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Re: What Australia is like in answer to Dolores' post

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Another perspective :::

If I got on a 747 flight & headed due north, if we flew 7 hrs we would

still not have reached the top of Australia.  Where would you all get to if

you flew 7 hrs ??? 

 

________________________________

From: Maz Maz <mazm_mm@...>

rheumatic

Sent: Thu, 24 June, 2010 10:26:41 AM

Subject: rheumatic What Australia is like in answer to Dolores' post

 

I nearly fell of my chair laughing ... I think everyone the world over thinks of

Australia as the 'sunburned country' with tropical rainforests &  nothing

else..lol  What people don't realise is how big we are & don't really

understand where we are on the globe.  Now you may need an atlas or globe to

understand .... when you look at Australia, the bottom right corner (where I

live) it is about 3000 miles from us to the the top right point (of Oz as

it looks on a map). Going from the bottom up, about 1/3 up is the bottom of New

South Wales which ranges from snow peaks in the south & minus deg F in winter

to 90+ in summer, to a climate that ranges from 50degF in the winter to 90+ F in

summer & humid.. then up into Queensland where there aren't too many people who

even own a jumper & then as you head up you are going right up into the

tropics.  Now because of the way Australia sits on the globe Western Australia

ranges from around 65degF in

winter on their coldest days to 100+F for 3/4 of the year.  The centre of

Australia is desert.  Coober Pedy, for instance, is 525 miles due north of

Adelaide, which is opal country, the majority of the the houses are built

 underground (because of the heat) & temperatures can go up to 150degF but

humidity rarely goes over 20%. 

There is no doubt about it Australia is a country of widely varying temperatures

& terrain.  

Not having seen your TV footage I am guessing what you be shown would be our

lovely northern rainforests & some shots of perhaps inland Queensland & inland

Northern Territory or outback Western Australia -- the beaches everywhere are

just beautiful.

We of course because of climate have sharks here but considering our vast

expanse of oceans don't have too many problems with them (not as many as South

Africa).  The majority of or population would be aware of sharks & know when &

not to go into the water, sharks for instance love to come out on dusk for a

feed, then they mistake someone in a wetsuit or swimming for food.  Up into

Queensland & the Northern Territory however is the other kettle of fish, you

certainly don't want to go swimming in any of our rivers ,, because of

crocodiles !!  they are in all our river systems up there, but again most of

the problems have come from strangers to the area not paying attention to the

signs & camping right on the river front ... stupidity!

Now as for Santa he comes & he has his suit on & climbs down chimneys or in

windows to leave his presents for the children ... but at our house my husband

needs to get his biggest boots on whilst carrying a container of talcum powder &

sprinkle as he steps from the front carport to the doors & windows to leave

footprints for Oliver (my 5 yr old grandson) to find.  At our house our Xmas

lunch usually consists of prawns, crayfish, ham, hot chicken &  lamb & salads &

we sit outside in the BBQ area with sprinklers placed on the roof & turned on to

keep it cool & turn on every portable fan we can find to shoo away the flies &

mosquitoes.  But having said that, the majority of people still do the whole

traditional turkey thing just as you do.

 Hope you get a clearer picture now.

Maz

ps apologies to everyone we deal in kilometers but I converted my distances to

miles for you to understand.

 

________________________________

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)

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Hi Maz, I loved it.  I felt like I was listening to a documentary.  The USA

is 3,000 miles wide and most US citizens have never seen all the 48 contiguous

states nor been to Hawaii or Alaska. I have a lamp that is a globe.  Later on,

I will check it out and see what you are talking about.  Thank you for the

tour.  Yikes, crocodiles!  Alligators are one reason we don't like Florida. 

Heard on the news the other morning they found one on the grounds of the High

School in Tampa.  I like Puerto Rico.  No venomous snakes and no crocs. No

bears, no coyotes, no bob cats, etc.  We have millipedes or centipedes, but

they are higher up in the mountain and won't bother you if you don't bother

them.  Besides, the chickens eat them.  So, most people have a few chickens in

the yard..We do have fire ants that bite.  There is some powder you can toss

around your yard that will keep the population down.  And we have iguanas who

don't bite as they are

not carnivorous, however, they like to whip you with their tales, if you get

too close.  We have small lizards and geckos.  I love to watch them do push

ups.  We also have a resident frog family in the yard.  Thanks for the tour of

Australia.  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)

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Posted
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Glad you liked it -- my idea was site unseen to give you a better understanding

of what our country is so when I say something you will have an idea.

