Reply To: Get Tested!

February 18, 2013 at 2:21 am

I am not offended, and the hard part of my CIDP is far behind me. But you are coming across as a bit of a crank by seeming to think that your particular experience with CIDP applies to most e eryone else’s condition. Many people with CIDP have posted here, an collectively we have a great deal of experience with it — how it presents, how it is treated, prognosis for recovery, and so on. We know that there is a great deal of individual variation, that there are many possible triggers, and that one treatment does not apply to all.

Most cases of CIDP are ideopathic, because the triggering infection need not be clinical in order to lead to CIDP, and because the infection is usually gone by the time CIDP is manifested. You have contributed information that Bartacella can be one of the triggers, and that is interesting and useful, but it does not explain most cases of CIDP, and probably very few.

I really don’t understand your purpose here. Your information about your particular experience with CIDP is welcome here, but if you are trying to encourage people diagnosed with CIDP to reject treatments of IvIg or steroids (I had both of these treatments, and others), then you are out of line. You have no business giving medical advice. If you were qualified to give medical advice, you would not be doing it through an internet forum.