Hopeny

Hi all. Well it has been a long time since I have posted. We have seen most of the NY/CT area well known Lyme and PANDAS doctors. DD is now 13 and we have moved to Cherry Hill, NJ area. DD was diagnosed with Lyme and PANDAS five years ago. After much improvement, for the past two years we have been treating her essentially only psychiatrically, keeping her on Lexapro and nothing else. Her psych symptoms (hallucinations, OCD, anxiety, depressions) prompted me on yet another search and I was able to find an ILADS psychiatrist in PA. She did Cunningham test on DD and it came back with 3 elevated markers, one borderline marker, and one close to the border. I should mention that psych changed DD's meds to Pristisq and mini dose Abilify and we have had DRAMATIC improvement. Based on previous Genomind results we should have done this long ago but anyway no time for Monday morning quarterback right? DD is incompatible with Lexapro. Psych (who is also Internal Medicine) is recommending IVIG and I think I am finally ready to try this. Psych believes it is Sydehams Chorea, which by my recent research seems entirely plausible. DD has all the psych symptoms plus is extremely clumsy, always knocking things over and has lots of trouble with movements. Initially I did not research this syndrome because DD did not seem to do the jerking movements described, however looking back, based on symptoms and her clumsiness I am beginning to think it is entirely plausible. I know we need to hydrate, use advil, benadryl and infuse slowly. Wanted to ask for: 1) Brand advice, which are the best filtered brands? 2) experiences - anyone with similar Cunningham results, did this work for you? 3) anything else? 4) local PANS docs, I have considered going back to our CT doctor but it is far. Would like to have someone else on board through this process. Our pediatrician is awesome and very supportive (even told me he ordered a Cunningham test for one of his patients) but I am not sure he would agree with the IVIG so it would help for me to have someone local. thank you to all <3

It seems like there is some momentum gaining around getting IDSA to change their guidelines, and trying to put some pressure on. https://petitions.whitehouse.gov/petition/acknowledge-existence-chronic-lyme-disease-co-infections-and-develop-legislation-funding-treatment/PlClF4hT

I found this too interesting not to share, comments welcome: http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

We were not treating Babesia but had incredible response with Hopkinton Arteminisin. 18 months of leg/hip pain/arthritis gone in one week on Arteminisin. DD was 9 I think and didn't know I switched any meds so it was not a placebo effect.

Do you have a Lyme specialist? Have you heard of Dr M in CT?

A Maryjaw is Dr C a psychologist or psychiatrist?

We have had similar experiences dealing with Lyme and mycoplasma. It's hard to peel the onion and figure out what causes what. We've had good results treating with Doxycycline

I don't know if it was a coincidence as other stuff (major sinus infection, pneumonia ) was happening but my daughter started hallucinating after take one drop of abart for a few days.my lld swears by it but I will never use it again. She is still having some hallucinations ten months later.

I can personally vouch for drs Ohara and Moorcroft, you will get in faster than with Dr B. Btw he sends blood work to regular labs, insurance should cover

Michael jenike at mass gen, I believe he is a psychiatrist but they have a pandas clinic based at mass gen. I do not have any personal experience but have read/heard about him, that's where I would go if I needed to. Do not in any circumstance go to boston children's hospital. Good luck

You may want to post on lymenet.org too but you can't use names just DrJ in dc.

You may want to check drugs.com for an I reaction between zith and Prozac, some abx interact with SSRI's

Fwiw my dd had low body temp until we treated Lyme. It's a common Lyme symptom.

We had an excellent experience with a low dose compounded version of it from Hopkinson pharmacy. In one week it took away my daughters arthritis pain that had lasted a year and a half, before which nothing had worked

Jpdad I am typically pro vaccine, including flu vaccine , with the exception of HPV menactra. Having read the vaccine reporting data, and seeing the serious side effects directly following the HPV menactra vaccine, my kids will not be getting that one. It was the only vaccine as I recall that had events reported immediately after (outside of allergic reactions to others) leaving no ambiguity as to the cause of the reactions.