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I'm curious, too, Diane, whether the scleroderma symptoms would have

eventually appeared, with or without the MTX. My daughter also has the

systemic type. It has been two and a half years since the diagnosis. In

her case, though, the skin tightening was apparent from the git-go; of

course, it got worse. You didn't mention Raynaud's phenomenon. You do

have it, don't you? My understanding of the Raynaud's is that you can have

it without having SD; however, if you have SD you DEFinitely will have it.

Ellen McCool

rheumatic scleraderma

I have scleraderma also, have had for 12 years. Always seemed under control

with not too much going on other then some infections in the joints etc.

Never any internal problems although diagnosed from the beginning with

systemic. Also took methotrexate for like 11 years and was on the AP for two

years. Had a doctor put bug in my ear that I probably didn't need the

methotrexate anymore because the disease should be dormant by now or whatever

you want to call it. So I went off the mtx for 9 months and stayed on the

AP. Little odd things started bothering me like tingling sensations in my

legs, tendons etc. Then at around nine months the skin on my foot started

getting tight, never had that before then my left arm all the way up got

tight, only had hand and half way up the forearm from the beginning but had

soften 75 percent. So I go back on the mtx and doctors start ordering tests

like chest x-rays EKG's echo's pft's cat scan of lungs. All abnormal

somewhat, mild pulmonary hypertension, increased density at the base of the

lungs, too much fluid around the heart but after checkup they said it wasn't

causing any problems at this time. Well, at 39 and having scleraderma for 12

years I thought I was passed the point of this crap happening, being that is

usually rule of thumb but, unfortunately for me not.

Now my doctor, I now go to U of M Ann Arbor, has scheduled me for other test

but doesn't want me on the mtx because he says he is not sure if the stuff he

is seeing in my lungs is from the mtx or the scleraderma. He said if I am

that comfortable with the mtx I can take Imuran instead that has been around

long time and doesn't cause lung problems. Curious why I never heard of this

drug before.

Need to find out whats causing the lung thing before treatment I guess but he

said it was mild.

I'm confused, but I cannot dish the mtx because I was fine for 12 years on it

and all hell broke loose 9 months after discontinuing it. Maybe it would

have happened anyway I don't know but I wish I would have listened to my

mother and not my doctors about stopping it. I think she was right.

Sorry about length just needed to vent.

Diane

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  • 7 months later...

I am not real clear on some of his " levels " being high or low. However, I

can say that the purpose of the IV's is to " shock " the infectious agent and then

the antibiotic protocol is a slow but effective attack against it. It would

be good to read the " Road Back " and the actual protocol. The pulse therapy is

effective for RA but the daily regimen and at least weekly IV's seems to be

more effective for SSC. Since he hurt his back, that trauma to the body may

well have exascerbated the Scleroderma immune system response. That may make

his condition much more serious but, as he can, he needs to pick up the pace to

fight the disease. At first, the first yr or two, alot of it is WILL. After

that it seems that most patients establish a level of functionality and deal

with the disease as best they can from there. My experience was similar to

others so I feel that more often than not we can be successful. The only

shortcoming that seems to come up is that some equate success with total

recovery or

remission. My family (and I) equate increased functionality with success and

I think that is why we continue to have success. I continue to increase my

ability to do things and find joy in so doing. I've come from not being able to

go to the toilet w/o assistance to going on cruises and watering the yard for

exercise. So I guess success is relative. I shower myself, clothe myself,

and feed myself. Those are all things I needed help with 3 yrs ago. A

positive attitude, appreciation for the caregivers, and little successes make

the

overall problem of Scleroderma not an insurmountable obstacle but more a fact of

life that we have to deal with. We wish you " success " in your daily battles.

Some days are better than others but be thankful for the battles because it

means you have not lost the WAR. Marc SSC 7 yrs AP 6 1/2 yrs

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My improvement has been gradual but I still feel that I am doing more as time

passes. Five months ago I couldn't reach my feet to latch my velcro shoes.

It has gotten to the point where I can lift my feet up to a chair and then I

can reach them with my hands. Both of those movements get easier as I practice.

