CIDP – Active Infection
AnonymousJune 1, 2012 at 3:15 am
It took 2 years, many Doctors and lots of research but we were able to prove our son’s CIDP was brought on by an active bartonella infection which he received from the bite of a woodlouse hunter spider. At first we were dismissed by infectious disease doctors and neurologists but my wife’s persistence paid off. She was able to discover a team at UNC that has spent years proving bartonellas existence. Once the test came back positive and we were able to finally show progress by working with a Lyme literate Dr and using prescribed antibiotics. Our Neurologist came around to the reality. Bartonella can also be transferred from ticks, fleas, and maybe even more. If you are not seeing progress and you have symptoms that fall outside what they are telling you is CIDP (headaches, strange rashes, eye problems, neck pain, etc) then you need a new direction. We are working on a website and hope to have it up soon.
June 1, 2012 at 4:52 am
CIDP is considered to be an autoimmune disease, so the symptoms are caused by the immune system itself, not the infection which may have triggered it. Are you saying that an active infection is causing the symptoms? How, then is a distinction made between it being CIDP rather than an infection which causes symptoms similar to those associated with CIDP? Does the spinal fluid test support the diagnosis? Are the electrodiagnostic tests consistent with CIDP?
I’m not saying the conclusion is wrong, just trying to understand how it was arrived at, as this angle is new to me.
AnonymousJune 3, 2012 at 6:32 pm
Please understand, we have faced people who did not understand before so I hope this does not sound condescending: When our son had the tests you speak of they were still addressing CIDP as a post infection response, and they all showed CIDP. Blood tests would later prove the existence of bartonella, research would bear witness to it’s effects. If you understand how bartonella works you can understand how it all comes together. I am not a Dr so all I can offer is the research that we have that proves how this can all happen. I will let you know when the website it up so you can view it all and come to your own conclusion.
It was a huge day for us when the team of Neurologists at Cincinnati Children’s Hospital saw the light of how an active infection can cause CIDP. I have posted this in the hope of spreading the word so others do not have to suffer unnecessarily.
There needs to be more research into both CIDP and bartonella. Our Dr who specializes in bartonella tells us that when he treats those with bartonella who have developed polynueropothy then the CIDP goes into remission, and only when our son started antibiotics were we able to start to wean away from the IVIG and see progress.
Again I’m not hear to convert anyone or challenge what they think it right. If you are tired of getting nowhere with CIDP then I offer you information, no debate, please make up your own minds. I hope everyone here finds a Dr to help them.
June 4, 2012 at 2:49 am
Thank you. I’m just trying to understand whether this is a case of Bartonellosis which was initially misdiagnosed as CIDP, or whether it actually is CIDP. The latter would require that there be some tests which indicate CIDP and exclude other causes. Were there tests which were supportive of a diagnosis of CIDP?
June 4, 2012 at 7:00 pm
First of all, is it possible for you to post this on the main forum as well? I think it is very interesting and would hate for people to miss it! Second, you mention other ways to get the bartonella, what about wasps? bees? While in South Dakota we were stung by several bees or what ever is indigeonous to that area and soon after started the cidp symptoms. Curiously, what type of antibiotics? The typical lymes iv protocol? We were on a 3 month regimen for sinus infection, wondering if it would help with the bee issue if it was bartonella? I have always felt that some sort of trigger causes the response, your spider issue, our bee issue campy, whatever it may be. I even think leaky gut. We have been better than ever 5 years out, ivig reduced from 2 to 1g/kg attempting a wean soon. Is it because we had this bartonella and the sinus antibiotics helped, is it because after many pro/pre biotics we have fixed the leaky gut? Is it because puberty has rebooted the immune system? Is it because of ivig maybe working as more than just a regulator of t-cells and maybe encouraging or teaching the immune system to prperly produce t-cell regulators? I have no idea. But I am so happy that you have found a critical piece to the puzzle for your son. Remove the trigger= proper immune response again! Awesome news. Please post info of web site when you get it up! Thanks
AnonymousJune 5, 2012 at 3:21 am
Let me try to take this one at a time. Where in the main forum do you feel it would get the most attention?
As far as the researchers are aware bartonella can be caught by fleas and ticks, and although I cannot rule out bees, because before my son’s case they had not come across spiders and woodlouse that tested positive for bartonella, the fact is no one can pinpoint exactly where the bartonella was contracted (it will take a lot more research and money). The antibiotic protocol is a combo of two antibiotics, at this point you have to find a lyme literate Dr and get your son tested. We also work with a master herbalist in Mass who I would be more than happy to give you his number, he is a wonderful resource who made an enlightened statement when this all began “If you find yourself chasing your tail over and over you need to look elsewhere”.
Write to me directly (we can do that here right?) I will give you whatever info you need: Doctors numbers, testing information, research, the herbalists number, whatever I can to help.
AnonymousJune 22, 2012 at 1:55 am
For more information on this we have started a website at: http://www.beatingbartonella.com
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