dare you talk to this poor girl this way I don't

care what you have accomplished.  I have been learning from this group for

several years and I have been able to slowly apply things to my life with other

issues in the way  I was slow moving on it also I needed to study several

comments from many people and not just assume it is gospel without time to

research and absorb.  That was so terribly insulting and painful I could hardly

finish it. I am glad I did not write in to the group when I first came here I

would have signed off also.  I thought this was for information and assumed it

also came with patience not insults.  I understand some of you have learned and

mastered much but we all need time to hear you are better to encourage us to

make this step especially when the doctors are telling us the opposite. It takes

time for us to come there, that does not mean we are here for someone to feel

sorry for us it sometimes

means we need a friend to just listen and grow from there.  Anyone of you who

took this attitude should be ashamed of yourselves, how dare you judge others.

                         Man can easily count the seeds in an Apple, but only

God can know the apples in an seed.

         Happiness resides not in possessions and not in gold; the feeling of

happiness dwells in the soul.

                                                                                \

                           ( Democritus )

[Guest guest]

Did you respond to any of her requests for help? I must've missed that.

Boni Bowles wrote:

>

>

> I am angry I could spit. How dare you talk to this poor girl this way

> I don't care what you have accomplished. I have been learning from

> this group for several years and I have been able to slowly apply

> things to my life with other issues in the way I was slow moving on

> it also I needed to study several comments from many people and not

> just assume it is gospel without time to research and absorb. That

> was so terribly insulting and painful I could hardly finish it. I am

> glad I did not write in to the group when I first came here I would

> have signed off also. I thought this was for information and assumed

> it also came with patience not insults. I understand some of you have

> learned and mastered much but we all need time to hear you are better

> to encourage us to make this step especially when the doctors are

> telling us the opposite. It takes time for us to come there, that does

> not mean we are here for someone to feel sorry for us it sometimes

> means we need a friend to just listen and grow from there. Anyone of

> you who took this attitude should be ashamed of yourselves, how dare

> you judge others.

>

> Man can easily count the seeds in an Apple,

> but only God can know the apples in an seed.

>

> Happiness resides not in possessions and not in gold; the

> feeling of happiness dwells in the soul.

>

> ( Democritus )

>

>

[Guest guest]

Hello Debbie,

what a beautiful letter!

I am sorry to hear that minocin did not help you longer. one year ago I stopped

mino because of kidney pain and ankle swelling, edema, but I decided to retry

it. what do you take and how do you feel on it?

thanks,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

support group <rheumatic >

Sent: Sat, June 19, 2010 8:16:44 AM

Subject: rheumatic Weighing in on the issue

 

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Thanks Rick....I would not say I am well...my labs still all come back with

positve results but I am not progressing via my organs as I was...so in that

respect, I am hanging in there...I learn more every day.

rheumatic Weighing in on the issue

Very well stated Debbie. I am glad you are well.

Rick

[Guest guest]

Thanks Cooky.....I truly meant that we can offer our point of view but we cannot

force others to take it...and I think I reiterated that repeatedly throughout my

email...it takes time, we are scared, when newly dx...and it takes time to

figure out what to do...and it takes a process to decide to go against what are

the usual, traditional offerings to us, I hope it helped some.

As for me, when I was first dx...I truly felt that abx was simply less toxic

than the other stuff they offered me...and since I did so well on the mino until

the abrupt lung condition issue...I would still be on them...if I could...Glad

to see you posting Cooky!!

Yes, you are soo right, it is much like politics...:>)) Sometimes we have to

agree to disagree....

Have a great Sunday! Hugs, Debbie

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it

all here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even

for some who try everything, including antibiotics! What works for some,

will not work for everyone. Some need to add dietary change, some need to

juice exclusively, some need to do a detox, etc..etc...Despite doing

everything one can, some patients do not respond to anything...and despite

their best efforts and will to live, they die. These diseases are scary but

at places like this BB we can all be supportive and caring....even if a

patient refuses to see things our way...each of us have to come to

conclusions on our own...they either will, or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could

not stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in

minocin use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a

while know we have to make our own decisions...for some....like my mom for

example, she takes whatever her DRs tell her to take...I feel like I have

earned my wisdom through trial and error, what works for me, listening to my

body and asking for and receiving the great support and help on this

board...Ethel has been a Godsend and not just about abx protocol but about

juicing, detoxing, coffee enemas, etc...

