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Posts 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. 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.

  3. 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.

  4. 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

  5. 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

  6. 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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