While searching the internet I came across this site:
http://www.colitis.malinowski.com/
They are pretty old, dating from 1995 to July 2003. Just read through the first one and found something interesting.
A couple of folks mentioned that Cipro helped to aleviate some of their symptoms. With the recent talk of viruses here this caught my eye.
Mike
Old MC/CC Club Newsletters
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mike,
I read some of the posts from this site......so sad. Those poor people had no idea what was happening to them or how to feel better....and endured it for so long. It is awful enough to deal with now....but at least we can get rid of the gluten and eventually lead close to normal lives.
Love,
Cristi
I read some of the posts from this site......so sad. Those poor people had no idea what was happening to them or how to feel better....and endured it for so long. It is awful enough to deal with now....but at least we can get rid of the gluten and eventually lead close to normal lives.
Love,
Cristi
Hi Mike!
You have found the archives of Judy Malinowski. They were the first MC references I found when I started my internet search after diagnosis. I still keep in touch with Judy by email occasionally. She is an author of snorkeling books who developed MC and started a website. Can you imagine having explosive D while in a wetsuit? Yup, it happened to her.
Judy was one of the very first people to discover Dr. Fine's research and go gluten-free. I think she has been GF now for close to 6-7 years or more (even longer than our Alice here, I think). And Judy continues to be in long-term remission with diet alone. She is one of my inspirations.
There is a lot of good info on that website. It was where I first learned about proton-pump inhibitors like Prevacid causing MC and that MC aches/pains sometimes affect the thumbs, for example. And yes, that Cipro could relieve symptoms.
Love,
Polly
You have found the archives of Judy Malinowski. They were the first MC references I found when I started my internet search after diagnosis. I still keep in touch with Judy by email occasionally. She is an author of snorkeling books who developed MC and started a website. Can you imagine having explosive D while in a wetsuit? Yup, it happened to her.
Judy was one of the very first people to discover Dr. Fine's research and go gluten-free. I think she has been GF now for close to 6-7 years or more (even longer than our Alice here, I think). And Judy continues to be in long-term remission with diet alone. She is one of my inspirations.
There is a lot of good info on that website. It was where I first learned about proton-pump inhibitors like Prevacid causing MC and that MC aches/pains sometimes affect the thumbs, for example. And yes, that Cipro could relieve symptoms.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
wow---I used to get Judy's letters too---
Like all that said----I found lottsa info about our issues from Judy!!!!
And that is how Liz and I became friends-----thru Judy's letters--
She had posted one time and I knew there was something I liked about Twinee2---so I emailed her and our friendship grew!!!! Liz----do U remember that????
Amazing how friendships have formed!!!
luve Barbara---
Like all that said----I found lottsa info about our issues from Judy!!!!
And that is how Liz and I became friends-----thru Judy's letters--
She had posted one time and I knew there was something I liked about Twinee2---so I emailed her and our friendship grew!!!! Liz----do U remember that????
Amazing how friendships have formed!!!
luve Barbara---
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Cristi,
I also have gotten pain in the thumbs and what seems like thumb (or generalized hand) weakness. That's why I picked up on it when others mentioned it in that newletter. Strange, isn't it? But always a relief to know that you're not the only one!
Love,
Polly
I also have gotten pain in the thumbs and what seems like thumb (or generalized hand) weakness. That's why I picked up on it when others mentioned it in that newletter. Strange, isn't it? But always a relief to know that you're not the only one!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
artteacher
- Rockhopper Penguin
- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
.
OMG: is that what that thumb thing is all about?
Honestly, I thought maybe I was getting a weird version of gout!
Love, Marsha
P.S. Speaking of weird symptoms: is vision fluctuation also a symptom that goes with MC, or with gluten intolerance? My distance vision varies noticably from day to day, and it seems to be better when I'm low carb or totally intolerance-free (dairy, grain, eggs, legumes, etc)
Honestly, I thought maybe I was getting a weird version of gout!
Love, Marsha
P.S. Speaking of weird symptoms: is vision fluctuation also a symptom that goes with MC, or with gluten intolerance? My distance vision varies noticably from day to day, and it seems to be better when I'm low carb or totally intolerance-free (dairy, grain, eggs, legumes, etc)
Hi Masha,
I went to the eye doctor early on when I was on entocort because I thought it was affecting my eyes. I have problems at time with too much light...so much that watching the TV is too bright for my eyes. It comes and goes as well...but never had it before MC. The thumb thing is weird....I didn't get it until I started going gf. My naturopath thought maybe it was some kind of withdrawal symptom.