Every new little symptom would simply freak me out...it takes time to learn

to live with these diseases...to deal with everything hitting us seemingly

all at once....and there is soooo much info we are hit with when first

diagnosed...it is normal to waffle back and forth...it is also very normal

to be veryyy unhappy with your DRs...I have had some real DUDS! One

physician told me and I quote " Why are you fighting this so hard, its

terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I

took much heat for that because he was not a proponet of the abx

protocol...but he gave us good info and spoke eloquently about advancements

in care...Education is arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you

can drag a horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the

same lung disease I was dx with..Obliterative Bronchiolitis...my case was

either caused by minocin use or the RA...it has been written up in journals

as both, so who knows...his case...not specific...no minocin use, no

RA...but he is in the paper, he is dying and giving an interview...he is on

the lung transplant list...AS WAS I....I look him up and call him...the form

of chemotherapy I used to stop this disease in its' tracks is available

here...he is veryyy excited, he speaks to his physician...his DR tells him,

nah, it does not work...we will just wait for the lung transplant...OKKKKKK!

What can I do? I met with him, gave him all the information, showed him my

lung function tests, before and after...his Dr told him nah...lets do the

lung transplant.....the patient decided to do what his DR wanted him to

do...get a lung transplant, take a lifetime of anti rejection

drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his

body from the OB attacking his new lungs??? Ah well...I tried, I tried

hard...last I heard from him, he was still waiting for his lungs and on

veryyy high doses of steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some

of us take a while to come around, and some never do...we are here to be

stewards, guides to help others...to give back to patients as was given to

us...I may not use the abx protocol any longer but I still have a wealth of

knowledge to offer re labs and physicians, etc...and others here have a

wealth of knowledge to offer re alternative treatments to augment or help

our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs

needed to be fired...sometimes venting is all we need to do...just vent to

others that understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we

don't turn any patients away even if they are not quite on our wave length

yet...do I think the ABX protocol works...without a doubt! ....do I think

its worth trying...Absolutely! I would be on it if I could...but....everyone

has to come to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

In respect to your organs not returning to normal, I am not sure they do or

don't. All I know is that I was left with damage from the SD in my lungs -

which are doing remarkably well now, damage in both lobes and the main valve of

the heart which were fixed and I lost one kidney. I feel like the Velveteen

Rabbit - REAL and a bit chewed on but I HAVE MY LIFE BACK!

Re: rheumatic Weighing in on the issue

Thanks Rick....I would not say I am well...my labs still all come back with

positve results but I am not progressing via my organs as I was...so in that

respect, I am hanging in there...I learn more every day.

rheumatic Weighing in on the issue

Very well stated Debbie. I am glad you are well.

Rick

[Guest guest]

Hi Deb,

I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

do you do lots of raw foods like juices and smoothies?

 have you heard of the Marshall Protocol? I wonder if you are a good candidate

considering that you are a high blood pressure patient.

mino can be replace by a tetracycline.

I wish my bp would allow me the use of benicar

thank for all the info,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Sun, June 20, 2010 5:59:31 AM

Subject: Re: rheumatic Weighing in on the issue

 

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back with

a lung transplant...because if his body is causing it...what stops his body from

the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I heard

from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Hi Ana, I remember way back when Deb was first talking about photophoresis. At

the time, I had pulmonary fibrosis pretty badly and had asked Dr. Trentham about

it.  I had just started on A/P and he wanted to give it a little more time. 

In time, the damage to my lungs abated and so I dropped the subject, but I

always kept it in the back of my mind.  When I went to see Dr. Whitman, about

the Marshall Protocol, he was not too willing on the Benicar and said I could

substitute enalapril.  Since I was already on enalapril, I inquired at the

board of MP and was told that Benicar was used as a pallative for herxheimer

reactions and as a blockade.  They said if I didn't take the Benicar, I was not

considered to be on the MP.  I was in a quandry and didn't know what to do. 

So, I went to my GP and asked her what to do.  She said she would be willing to

monitor me completely through the MP and would give me scripts for Benicar. She

called Dr. Marshall

and got all the info from him.  I took the Benicar hesitantly and with

precaution.  She & I checked my B/P often and surprisingly it leveled out at

a 90/60.  That is a bit low, but because of the aneurysm, Doc wanted to keep

it on the low side as long as it didn't slip down any lower.  From then on, I

monitored my own B/P and when I saw that it would get a bit lower, I would pull

back on the dose of Benicar.  Eventually, I cut those in half.  It took two

years, but all the various antibiotics did do the trick of getting my blood

values back into the normal range.  Now, I just take 20mg of Benicar in the

morning and 20 mg in the evening along with dilitiazem 30mg twice a day. and

metoprolol100mg.  My pressures continue normally, so I hesitate to change and

go back to enalapril or discontinue anything unless I am monitored.  I am now

in Puerto Rico and have not yet found a doc who knows enough about this that I

can trust. I have a local doc

who will continue me on whatever scripts I have been taking. But he knows

nothing about my disease.  He is however very interested in all the info I

print up for him on A/P and stated he would share it with other docs at his

next meeting. I guess this is a step in the right direction.  Meanwhile, I am

seriously looking for an A/P doc in Puerto Rico or an Infectious Disease Doc.