Whether or not it is spontaneous or AP related I don't know. I do know that

when I don't have the IV's or back off of the antibiotics I began to feel

worse and become less and less functional. That is how I measure it. I had

only

33% of lung function in 1996 and 1998 and 2000. My greatest hdcp right now

is breathing related. I was on oxygen for about a yr during 2000 but I haven't

used oxygen since about Jan 2001. Is that progress? We think so. Is it the

AP? I also think so. Does it work for everyone? Evidently not. Does it

work for most? Absolutely! Do I recommend it for everyone? No, I encourage

them to read up on it, talk to some who have tried it, and talk to their doctor

with an informed mind. Then, they have to decide what they want to do. I

also encourage them to have their doctors to be candid about the side effects of

the chemo drug approach. All in all, I feel that there are very few that do

not benefit some from the AP. My previous comments were based on reading and

listening to this site and the Scleroderma Foundation sites. Alot has to do

with EXPECTATIONS and that's why I relate success to functionality.

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  • 1 year later...
  • 1 year later...

Yes, I have scleroderma. I have

crest syndrome. Found ldn for my son, with ms. I have been on it

since Sept and it has made an incredible difference. I also have sjrogren’s

syndrom and fibromyalgia also. My reynaud’s is 100% better, and it

was very bad, and my swollowing is much better. I have much better energy

and 100% improvement in pain and swelling. I made a list for another gal

with scleroderma, and can forward that to you if you like. Conni

[low dose naltrexone]

Scleroderma

Anyone

here with a diagnosis of scleroderma using LDN?

If so,

what are your experiences with it?

Any old

posts on the sbject?

thanks

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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Hi Conni,

Could you please send me a copy of the list too so that I may save it and share it with anyone that gets on the site asking for info on scleroderma.

Congratulations on your renewed health, that is great news

Aletha

RE: [low dose naltrexone] Scleroderma

Yes, I have scleroderma. I have crest syndrome. Found ldn for my son, with ms. I have been on it since Sept and it has made an incredible difference. I also have sjrogren’s syndrom and fibromyalgia also. My reynaud’s is 100% better, and it was very bad, and my swollowing is much better. I have much better energy and 100% improvement in pain and swelling. I made a list for another gal with scleroderma, and can forward that to you if you like. Conni

-----Original Message-----From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of foxhillers@...Sent: Monday, October 30, 2006 8:38 AMlow dose naltrexone Subject: [low dose naltrexone] Scleroderma

Anyone here with a diagnosis of scleroderma using LDN?

If so, what are your experiences with it?

Any old posts on the sbject?

thanks

mjh"The Basil Book"http://foxhillfarm.us/FireBasil/

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Wow, I wondered if LDN would also be an effective tx for

Scleroderma/Systemic Sclerosis as to date it's still not listed on

http://www.low dose naltrexone.org & I had not seen many posts despite

it being considered an autoimmune dz.

I'm so happy for you Conni! How long ago were you dx with CREST & how

many weeks have you been on LDN 4.5 mg qhs?

Has it helped your Sjogren's & fibromyalgia also & when were those

diagnosed/symptoms begin?

Really so your severe raynauds is 100% better since LDN, that's great,

are you still taking other meds/tx for it?

I had read people with rheumatoid arthritis report significant

improvement of their raynauds & pain (but never saw SSc mentioned) &

that elevated ANAs would normalize with LDN.

I had wondered if the lack of posts had to do with LDN being

considered too late. Can you upload your list to the Files section?

I wish you the best of luck, continued success & would be interested

in your full treatment regimen & treatment hx if you care to share that.

Best Wishes, Josh

>

>

>

>

>

> Yes, I have scleroderma. I have crest syndrome. Found ldn for my son,

> with ms. I have been on it since Sept and it has made an incredible

> difference. I also have sjrogren's syndrom and fibromyalgia also. My

> reynaud's is 100% better, and it was very bad, and my swollowing is much

> better. I have much better energy and 100% improvement in pain and

> swelling. I made a list for another gal with scleroderma, and can

forward

> that to you if you like. Conni

>

> [low dose naltrexone] Scleroderma

>

>

>

> Anyone here with a diagnosis of scleroderma using LDN?

