Reply To: CIDP – Active Infection

I have a long history of Lyme disease, with multiple co-infections (ehricliosis, babesiosis, and… suspect bartenella).  I almost never test postitive to the CDC approved test for any of these diseases (I was on 5 mg prednisone for 20+ years and therefore have a very compromised immune system).  However, on PCR and direct detection – and, weirdly, when I had my period – I tested positive.  I say “suspect bartenella” because at the time I was diagnosed (1997), no one ever imagined Bartenella could be a tick borne infection.  However, about 3 1/2 years of extensive antiobiotic therapy – and NO, I do not want to get into the political battle of 21 days and you are no longer infected vs. treat to you are cured theories; I tried them both and found the later to be successful for me – my doctor prescribed minocycline.  I had a terrible respiratory infection and still quite symptomatic: migraines, malaise, joint pain, etc etc etc.  I believe I was the 2nd person prescribed mino for possible use as an anti lyme/tick borne disease.  Within 30 days I began to regain feeling in my right hand (I had lost all feeling on my right side 3 1/2 yrs before)….it began with a vague tingling. I stayed on the mino – and guess what?  The feeling began to come back slowly moving from my fingers and toes all the way up through my body.  Within a few months on mino I regained my health, moved from a wheelchair to a cane to walking to exersizing to eventually running marathons.  My lyme doctor began to suspect that I might have had Bartenella all along – and along with the other tick borne diseases.  I was never tested for Bartenella, nor can I do so now – as I am past my prime, so to speak.  Interestingly enough, I began having significant problems in the late spring of 2007 – numbness and a lot of pain in my lower back.  My health continued to deteriorate and I suspected Parkinsons (in my family).  After many, many dr appointments in and around NYC I was finally diagnosed with CIDP and dysautonomia.  I was on IVIG for 17 months, first 1x/month, then 1x/week then 2x/week.  I developed all kinds of reactions and discontinued it.  Steriods induced uncontrollable hemmoraging – bloody noses, etc and ER admission for incredible headache and high blood pressure.  Now I am doing plasma pheresis.    I AM VERY INTERESTED TO READ THERE MIGHT BE A CONNECTION BETWEEN CIDP AND BARTENELLA.  I frequently ask my NYC doctors, experts in neuromuscular diseases and one of the centers of excellence for CIDP if there is any connection to my extensive history with neurologic Lyme and multiple co-infections.  They believe my extensive antiobiotic therapy – including almost 10 years on minocycline – should have eliminated that connection.  They do admit, however, that much is still to be learned about the aftermath of Lyme disease, particularly cases as severe as mine.  PS: I got Lyme disease in Old Lyme, CT between 1987 – 1990.  I volunteered in a theraputic horseback riding program, “teaching” multiply handicapped children how to ride.  We were always in waist high grass and ticks/bugs were part of the program.  Each and every volunteer and instructor has been dramatically ill with Lyme.  Hmmm =