Reply To: CIDP survey – odd relapse pattern, weakness, exercise effects – anybody else??

December 3, 2018 at 1:03 am

Kenneth, Thanks for your kind words!

My experience with the disease was that the bad antibodies produced by my GBS/CIDP would cause my symptoms to rev up, then rev down, even while taking Prednisone and having IVIg treatments. That cycling went on for a couple months, during which I was slowly becoming more and more paralyzed, including internal and autonomous muscles. It wasn’t until I had my first Plasma Exchange (PE) did the cycle stop. Within 1-2 days of PE, numbness noticeably subsided in my face and I was able to partially close my eye. Within weeks I was getting movement back in my fingers. The cycle was ended for me by PE.

I’ve since learned that the bad antibodies were widespread in my blood. Some of them were deep in my veins and when I was given Physical Therapy, that seemed to get my muscles moving and pumping the blood. I believe some of those antibodies deep in my veins came out of hiding and were responsible for the cycling between feeling fairly stable and the sensation of a new attack.

Afterwards, I learned that PE removes the antibodies from the blood, but it takes 2-4 PE’s to get out those antibodies hiding deep in the veins. PE does not stop the immune system from producing more bad antibodies, that’s the job of IVIg. IVIg, however, doesn’t remove the antibodies already in the blood. The two treatments tend to cancel each other out, so it’s not recommended to keep flipping back and forth on some regular basis, without giving each treatment several days to work. I think 3 PE’s over a 5-day period, followed by daily IVIg for 5 days, would be an optimal treatment for some of us who may have a high concentration of the bad antibodies in our systems.

Perhaps you have too many active bad antibodies in your blood and they are contributing to your cycle of relapse/remission? Have you considered PE? What do your doctors think?

Another possible contributing factor would be if you contracted the disease thanks to the Campylobacter bacteria; and, it’s still active in your gut. Maybe your sensitivity to Sesame is somehow related to a bacterial infection?

Perhaps the following publication might offer some insight into your symptoms and their treatment: