Flare-ups with odd symptoms

[ggraeff]

Hello - I have a question about some odd symptoms. I was diagnosed in 1986 and had a resection in 2003. Since the surgery, I have been taking Entocort, Lomotil and Imuran and for the most part, normal symptoms are under control. I had an CT Scan about six months ago and was told I have no active disease. However three or four times a year, I end up having what seems like a minor flare with gas, left-side abdominal pain and some minor diarrhea. What I find out of the ordinary is that it's always coupled with exhaustion and joint pain. These symptoms tend to last three to fours days and then disappear one their own, without any change in medication. The only change that I an call out is that I tend to become more conservative with my diet... but nothing significant. I find this strange because back when my diesase was active, I didn't have these predictable short-term flares and I never had the joint pain.

After this happened the last time, it occured to me that one of the things I did just prior to getting these symptoms was that I started taking a high protein, high vitamin supplement. And I never put two and two together, but I've done this before, with different supplement types and I think there's a correlation between the supplements and these symptoms.

Has anyone ever found this type of reation to high vitamin intake? I have a friend with Lupus who mentioned that she can't take vitamins because it causes her joints to ache even when the Lupus is inactive and she said it's a given that it will happen to her. It made me wonder whether there's something with people who have autoimmune disorders; perhaps taking vitamins that are intended to boost the immune system cause the immune system to become overly active.

Anyway, I'm just theorizing about that. I'm wondering if other people have these short flare-ups even when symptoms are seemingly under control, and that include the joint pain?

Thanks you!

Gary

 

[D Bergy]

My theory is that when the immune system is killing any kind of bacteria, virus etc, it causes inflammation. I guess that is not really a theory, it is a medical fact. Inflammation is a natural part of the immune response.

Here is the "my theory" part, actually not only mine, but not common medically accepted fact. When you have an autoimmune disease, the immune response is not effective in killing the offending pathogen. It keeps on trying and you end up with chronic inflammation with no resolution to the original problem. The pathogen is still there in spite of the efforts of your immune system.

When you are supplementing with multivitamins, there are a few minerals that will slightly boost the immune response. Zinc and Magnesium come to mind. There are others also. So now, your immune response is slightly boosted. so it goes about its business of trying to kill the pathogens behind the disease. More inflammation.

The more difficult the pathogen is to kill, the more likely you will just be stuck in this never ending battle.

I think your on the right track, but I would argue that the immune system is not over active as much as it mounts an ineffective attack. And maybe the supplements make it more active in one sense, but it is just doing more of the same ineffective attacking.

The example I have in real life is my wife. She has Lyme Disease. Lyme weakens the immune response enough where you have crippling joint pain, but it cannot be killed by the immune system alone. It tries, but pain is the result.

When treated with just about any method, (by treatment I mean killing the bacteria) increased joint pain is almost a given.
But when treated effectively, the joint pain is temporary and then is resolved until the bacteria reaches a certain concentration again. I have seen this over and over again for five years.

Just my opinions. Not proven fact.

Dan

 

[ggraeff]

Thanks for your reply, Dan. I tend to observe and monitor the progress (or lack thereof) of my disease, and observation causes me to do a lot of theorizing, too. Couple that with the plethora of online info, and I start feeling like a Crohn's researcher.

I've often hypothosized that Crohn's disease, along with all the other 20th century autoimmune disorders like RA, Lupus, MS, etc. aren't really diseases at all, but rather symptoms of single, systemic autoimmune disease/disorder that exhibits itself with different symptoms in different people. As you state, inflammation is just the body's mechanism to eliminate a pathogen, but with all these diseases, there really isn't a known, identified pathogen; rather, the immune system sees a particular part of the body, whether the digestive system, the nervous system or connective tissue as something to eliminate. So, when we treat each of these conditions as diseases, we don't get to the heart of the issue, which is, "why has the immune system gone haywire and attacked parts of our bodies".

For me, Imuran seems to have the best track record for controling my symptoms because it's depressing my immune system. This tells me that my immune systems is actually overly productive (although not particularly selective) and Imuran tends to bring it down to what might be more of a normal level. One other thing that I've observed about myself is that other than having Crohn's diesase, I rarely get sick. No flus, no colds, nothing. My friend with Lupus tells me the same thing... other than Lupus, she's as healthy as a horse. I believe that I have a very strong immune system, and I think that's actually the problem... because it's too strong.

Like I said, only a theory, but it tends to support why, when I take a high-potency supplement, I get these strange flare-up symptoms. It's making my immune that much more active. As I now look back on these episodes, I can defintely see a pattern.

Also, with Joel Weinstock's TSO research showing potential across multiple autoimmune disorders, it makes me wonder why a single approach would positively impact all of these diseases if they weren't the same disease, or at least very closely linked.

Anyway, thanks for listening and for your feedback. It's nice to have someone who doesn't just scoff at what's going on and chalk it up to my overly active imagination. I do think there's something to it... just not sure what.

"I'm not a Gastroenterologist, nor do I play one on TV".

Gary