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Everything posted by Hopeny

  1. Be careful with the dosing as you can inadvertently build resistance with Rifampin. I would not skip days, but rather start a lower dose.
  2. It's very very dangerous. My former pediatrician mistakenly under-vaccinated my youngest and she got it. Thankfully because she had had some of the vaccine series, it was a mild case. Cannot imagine a severe case. It's terrifying. If your child gets it you need to be vigilant and do not hesitate to go to ER if things go south or if your child is struggling. Not to scare you but children (and adults) do die from it so if things get bad you need to go to the hospital. Coughing comes in spasms, and then a whoop, my older DD has asthma and I have never heard anything like that cough. If I r
  3. Younger DD had something we thought was a mosquito bite. 30 days later there was a bullseye on the same spot. Once you see the rash it means the disease is taking hold. I'm a big proponent of treat the bite
  4. Cannot imagine what she and her family have endured
  5. I generally agree with you for those that are tick borne illness educated. , the issue is for the tens of thousands that go undiagnosed and told their tests are " negative". Until tests are made more widely available people will continue to suffer. In my daughters case , we have been using the wrong herbal and wrong abx for her specific, less common, strain. We just recently became aware by testing for a specific strain.
  6. The more you read the more it becomes clear that current testing methods are inadequate http://www.infectioncontroltoday.com/news/2014/05/unf-professor-discovers-two-lyme-disease-bacteria-previously-unknown-to-infect-human-patients.aspx
  7. Dr. Fallon might be someone to consider in the interim of figuring out who to go to, while they do not really treat chronic lyme, it might be a start at addressing and assessing your situation http://www.columbia-lyme.org/about/director_message.html From what I have read Dr T doesn't have experience with Lyme
  8. I would start with 1 drop adding 1 drop every week
  9. I put drops in a tiny amount of water or I do use juice. We can only do what we can. Go slowwww and lowww with Byron white, they are very strong, Don't overdo it even if you don't see anything happening. Good luck
  10. We are not dealing with tics but I am curious do other probiotics work?
  11. I'm probably one of the first to ring the lyme bell and yes labcorp is not the best ( no western blot is really definitive anyway) but if it ain't broke for now I think personally I wouldn't try to fix it. People dealing with Lyme go years of being misdiagnosed so I can understand why it creates a lot of passion around being adequately tested, but LLMD's in my experience only treat symptomatic patients, as parents having been through so much I say enjoy your moments of mostly peace right now.
  12. Cara based on the above why are your concerned about Lyme then? I will say I think many maladies are misdiagnosed as Lyme (CFS, Fibromyalgia, even MS in some cases) BTW there are tick borne illnesses in every state except Alaska as far as I know. Personally if my kid was doing really well I would just monitor and that's it,
  13. Have you had a Lyme and tick borne disease evaluation by a Lyme literate doctor? The symptoms you describe are common with Lyme and other TBds. You may want to take a look on ilads.org
  14. LOL I almost never say Lyme to most doctors unless I'm in a happy playful mood and want to amuse myself with guessing the reaction.
  15. In NH there should be plenty of good tick borne disease specialists. I would recommend contacting ILADS.org for guidance, list of doctors and medical guidance for your doctor. Normally I would not say to call the CDC in any circumstance, however because anaplasmosis is at least recognized by the CDC as something very serious you may want to consider giving them a call to ask for guidance. Since you have an acute case at the moment which they seem to believe in they may be able to give some guidance. If it were me I would want at least 30-60 days of Doxy and then would need to figure out what e
  16. We used the cup and it worked. It's a big of a pain because sometimes the pills get stuck. I would use juice. I think we may have gotten pre auth for the compounded rifampin before we switched to the cup, but I cant entirely recall. After a few weeks of using the cup dd switched to swallowing pills without it. You can always fix the teeth further down the road . I think doxy is preferred to mino for kids
  17. I think doxy is the only treatment for anaplasmosus but nicklemama is right there may be other things at play. What state are you in?
  18. My daughter had this. It's very dangerous, you need at least 30 days doxycycline. What state: type of hospital was he treated in? What level do you mean by not well? I think I wd suggest you have your primary doctor call ilads.org for guidance, or even in this extreme case the CDC which I wd normally never recommend for Lyme
  19. I would do 30 days, that's what my very non ilads ID doc gave me when I thought I had one myself. Also it will get at the nasty co infection a ehrlicia etc. there has been shown to be transmission within one hour, the 24 hours is something I think someone made up
  20. Dr zhang has an office in NYC and I'm pretty sure he has a website with info
  21. Please keep us posted on how the mepron works for Bart.
  22. I agree and think it's a good point to consider all possibilities. Sometimes rightfully so we get a bit of PTSD ourselves. I had my youngest evaluated for pandas and everything came back negative. Her behaviors are completely different too than older DD, but she does have sensory issues and an immune disorder. No changes on prophylactic abx for her immune disorder though I will say enhansa seems to help with her attention. So for us we don't seem to have a sibling issue though of course others may.
  23. Brain fog cleared for dd with Lyme abx treatment, if I recall was cleared with augmentin/biaxin
  24. on the abx side Rifampin/Zith or Rifampin/Doxy. Our LLD likes low dose compounded arteminisin and Byron White A-Bart and A-Neuro I think it's called,
  25. I would talk to the prescribing doc, trouble sleeping is also a steroid effect I have seen
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