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So, I went to my family doc this morning to follow up on the sleep study I did 2 weeks ago. Turns out that I have minor sleep apnea, but what's more concerning (and actually answers a lot of questions) is that they observed no REM sleep at all--obstructive airway disease, I think... is causing me to wake up 12 times or more an hour. No wonder I'm so doggone tired all the time!! I'll be getting my cpap machine within the week, as they did observe that I responded well to it. Need to do more research on this tonight!
We spoke at length about the fact that the diarrhea has persisted, despite the rather high dose of Predisone. They sent me for a stool sample since no one has ever ruled out any kind of bacteria or anything like that. He did say that the Predisone should have cleared up the diarrhea by this time, so there is most likely something else causing it rather than inflammation caused by the colitis. However, he completely disregarded my questions on candida. I think his quote was, "Candida doesn't affect people with normal autoimmune systems". I thought that both celiac and lc were considered autoimmune--does that not place me in a category of having a not normal autoimmune system?
So I guess I'm on my own with that one if I decide to pursue it--which may be a good idea at this point. They also drew blood to do some hormone levels since I've been having some female issues as well (of course).
The good news is that my bone density is better than most women my age, so at least when I fall running to the bathroom the 150 times a day that I run to the bathroom, I won't break anything!
I'm off to volunteer in the 2nd grade--will check back with y'all later.
Wendy,
My doc also thinks something else is causing the D because I haven't responded to Neomycin or Prednisone. He is getting all my previous lab results from my retired GI doc. I'm sure I will be doing more lab work too. He did want me to take the VSL#3 anyway. I don't sleep well either and am also having female issues - menopause. I see my GYN tomorrow. Also I have tinnitus. I really feel like I am going to go mad!!!!!! Let's hang in there together!
Pat
Pat--I think you and I are kindrid spirits! I have had tinnitis for about as long as I can remember--and it drives me crazy, too, especially at night. Any thoughts on what causes it? I haven't even broached that one with the doc yet. I guess I was hoping that going gluten free would help it, but so far it hasn't. We could probably fill 10 pages with all of our symptoms!
I will be interested to see if the results of my latest stool sample yields any results. Keep me posted on what you find out about your D! And also what your GYN says...I'm thinking I'm young to be starting menopause, but then again, maybe not.
Mike--actually I did just start seeing Dr. Lewey! I'm very excited to have become a patient of his, though he doesn't yet take my insurance, so I'm trying to do as much over the phone at the moment as I can. He put me on the Predisone with a follow up of Entocort starting next week. In the meantime, as of this afternoon, he has begun tapering the predisone and has started me on colazol. He also wants me to have a full allergy panel (which my insurance doesn't cover, so at $450, it will just have to wait for a bit!) to see if there's something else that I might be eating that if affecting me. He is a believer in candida, so I'm guessing if the drugs don't work, we'll be going there next.
So, I'm off to research the sleep thing now--before I fall asleep!
You are correct. Your doc is quite confused about autoimmune diseases. Both celiac sprue and MC are classified as autoimmune diseases, which implies that you have a corrupt immune system. His attitude about candida is typical, and matches his confusion about autoimmune diseases.
Maybe the stool test will yield some clues.
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.
I'm another one that has had tinnitus for close to 20 years. I thought it was from noise damage to the nerves in your ears. If so, I don't think diet would make it better. Perhaps there is more than one cause but I don't know.
Love, Shirley
Did what I should have done before posting. I still think mine is from noise damage but there can be other causes.
Thanks, Shirley, for that article on Tinnitus. It says everything so very well. I have a friend who is an audiologist and she is having me clean the wax out of my ears first and then she will do a hearing test. I guess from there I may have to go on to an ENT. The constant ringing is maddening!
Pat
Ok here I go again. But I also have tinnitus, wanna know what else can cause it besides those things listed? Low serotonin levels. Ok, so what you say. Know what can cause low serotonin levels? Bacterial overgrowth. I believe it has something to do with the bacteria consuming the tryptophan (an amino acid). Tryptophan is used in the body to create serotonin. I have research to show this if anyone thinks I'm off my rocker. :)
piemom wrote:
Mike--actually I did just start seeing Dr. Lewey! I'm very excited to have become a patient of his, though he doesn't yet take my insurance, so I'm trying to do as much over the phone at the moment as I can. He put me on the Predisone with a follow up of Entocort starting next week. In the meantime, as of this afternoon, he has begun tapering the predisone and has started me on colazol. He also wants me to have a full allergy panel (which my insurance doesn't cover, so at $450, it will just have to wait for a bit!) to see if there's something else that I might be eating that if affecting me. He is a believer in candida, so I'm guessing if the drugs don't work, we'll be going there next.
So, I'm off to research the sleep thing now--before I fall asleep!
Thanks for the responses!
Wendy
Hi Wendy, glad to hear you are getting to see him. I hope that insurance will cover him for you as well. I know he's on my insurance, but then there's a bit of a distance issue. LOL
You are correct. Your doc is quite confused about autoimmune diseases. Both celiac sprue and MC are classified as autoimmune diseases, which implies that you have a corrupt immune system. His attitude about candida is typical, and matches his confusion about autoimmune diseases.
Maybe the stool test will yield some clues.
Tex
Hey Tex, celiac is definitly an autoimmune disease. I think you may have mentioned this before, but where is MC classified as autoimmune? I've never seen any antibodies being tested for in MC. Not that I don't think that this is the case, but I haven't seen this mentioned in the research I've done. I've read where they studied various autoantibodies, but they couldn't point to any that were involved.
Well, you're right, of course. Even though there are a lot of suspicions, and some evidence points that way, it hasn't been conclusively proven, so it will probably take the medical profession another 40 or 50 years to actually get around to listing MC on an "official" autoimmune disease list. Since Crohn's and UC have been known about and studied for many years, they are on the list, of course. Does it seem logical that the other IBDs should not be on that list?
I'm not the only one who feels that MC is an autoimmune disease. Consider:
What causes collagenous colitis and lymphocytic colitis?
Scientists are not sure what causes collagenous colitis or lymphocytic colitis. Bacteria and their toxins, or a virus, may be responsible for causing inflammation and damage to the colon. Some scientists think that collagenous colitis and lymphocytic colitis may result from an autoimmune response, which means that the body's immune system destroys healthy cells for no known reason.
Extensive data from animals (mainly rodents) suggest that any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon. What makes the body suddenly recognize these bacteria as harmful and worthy of this attack is not fully understood but there are several clues based on my research.
The autoantibodies investigated are of no diagnostic relevance to microscopic colitis. Positive ANA and strong associations with other autoimmune diseases point to an autoimmune etiology.
Tex, I have also read in several places that mc is considered by some to be autoimmune. I have to agree with you that it will take them 40 years to figure out what we who have it already suspect! Dr. Lewey told me that he thinks LC is celiac of the large intestine, which would then put it in the same category of autoimmunes....
That's an interesting observation by Dr. Lewey. Thanks for mentioning that. It makes a lot of sense.
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.
Mike,
That is interesting about the tinnitus being connected to bacterial overgrowth. Be interesting to see what happens to your tinnitus since you are responding to the Neomycin for your D.
I am having a little success with the VSL#3. Maybe placebo, but after just two days on it I only had two small BMs, one just mucus, yesterday. We'll see what happens. The doc said that it wouldn't make the D go away, but to take it.
Wendy,
Saw my GYN doc yesterday and she didn't have anything to add. They don't want me to take any hormones for my menopausal symptoms because of the risk of breast cancer. I'm high risk.
Pat