>

>

>

> If so, what are your experiences with it?

>

>

>

> Any old posts on the sbject?

>

>

>

> thanks

>

>

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

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Sorry, I guess the upload feature is currently not enabled in the

Files section:

low dose naltrexone/files

http://help./help/us/groups/files/

Perhaps I'll email /moderator to see if that would be possible.

In the interim, feel free to email the list to me but I thought the

group/LDN site could benefit from new LDN applications being more

publicly accessible.-Thanks

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>

> Wow, I wondered if LDN would also be an effective tx for

> Scleroderma/Systemic Sclerosis as to date it's still not listed on

> http://www.low dose naltrexone.org & I had not seen many posts despite

> it being considered an autoimmune dz.

>

==========

The reason scleroderma is not listed on the LDN site is no one with

that ailment has come to be treated by Dr. Bihari, yet Bihari feels

LDN will help all autoimmune diseases. He's not ever treated Post

Polio with LDN but feels LDN will help that disease.

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Yes, please. I would appreciate that.

mjh"The Basil Book"http://foxhillfarm.us/FireBasil/

Re: Scleroderma

Posted by: "Conni Lawrence" summerwind1@...

Mon Oct 30, 2006 7:21 am (PST)

Yes, I have scleroderma. I have crest syndrome. Found ldn for my son,with ms. I have been on it since Sept and it has made an incredibledifference. I also have sjrogren's syndrom and fibromyalgia also. Myreynaud's is 100% better, and it was very bad, and my swollowing is muchbetter. I have much better energy and 100% improvement in pain andswelling. I made a list for another gal with scleroderma, and can forwardthat to you if you like. Conni-----Original Message-----From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of foxhillersaolSent: Monday, October 30, 2006 8:38 AMlow dose naltrexone Subject: [low dose naltrexone] SclerodermaAnyone here with a diagnosis of scleroderma using LDN?If so, what are your experiences with it?Any old posts on the sbject?thanks

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I did call Dr. Bilhari's office when I first read about LDN, and Bill said

that ldn would work for scleroderma. I am forwarding my list of

improvements using LDN. I think it has helped with all of my symptoms and I

just have to say I feel like I too have my life back. My husband can notice

it in my overall disposition. I feel more outgoing and happier. I think

the constant pain, although I thought I was dealing well with it, was taking

its toll on me. I was very frustrated by the lack of energy and stamina as

I am sure you all are too. I felt much better within days, and feel my body

is working correctly. I feel put together right, and all functions are

working better. Conni

[low dose naltrexone] Re: Scleroderma

>

> Wow, I wondered if LDN would also be an effective tx for

> Scleroderma/Systemic Sclerosis as to date it's still not listed on

> http://www.low dose naltrexone.org & I had not seen many posts despite

> it being considered an autoimmune dz.

>

==========

The reason scleroderma is not listed on the LDN site is no one with

that ailment has come to be treated by Dr. Bihari, yet Bihari feels

LDN will help all autoimmune diseases. He's not ever treated Post

Polio with LDN but feels LDN will help that disease.

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Josh, please read the other email I sent and let me know if you have any

other questions.

Althea, and Josh, can you copy the list of things that I wrote. Josh, do

you know some one with scleroderma? Let me know if you have any other

questions, or I can help. Thanks so much. Conni

[low dose naltrexone] Scleroderma

>

>

>

> Anyone here with a diagnosis of scleroderma using LDN?

>

>

>

> If so, what are your experiences with it?

>

>

>

> Any old posts on the sbject?

>

>

>

> thanks

>

>

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

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  • 4 weeks later...

Tami, I have scleroderma. You can contact me at: sn2590@... Pat

Tami <ladydubois@...> wrote: Is ther anyone on this site that

has scleroderma or knows anyone that

does? Tami

_T_._,_.___ Messages in this topic (14) Reply (via web post) | Start a new

topic

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I have a first cousin who has scleroderma, but she's not on this list.

She also has RA and a few others. I don't see her often, so I don't

know what treatment she's getting.