As to 3000 miles E to W I guess as a visitor then I have seen more than most

them then ... I arrived in LA grabbed a hire car & travelled up to Vancouver

across to Ottowa then by bus from Ottowa to Sth Carolina spent about 3 wks on

the sand then back to a hire car again & criss crossed as far as time would let

me before having to fly home .. I had done the same travelling in Canada ..

but sadly for me didn't get to Alaska (which is somewhere I would love to go). 

Oh & I flew into Hawaii for 2 wks of sun before heading home.  I can tell you

funny story though, when I arrived in London I hired a car for 2 wks; when I

gave it back it had done just under 3,000 miles .. the man who hired it to me

was shocked, it was only then he asked me where I was from, I said Australia, he

replied he wouldn't have given me any car if he had known that (he knew we were

used to travelling long distances without thinking about it...lol) ( & remember

UK is only I think

about 550 miles from top to bottom).  In Oz we are used to travelling to get

anywhere, our public transport system is pittiful so you need a car, when my

children were very little I lived in Brisbane Queensland & one Xmas my sister

said we had a family emergency & needed me home in Melbourne so I just

put the children & a couple of suitcases in the car & was on the road in about

1/2 hr .. I arrived in Melbourne 19 hrs later.  Now I am not saying that is the

norm, for fatigue I should have stopped but didn't, but the message I am trying

to get across is that we don't think anything about doing that. 

 

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Thu, 24 June, 2010 10:44:56 AM

Subject: Re: rheumatic What Australia is like in answer to Dolores' post

 

Hi Maz, I loved it.  I felt like I was listening to a documentary.  The USA

is 3,000 miles wide and most US citizens have never seen all the 48 contiguous

states nor been to Hawaii or Alaska. I have a lamp that is a globe.  Later on,

I will check it out and see what you are talking about.  Thank you for the

tour.  Yikes, crocodiles!  Alligators are one reason we don't like Florida. 

Heard on the news the other morning they found one on the grounds of the High

School in Tampa.  I like Puerto Rico.  No venomous snakes and no crocs. No

bears, no coyotes, no bob cats, etc.  We have millipedes or centipedes, but

they are higher up in the mountain and won't bother you if you don't bother

them.  Besides, the chickens eat them.  So, most people have a few chickens in

the yard..We do have fire ants that bite.  There is some powder you can toss

around your yard that will keep the population down.  And we have iguanas who

don't bite as they are

not carnivorous, however, they like to whip you with their tales, if you get too

close.  We have small lizards and geckos.  I love to watch them do push

ups.  We also have a resident frog family in the yard.  Thanks for the tour of

Australia.  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)

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Posted

Hm 6 hours from NY to Los Angeles, probably 7 hours to San Francisco.  More to

Alaska. and Hawaii would require a stop in L.A. first then 5 hours from there. 

It took us 5 hours to fly from NYC to Cancun and 6 hours to London, 7 hrs. to

Paris from NYC.  It took 6 hours to fly back to NYC from southern Spain.  45

min. From NY to Boston and 3 hours to land because of so much traffic. The bus

would have been faster that night. 2.5 hrs. from Orlando, Fl., to San ,

Puerto Rico.  My next trip is a cruise. I do not like flying.  I do not like

sitting in a cubbyhole of a seat strapped most of the way without any decent

food.  most of the time I have already seen the movie and I get bored looking

at clouds.  On a cruise, I can eat, walk the decks, watch a live show, play in

a casino, listen to the band, get in some dancing do some swimming, meet people

and take a nap when I feel like it. And they don't lose my luggage because it

is with me in my

room.  When I get to port, I can go on a tour, go snorkling, see the sights

and buy souvenirs and taste a local drink.  Don't have to rent a car usually or

look for a hotel.  Yep, The cruise is for me.  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)

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Posted
Posted

When I was young, I also loved to drive.  I drove cross country several times.

