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mdmom

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Everything posted by mdmom

  1. My children DS13 and DD11 started very aggressive Lyme treatment 1 month ago. They will start Tindamax next week for the first time. Doctor prescribed 500 mg twice a day for 7 days. Anyone used Tindamax for 7 days straight? I've read a lot about herxing with this drug and it seems most folks don't use it for more than a few consecutive days.
  2. FYI.... Maryland Public Television (MPT) will air "Under Our Skin" on Sunday, June 26 at 4:30 pm on MPT2 channel.
  3. FYI.... Maryland Public Television (MPT) will air "Under Our Skin" on Sunday, June 26 at 4:30 pm on MPT2 channel.
  4. Thought others might be interested to know that Neuroscience accepts insurance and our insurance company paid for 80% of the bill.
  5. My DS13 in the last 9 months was diagnosed with PANDAS by 4 doctors, 3 of which are well-known on the East Coast. None of them could get our insurance to cover IVIG, which is what they all recommended since he has been sick for 9 years. I was forced to seek an integrative doctor and seek out alternative therapies. 1 month ago the integrative doc uncovered Lyme and a co-infection of Babesia. PANDAS treatment must begin with clearing underlying infections, especially Lyme. I HIGHLY suggest you rule-out Lyme and co-infections. Use Igenex Lab or Neuroscience Lab (My Lyme I.D. tes
  6. We just tried the VSL for the first time last week. Stuck with it for 4 days. It caused a lot of stomach discomfort in my DD11 (Lyme, Babesia and Bartonella dx) and extreme diarrhea in my DS13 (Lyme, Babesia and PANDAS dx). come to think of it, my son seemed to have a flare in PANDAS symptoms as well during the 4 days we used it. We stopped using it and changed to another brand.
  7. I see a lot of folks on this forum using Igenex testing. Has anyone ever used Neuroscience "My Lyme ID" testing? It goes beyond looking for just Lyme antibodies. Curious to know your experiences. https://www.neurorelief.com/index.php?p=cms&cid=46
  8. Michael, Have you ever been evaluated for a TMJ issue? It is a co-infection symptom (can't remember which one...Bartonella or Babesia). My daughter was evaluated by an integrative dentist before she got the Lyme dx last month. He explained the TMJ/swallowing relationship and how a dysfunctioning TMJ really compromises the musculature of the neck, shoulders, etc. Just a thought..... As I say..."put it on the to-do list." Good luck.
  9. Sheila, Great info on the link. Jsut a warning - I clicked on the downloadable version of the info (on the link) and as I was viewing it my computer detected a virus and shut me out of the page.
  10. Your breathing issue sounds like "air hunger," a symptom of Babesia or Bartonella, can't remember which one. Hang in there.
  11. change to my own post... It should read my DD11, not my DS11. I have a son who is 13 with PANDAS and a daughter who is 11 with no PANDAS but dx Bartonella and Babesia. sorry....I have brain fog from all the stress.
  12. My DS13 has PANDAS confirmed by 5 doctors and most likely has been sick for 9 years. Meanwhile, in seeking treatment (not successfully, yet) for my son, we have started to connect the dots on my DS11's mysterious physical health symptoms. The doctor we are currently seeking help/treatment from is now looking at both of my children for Lyme and Co-Infections. DS11 has a confirmed clinical dx of Bartonella (has 80% of symptoms and the tell-tale stretch-mark rash on her back - which 10 other docs have ignored). Her Quest Lab tests came back with a positive for WA1 (Babesia). S
  13. My DS13 has PANDAS confirmed by 5 doctors and most likely has been sick for 9 years. Meanwhile, in seeking treatment (not successfully, yet) for my son, we have started to connect the dots on my DS11's mysterious physical health symptoms. The doctor we are currently seeking help/treatment from is now looking at both of my children for Lyme and Co-Infections. DS11 has a confirmed clinical dx of Bartonella (has 80% of symptoms and the tell-tale stretch-mark rash on her back - which 10 other docs have ignored). Her Quest Lab tests came back with a positive for WA1 (Babesia). S
  14. IgM suggests a current infection (newer antibodies) IgG suggests a prior infection
  15. Thanks for all of the feedback, everyone. The motrin seems to be taking the edge off.
  16. thank you! I gave him a regular dose this morning and he'll get another at lunch. Hopefully it will take the edge off. Do you dose the Motrin for days at a time until the exacerbation subsides?
  17. I read somewhere on this forum that ibuprofen is useful during a PANDAS exacerbation. Anyone have any info or dosing recommendations? My DS is 13 and we are still searching for help/treatment. We've had to go the alternative route b/c of insurance denials for mainstream treatments. I need to do something while until our next appointment with new doc in late April. This will make PANDAS doc #5 (We already consulted some of the more popular docs on the East Coast). Thanks for any info you can provide.
  18. My son's immune system isn't great (some slight IGG deficiencies), but not bad enough for immune deficiency dx. Dr. T. is actually out of our network and Dr. B is in our network.
  19. Thanks for the information. I believe as of 1/1/11 there is now a code for PANDAS. It's in the newest ICD-9 book.
  20. Melanie -- We saw Dr. T. once and loved him, but I could see he was struggling with how to build a case to insurance for IVIG. My son's CVID evidence isn't that strong. Do you see Dr. B too? Dedee - My info on CIGNA is hearsay.....my friend with United said that she is sure they cover IVIG for PANDAS. Sorry for the weak information. Thanks to all who have posted so far.
  21. Thank you for your support and well wishes. I have found so much helpful information on this forum in the last few months. How is your child doing? Did he/she have IVIG?
  22. Hello, I just found your post and was wondering if you ever did get BCBS to cover IVIG using the PANDAS diagnosis. I have BCBS and they just denied my son's IVIG for PANDAS; doctor used this dx even though he usually uses an immune deficiency dx. Our case is now being appealed, but I am not hopeful. Any help you can give me is much appreciated. Thank you.
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