 Insurance here is different.  One must belong to a plan and the plan says you

need a referral to see a specialist and I have not found any as yet. I am here

only  6 months and have been winging it on my own.  I have not yet run into a

snag and hope I can find a reliable doc with knowledge of these diseases that I

trust before I do.  Take care all, Dolores 

 

I thought all lot more about what remission is because someone asked the

question.  I think and this is my opinion only, that when they begin to live a

normal life once again and do not feel like they are disabled by their illness,

they have reached their level of remission. I don't think of myself as

incapacitated any longer.  Of course, like all normal people, there are days

when I am under the weather and either, I have developed a cold, or an itch or

a rash or indigestion. Normal people do this all the time. I figure this is

a reaction to not listening to my body and maybe I overindulged at

dinner the night before, or I've caught the sniffles. Everything passes so

quickly, that I do not give it much thought.  I think that is a state of

remission.  I would like to hear how others view remission.  Dolores 

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 12:24 PM

 

Hi Deb,

I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

do you do lots of raw foods like juices and smoothies?

 have you heard of the Marshall Protocol? I wonder if you are a good candidate

considering that you are a high blood pressure patient.

mino can be replace by a tetracycline.

I wish my bp would allow me the use of benicar

thank for all the info,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Sun, June 20, 2010 5:59:31 AM

Subject: Re: rheumatic Weighing in on the issue

 

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back with

a lung transplant...because if his body is causing it...what stops his body from

the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I heard

from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Hi Dolores,

yes, it looks like benicar takes no substitutes. unfortunately my bp is 88/57

without benicar. how can I convince any doc to put me on benicar with such a low

bp?

I remember dr Mirkin when he first started treating ra in the Washington, DC

area. He treated until the patient felt good again, no joint pain. I was one of

his first patients. then, we all learned the hard way that the abx should stop

only when all tests are normal. so, that is considered remission.

thanks for all your efforts to help,

Ana

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Tue, June 22, 2010 10:24:49 AM

Subject: Re: rheumatic Weighing in on the issue

 

Hi Ana, I remember way back when Deb was first talking about photophoresis. At

the time, I had pulmonary fibrosis pretty badly and had asked Dr. Trentham about

it.  I had just started on A/P and he wanted to give it a little more time. 

In time, the damage to my lungs abated and so I dropped the subject, but I

always kept it in the back of my mind.  When I went to see Dr. Whitman, about

the Marshall Protocol, he was not too willing on the Benicar and said I could

substitute enalapril.  Since I was already on enalapril, I inquired at the

board of MP and was told that Benicar was used as a pallative for herxheimer

reactions and as a blockade.  They said if I didn't take the Benicar, I was not

considered to be on the MP.  I was in a quandry and didn't know what to do. 

So, I went to my GP and asked her what to do.  She said she would be willing to

monitor me completely through the MP and would give me scripts for Benicar. She

called Dr. Marshall

and got all the info from him.  I took the Benicar hesitantly and with

precaution.  She & I checked my B/P often and surprisingly it leveled out at

a 90/60.  That is a bit low, but because of the aneurysm, Doc wanted to keep

it on the low side as long as it didn't slip down any lower.  From then on, I

monitored my own B/P and when I saw that it would get a bit lower, I would pull

back on the dose of Benicar.  Eventually, I cut those in half.  It took two

years, but all the various antibiotics did do the trick of getting my blood

values back into the normal range.  Now, I just take 20mg of Benicar in the

morning and 20 mg in the evening along with dilitiazem 30mg twice a day. and

metoprolol100mg.  My pressures continue normally, so I hesitate to change and

go back to enalapril or discontinue anything unless I am monitored.  I am now

in Puerto Rico and have not yet found a doc who knows enough about this that I

can trust. I have a local doc

who will continue me on whatever scripts I have been taking. But he knows

nothing about my disease.  He is however very interested in all the info I

print up for him on A/P and stated he would share it with other docs at his

next meeting. I guess this is a step in the right direction.  Meanwhile, I am

seriously looking for an A/P doc in Puerto Rico or an Infectious Disease Doc.

 Insurance here is different.  One must belong to a plan and the plan says you

need a referral to see a specialist and I have not found any as yet. I am here

only  6 months and have been winging it on my own.  I have not yet run into a

snag and hope I can find a reliable doc with knowledge of these diseases that I

trust before I do.  Take care all, Dolores 

 

I thought all lot more about what remission is because someone asked the

question.  I think and this is my opinion only, that when they begin to live a

normal life once again and do not feel like they are disabled by their illness,

they have reached their level of remission. I don't think of myself as

incapacitated any longer.  Of course, like all normal people, there are days

when I am under the weather and either, I have developed a cold, or an itch or

a rash or indigestion. Normal people do this all the time. I figure this is

a reaction to not listening to my body and maybe I overindulged at

dinner the night before, or I've caught the sniffles. Everything passes so

quickly, that I do not give it much thought.  I think that is a state of

remission.  I would like to hear how others view remission.  Dolores 

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 12:24 PM

 

Hi Deb,

I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

do you do lots of raw foods like juices and smoothies?

 have you heard of the Marshall Protocol? I wonder if you are a good candidate

considering that you are a high blood pressure patient.

mino can be replace by a tetracycline.

