CIDP – Active Infection

    • Anonymous
      August 17, 2012 at 2:42 am

      My son was diagnosed with CIDP over 2 years ago. Until we were able to establish the link between bartonella infection and CIDP we did not see any progress. We are trying to get the word out: get tested for bartonella. We offer information at our website, and on our FB group beating bartonella.

      It may not be the cause of yours but you owe it to yourself or a loved one to rule it out. Especially if you are experiencing symptoms that a Dr cannot explain.

    • GH
      August 17, 2012 at 11:21 pm

      You have another thread on this subject in this forum which you started about two months ago. That bartonellosis can lead to CIDP is known. See, for example, this article from the British Medical Journal.
      There are likely many triggers of CIDP, some of them infections.

    • Anonymous
      August 19, 2012 at 6:28 pm

      GH. I am doing whatever I can to get the info out about bartonella and what it can do. You say it is known but apparently, from what I read here on this site and others, it is not well known. Until the bartonella was addressed my son showed no progress. Unless people can find the root cause of what is causing CIDP in them they will stay in this perpetual hellish circle.

      Doctors will say it is a post reaction or just dismiss it. If I was allowed I would post on every subject over and over. Get tested! You have to at least rule it out and you MUST get tested at Galaxy labs (link on my website) since they are the only lab with the proper test to accurately identify bartonella. (lyme must be considered as well)

    • GH
      August 19, 2012 at 7:24 pm

      I hear you, but this is not a Bartonella website. Bartonellosis is a rare condition, evidently, which must be diagnosed and treated whether one has CIDP or not. It is interesting to know that it is a possible trigger for CIDP, but it is not the answer to CIDP generally. Most people with Bartonellosis do not develop CIDP. Most cases of CIDP are triggered by something other than Bartonella.

      I am sure that you are much better informed about Bartonellosis than I, but you seem not to understand CIDP.

    • GH
      August 20, 2012 at 2:28 am

      I should add that it is not true that people afflicted with CIDP must know the cause in order to make progress, despite your experience. Most cases of CIDP are ideopathic — no known cause. Yet there are treatments for CIDP for these cases. Typically, if a mild or subclinical infection is the cause, the infection will be cured by the immune system without treatment, after which the CIDP remains. If one has a persistent infection, CIDP or not, then it must be treated. In order to treat it effectively, it must be diagnosed.

      I am pleased that your son’s infection was diagnosed and hope he is making progress against his CIDP.

    • Anonymous
      August 28, 2012 at 12:04 am

      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 =


    • Anonymous
      August 28, 2012 at 12:10 am

      PS: are there other studies/research/reports/any data from research facilities that support — or explore –  this theory?  I have also been diagnosed with another very, very rare and serious, progressive neuromucular disease with a 1 in a million patient pool.  While plasmapheresis does wonders for my nerve pain, it is only a temporary fix for the pain and by the end of the week, the nerve pain returns in full force and I am no longer functioning.  I would love to learn more about this connection and share it with my doctor.  THANKS FOR ANY ADDITIONAL INFO/RESEARCH/ETC YOU CAN PROVIDE.