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Everything posted by lfran

  1. Thanks for the info. I also posted the link on the Lyme board, and was told the link didn't work, so I'm posting a direct youtube link here for anyone who has the same trouble but wants to see the video. http://www.youtube.com/watch?v=uQRCpdcGwIU
  2. I can't get the link to work. Here it is as a youtube link. Sorry. http://www.youtube.com/watch?v=uQRCpdcGwIU
  3. I know this is Parkinson's and not Lyme/Pandas/tics etc, but I thought this video was amazing. Take 2 minutes and watch it, and let me know what you think. http://www.wellnessh...t.asp?id=339544
  4. Take two minutes and watch this and see what you think. Unbelievable. http://www.wellnesshealth.com/content.asp?id=339544
  5. Where do you live? Someone may know a doctor or other practitioner in your area.
  6. Which antibiotics is he on? There is some medical literature out there that shows that Amoxicillin can cause intrusive thoughts and other psychiatric issues. I am 99% certain that that is a factor in our family. If your son is on amoxicillin or an amoxicillin-family abx, especially at a high dose or for a long time, you might want to look into this. I know it sounds crazy, and it's not common, but it's out there (and it's even listed in the possible side effects in some of the websites I researched).
  7. I just wanted to add, they talk alot about sensitivity and specificity. My understanding is, the higher the specificity, the less likely of a false positive, which is my concern at this time. Ditto on the thanks
  8. Here you go. I was interested in them because DS10 was mainly 58+ (plus we captured the antigen in his urine). Also positive for bartonella. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/ Ditto on the thanks
  9. The Europeans consider Band 58 to be quite significant, and you have a double positive on that. I have posted links to the European studies recently. I thought they were very informative. ' Ditto on the thanks
  10. What about following up with antibody testing to see if it has receded? We also stopped rifampin (after 5 months) due to liver issue, but a simultaneous antibody test showed that he was just about negative (he'd been positive and was now on the upper end of normal). He actually did great for the 10 days off all meds. A little bit of anxiety came back after almost two weeks. He's been off rifampin now for about 3 weeks and seems to be doing okay. Any thoughts you can send my way? Update: I felt a bit guilty about firing off such a "blunt" response to your question. I edited it
  11. That is wonderful and amazing. So happy to hear it. Gives hope to those of us who are still struggling. You should try to get that published as a case report in the medical literature, so that mainstream medicine will start to take notice. Do you have any journal entries, videos, etc of that terrible time, to use as information for a case report? Can I ask for clarification? You say she was diagnosed almost a year ago and has finished 5 months of treatment. Were you also treating for the first 7 months, but ramped it up at the end? Or was it a different combination of meds? My DS1
  12. I am so sorry to hear this. I remember how excited you were to be going there. This disease truly stinks.
  13. Thanks! I will do that. (Hope he won't think I'm a kook!) Hi Ifran, Those are great questions do you have the doctors email address? It is clear001@umn.edu I think it's best for you to email him hopefully he will answer your questions quickly!
  14. Tamistwins -- Here's this odd thing, but I would like to ask this researcher and/or ask you to forward this questions. DS10 has Lyme and may have PANDAS. All members of our family (including myself) have elevated DNASE and ASO. I also have tonsil crypts (crevices in my tonsils, actually pretty common) which accumulate tonsil stones (also pretty common) that are disgusting and which I have been told are bacteria, etc that accumulate in the crypts and which I cough up every so often (sorry for the TMI!) (They look and smell awful). What I have always wondered is...could strep be hid
  15. We were told that rifampin was the drug of choice for bartonella. DS10's titres went from positive to almost negative in 4 months on rifampin. You have to monitor liver functions, though, and it turns their urine and their tears orange.
  16. My DS10 tested with postive antibodies for Bartonella and a positive urine DOT blot test for lyme (Igenex). His Western blot for Lyme was not positive by Igenex or CDC standards, but I researched a lot and he would have been diagnosed with a postive Western blot in both Europe and China, based on his reactive bands. He has no joint pain or other physical symptoms. His main symptoms are chronic motor tics, high anxiety, and minor compulsions. Treatment wth abx, including for bartonella, has made the anxiety mostly go away (bart is associated with anxiety). Still hoping for the tics and
  17. I second that. Dr. T is great for emergencies and getting people started. I would contact him ASAP.
  18. So sorry to hear this. You probably know this, but hyperthryroidism can cause significant weight loss even with a good appetite. This happened to me when too much meds for my hypOthyroidism put me into a hypERthyroid state.
  19. Here's another study, looking at percentages for single band Western Blots, this time from China. http://www.ncbi.nlm.nih.gov/pubmed/21112481 Here are the relevant bands. You can see that p58 is included (with a specificity of 99.4 for IgG, now we're looking at 0.6% false positive rate for the presence of a single instance of these bands (for IgG, they don't include p41). RESULTS: The following interpretation criteria were recommended: for IgG, at least one band of P83/100, P58, P39, P30, OspC, P17, P66, and OspA; for IgM, at least one band of P83/100, P58, OspA, P30, OspC, P17 or
  20. Actually, some doctors think 58 is very important and it is very indicative of Lyme in Europe. I have posted about this recently, but here is a link to the info re: the European labs. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/
  21. Thanks! Just curious -- is your DS taking it once per day or twice per day? I had read somewhere that rifampin works best at night (can't imagine why). Also, how often are you doing liver monitoring? We are doing it about once a month now -- is that what you are doing also?
  22. Hi all. Just wanted to post that after 3.5 months of rifampin, DS10's bartonella titres (IgG) went down from 160 to 40. <40 is considered negative. So...maybe just a little more treatment? Or do any of you suggest alternative laboratories to confirm? Both tests were done via Igenex. Thanks!
  23. Yes, I had to read it over several times, but what I got from it was that European labs use different bands to diagnose a positive Lyme diagnosis than do either the CDC or Igenex. There are different strains of Lyme that show different bands more frequently, and then the authors put together "best" rules that could be adopted as a standard, based on running their samples against all the rules that were used by the different European labs. Table 10 was my favorite table, because it showed that p58 and p41 together give a positive Lyme diagnosis with only an 8% false positive rate from Lab
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