I wish my bp would allow me the use of benicar

thank for all the info,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Sun, June 20, 2010 5:59:31 AM

Subject: Re: rheumatic Weighing in on the issue

 

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back with

a lung transplant...because if his body is causing it...what stops his body from

the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I heard

from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Hi Ana,

Re the photopheresis, no I did not have any problems at all with it...it is

called a form of chemo...but since it is not giving me anything..more of a blood

cleaning, I had no issues...yeah, its boring sitting still for 2 hrs...and the

needle is big...but thats it...and remembering to hydrate myself so the blood

would flow well BUT not enough that I had to use the bathroom...now that is

tricky..other than that, no problems...I would absolutely do it again if I

needed it for the lung condition of Obliterative Bronchiolitis.

Yes, we do make lots of smoothies and juice frequently...

I think diet has alot to do with how we feel....so far, no pulmonary fibrosis in

my lungs...thank God for that...my breathing seems to be stable, my pulse ox is

stable at 99 or so...I continue to read and research...Dr. Whitman has changed

my meds just a little tweak here and there...I believe he changed my BP drug

last visit in early May...but I have not filled it yet...still using up the

Lisinopril...and No...I have not used Leviquin...I was prescribed it for an

upper respiratory...but after researching it, I decided against it...AND was

glad I did...turns out the Dr had dx'd a MRSA infection and she insisted I

needed Levaquin...I went to see my eye DR because my eyes began bothering me and

he was livid...he diagnosed Shingles...put me on an anti viral...and voila!! The

blisters and skin issue I had went away...so it was not MRSA...I had

shingles...ugh...glad I always ck anything prescribed..

Hang in there, Ana....Debbie

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Totally understand what you are saying Dolores ,, am sure though that you will

educate a doctor when you find one you like.  If I can even begin to educate my

own doctor who now wants to find out about AP as a treatment path for any new

patients he may see I am sure you can.  As he said to me 'the proof of the

pudding is in the eating & look at you' ..

We are in 32degF today & rain so Dolores please sit in the sun & have a cuppa

for me ,,, !!

Maz

 

 

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Wed, 23 June, 2010 3:24:49 AM

Subject: Re: rheumatic Weighing in on the issue

 

Hi Ana, I remember way back when Deb was first talking about photophoresis. At

the time, I had pulmonary fibrosis pretty badly and had asked Dr. Trentham about

it.  I had just started on A/P and he wanted to give it a little more time. 

In time, the damage to my lungs abated and so I dropped the subject, but I

always kept it in the back of my mind.  When I went to see Dr. Whitman, about

the Marshall Protocol, he was not too willing on the Benicar and said I could

substitute enalapril.  Since I was already on enalapril, I inquired at the

board of MP and was told that Benicar was used as a pallative for herxheimer

reactions and as a blockade.  They said if I didn't take the Benicar, I was not

considered to be on the MP.  I was in a quandry and didn't know what to do. 

So, I went to my GP and asked her what to do.  She said she would be willing to

monitor me completely through the MP and would give me scripts for Benicar. She

called Dr. Marshall

and got all the info from him.  I took the Benicar hesitantly and with

precaution.  She & I checked my B/P often and surprisingly it leveled out at

a 90/60.  That is a bit low, but because of the aneurysm, Doc wanted to keep

it on the low side as long as it didn't slip down any lower.  From then on, I

monitored my own B/P and when I saw that it would get a bit lower, I would pull

back on the dose of Benicar.  Eventually, I cut those in half.  It took two

years, but all the various antibiotics did do the trick of getting my blood

values back into the normal range.  Now, I just take 20mg of Benicar in the

morning and 20 mg in the evening along with dilitiazem 30mg twice a day. and

metoprolol100mg.  My pressures continue normally, so I hesitate to change and

go back to enalapril or discontinue anything unless I am monitored.  I am now

in Puerto Rico and have not yet found a doc who knows enough about this that I

can trust. I have a local doc

who will continue me on whatever scripts I have been taking. But he knows

nothing about my disease.  He is however very interested in all the info I

print up for him on A/P and stated he would share it with other docs at his

next meeting. I guess this is a step in the right direction.  Meanwhile, I am

seriously looking for an A/P doc in Puerto Rico or an Infectious Disease Doc.

 Insurance here is different.  One must belong to a plan and the plan says you

need a referral to see a specialist and I have not found any as yet. I am here

only  6 months and have been winging it on my own.  I have not yet run into a

snag and hope I can find a reliable doc with knowledge of these diseases that I

trust before I do.  Take care all, Dolores 

 

I thought all lot more about what remission is because someone asked the

question.  I think and this is my opinion only, that when they begin to live a

normal life once again and do not feel like they are disabled by their illness,

they have reached their level of remission. I don't think of myself as

incapacitated any longer.  Of course, like all normal people, there are days

when I am under the weather and either, I have developed a cold, or an itch or

a rash or indigestion. Normal people do this all the time. I figure this is

a reaction to not listening to my body and maybe I overindulged at

dinner the night before, or I've caught the sniffles. Everything passes so

quickly, that I do not give it much thought.  I think that is a state of

remission.  I would like to hear how others view remission.  Dolores 

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 12:24 PM

 

Hi Deb,

I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

do you do lots of raw foods like juices and smoothies?

 have you heard of the Marshall Protocol? I wonder if you are a good candidate

considering that you are a high blood pressure patient.

mino can be replace by a tetracycline.

I wish my bp would allow me the use of benicar

thank for all the info,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Sun, June 20, 2010 5:59:31 AM

Subject: Re: rheumatic Weighing in on the issue

 

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back with

a lung transplant...because if his body is causing it...what stops his body from

the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I heard

from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

The Benicar is a blood pressure medication and its' properties somehow block

herxes.  I don't know how exactly, but when the person is having a bad herx,

they encourage you to take a very large dose and add extras every 4 hours.  It

is scary, but it does work.  My cardiologist turned pale when she read this and

told me not to take such a large dose and Dr. Whitman preferred me to take

another B/P reduction medication called enalapril.  But Trevor Marshall said

that if I didn't follow the protocol as is, I would not be considered in the

protocol. So, I went on what they call the Benicar blockade at first.  It

calls for large doses of Benicar with no Minocin at first.  After a certain

amount of weeks, then you add the Minocin and then there are other antibiotics

that get introduced later.  It is divided into phases. As I went along, I

modified it because of my heart involvement.  I have an aneurysm I need to take

care of, by staying calm.and

keeping my blood pressure down.  I think tomorrow I will go onto the Marshall

site and ask the question re: the Benicar ans see if I can get a precise answer

for you.  I am still listed on their site as a member.  Dolores 

From: Maz <mazm_mm@...>

Subject: rheumatic Re: Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 8:57 PM

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

Hi Maz,

here you have the site for MP:

http://curemyth1.org/view_topic.php?id=2502 & forum_id=2 & jump_to=29043#p29043

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 5:57:00 PM

Subject: rheumatic Re: Weighing in on the issue

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

Thanks Dolores ...

If it's a blood pressure reducer of some description I too would have to be

really careful if I switched protocols because my blood pressure has always been

really low.

I was just thinking that by this coming Xmas I should maybe look to switching

protocols to hit whatever else is lurking inside. 

Will appreciate any feedback

Maz

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Wed, 23 June, 2010 11:54:12 AM

Subject: Re: rheumatic Re: Weighing in on the issue

 

The Benicar is a blood pressure medication and its' properties somehow block

herxes.  I don't know how exactly, but when the person is having a bad herx,

they encourage you to take a very large dose and add extras every 4 hours.  It

is scary, but it does work.  My cardiologist turned pale when she read this and

told me not to take such a large dose and Dr. Whitman preferred me to take

another B/P reduction medication called enalapril.  But Trevor Marshall said

that if I didn't follow the protocol as is, I would not be considered in the

protocol. So, I went on what they call the Benicar blockade at first.  It

calls for large doses of Benicar with no Minocin at first.  After a certain

amount of weeks, then you add the Minocin and then there are other antibiotics

that get introduced later.  It is divided into phases. As I went along, I

modified it because of my heart involvement.  I have an aneurysm I need to take

care of, by staying calm.and

keeping my blood pressure down.  I think tomorrow I will go onto the Marshall

site and ask the question re: the Benicar ans see if I can get a precise answer

for you.  I am still listed on their site as a member.  Dolores 

From: Maz <mazm_mm@...>

Subject: rheumatic Re: Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 8:57 PM

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

I know Ana, but there isn't a better way to find out about something than to

join a forum like this,

which is why I don't talk too much about the meds I am on.

I just wondered !

Sorry if anyone misunderstood my intentions being here,

Maz

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 12:31:11 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Hi Maz,

here you have the site for MP:

http://curemyth1.org/view_topic.php?id=2502 & forum_id=2 & jump_to=29043#p29043

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 5:57:00 PM

Subject: rheumatic Re: Weighing in on the issue

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

Maz,

benicar is a high blood pressure medication that is used for a totaly different

purpose in MP

in MP, it looks like benicar helps open the VDR, vit d receptor that is blocked

by L-forms and high levels of 1.25 D, the active form of vit d.

