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Sternjs

Anti-Neuronal Antibodies Negative- Now What?

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Our 11 year old dd has been out of school all year. Almost a year in, she remains positive for Lyme, Strep (asymptomatic), Mycoplasma, Coxsackie, and HHV6 along with a highly elevated IgM though she has been thoroughly tested for allergies all of which are negative. All this despite 6 months worth of everything from Ceftin to Biaxin, to Doxycilin, to Levaquin and other antibiotics as well as a small store;'s worth of supplements and homeopathic support.. She has been diagnosed with encephalopathy caused by an autoimmune response to the various antibodies. We have seen Dr T and are now with Dr B in NY both of whom have been great but we still don't have our girl back. Dr B believes the next step is IVIG but of course insurance turned us down. He had her tested for anti-neuronal anitbodies in an attempt to find something the insurance company would more easily recognize as appropriately treated by IVIG. Sadly/happily (not sure which) the test came back negative. I'm sure we will appeal the original insurance decision but we are very lost about what to do next. We've tried CBT but our dd won't or can't (so hard to tell) participate. Do we save our money and bring her to the Rothman Center instead or go all in on the IVIG? Is anyone aware of a comprehensive treatment center in the northeast? Has anyone else been lost in the wilderness? My wife and I will never quit looking but could really use some fresh ideas...thanks for any help.

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What about Lyme co-infections? Are you seeing an LLMD? We are a year in as well, without anything positive to show yet. However, we're pretty sure we're still dealing with infections. I'm reluctant to consider IVIg until infections have been cleared, but I don't know more about that. We're going for a combined antibiotic and herbal approach, but my understanding is that lyme&co will take a long time to fix. It is complex. Then there's the genetic defect/methylation angle...

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you said your dd was diagnosed with encephalitis. if that is the case, what grounds does your insurance offer for denying IVIG?

I would try that way. there were older posts on how to approach insurance and you can repost on the same topic asking about the experience with your specific insurance.

Dr. B from CT may have advice how to approach, I think, Blue Cross.

also, if you are close to Yale, you can see if they would do it for free as a part of the PANDAS study.

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Have you tried tonsillectomy? My son has strep, lyme, myco, HHV6, CMV, and PANDAS and our single best result was from having T&A which removed a bacteria from his tonsils that we did not even know about -- veilonella dispar. I have a feeling many of these kids have so many infections it is hard to tell what is causing the most problems. I was shocked at how much better he got after T&A -- and he still has high titers for all of the above and most likely bartonella.

Melrmix

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I can only give you my own experience with IVIG while having lyme. My son had undiagnosed lyme and had 1 high dose IVIG. It produced a horrible, 10 week herx response (herxheimer response = a worsening of symptoms due to toxins released by die-off from spirochette bacteria like lyme, syphillis et al). Lyme had supressed his immune system for so long that when we dumped the antibodies of thousands of healthy donors into his body, the slaughter of the lyme was far greater than what his body could eliminate/detox. He ended up overwhelmed with both toxic die-off and an autoimmune response and incredible inflammation. It was one of the worst times we ever endured.

 

So if your DD isn't strong (doesn't sound like she is), you may be better off going more slowly. I know you already have more than enough infections to contend with, but when my son had been battling Pandas and lyme for several years and still wasn't getting/staying better, our LLMD said "when people have been with me and still aren't responding, I tell them to look for mold". Sure enough, we now know, years later, there was mold in his classrooms. When he moved out of that environment, he made progress in leaps and bounds. A year later, he was off all antibiotics (after having been on as many as 4 at a time) and after plasmapheresis, IVIG, T&A, steroids - had all failed to get him well.

 

We removed the mold problem, which allowed the immune system to fight side by side with the antibiotics, and he got well. He's been off all antibiotics for 2 yrs, and he's gone from barely passing each grade to straight A's. His 1st grade teacher told me she thought he had autism. His 3rd grade testing said he had an IQ of 93. His 5th grade testing said he had an IQ of 112 (after being away from mold for a year). In 7th grade, he's high honors and is described as "above average-superior" compared to his peers. Yes, partly I'm bragging because I always felt like my real son was buried alive in an avalanche of illness and it feels so good to be on the other side, finally. But I also say it to tell you to not give up on the child you know is in there. It may bring you on a journey you never ever expected, but the answers are out there.

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