Reply To: A few questions? New and scared

December 24, 2013 at 3:59 am

Flu Shots
Getting GBS/CIDP as a result of a flu shot is very a controversial issue. Neither side of the argument has proven their case conclusively. I’m a believer that a flu shot CAN trigger GBS/CIDP in some of us because none of us are alike and neither are our immune systems. I will never get another flu shot in my lifetime … I would rather come down with the flu than risk another outbreak of GBS/CIDP!

I’m not sure the word remission is always appropriate for CIDP; it conjures a sense that one has conquered the disease. Maybe dormant is more descriptive. Once our auto-immune system has learned how to make the bad antibodies that contribute to GBS/CIDP, it can reproduce them again if triggered to do so.

Lymphocytes (a type of white blood cell) occur in two forms: B cells, which produce antibodies, and T cells, which recognize foreign substances and process them for removal. Things go wrong when a foreign substance is introduced that resembles “self” and changes the immune system’s ability to discriminate between “self” and “non-self.” Flu shots introduce foreign substances in order to trigger the immune system to produce Lymphocites and other cells.

Stem Cell transplant
The stem cell transplant procedure (presently in several clinical trials in the US) targets the immune system by shutting it down with chemo-therapy type treatments. This also kills off the Lymphocytes that protect us against disease. Once the chemo has done its work and the bone marrow is no longer producing Lymphocytes (amongst other cells), our remaining blood cells are harvested, stem cells are captured from these and reintroduced (transplanted) into our bone marrow. This essentially re-boots the immune system and it must relearn how to protect us. The hope with this approach, and what the clinical trials are trying to prove, is that the re-booted immune system will NOT remember how to make GBS/CIDP.

I looked into the procedures earlier this year for myself. I dialoged with a few people who have undergone it and talked with the Admins in three separate clinical trials. I don’t qualify for Dr Burt’s program in Chicago due to age, but I would qualify for Dr Georges’ program in Seattle. One of the things I learned was that my out of pocket cost with Medicare would be around $600K, this is because Medicare does not cover clinical trials (at least thru 2013). The affordable care act is changing Medicare’s coverage for clinical trials in 2014. I have forwarded the link to the new Medicare provisions to Dr Georges’ office so their finance department can look into the costs for me for next year.

The costs to travel from California to Seattle, with my caregiver in tow, rent an apartment, and pay for all expenses, for a period of about 3 months, is not a trivial matter. Not to mention all the fun things like being sick all the time and losing my hair (due to the chemo). Then I would be the “boy in the bubble” for a year or more while my immune system is relearning how to protect me against all the every day bugs we take for granted our immune system will kill for us. And … there is “no guarantee” that it will even work for more than a year or two.

For those that want to learn more about stem cell transplant, here are the two trials I applied for:
http://www.clinicaltrials.gov/ct2/show/NCT00716066?term=NCT00716066&rank=1
http://www.clinicaltrials.gov/ct2/show/NCT00278629?term=cidp&rank=16

Urgency
I circumvented all the doctor red tape (2-3 weeks worth) when I got GBS because I wanted treatment NOW: I checked myself in to the ER and was on IVIg in two days.