VDR is very important because it transcribes more than 900 genes and enzymes in

the healthy body

the above is a very simplified explanation.

if you want in depth reading material:

http://autoimmunityresearch.org/preprints/Proalls2009Preprint.pdf

Ana

 

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 8:00:23 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

I know Ana, but there isn't a better way to find out about something than to

join a forum like this,

which is why I don't talk too much about the meds I am on.

I just wondered !

Sorry if anyone misunderstood my intentions being here,

Maz

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 12:31:11 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Hi Maz,

here you have the site for MP:

http://curemyth1.org/view_topic.php?id=2502 & forum_id=2 & jump_to=29043#p29043

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 5:57:00 PM

Subject: rheumatic Re: Weighing in on the issue

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

Thanks for that Ana, will read it in a min.

Of course I know what the MP protocol is I just don't know why it is used or how

& what other than the obvious it is trying to target.

 

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 2:10:18 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Maz,

benicar is a high blood pressure medication that is used for a totaly different

purpose in MP

in MP, it looks like benicar helps open the VDR, vit d receptor that is blocked

by L-forms and high levels of 1.25 D, the active form of vit d.

VDR is very important because it transcribes more than 900 genes and enzymes in

the healthy body

the above is a very simplified explanation.

if you want in depth reading material:

http://autoimmunityresearch.org/preprints/Proalls2009Preprint.pdf

Ana

 

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 8:00:23 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

I know Ana, but there isn't a better way to find out about something than to

join a forum like this,

which is why I don't talk too much about the meds I am on.

I just wondered !

Sorry if anyone misunderstood my intentions being here,

Maz

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 12:31:11 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Hi Maz,

here you have the site for MP:

http://curemyth1.org/view_topic.php?id=2502 & forum_id=2 & jump_to=29043#p29043

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 5:57:00 PM

Subject: rheumatic Re: Weighing in on the issue

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

Maz,

here you have The Marshall Protocol explained :

http://mpkb.org/home/publications/proal_intro_to_mp_2008

Ana

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 9:13:26 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Thanks for that Ana, will read it in a min.

Of course I know what the MP protocol is I just don't know why it is used or how

& what other than the obvious it is trying to target.

 

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 2:10:18 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Maz,

benicar is a high blood pressure medication that is used for a totaly different

purpose in MP

in MP, it looks like benicar helps open the VDR, vit d receptor that is blocked

by L-forms and high levels of 1.25 D, the active form of vit d.

VDR is very important because it transcribes more than 900 genes and enzymes in

the healthy body

the above is a very simplified explanation.

if you want in depth reading material:

http://autoimmunityresearch.org/preprints/Proalls2009Preprint.pdf

Ana

 

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 8:00:23 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

I know Ana, but there isn't a better way to find out about something than to

join a forum like this,

which is why I don't talk too much about the meds I am on.

I just wondered !

Sorry if anyone misunderstood my intentions being here,

Maz

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 12:31:11 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Hi Maz,

here you have the site for MP:

http://curemyth1.org/view_topic.php?id=2502 & forum_id=2 & jump_to=29043#p29043

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 5:57:00 PM

Subject: rheumatic Re: Weighing in on the issue

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

Wow!  I didn't know it got that cold.  That would be cause for snow in N.Y. 

All the photos I have ever seen of Australia have been of a hot dry desert. 

The outback usually features aborigines living in a jungle like atmosphere.  Is

that the movie version? The city scenes look much like our metropolis in the

north.  And your beaches are gorgeous, but I understand full of sharks.  Do, I

have a wrong picture of Australia?  I have never seen snow scenes there. How

does Santa get his sleigh there in December when you are having summer.  Our

scenes of Christmas are of snow and Santa all bundled up in a warm red suit with

fur and boots and a hat with fur on it. For about 10 years, Mike and I played

Santa & elf  at different hospitals and schools for the children.  We were

volunteers for the huge party the NY Fire Department gave for the children who

lost loved ones during 9-11.  There was a huge toy drive and Mike and I were

dressed in

costumes and rode in on an old fashioned fire truck from the turn of the

century.  We had a blast that day.  We gave out presents for about 5-6

hours.  The kids were fabulous.  We also did private parties.  Last year was

the first year we didn't do it.  It is too difficult now that we are full time

care givers to mom. We find it difficult to get away for any length of time. 

How did I get from Magnesium to Australia and Sana Clause. it is late and I must

be rambling.  Take care, G'night, Dolores

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 12:24 PM

 

Hi Deb,

I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

do you do lots of raw foods like juices and smoothies?

 have you heard of the Marshall Protocol? I wonder if you are a good candidate

considering that you are a high blood pressure patient.

mino can be replace by a tetracycline.

