searching_for_help Posted November 25, 2014 Report Share Posted November 25, 2014 My PANS dd is in the middle of plasma exchange, and we just got a call from her NP that she is positive for Lyme. Wasn't expecting that. Does anyone know if PEX helps with Lyme, or is there any reason it is contraindicated? Any info would be appreciated. Link to comment Share on other sites More sharing options...
sf_mom Posted November 27, 2014 Report Share Posted November 27, 2014 I have a talked with a few individuals over the years who's children had PEX and then later found Lyme. For some, it helped and for others there was a neutral response (didn't hurt but didn't help). I have not heard of anyone worse long term from PEX that later found Lyme et al. One area where I 'imagine' PEX could really help is if there are biofilm's in the blood or the co-infection of Babesia (Red blood cell parasite). I have even heard PEX being used for acute cases of Babesia along with anti-malarials. Hoping you see some relief for your DD. Link to comment Share on other sites More sharing options...
anonymous0121 Posted November 28, 2014 Report Share Posted November 28, 2014 Dr klinghart s has written a paper on how it helps Lyme, there is a clinic that uses it for Lyme patients in Germany and a small clinic here in northern Cali that just started treating adults with Lyme, yes it is actually approved for babesia treatment. Where are you getting it and who ordered it, we have been trying to find it for my son who is suffering badly... Link to comment Share on other sites More sharing options...
searching_for_help Posted November 29, 2014 Author Report Share Posted November 29, 2014 dgfindley, I've sent you an e-mail. Thank you both for the info. The doc who is overseeing dd's PEX doesn't actually think she has Lyme. He says that PANDAS patients seem to test positive for many things, but it's actually just due to their immune systems being screwed up. I'm not sure what to believe. The positive Lyme result came from Neuroscience's new iSpot test, and I don't know how accurate it is. I know the doc overseeing the PEX (technically called therapheresis) is a mainstream doc who doesn't agree with "chronic Lyme". When I said I don't refer to it as "chronic Lyme", but instead I think of it as "untreated Lyme", he reacted more favorably to that term! He just didn't feel there was a need to be on longterm abx, that a shorter dose would take care of it. I mentioned that our dd tested positive for strep (rapid and cultured) after a 5 day course of penicillin, and then 2 other abx, and the docs at the time couldn't believe it, but it did happen. According to the infectious disease docs- that can't happen. But it did, repeatedly. Either way, he really doesn't think dd has Lyme, but if the PEX doesn't help, I'll certainly consider treating the Lyme more aggressively later on. Link to comment Share on other sites More sharing options...
rowingmom Posted November 29, 2014 Report Share Posted November 29, 2014 I would think that PEX would remove any plasma-borne pathogens which may improve symptoms for some period of time. However, any pathogens sequestered in tissue would not be affected and would still remain viable, to re-emerge if the immune system isn't capable of keeping them in check. Link to comment Share on other sites More sharing options...
searching_for_help Posted November 29, 2014 Author Report Share Posted November 29, 2014 Rowingmom, Interesting what you said about pathogens in tissue. The PEX we are doing is actually done every other day for 7 visits, which is different than most PEX procedures. (Ours is technically called therapheresis.) The doc there said they skipped a day in between, so the antibodies that were hiding out in the cells could move back out in to the blood. Obviously, he said it differently than that, but that's what my tired brain picked up on! She's had her 6th out of 7. Not seeing much improvement. More like a yo-yo. Worse at times, but brief periods of a bit better. Way to brief, though! Link to comment Share on other sites More sharing options...
rowingmom Posted November 29, 2014 Report Share Posted November 29, 2014 (edited) Your practitioner is talking about antibodies, I'm talking about the pathogens themselves, not the antibodies they elicit from the immune system. Bartonella is notorious for residing in endothelial tissue and bone marrow, lyme in cartilage and other connective tissues. These would not be effected by PEX, nor would pathogens residing in the intestine, sinuses etc. If the load in the plasma/blood is decreased to an extent which renders the immune system more capable of handling the infection then you may see healing. Edited November 29, 2014 by rowingmom Link to comment Share on other sites More sharing options...
EAMom Posted December 1, 2014 Report Share Posted December 1, 2014 (edited) You might contact this this mom/daughter The daughter (Ruby) had PEX. I don't think it helped, maybe made things worse? Later they found out she had Lyme. Edited December 1, 2014 by eamom Link to comment Share on other sites More sharing options...
T_Anna Posted December 1, 2014 Report Share Posted December 1, 2014 The PEX made Ruby worse. She wass left with no antibodies and no post PEX IVIG : / DS16 had PEX August 2014. Didn't help him as much as we hoped. T.Anna Link to comment Share on other sites More sharing options...
rowingmom Posted December 1, 2014 Report Share Posted December 1, 2014 I first saw these videos posted by Ruby and her mom when we were beginning our PANS/PANDAS journey. A while afterward we realized that DD's PANS symptoms were caused by infection. I have often wondered how Ruby is doing, and hoped that perhaps her mom considered infection other than strep as a cause. Link to comment Share on other sites More sharing options...
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