Re: Weighing in on the issue

[Guest guest]

This is an excellent piece.  My printer is broken, but as soon as I can get to

the library, I will get it printed to have as a study guide.  Thank you,

Dolores

From: Maz Maz <mazm_mm@...>

Subject: Re: rheumatic Re: Weighing in on the issue

rheumatic

Date: Wednesday, June 23, 2010, 12:51 AM

 

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]

I printed it off straight away & read it last night - this is a great

explanation, thanks.

Will keep it on file for future use.

 

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Wed, 23 June, 2010 6:02:10 PM

Subject: Re: rheumatic Re: Weighing in on the issue

 

This is an excellent piece.  My printer is broken, but as soon as I can get to

the library, I will get it printed to have as a study guide.  Thank you,

Dolores

From: Maz Maz <mazm_mm@...>

Subject: Re: rheumatic Re: Weighing in on the issue

rheumatic

Date: Wednesday, June 23, 2010, 12:51 AM

 

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)

>

>