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Everything posted by Hopeny

  1. 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
  2. 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
  3. I found this too interesting not to share, comments welcome: http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html
  4. 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.
  5. 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
  6. 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.
  7. 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
  8. 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
  9. You may want to post on lymenet.org too but you can't use names just DrJ in dc.
  10. You may want to check drugs.com for an I reaction between zith and Prozac, some abx interact with SSRI's
  11. Fwiw my dd had low body temp until we treated Lyme. It's a common Lyme symptom.
  12. 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
  13. 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.
  14. I think if you are seeing mucous and blood you need to urgently get her to a doctor I would call your pediatrician on call tonight
  15. I think this is an important link of psychiatric disease to autoimmune disorder Scientists find genetic ties to schizophrenia http://www.foxnews.com/health/2014/07/22/scientists-find-genetic-ties-to-schizophrenia/
  16. The Stonybrook western blot is a good insurance covered alternate to Igenex, the physician MUST request "REPORT ALL BANDS" to include all Lyme specific bands, the bands and interpretation have been covered in detail in other posts. You can order the test kit and order online. You may also want to consider the new Milford Labs test which I paid out of pocket for. this test is thought to be much more accurate than the western blot and looks for DNA of two most common strains. Because it doesn't look for all strains it would not rule all borrelia out but a positive would be undeniable as it tests for the DNA of the bacterium. Quest and Labcorp are adequate for Ehrilcica, Rocky Mountain Spotted Fever, Anaplasmosis and Mycoplasma IGG/IGM. Babesia and Bartonella are hard to test for. I'm offering these alternatives which may be less costly than Igenex, Igenex is the gold standard. I have another post on the Western Blot which might be helpful. My LLD also just ran a Borrellia Hermsii IGG and IGM (from Labcorp I think) on a hunch and it came back IGG positive, so after two years we learn that my daughter likely did not have common Lyme Borrelia Borgdorferi but a different strain, you may want to consider this, insurance paid. Hope this helps.
  17. I'm considering this test and the first question was who is this test for? Wondering what folks have shared in terms of personal data and information. Thanks
  18. Personally we have had a good experience with Dr. M in CT. I had a friend who saw the doctor you are posting about but she ended up with someone else. I believe he is a psychiatrist by training. Also I think it might be preferred to use initials and then location. You may want to post on lymenet to get some more feedback, on that board you can only use initials and city
  19. I dvrd it and just watched it, I thought he did an excellent job too. Very factual. I know Kathie lee has been researching chronic Lyme, I'm so happy to see not an IDSA doc , that segment was so important for the Lyme community
  20. Horowitz is the author of "why can't i get better" and will talk about chronic Lyme. It's huge that they are having him on as he is an ILADS LLMD. Please tune in, ilads says it's 10:28 am but I'm not sure if that's eastern time.
  21. sorry to be repetitive but swollen lymph nodes are a common symptom of Lyme and Bartonella. You may want to take a look at some of the references at ILADS.Org to see which symptoms may fit your DD's case in regards to Lyme and co-infections. It is entirely possible that you have multiple infections going on at the same time, some of your symptoms may be related to the tick bite and others not. At this stage I think any infectious disease doctor would be able to diagnose and treat a new case of Lyme and co infections. I just took a tick off my youngest daughter and the first thing our regular ped checked was my daughter's lymph nodes
  22. I am not a doctor but this seems like textbook Lyme and confections. Tests are frequently "negative" early on for a number of reasons. Please see my post that I just bumped up on Lyme Bands, which ones matter. Please visit ILADS.ORG. Where are you located? I can send you some physician recommendations, immediate treatment is best for Lyme and confections. I am a bit concerned about the pimply rash you described, which can present with tick borne illnesses Rocky Mountain Spotted Fever, Ehrlicia and Anasplasmosis - these 3 can have severe and life threatening consequences. My daughter had a pimply rash and had all 3 of these. Unlike Lyme (Borrelia) and Bartonella, these 3 in particular can be tested by Quest or Labcorp so I would highly encourage to ask your pediatrician to run these 3 ASAP. Also I'm not clear why with these symptoms and a known tick bite your pediatrician has not started the recommended 28 day initial course of amoxicillin which is a known standard of care. I am sad reading your post, my pediatrician also misdiagnosed my daughter and she became very ill and has required over two years of treatment, which if it had been treated at onset may likely have been prevented.
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