Sue

On Friday, November 24, 2006, at 06:23 PM, Tami wrote:

> Is ther anyone on this site that has scleroderma or knows anyone that

> does? Tami

>

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  • 1 month later...

Hi Lynne

Gee kid,you spell your name the same as I do.Most people spell it

Lynn.Get your mom onto AP A.S.A.P..It definately works very well for

SD.The hands are usually the slowest to respond.It took me several

years to get this under control as I did not know that Celiac disease

caused it.My doctor says that almost all people with chronic diseases

have it as a cause. Check out www.celiac.com then go to

www.enterolab.com to order the test.Blood tests for this do not work as

well as they give false readings.For now get her off all grains except

rice,all sugars including molasses.Corn syrup and honey are o.k.anything

" cow'...beef,cream etc,and anything that is canned or packaged.That

pretty well means a diet of fruits,veggies,chicken and porc.if she has

sensitivities it usually takes 12-18 months to clear and then the AP

will work miracles in a short time if she is not on any immune

suppressants as she needs her immune system to fight this thing.Whistle

if you have questions. Lynne

Lynne wrote:

> My mother has been recently dio with Scleroderma, Her hands are

> affected terribly, she has always done crafts, knitting ect. will she

> lose this as time goes on? she might as well be blind, this is killig

> her? Help!

> Lynne

>

>

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I forgot to tell you to read www.roadback.org bulletin board.Lots of

help for SD on that site

Lynne wrote:

> My mother has been recently dio with Scleroderma, Her hands are

> affected terribly, she has always done crafts, knitting ect. will she

> lose this as time goes on? she might as well be blind, this is killig

> her? Help!

> Lynne

>

>

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Hi,

I was diagnosed with scleroderma in 1998 and went on a diet of nothing

white except cauliflower. I went on the antibiotic therapy and I am 90 %

free of all of it. I did not do a diet for celiac problems and did fine. Not

everyone is the same chemically. Try the antibiotic therapy and don't eat

processed foods. It worked for me without having any problems with celiac. My

DX was systemic scleroderma, systemic lupus, and polymyositis.. I am doing

fine and rejoicing in it. With scleroderma you need to treat asap and not

wait a year to eat a celiac diet first. The quicker the treatment the quic

ker the victory without any more damage. Not every one has celiac problems.

Lots of blessing to you and your mom. Judy Duncan

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Hi Tooshooze;

When I wrote the other e-mail I was explaining what happened to

me,maybe I should have been more accurate in my explanation.I had been

on the 200mg Mino for 4 years without any benefit.I was just being

followed by my GP as there was no AP doc around.When we moved near

Montreal I found a marvelous one that specialises in severe

allergies.She had been very sick for several years with Chronic Fatigue

and Fibro.She had used the Dr. G. Nicholson protocol and is cured

today.Now she helps others and thinks nothing of spending more than an

hour with each patient.

When I asked her why AP was not working she said we have to find the

cause of the disease ,rectify that and then it should work.Was she ever

right.She asked a million questions and I felt like I was under a

microscope.When I told her that I had a tiny pimple on my back since1991

that would never go away she put 2 and 2 together immediately.This

little water blister had spread to my legs in a couple of spots and she

knew it was Dermatitis Herpetiformis that is caused by Celiac.I had

never had a symptom in all that time nor had I heard about Celiac.She

then went on to explain that about 70% of peple with chronic diseases

have it.She had me tested by a lab here and in the U.S.The blood test

showed only a slight sensitivity but Enterolab's came back very high.The

Celiac had caused a lot of damage and I was not highly sensitive to beef

and dairy,grapes,citrus,legumes,citrus ,sugar cane produts and

asperigus.Most Celiacs are sensitive to bee/dairy and sugar.She had been

reading up on MP and though she did not really think it was anything

special she did have my 1,25 and 25D tests done and I came back almost 3

times too high so I had to cut out all foods with vit.D also.The

imbalance was leaching calcium and other minerals from my bones.I cut

out all the foods that were causing problems and thought I would starve

to death.The reward was worth the trouble and after I cleared all of

thos baddies from my system I was in remission in 6 months.As she

says.....look for the cause! Lynne

Tooshooze@... wrote:

