Re: 9 months and not much progress- Dolores!

September 2, 2009

Dolores! I too, had the horrible IBS, chronic (accident type) diarrhea,

swollen, hurting abdomen, losing 20-25 lbs. when having a bad cycle- then

putting it back on with Steroids, etc. My Rheumy put me on 3, 50 mg. tabs of

Immuran. Miracle drug!!! Happy to say, that after a few weeks, I had the first

formed poop in 14 years! Me and the whole family cheered. No more taking 20

Imodium to 'lock me up' just to go pick the kids up at school. This med has

really changed my life. I still watch what I eat, just in case, but am a

lot more out of the house and about. Still hard to break the habit of mapping

out all the bathrooms of wherever I might go. Been on this med since late Nov.

2008. Helped the tummy, but nothing else. Still a wonder drug. Hope you

are feeling better!!! D. in south Louisiana

Re: rheumatic 9 months and not much progress

Hi Beth, 9 months is a very short time on A/P. Micoplasmas and other

L-shaped microorganisms are very slow growing and very slow dying. Patience is

the biggest virtue in fighting off the disease. Also, you may have, as many of

us do, some underlying diseaes or causes why you are not progressing. I have

been on A/P and M/P, which is just another A/P variation since 2005. I just

converted from an ANA reading of 640 speckled to a negative reading. That is 4

long years of pain, vomiting, diarrhea, Raynauds, cramping, vitiligo, hair loss,

Pulmonary Fibrosis, heart arythmias, and the list goes on. I was diagnosed with

scleroderma, but have had so many complications. I went into remission for a

while and then thought I was ready for MP. Started that and went down the slide

real fast. Didn't know what hit me. I started out bedridden and needed help to

get myself to the bathroom. It was a long and hard road back. Just recently my

doctor saw my normal ANA reading, He thought it might be a lab error, so we

repeated the test. No error! My ANA is normal. Because of the inflammation in

the gut, I restarted taking a probiotic before meals and it has made a world of

difference. We do not fight just one battle, we are being attacked on all

fronts. This is outright bacterial, viral and fungal war and we must keep on

fighting. Those who give up face a miserable life and eventual early death with

no quality of life in between Yes, many times I wanted to give up. But, I could

find no alternative and the ones not on A/P have died. Scary! I kept on and so

glad I did. These rheumatic type of diseases are like a roller-coaster ride.

You think you feel better and in a split second, you could be bending over in

pain. Today, I am so much better. I can travel, have fun, go out, and enjoy

life with family & friends. I look back at where I was. Some docs gave me 5

months to live back in 2005. Now, they are so impressed at my comeback that

they put my husband on antibiotics. He's feeling like crap now and I keep

explaining that these are the reactions of the body called Herxes. I was lucky.

I was so sick at one time that I couldn't tell the differences between the

herxes and the diseases that were killing me. My e:mail is to encourage you to

keep on and read everything. This site, the roadback site, read books,

articles, everything you can get a hold of. You must fight like your life

depends on it because it does. 9 months is not enough time to see much of a

difference. It sometimes takes several years and some of us need to repeat the

A/P from time to time throughout our lives as re-infection can and often does

occur. Stay with it. It is swim or sink. Please don't sink. We are here to

help you. We are also fighting the same battle and know how discouraging it is

to feel like we are

failing. But keep up the fight. You will be rewarded. Also, seek a doc who

understands and is willing to work with you. I switched from Rheumatic docs to

Internal Medicine docs and finally ended up with an Infectious disease doc.

After all, what I have is an Infectious Disease. He understands, I understand

and now I am winning the war. Good luck to you and keep checking for those

underlying diseases that can slow down the progress. Best to you, Dolores

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September 2, 2009

Thanks . So far, I have been on Probiotics for a few days and it has

made a world of difference. I, too cheer for normal poops. I will check out

Imuran. I have taken so many pills, as you know, that I hate to add more to my

daily doses. Sometimes, I am so full of pills that I feel like I have eaten a

watermelon whole. Then I realize that I am bloated, gassy and miserable. I

too, lost 40 lbs., but have gained back 20 by using powdered protein shakes and

forced feeding. That was not pleasant. I stopped at the 20 lb gain and am

within my normal height/weight proportion. So now, hopefully, I can look

forward to going to my oldest grandson's wedding in November with my formal

attire and my probiotics in my purse. Hope I like the dinner enough to stuff

myself a little. Dolores & Mike

From: Dalfrey <edalfrey@...>

Subject: Re: rheumatic 9 months and not much progress- Dolores!

rheumatic

Date: Wednesday, September 2, 2009, 7:25 PM

Dolores! I too, had the horrible IBS, chronic (accident type) diarrhea, swollen,

hurting abdomen, losing 20-25 lbs. when having a bad cycle- then putting it back

on with Steroids, etc. My Rheumy put me on 3, 50 mg. tabs of Immuran. Miracle

drug!!! Happy to say, that after a few weeks, I had the first formed poop in 14

years! Me and the whole family cheered. No more taking 20 Imodium to 'lock me

up' just to go pick the kids up at school. This med has really changed my life.

I still watch what I eat, just in case, but am a lot more out of the house

and about. Still hard to break the habit of mapping out all the bathrooms of

wherever I might go. Been on this med since late Nov. 2008. Helped the tummy,

but nothing else. Still a wonder drug. Hope you are feeling better!!!

D. in south Louisiana

Re: rheumatic 9 months and not much progress

Hi Beth, 9 months is a very short time on A/P. Micoplasmas and other L-shaped

microorganisms are very slow growing and very slow dying. Patience is the

biggest virtue in fighting off the disease. Also, you may have, as many of us

do, some underlying diseaes or causes why you are not progressing. I have been

on A/P and M/P, which is just another A/P variation since 2005. I just converted

from an ANA reading of 640 speckled to a negative reading. That is 4 long years

of pain, vomiting, diarrhea, Raynauds, cramping, vitiligo, hair loss, Pulmonary

Fibrosis, heart arythmias, and the list goes on. I was diagnosed with