Now that I am old, you couldn't get me to drive across town.  I loved the

transportation in europe.  We took the rail everywhere and then when we got to

Greece. It was ships.  Every large European city has its' underground railway

system and buses.  Puerto Rico has no transportation system except for San

.  They have a rail that goes around in a circle and gets nowhere.  Not

worth the climb up the stairs.  You need a car in P.R.~~~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)

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You are entirely welcome Dolores,

I wouldn't have the space to write down all our wildlife here ,,, but suffice to

say we have of course kangaroo's & wallabies, goanna's (which are big

lizards), more snakes than you could poke a stick at, a couple of them reputed

to be the deadliest snakes in the world, koalas's of course &  everything

else.  We own 101 acres of pristine forest on the river front & use it to camp

over summer, it's not uncommon to see a herd of 30 kangaroo's in the distance

or when you are driving to see a big goanna or wombat ahead crossing the road &

give them a wide berth.  Our wildlife is really something to see ...

Spiders are the thing here, visitors to Australia are most often terrified of

our spiders, the biggest of them of course are in Queensland & the tropics  &

of course visitors always want to visit the Great Barrier Reef so they are in

Queensland.....lol   of course most of them we don't even see (because we am

used to them I guess) but there are a couple that are deadly without any known

anti-venom.

At home we too have frogs aplenty (being that we live on an acre of land &

have 4 rock pools in our garden) & lots & lots of birds that nest in our trees

... from the ordinary sparrows & magpies to the exotic honey eaters & finches

etc.  We also have 2 families of micobats who have made their home in our big

trees out the back, (they are really tiny, you could fit 5 or 6 in the palm of

your hand)..  & in summer we have 2 flocks of yellow tailed black cockatoos

come in, eat our pine nuts & teach their babies to fly before heading north

(they are an endangered species)

It's really a paradise if you know what to look for.  I wish you could come

&  I could just throw you in the car & take off for a month or so to see a

little bit of what we have to offer.   

You never know what the future holds, I just might get to Puerto Rico some time

& surprise you both.

  

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Thu, 24 June, 2010 10:44:56 AM

Subject: Re: rheumatic What Australia is like in answer to Dolores' post

 

Hi Maz, I loved it.  I felt like I was listening to a documentary.  The USA

is 3,000 miles wide and most US citizens have never seen all the 48 contiguous

states nor been to Hawaii or Alaska. I have a lamp that is a globe.  Later on,

I will check it out and see what you are talking about.  Thank you for the

tour.  Yikes, crocodiles!  Alligators are one reason we don't like Florida. 

Heard on the news the other morning they found one on the grounds of the High

School in Tampa.  I like Puerto Rico.  No venomous snakes and no crocs. No

bears, no coyotes, no bob cats, etc.  We have millipedes or centipedes, but

they are higher up in the mountain and won't bother you if you don't bother

them.  Besides, the chickens eat them.  So, most people have a few chickens in

the yard..We do have fire ants that bite.  There is some powder you can toss

around your yard that will keep the population down.  And we have iguanas who

don't bite as they are

not carnivorous, however, they like to whip you with their tales, if you get too

close.  We have small lizards and geckos.  I love to watch them do push

ups.  We also have a resident frog family in the yard.  Thanks for the tour of

Australia.  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)

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Posted
Posted

Exactly, so you get the idea now --- we are a big country!  There was one day

when I lived in northern Italy I hopped a train & went to Venice to see a friend

of mine, we decided to head down to Germany to see more friends, finished up in

France at a nightclub that night & headed home all in one day.   I loved it!

The idea of a cruise really appeals to me but my husband won't go on one, he

says he will get really bored! he likes driving & seeing the countryside.  When

we go to Bali for instance we get up early (as usual) have breakfast & just walk

& walk talking to the local people, in & out of markets then head back to the

hotel for a bit of R & R, sunshine & beach/pool before getting dressed to go out

for dinner etc .. or hire a car & driver & go inland to see something new away

from the touristy areas -- being on a boat wouldn't be his thing ... BUT I on

the other hand would soooo enjoy it !!!  Lucky you ... going on a cruise, can I

come?

 

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Thu, 24 June, 2010 11:04:53 AM

Subject: Re: rheumatic What Australia is like in answer to Dolores' post

 

Hm 6 hours from NY to Los Angeles, probably 7 hours to San Francisco.  More to

Alaska. and Hawaii would require a stop in L.A. first then 5 hours from there. 

