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Hopeny

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Everything posted by Hopeny

  1. My insurance covers enhansa partially, it's slightly cheaper than ordering direct.
  2. The strep pneumo titers show if your daughter has mounted an immune response to her vaccines. The more low titers you have the more succeptible to strep , meningitis etc. my DD had only 3 of 14 at immune levels. She had a prevnar vaccine and mounted an appropriate immune response which was a good sign her immune system is working properly.
  3. Thanks Philamom, I don't like dealing with arrogant (close minded) doctors. Even if not for pans.
  4. My DD had a severe migraine yesterday and I want to take her for a neuro exam. We have good pans coverage at this stage so am not looking for help with that. However I always prefer to take her to open minded doctors and wondered if anyone had feedback on the CHOP neurologists to PM me. I know there are probably a few I should stay away from . Thanks
  5. We've just started DD on a low dose of Zoloft just to give her a boost with her OCD and CBT therapy. Using 12.5 MG/day possibly going to 25MG. We ended up in the ER today for a massive migraine (slurred speech, blurred vision etc very scary) and I'm concerned that may have been the Zoloft. I just don't know. I want to see this through because I'd like DD to get to a new place. I have stopped all abx and supplements just to see where this takes us.
  6. Flmom as far as I know it only looks for Borrelia. With the exception of Bartonella, I think most of the standard tests are adequate for the co-infections. I know that Bart is very difficult to test for. I know others have recommended Galaxy for Bart however I do not have anyone local to do the triple (3 day) draw. DD had a massive horrendous flare in Jan following a sinus infection/pneumonia, has mostly recovered. Her Myco titers doubled from November to feb. I am trying to rule in or out Mycoplasma, Lyme and Bartonella as the route of her psych issues. Dnase was high in November but ASO and DNase normal in Feb so I have mentally ticked strep off for now. ASO has been normal for some time now. I expect results any day.
  7. I just posted a link for a new Lyme test. Our lld has been using it. You may want to take a look at the link and also google it. It seems promising as more accurate than the western blot . I don't know for certain but it's something to consider
  8. My lld who is in Connecticut drew the sample. Apparently even the IDSA went to the lab to try to debunk the test and actually went away re-evaluating their position on the additional Lyme strains. The lab does not grow Bb or other borrelia so there is no possibility of contamination. My LLD did not recommend advanced labs due to the cost and controversy. I will post when I get the results
  9. I don't know much but my doctor seems to think this is a good diagnostic test http://www.dnalymetest.com/. We ran it today, I will post when we get our results.
  10. You may want to look into quercetin
  11. Cara I think it was fcfxer who posted on this before
  12. Recommend seeing your pediatrician for treatment or the prescriber of the antibiotic
  13. I use it all the time 1 mg sub lingual I buy it from the vitamin shoppe. I also take it myself but higher dose
  14. I'm not a doctor but your symptoms sound so Lyme like. Have you read why can't I get better by Richard Horowitz? That could help you understand the tests better and how experienced Lyme doctors interpret the results of testing and symptoms. Unfortunately many ppl infected with Lyme do not test what some doctors call "positive" for a number of reasons. Perhaps too you just have a bad response to penicillin. My daughter never had the rash or went camping , and still got infected. Good luck
  15. Someone else posted once about bravo if you can search it. Fwiw I think that's an insane amount of money . I would want to see a lot of documentation before I would make that investment .
  16. There is a lyme center at Columbia run by a psychiatrist Brian Fallon. I presume that they take insurance. Might be worth calling him, I called him once and he returned my call but he does not see children which is what I was looking for.
  17. We have this issue too i believe from Lyme. One of her initial Lyme symptoms was visual disturbances that have never gone away . My daughter has been able to compensate and is at a high reading level so I have been slow on getting her vision therapy but it's on my list.
  18. At the risk of being a lone wolf and I know this is a sensitive topic, I would discourage anyone from considering not vaccinating their child. as far as I am aware the doctor that claimed he found a link admitted it was completely made up. He lost his medical license. I really urge people to read the research including the publicly available vaers data and read it with a critical eye tk really see if there is a direct causal link. When I studied the data the only vaccine I saw that truly could be directly linked to serious side effects outside of allergic reactions occurring immediately after administration is the menactra vaccine for herpes which I will never allow my children to get. Children and adults are now dying of eradicated diseases such as measles and whopping cough, deaths that were preventsble. I do think there is merit to spacing out vaccines. Tylenol on the other hand I believe has had some studies showing possible causal links. There are other causes that need to be explored. Food additives etc perhaps even the proliferation of devices. How many toddlers do you see glued to iPhones? Gluten etc. my daughter was erroneously under vaccinated by my former pediatrician and contracted what thankfully was a mild case of whooping cough. It was beyond horrifying and it is so concerning to me to think if babies getting whooping cough, measles etc.
  19. Cher's son Elijah Blue went to Germany for Lyme treatment, must be the same . What do they offer?
  20. You may be better off running the titers. My peds told me very unlikely to swab + on abx, they recommended running titers . My dd's DNase went super high while on zith it took augmentin to get it normal. She also got a sinus infection and pneumonia on daily zith, different bugs respond to different abx.
  21. My dd has been on Abx for 15+ months and has super high myco levels. In reading lab 251 the government appears to have done experiments with ticks and mycoplasma for germ warfare at the same time which is why some hypothosize that myco became a Lyme co infection. From what I understand that does not occur in nature naturally. My personal theory on the verge of sounding paranoid is that my dd has this human engineered version of myco which we are unsuccessful eradicating to date. I believe gulf war syndrome is also caused by mycoplasma. I have no answers on how to get rid of it as we have not been successful to date. Dr b told me once cipro as a last resort but I am afraid to use it because of the tendon issues. Someone once posted a paper on myco and using iv abx. It had a lot of good information but I can't recall the poster or title. I'm interested in ideas on treating too
  22. Stonybrook has a fairly solid Lyme test and they take insurance. The key is to make sure report all bands is checked off, otherwise it's the same as the regular labs. Checking off report all bands ensures all the Lyme specific bands are reported. I don't think they test as many varieties as igenex but it certainly is a good option
  23. I have chosen vaccines, I feel the risks of these diseases are too great and with so many taking exclusions eradicated illnesses are making a comeback. My former ped under vaccinated my little one by error (I trusted them never checked) and she got whopping cough at age 3. Were the scariest days of my life. It sucks to manage a mild flare if that happens but I think it's better than watching your child helplessly and praying for their life.
  24. For some interesting reading Lab 251 (I'm pretty sure that's the name) details a what I found to be plausible explanation for the Lyme/Myco connections related to Plum Island.
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