Love,
Cristi
I went to the eye doctor early on when I was on entocort because I thought it was affecting my eyes. I have problems at time with too much light...so much that watching the TV is too bright for my eyes. It comes and goes as well...but never had it before MC. The thumb thing is weird....I didn't get it until I started going gf. My naturopath thought maybe it was some kind of withdrawal symptom.
Love,
Cristi
Marsha!
I also find that my vision varies day to day. Some days perfect, other days I actually need glasses. I had wondered if it was due to daily differences in pollution or pollen count, and I hadn't really considered the impact of intolerances. Interesting thought. I will try to pay more attention from now on to see if I can make an association.
I remember that Jean's hearing improved significantly after she went gluten-free. I asked Dr. Fine about it once, and I think he said he believed it was entirely possible.
Love,
Polly
I also find that my vision varies day to day. Some days perfect, other days I actually need glasses. I had wondered if it was due to daily differences in pollution or pollen count, and I hadn't really considered the impact of intolerances. Interesting thought. I will try to pay more attention from now on to see if I can make an association.
I remember that Jean's hearing improved significantly after she went gluten-free. I asked Dr. Fine about it once, and I think he said he believed it was entirely possible.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hmmmmmmmmmm. I had the thumb thing also, but now I can't remember if it was before or after I started the GF diet, 'cause I've been GF almost 4 years now, so that era is rapidly becoming ancient history.
I've had druesen, since about the time I began to have symptoms of gluten intolerance, (of course I didn't realize that's what the symptoms were from, back then). Druesen is an AI disease, that affects vision acuity in low light conditions.
My vision varies from day to day also, but I just assumed that it was because I sometimes work in a dusty environment. Maybe there's more to it than that. Hmmmmmmmmmm.
Love,
Tex
I've had druesen, since about the time I began to have symptoms of gluten intolerance, (of course I didn't realize that's what the symptoms were from, back then). Druesen is an AI disease, that affects vision acuity in low light conditions.
My vision varies from day to day also, but I just assumed that it was because I sometimes work in a dusty environment. Maybe there's more to it than that. Hmmmmmmmmmm.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I didn't know that drusen was AI. Is that anywhere in the eye? I suppose it would be. I have very mild Macular Degeneration which is caused by drusen and also drusen around my optic nerves. The doctor said the optic nerve thing was unimportant. That it just causes your optic nerve to appear swollen. I didn't especially like that idea though. He said people who have it are more prone to migrain headaches. I get the "silent migrains" where you see "things" that aren't there like heat waves, odd colors sometimes, a "bubble" on the page when trying to read. Anyway, I think I'll do some more research on this.......After I get home......this computer to slow here.
Love, Shirley
I didn't know that drusen was AI. Is that anywhere in the eye? I suppose it would be. I have very mild Macular Degeneration which is caused by drusen and also drusen around my optic nerves. The doctor said the optic nerve thing was unimportant. That it just causes your optic nerve to appear swollen. I didn't especially like that idea though. He said people who have it are more prone to migrain headaches. I get the "silent migrains" where you see "things" that aren't there like heat waves, odd colors sometimes, a "bubble" on the page when trying to read. Anyway, I think I'll do some more research on this.......After I get home......this computer to slow here.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Shirley,
So far, I haven't noticed any indications of center vision deterioration, though I've had drusen for at least 6 or 7 years now. I have the "dry" form, with small drusen, (though there are a lot of them).
Are you aware that Myasthenia Gravis, (MG), is also an autoimmune condition where the body's immune system has damaged receptors in certain muscles. The most common sign of MG seen by ophthalmologists is lid droop.
http://www.nanosweb.org/patient_info/br ... Gravis.asp
I apparently have this condition also, though it's not bad enough to be a serious problem. I began to notice it about the same time that my other symptoms started.
Love,
Tex
So far, I haven't noticed any indications of center vision deterioration, though I've had drusen for at least 6 or 7 years now. I have the "dry" form, with small drusen, (though there are a lot of them).
Are you aware that Myasthenia Gravis, (MG), is also an autoimmune condition where the body's immune system has damaged receptors in certain muscles. The most common sign of MG seen by ophthalmologists is lid droop.
http://www.nanosweb.org/patient_info/br ... Gravis.asp
I apparently have this condition also, though it's not bad enough to be a serious problem. I began to notice it about the same time that my other symptoms started.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.