Reply To: CIDP survey – odd relapse pattern, weakness, exercise effects – anybody else??
The cycling is interesting – as if some part of the immune system figures out something is wrong and suppresses the auto-attack for a while. I understand that antibodies have a “half-life” of around 3 weeks, so they can survive for months. I’ve considered PE, but it seems a bit extreme for my mild case. More IVIg treatments would probably require another spinal to show high protein in CSF and Nerve Conduction tests showing damage, and an official CIDP diagnosis (don’t have that yet, and don’t want it if I can avoid it). Also, IVIg made me a lot worse for a few days, and gave me a painful rash, headaches, etc. My last relapse was very unpleasant, but didn’t leave me with much leg weakness this time (can’t do that much exercise before I get weak, but that gets better each day). So, the plan (just saw my neuro again) is to wait another month or two to see how things go before getting more aggressive with the Prednisone or considering IVIg again or PE. That said, I like your plan of PE followed by IVIg because I think that would stand a decent chance of being a “cure” in my case.
C. Jejuni bacteria is interesting… don’t know if it could have caused the Sesame sensitivity, but I it makes sense to me that the Sesame causing intestinal inflammation multiple times per month for several years MIGHT have caused the CIDP, indirectly. The inflammation makes the intestines more “leaky” and C. Jejuni (I eat a lot of chicken) could have leaked into my blood stream, and the LPS molecules on the bacteria (even if they’re dead) are major causes of inflammation (they are used to cause it in lab animals) and I read something online about them being suspected as a possible cause of CIDP due to similarities with molecules on the surface of nerve cells. Perhaps each time you get significant inflammation in your gut, you’re essentially “rolling the dice” and if the right numbers come up, you win CIDP as the prize. This would explain the increasing incident rate with age, although not why it drops after your 50’s. Note that taking Aspirin or eating pink grapefruit would make things worse (which I’ve done), or in my case how much Sesame I eat and what I eat it with, etc. Regardless of the cause of my CIDP, any inflammation could trigger a relapse in theory, and this indeed seemed to occur once when I consumed Sesame the last time, so now that I finally know what the culprit has been these last few years, it’s banned from my diet.
I’ve been following a pretty strict anti-inflammatory diet for a while now, and also have been taking probiotics, eating yogurt every day, etc. However, I’m sure it’s possible that bad bacteria are still hanging around in there.
Exercise definitely makes things a lot worse in my case when the auto-attack is active. It has also coincided with relapses at least twice (out of 5). So, I now plan to avoid any cardio whatsoever, especially when a relapse is “due”.
HOWEVER, once I graphed out my symptoms, I have to face the facts that my cycles are rather amazingly consistent independent of treatment, diet, or exercise. I suspect that all of those things have SOME impact, but the natural cycling of my immune system probably carries about 80% of the responsibility, with those external factors only pushing the timeline around by a few days or reducing the severity (in the case of Prednisone).