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Everything posted by lfran

  1. The NIH put out a white paper on PANDAS within the last year or so. Not Lyme, but since a lot of the treatment is similar, maybe you could go under that umbrella.
  2. We are also paying out of pockt for everything. Upon a recommendation from someone else on this board, I have found that Costco has the best prices for meds. If you need azithromycin, for instance, it is about $400 at CVS drugstores and $120 at costco for a month's supply (at my DS10's dosage, at any rate). Also, if you want liver function tests and no one will order them, you can try privatemdlabs.com and look for liver function profile. It costs around $50, but at least you can order them yourself! They have a lot of other tests, too -- I have never used them, but I am glad to know t
  3. So sorry. Which urine test? For the Lyme DOT Blot urine test, we were specifically supposed to be ON antibiotics. There are some natural anti inflammatories -- turmeric and green tea supplements helped for a while.
  4. I'm pretty sure that Igenex has a special add-on test to follow up on equivocal 31 and/0r 39 results. It is called an Epitope test (this is from memory -- I think it is test #488 and 489. They keep the blood for 3 months for possible follow-up, so you can have your doctor order these tests on same blood as original western blot. I would call them -- some of their phone reps know a lot more than others, so if you don't get good answers, keep calling until you do.
  5. If your DD is already on abx, you could try the urine dot blot test from Igenex. A lot of false negatives, but it looks for the Lyme antigen in the urine so if you come up positive, that's pretty definitive. That worked for us. If your doc will do some food allergy testing, go ahead with that. Also, will your ped sign for an Igenex or Stony Brook test if you pay for it, rather than trying to submit it to insurance? He may be more willing if he doesn't have to try to submit it. I also followed your route to try to shield my son from all the MD visits -- boy is it tiring! And a lot of
  6. Can someone please post about these? And, can you take them while on antibiotics? Thanks.
  7. I think I recall previous posts about this supplement. Can anyone tell me what it's for, how effective it is, and recommended dosage for kids? Thanks!
  8. Wendy. Would you be able to share which test they do as follow-up? DS10 tested the whole Bartonella panel and was positive only on the antibody test. Do you think that is the only one needed for follow-up? Thanks.
  9. You're welcome. Good luck with it. I believe there are a couple of places like this site, where you can get tests w/o a rx. This is the one I plan on using, but I think there are others, if you search.
  10. If you go to http://www.privatemdlabs.com they have a bartonella test you can order without an MD presciption. However, we did the Igenex route and they offered bartonella tests that don't seem to be available elsewhere -- the Bartonella FISH test. See this link for their sample form -- go to the bottom to get the single disease tests. Everyone should consider using their form from the website instead of ones the doctors have, because they added new tests and if the doctor hasn't downloaded a form recently they won't have the latest choices. http://igenex.com/files/PATIENT_TEST_REQUE
  11. I haven't watched the video yet, but you can buy tick twisters from Amazon. They are pretty inexpensive. There are different kinds, so see which you like the best.
  12. If you look at the first paragraph in this link, they refer to the NK cells (the ones we are interested in) as CD57/CD8 subset. http://www.anapsid.org/lyme/strickerpanel.html However, if you look at this link (an article by the scientists who discovered it, plus a refutation by other scientists) they refer to the CD57+/CD3- cells as the NK cells. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2772377/ My DS10 has CD57 results from both Igenex and from Quest, run about 6 weeks apart. Igenex reports them just as NK cells and his number was in the low 40s. Of all the Quest results, the on
  13. What is the interaction between rifampin and milk thistle? If milk thistle is no good, is there a good liver-protecting substitute? Thanks.
  14. You know, it may be coincidence, but when we added milk thistle for liver support, one of DS's liver functions went from just over the borderline of high to bottom of normal in a very quick time period. And that was at the same time as an increase in abx.
  15. When I posted the same question a month or so ago, several people posted that they were on rifampin for bartonella. The Lyme book I have also mostly recommends rifampin. You have to be careful and check liver functions with that, though. Most people say it takes 4 months of treatment at a minimum to clear it.
  16. Michael -- I called Igenex today and if I understood them correctly, their test corresponds to Quest's CD57+/3- value, which is what I suspected even before I called them. So, if you are active on those other boards, you can float that information out there as a strong hypothesis. It used to be that Quest did not do the CD57. Recently (maybe 3-5 months ago?) they started doing it. Since then, on another lyme message board that gets a lot more traffic than this one, I have seen maybe 5 or so posts of people saying they had got it from Quest, posting the results, and hoping
  17. Yes, it was already done and it is very confusing. There are lots of numbers and ratios. I found these two articles that make me think it's either the CD57+/3- number or the CD57+/CD8+ number that represents the CD57 Natural Killer cells that are important for Lyme monitoring. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2772377/ http://www.anapsid.org/lyme/strickerpanel.html I was hoping someone here might know more. Thanks. It used to be that Quest did not do the CD57. Recently (maybe 3-5 months ago?) they started doing it. Since then, on another lyme message b
  18. Does anyone know if the CD57 panel from quest is the right panel to use for Lyme? I thought it needed to be the CD 57 NK test, offered by Labcorp and Igenex. Is that what Quest does as well? Thanks.
  19. If you can, I would just work really hard to teach her to swallow pills. I taught one son at age 5 and the other at age 7. It takes some practice (the 5 year old practiced with M &Ms, but they were too big for the 7 year old when it was his turn. But..two days after swallowing small pills, the 7 year old can now swallow pretty much any size -- even large vitamins. In my opinion, it's truly worth the effort.
  20. Call Igenex and see who in NJ is authorized to sign a lab request. I'm in California and my chiropractor was able to sign for it. I paid out of pocket, of course, but if that's an option then you don't have to wait for an LLMD appt -- you can ask your regular MD to order it (especially if you're not going to run it through your insurance) or whoever Igenex says is authorized (like a chiropractor).
  21. I'm really curious how to differentiate between a tic and a compulsion. DS9 definitely had tics from age 6 until about 5 months ago. Now they seem like compulsions to me, but I can't articulate the difference in a way that makes me happy. But he seemed a lot less aware of the tics -- like they just happened, while the compulsions seem a lot more voluntary -- even though he has to do them.
  22. Sniffing tics are very common. My son has had a lot of them - -sometimes sniffing me, but usually himself. Right now he has to sniff his feet, which makes it awkard to move around sometimes.
  23. That is so hard. I am so sorry to hear of this happening to a child. No matter what you tell him, you need to be aware of what the playground talk might be and head that off ahead of time. So, after you use your words and thoughts, explain that his friends will have their own viewpoints, including those who do and don't share the same religious beliefs as others -- for instance, there may be arguments in the playground about whether the child has gone to heaven or not, how common cancer is and whether it is always fatal, etc. When my son (Lyme/Bartonella and probably PANDAS) was 9 la
  24. If you are totally exhausted and rest/sleep doesn't help, I recommend that you get tested for hypothyroidism. It is an easy test for your doctor to run. Unrelenting fatigue was my only symptom and the proper medication helped immensely. Make sure they test for TSH and also for free T3 and free T4 (some labs won't unless you ask for it). Good luck.
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