I wish my bp would allow me the use of benicar

thank for all the info,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Sun, June 20, 2010 5:59:31 AM

Subject: Re: rheumatic Weighing in on the issue

 

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back with

a lung transplant...because if his body is causing it...what stops his body from

the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I heard

from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

[Guest guest]

Thanks Ana - if I ever need it I need to know what it is before committing.

 

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 2:20:18 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Maz,

here you have The Marshall Protocol explained :

http://mpkb.org/home/publications/proal_intro_to_mp_2008

Ana

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 9:13:26 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Thanks for that Ana, will read it in a min.

Of course I know what the MP protocol is I just don't know why it is used or how

& what other than the obvious it is trying to target.

 

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 2:10:18 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Maz,

benicar is a high blood pressure medication that is used for a totaly different

purpose in MP

in MP, it looks like benicar helps open the VDR, vit d receptor that is blocked

by L-forms and high levels of 1.25 D, the active form of vit d.

VDR is very important because it transcribes more than 900 genes and enzymes in

the healthy body

the above is a very simplified explanation.

if you want in depth reading material:

http://autoimmunityresearch.org/preprints/Proalls2009Preprint.pdf

Ana

 

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 8:00:23 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

I know Ana, but there isn't a better way to find out about something than to

join a forum like this,

which is why I don't talk too much about the meds I am on.

I just wondered !

Sorry if anyone misunderstood my intentions being here,

Maz

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Wed, 23 June, 2010 12:31:11 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

Hi Maz,

here you have the site for MP:

http://curemyth1.org/view_topic.php?id=2502 & forum_id=2 & jump_to=29043#p29043

Ana

________________________________

From: Maz <mazm_mm@...>

rheumatic

Sent: Tue, June 22, 2010 5:57:00 PM

Subject: rheumatic Re: Weighing in on the issue

 

As you know I am on AP not the MP protocol so am not entirely sure what the

Benicar is used for, could someone please tell me or point me to where I can

find out.

The purpose of my asking is that I know a few people who needed to swap over to

the MP protocol to finally put them into remission.

thanks,

Maz

>

> From: Ana Andrescu <anaandrescu@...>

> Subject: Re: rheumatic Weighing in on the issue

> rheumatic

> Date: Tuesday, June 22, 2010, 12:24 PM

>

>  

>

> Hi Deb,

> I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

> have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

> do you do lots of raw foods like juices and smoothies?

>  have you heard of the Marshall Protocol? I wonder if you are a good

candidate considering that you are a high blood pressure patient.

> mino can be replace by a tetracycline.

> I wish my bp would allow me the use of benicar

> thank for all the info,

>

> Ana

>

> ________________________________

> From: DEBBIE GIBSON <Debbullwinkle@...>

> rheumatic

> Sent: Sun, June 20, 2010 5:59:31 AM

> Subject: Re: rheumatic Weighing in on the issue

>

>  

> HI Ana,

> Yes, I have been off mino for several years now....I am, at present, not on

any abx...altho it seems that several times a year, I get an upper respiratory

and then am usually on a couple abx before that goes away...usually 6-8 weeks...

> I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

> Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

> Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

> Probably more info that you had requested...but whenever I mention

photopheresis I like to explain what it is or several members ask...Hope this

email helps..

> Re the Weighing in on the Issue letter...thank you for your comment...I see

that one person seemed to be upset about it...which I was a bit confused

about....I basically reiterated that we are all scared when first dx and it

takes many of us time to come to these conclusions or to be willing to go

against what traditional physicians offer...Being DX'd is a veryyyy scary

time...I feel for anyone having to make these tough decisions...Deb

> rheumatic Weighing in on the issue

>

> Hey everyone,

> Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

> As a long time BB member and long time SD and RA patient...I have seen it all

here....

> We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

>

> Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

> Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

> Sometimes, for whatever reasons, patients are reluctant to go against what

their DRs recommend...we all know that...those of us who have been ill a while

know we have to make our own decisions...for some....like my mom for example,

she takes whatever her DRs tell her to take...I feel like I have earned my

wisdom through trial and error, what works for me, listening to my body and

asking for and receiving the great support and help on this board...Ethel has

been a Godsend and not just about abx protocol but about juicing, detoxing,

coffee enemas, etc...

> Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

> One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

>

> Lets not get bogged down in being judgemental of others...we each have to

reach conclusions on our own, in our own time. You know the old saying, you can

drag a horse to water but you can't make them drink...there you go...

>

> Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

> drugs...ok....no concrete evidence that the lung disease will not come back

with a lung transplant...because if his body is causing it...what stops his body

from the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I

heard from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

>

> My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

> I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

> Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

>

> Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)

>

>

[Guest guest]

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Wed, 23 June, 2010 2:35:43 PM

Subject: Re: rheumatic Weighing in on the issue

 

Wow!  I didn't know it got that cold.  That would be cause for snow in N.Y. 

