What Caused CIDP In You? -- Part Deux

TJ here. The other thread took a serious veer to the weird and Seenie correctly closed it. I have a real problem with those who would take advantage of our patient populations with pseudo science for the primary purpose of "profit". Mercola is one of those. Don't expect that anything will last long on these forums coming from that source. (I get to make a few rules :-)

THAT being said, the rest of the conversation is valid and really points to some exciting developments with CIDP. So did the flu vaccination actually cause some of you folks' CIDP? Its hard to argue with the informal survey done here. What we know is there are cases that definitely point to the vaccine being the TRIGGER. The numbers indicate that the vaccine is related to a one in 1 million chance of CIDP occurring. To the general population that is quite low. To our population its a tad more significant. BUT there is another number. To put it simply (as part of our population) you are five times more likely to get CIDP if you forgo the vaccination and get the flu itself............... NOW THAT makes a decision really difficult when it comes to vaccines.

We are really close to finally calling CIDP (and GBS) what many have always believed that it is: an Auto-immune disorder. Simply put, you have always had the propensity for CIDP, but that an event (either medical or other) triggers what always has been there. In the autoimmune world we call that the Koebner effect. Its a bit broader than what you will find in the Internet. I can certainly point with certainty directly to the event that kicked off my Auto-immune disease(s). Medical science is slowly getting somewhere in treating CIDP based on an autoimmune model.

Now let me share a bit as a patient. It matters not a twit what triggered our disease. All it does is cause us to dwell on something we can't do one darn thing about. It does allow the quackers in the world (whether its Mercola hiding behind bad science or the supplement touts selling their snake oil to take advantage of our dwelling) to fill their bank accounts by selling us the HOPE that they can reverse that event. They can't, They Can't, They can't. They can't redesign your immune system either. Lets be blunt. IF they could, this crap would not be sold for dollars in the health food aisle when pharmaceutical companies could sell it for thousands a dose if it worked.

When I was 5 years old my best friend and I got sick within minutes of each other. Same fever, same symptoms same everything. For a week we were sick. Then I started getting better. He didn't. Turned out to be polio. He recovered eventually with a gimpy arm and a limp. Now close to 60 years later he still has a limp and a gimpy arm. What he doesn't have is Polio. We could treat him for polio (which is pretty darn effective if you have polio) but the gimp and and limp will always be there and will always be there.

We will NEVER be able to move forward with our diseases looking backwards. PLEASE move on. Its hard. Its almost impossible. But its what's forward that will change us not what can't be changed. Keep in mind the Mercolas can't help. He in fact hasn't "practiced" in six years. He has concentrated on his very profitable website, but losing his license (voluntarily as opposed to the other) may have something to do with that.

That doesn't mean our shared experiences aren't interesting and helpful or that the discussion can't continue. I'm curious as to what others may be able to identify as CIDP Trigger. I wonder if anyone developed their symptoms after the flu (or other illness).

Be careful though! Wouldn't it be the pits to figure out that maybe if you'd had your flu shot, you wouldn't have had the CIDP triggered when it was? The past is a very dangerous place for the chronically ill. Thanks for getting me on a roll, Hobie1dog! Let's keep the conversation going!

TJ from Moderator Support