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Everything posted by lfran

  1. I recommend you go on igenex website and or call them to see their compete set of offerings. Also there is a lyme culture test available from advanced laboratories but you need to be off abx for a month I tkink
  2. If you don't have an llmd on board you can call igenex and ask them about the labs they recommend. Dr Harris the director would in the past talk with lat
  3. No advice, but you are in my thoughts. It sounds like you have a good team working on this, and they will have answers and a treatment plan for you very soon.
  4. Ophelia -- I know that you have listed a number of medical conditions, including CFS, which is probably causing your fatigue. However, I want to say that I had horrible insomnia and horrible horrible fatigue that turned out to be my ONLY symptoms of hypothyroidism. I did not have any of the other symptoms. Very shortly after treating my hypothyroidism, I felt totally different. If you haven't been tested for thyroid issues, I strongly urge you to do so. I have also just recently learned that being hypothyroid can itself cause symptoms of OCD. Most doctors will want to order j
  5. How do you get a med sensitivity test? Is there a formal name and/or CPT code for it? Thanks
  6. Igenex will test the tick but it is not free.
  7. There is a sound based therapy called the listening program that you can buy for about $300 that helped my ds with similar too-loud sounds. It is a bunch I special CDs that exercise the ear. We initially got it from our very large HMO so I imagine it has medical okayness.
  8. Ds had very high coxsackie that went to normal after valteex
  9. I second that. We just came back from there and it was amazing and eye opening.
  10. You can use a fake nAme. If PayPal isn't an option you can buy a prepaid Visa card at the drugstore and use that. They do have to mail the kit to you though.
  11. Dr t's genetic testing is $200 and 23andme is 99. All without insurance. Double check with dr t because this was a special arrangement that courtagen was offering.
  12. Dr. Nancy Mullan, a PANDAS doc in California, is hosting a teleconference on MTHFR on Tuesday, April 16 at 5 pm Pacific Time. She is soliciting questions ahead of time, and you can learn more about it by following this link: http://us6.campaign-archive2.com/?u=4eaad9504df1b973b5cca1101&id=2a26e617b1&e=f2e2fcd168
  13. Which part of Florida? If tampa area, could you get him into the intensive therapy program at rothman clinic to see if that might help him cope?
  14. Have you looked into his h. Pylori status? Ds 11 was very high for that.
  15. Do you think that may be why so many of us report increased tics with Vitamin D supplementation?
  16. If your DS is really struggling, you may want to ask if they can make him progressive lenses. This is where they blend the bifocal aspect so there is no line. It feels seamless. There are different brands of lenses. I have an odd eye condition, and when I got my first progressives I asked the doctor if there was a best quality lens. He said "Veralux". It has the widest area in the middle (I think). There are probably others by now. Anyway, I got the Veralux and LOVE my progressives. (DH on the other hand, hated his). Most places will give you 30 days to try them and then will rema
  17. Bumping this, hoping that the previous poster who had a great ENT experience will share the doc's info. Thanks.
  18. My ENT turns out to be very interested in PANDAS. I remember someone posting a few months ago about a really good ENT (in Philadelphia?) who has a good PANDAS protocol. Can you PM the contact info for any ENT who really understands PANDAS, anywhere in the country? I'd like to give that contact info to my ENT. Maybe they can talk doctor-to-doctor. I'd love for my doctor to know more, and to be aware of the protocols that work, especially for tonsillectomies. Thanks!
  19. Aaagh!!! I feel MISERABLE at 5.2 as do most people who are hypothyroid. It may be different for kids but the endocrinologists basically want their patients to be 2.0 or less. The ranges are generally considered WRONG by the endocrinologists as well as by the naturopaths. again, kids may be different but put thyroid at the very top of your list. It definitely causes sleep and other issues. Treating myself for that was a total game changer. You can me if you want.
  20. One thing I have done to reduce the number is to buy large empty capsules and then combine smaller ones into it. Either insert the whole smaller capsules or empty the contents. They're all being swallowed at the same time anyway and this way it helps to combat exactly what you're talking about, which concerns me too.
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