It took us 5 hours to fly from NYC to Cancun and 6 hours to London, 7 hrs. to

Paris from NYC.  It took 6 hours to fly back to NYC from southern Spain.  45

min. From NY to Boston and 3 hours to land because of so much traffic. The bus

would have been faster that night. 2.5 hrs. from Orlando, Fl., to San ,

Puerto Rico.  My next trip is a cruise. I do not like flying.  I do not like

sitting in a cubbyhole of a seat strapped most of the way without any decent

food.  most of the time I have already seen the movie and I get bored looking

at clouds.  On a cruise, I can eat, walk the decks, watch a live show, play in

a casino, listen to the band, get in some dancing do some swimming, meet people

and take a nap when I feel like it. And they don't lose my luggage because it

is with me in my

room.  When I get to port, I can go on a tour, go snorkling, see the sights and

buy souvenirs and taste a local drink.  Don't have to rent a car usually or

look for a hotel.  Yep, The cruise is for me.  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)

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Posted
Posted

Sure,  You'll have to meet us in P.R. first.  The boat docks in San . 

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)

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Posted
Posted

Wow!  101 acres. that sounds amazing.  I have never seen a wombat.  You would

be most welcome to come to P.R. anytime.  We have absolutely no wild life here

except maybe if the neighbors get to fighting.  It hasn't happened yet, but one

never knows.  If you ever decide, practise up on your spanish as that is the

dominant language here.  Poor Mike used to answer the phone with Hello and the

people would hang up on him.  Now, he says Hola!  And then puts me on the

phone. I am not fluent, but most of the time I can hold a somewhat conversation

and between their broken English and my broken Spanish, we figure out why the

call was made. I have Mom to care for, so it doesn't look like I will ever get

to Australia.  What made your parents take you to Australia when you were 7. 

Do you remember what it was like in Scotland back then?  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)

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Posted
Posted

Oh dear me .. it was such a long time ago, but yes I remember Scotland & I

remember certain things & certain people but not much from when I was little ,,

my memories now are from my trips back there.  My parents actually put in the

papers to immigrate to Australia before I was born, then WWII broke out &

everything stopped, then my father was away for 7 yrs (because he was stationed

behind German lines & couldn't get out initially) then I was born etc, my

parents had actually given up being able to come here ... when I was 7 they got

notification & had a month to make up their minds if they still wanted to go ..

my sister was 19 at the time, so they said yes & she suddenly got married

because they were in love & we came here by ship.  My dad was a 'cooper' by

trade & we were scheduled to get put off in South Australia so he could work at

the brewery there or one of the vinyards (they have a really vast wine area down

there) but there was a mistake &

they were disembarked in Melbourne ... my parents didn't know any better so

stayed here.

I still have some family in Scotland & England as well as an aunt & her family

in Ottowa an uncle in Toronto & step sister & her family in Vancouver as well

as yet another aunt & her family in South Africa ... so I could pretty much

family hop to see most of the world without having to pay for hotels....lol  

Add to that the friends I now have since I got sick & went onto AP in LA, NY &

now you in PR.  I guess I am a lucky woman.

If I never go outside Australia again I have had just the best life !!

 

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Thu, 24 June, 2010 12:03:29 PM

Subject: Re: rheumatic What Australia is like in answer to Dolores' post

 

Wow!  101 acres. that sounds amazing.  I have never seen a wombat.  You would

be most welcome to come to P.R. anytime.  We have absolutely no wild life here

except maybe if the neighbors get to fighting.  It hasn't happened yet, but one

never knows.  If you ever decide, practise up on your spanish as that is the

dominant language here.  Poor Mike used to answer the phone with Hello and the

people would hang up on him.  Now, he says Hola!  And then puts me on the

phone. I am not fluent, but most of the time I can hold a somewhat conversation

and between their broken English and my broken Spanish, we figure out why the

call was made. I have Mom to care for, so it doesn't look like I will ever get

to Australia.  What made your parents take you to Australia when you were 7. 

Do you remember what it was like in Scotland back then?  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)

Link to comment
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Posted
Posted

      

 

 

This has been such a lovely evening.  I virtually traveled everywhere without

leaving my chair, Thank You, 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)

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