> Hi,

> I was diagnosed with scleroderma in 1998 and went on a diet of nothing

> white except cauliflower. I went on the antibiotic therapy and I am 90 %

> free of all of it. I did not do a diet for celiac problems and did

> fine. Not

> everyone is the same chemically. Try the antibiotic therapy and don't eat

> processed foods. It worked for me without having any problems with

> celiac. My

> DX was systemic scleroderma, systemic lupus, and polymyositis.. I am

> doing

> fine and rejoicing in it. With scleroderma you need to treat asap and not

> wait a year to eat a celiac diet first. The quicker the treatment the quic

> ker the victory without any more damage. Not every one has celiac

> problems.

> Lots of blessing to you and your mom. Judy Duncan

>

>

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  • 8 months later...

scleroderma

Hi everyone. I have scleroderma and have been on the ap since 1998 and doing

okay except for a very bad stomach for the past 2 yrs. All kinds of tests done,

and nothing came up. My rheumy wants me to go off the minocin but I won't and

my family dr. is the one who gives me the scripts. Do you think I should go off

mino and go on doxy or something else for about a year to see if this will solve

my stomach problem. Fain, I have misplaced your email address. Please

con tact me. Thanks. Emmie

--------------------------------------------------------------------------------

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Hi ;

Almost all of us will have stomack problems.Have you taken your

probiotics and digestive enzymes regularly.Do you have systemic yeast

and or leaky gut,which becomes part of the SD game.Have you checked for

celiac and food sensitivities that can cause these problems? One must

get all that under control or things just get worse and worse. Lynne G/SD

Rizun wrote:

>

> scleroderma

>

> Hi everyone. I have scleroderma and have been on the ap since 1998 and

> doing okay except for a very bad stomach for the past 2 yrs. All kinds

> of tests done, and nothing came up. My rheumy wants me to go off the

> minocin but I won't and my family dr. is the one who gives me the

> scripts. Do you think I should go off mino and go on doxy or something

> else for about a year to see if this will solve my stomach problem.

> Fain, I have misplaced your email address. Please con tact me.

> Thanks. Emmie

>

> ----------------------------------------------------------

>

> Canada Toolbar : Search from anywhere on the web and bookmark

> your favourite sites. Download it now!

>

>

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Hi Debbie. First thing in the morning I have severe nausea, but I still eat a

little breakfast, usually the nausea just lasts until lunch. Also bothers my

bowels, by having to stay home in the mornings. not diarrhea, but just a lot of

movments (sorry people). So my rheumy (who really opposes my using mino and has

been trying to get me off it for 3 yrs now) I have had 3 rheumies before this

one, and they all told me there was nothing they could do for me, and to look

for another rheumy. This one at least is keeping me on. He is really nice and

sympathetic though. Very kind man. I need him in case I have to go to the

hospital for complications. From what I have read from this group, there are a

few people with scleroderma with stomach problems. I had an endoscopy to see if

I am celiac, but it was negative, and I do not have an ulcer. Take care

everyone. Emmie

scleroderma

Hi everyone. I have scleroderma and have been on the ap since 1998 and doing

okay except for a very bad stomach for the past 2 yrs. All kinds of tests done,

and nothing came up. My rheumy wants me to go off the minocin but I won't and my

family dr. is the one who gives me the scripts. Do you think I should go off

mino and go on doxy or something else for about a year to see if this will solve

my stomach problem. Fain, I have misplaced your email address. Please con

tact me. Thanks. Emmie

----------------------------------------------------------

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favourite sites. Download it now!

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To the person with the nausea in the morning!

Hi, This is Dolores again! Yes, I'm in remission, but the S/D has damaged my

esophagus and the Gerd has also damaged my vocal chords. I do not have my real

voice anymore and I must watch what I eat. I had a history of a hiatal hernia

prior to my S/D and taking Minocin. The Minocin is not what caused this. The

S/D did. If you think that the Minocin is responsible for your stomach

problems, take a couple of crackers with some warm tea. I know we are not

supposed to eat 2 hours before and after taking Minocin, but some people do have

these problems and I have heard that a cracker or two will not cause Minocin to

lose its' total effectiveness and may ease up the nausea. They recommended this

to me 50 years ago when I became pregnant with my first born and had morning

sickness for the first trimester. ....Try it ! And let us know if it helps.