All the photos I have ever seen of Australia have been of a hot dry desert. 

The outback usually features aborigines living in a jungle like atmosphere.  Is

that the movie version? The city scenes look much like our metropolis in the

north.  And your beaches are gorgeous, but I understand full of sharks.  Do, I

have a wrong picture of Australia?  I have never seen snow scenes there. How

does Santa get his sleigh there in December when you are having summer.  Our

scenes of Christmas are of snow and Santa all bundled up in a warm red suit with

fur and boots and a hat with fur on it. For about 10 years, Mike and I played

Santa & elf  at different hospitals and schools for the children.  We were

volunteers for the huge party the NY Fire Department gave for the children who

lost loved ones during 9-11.  There was a huge toy drive and Mike and I were

dressed in

costumes and rode in on an old fashioned fire truck from the turn of the

century.  We had a blast that day.  We gave out presents for about 5-6

hours.  The kids were fabulous.  We also did private parties.  Last year was

the first year we didn't do it.  It is too difficult now that we are full time

care givers to mom. We find it difficult to get away for any length of time. 

How did I get from Magnesium to Australia and Sana Clause. it is late and I must

be rambling.  Take care, G'night, Dolores

From: Ana Andrescu <anaandrescu@...>

Subject: Re: rheumatic Weighing in on the issue

rheumatic

Date: Tuesday, June 22, 2010, 12:24 PM

 

Hi Deb,

I remember reading about photophoresis and its benefits for ra years ago. did

you experience any problems with it?

have you tried levaquin for the respiratory tract? I find that two weeks of

levaquin helps me get over a bad episode of RTI

do you do lots of raw foods like juices and smoothies?

 have you heard of the Marshall Protocol? I wonder if you are a good candidate

considering that you are a high blood pressure patient.

mino can be replace by a tetracycline.

I wish my bp would allow me the use of benicar

thank for all the info,

Ana

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Sun, June 20, 2010 5:59:31 AM

Subject: Re: rheumatic Weighing in on the issue

 

HI Ana,

Yes, I have been off mino for several years now....I am, at present, not on any

abx...altho it seems that several times a year, I get an upper respiratory and

then am usually on a couple abx before that goes away...usually 6-8 weeks...

I am not on any of the chemo or usual drugs....I take B 12 supplement, a good

probiotic, fish oil, an 81 mg asp 3xa week, and a low dose statin, 10 mg every

other day...and my BP med, lisinopril daily....I also juice, watch what I eat

and get exercise daily, especially now in the summer....our pool is open and I

try to walk and do aerobic workouts each day.

Dr. Whitman...all of my Drs were veryyyy leery of my taking minocin

again...because of the lung condition I developed...it has been seen in some of

the studies done in RA patients on minocin and in studies of Acne patients using

Mino...We were never sure the lung condition was caused by the mino or my

RA....but....they were cautious and took me off...DR W has said that he may

introduce if I start to go downhill...right now I seem to be stable so he sees

no reason to reintroduce minocin and risk the lung condition raging back...I was

fortunate to be able to battle our ins company and get the treatment to stop the

lung condition, photopheresis...it is veryyyy expensive and only used in T Cell

lymphoma...I did receive photopheresis for 3.5 yrs and my lung condition has

abated...

Dr Whitman had me go to Yale for my first tx of photopheresis....They have

several machines and actually have several SD patients with lung conditions

being treated with photopheresis. While it is a form of chemo, it is not

anything toxic they give you....photopheresis is a process where, they hook you

up to a machine and draw out about a cup of your blood at a time, wash it of the

T Cells making you ill...and continue that process for several cycles..then at

the end of about 2 hrs...they give it back to you minus the cells that are

causing the SD...You are hooked up via IV for a couple hours...Big needle....but

really...no hair loss, no vomiting, just tired...I felt great the entire time I

received the treatment and did quite well...

Probably more info that you had requested...but whenever I mention photopheresis

I like to explain what it is or several members ask...Hope this email helps..

Re the Weighing in on the Issue letter...thank you for your comment...I see that

one person seemed to be upset about it...which I was a bit confused about....I

basically reiterated that we are all scared when first dx and it takes many of

us time to come to these conclusions or to be willing to go against what

traditional physicians offer...Being DX'd is a veryyyy scary time...I feel for

anyone having to make these tough decisions...Deb

rheumatic Weighing in on the issue

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection

drugs...ok....no concrete evidence that the lung disease will not come back with

a lung transplant...because if his body is causing it...what stops his body from

the OB attacking his new lungs??? Ah well...I tried, I tried hard...last I heard

from him, he was still waiting for his lungs and on veryyy high doses of

steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)