Thanks!

Rizun <emmie@...> wrote:

Hi Debbie. First thing in the morning I have severe nausea, but I

still eat a little breakfast, usually the nausea just lasts until lunch. Also

bothers my bowels, by having to stay home in the mornings. not diarrhea, but

just a lot of movments (sorry people). So my rheumy (who really opposes my using

mino and has been trying to get me off it for 3 yrs now) I have had 3 rheumies

before this one, and they all told me there was nothing they could do for me,

and to look for another rheumy. This one at least is keeping me on. He is really

nice and sympathetic though. Very kind man. I need him in case I have to go to

the hospital for complications. From what I have read from this group, there are

a few people with scleroderma with stomach problems. I had an endoscopy to see

if I am celiac, but it was negative, and I do not have an ulcer. Take care

everyone. Emmie

scleroderma

Hi everyone. I have scleroderma and have been on the ap since 1998 and doing

okay except for a very bad stomach for the past 2 yrs. All kinds of tests done,

and nothing came up. My rheumy wants me to go off the minocin but I won't and my

family dr. is the one who gives me the scripts. Do you think I should go off

mino and go on doxy or something else for about a year to see if this will solve

my stomach problem. Fain, I have misplaced your email address. Please con

tact me. Thanks. Emmie

----------------------------------------------------------

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favourite sites. Download it now!

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If I might ask, what kind of stomach problems? I have SD as well and have been

having stomach issues and I went off the minocin years ago....so the mino may

not be what is aggravating your stomach...Mine are intense, been in ER a couple

x this year....hope this helps...if you wish, we can compare notes...

scleroderma

Hi everyone. I have scleroderma and have been on the ap since 1998 and doing

okay except for a very bad stomach for the past 2 yrs. All kinds of tests done,

and nothing came up. My rheumy wants me to go off the minocin but I won't and my

family dr. is the one who gives me the scripts. Do you think I should go off

mino and go on doxy or something else for about a year to see if this will solve

my stomach problem. Fain, I have misplaced your email address. Please con

tact me. Thanks. Emmie

----------------------------------------------------------

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favourite sites. Download it now!

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HI Lynne. Yes I do take the probiotics and digestive enzymes daily, and was

tested for celiac and nothing. Guess I just have to live with it.

scleroderma

>

> Hi everyone. I have scleroderma and have been on the ap since 1998 and

> doing okay except for a very bad stomach for the past 2 yrs. All kinds

> of tests done, and nothing came up. My rheumy wants me to go off the

> minocin but I won't and my family dr. is the one who gives me the

> scripts. Do you think I should go off mino and go on doxy or something

> else for about a year to see if this will solve my stomach problem.

> Fain, I have misplaced your email address. Please con tact me.

> Thanks. Emmie

>

> ----------------------------------------------------------

>

> Canada Toolbar : Search from anywhere on the web and bookmark

> your favourite sites. Download it now!

>

>

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Hi ,

Have you tried drinking aloe vera liquid? It might help heal and sooth

I have to take digestive enzymes with EVERY meal. And rotating my foods

(eating most only one time a week) is a big help. It’s also a big pain

until you get used to doing it. LOL El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Rizun

Sent: Thursday, September 06, 2007 9:47 AM

rheumatic

Subject: Re: rheumatic Fw: scleroderma

HI Lynne. Yes I do take the probiotics and digestive enzymes daily, and was

tested for celiac and nothing. Guess I just have to live with it.

scleroderma

>

> Hi everyone. I have scleroderma and have been on the ap since 1998 and

> doing okay except for a very bad stomach for the past 2 yrs. All kinds

> of tests done, and nothing came up. My rheumy wants me to go off the

> minocin but I won't and my family dr. is the one who gives me the

> scripts. Do you think I should go off mino and go on doxy or something

> else for about a year to see if this will solve my stomach problem.

> Fain, I have misplaced your email address. Please con tact me.

> Thanks. Emmie

>

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