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  1. Hi We are battling a sons tics - getting all sorts of tests done - looking at Lyme, coxsackie, myco etc. While we will do everything in our power, I just need some assurance that this has worked for some people - that there are others who have put their children through all kinds of ABX medications, anti vitals etc and achieved success. I realize only folks who are still struggling stay on in the forums but I am hoping you have heard of success and that there are some of you who have achieved it. Just need to hear of some happy endings!
  2. Hi, My DS (23) has high levels of ammonia via blood test and high levels of lead (34) via urine provoked test. For ammonia, he was on Lactrolose for 30 days, 2 tablespoons once daily, and then we rechecked the levels and they actually went up...now doc wants him on it 2x day but because of everything else he takes we can't fit it in. Does anyone know of something else I can use besides Lactrolose. If so, for how long and how much? Also just received his urine results and it says high levels of Lead. How he could have gotten this I don't know. He was on 6 months of chelation pi
  3. It doesn't mention the new Lyme culture test http://www.bostonglobe.com/metro/2013/06/01/lyme-disease-rise-and-controversy-over-how-sick-makes-patients/OT4rCTy9qRYh25GsTocBhL/story.html
  4. Hi, Was just wondering if maybe it wouldn't be a good idea to have a running list of what people think of the certain antibiotics that worked best for certain diagnosis; PANDAS/lyme/bartonella/babesia/Myco P and some combos as well. I believe you need an intracellular and extracelluar drug along with cysts buster. Any drug not good on its own? Some that work better together? How long to stay on abx / combo to see if working before switching; 1 month..2 months? Rifampin? Zithromax? Minocycline? Omnicef (Cefindir)? Doxycycline? Plaquenil? Flagyl? Tindamax? Ju
  5. Hi, Did already posted that I had my 1st appt. with Dr. T in one month but now I'm wondering if Dr. B would be better. I only ask because of all the blood work that's going to be needed and also the money for the appt. I think Dr. B takes insurance, yes? I can only afford one of them, where do you think I should put my money? FYI: son been seeing LLMD (currently on #3) since 2009, only worse. His Mom
  6. Christian mom says you can help me find a good lyme dr closest to us. Please pm me so I can msg you or email you. Thanks so much!!!!
  7. Hi, I just made my 1st appt. with Dr. T in 1 month. No sure if my son (22) has PANDAS but everything fits. He's been treating w/a lyme doc for 3+ years and still not better. All mental, nothing physical. Got some blood work back today: ASO 372...down from 402 back in Oct. 2012 Ammonia levels higher...71....was 58 on last test Positive for Streptozyme scrren and streptozyme titer Copper low, 0.50 M. Pneumoniae AB (IGG), EIA...3.17 high, normal is <=90 IL-4 still high at 6.03....normal 0.0 - 4.1 Cystine...low 13.4 Hydoxproline..high 52.4
  8. Hi, Been treating with an LLMD for 3+ years and just recently starting thinking this can be PANDAS also since my son isn't getting better. Anyway, brought it up to my LLMD and am starting my son on Aurgmention (?) and Biaxin. Just about the only 2 he hasn't tried. Can I ask what LLMD 's people are seeing. I have a list of PANDAS docs, thanks to this forum. I am now seeing an excellent LLMD (past 6 months), was just wondering. Always good to have a list Also, if someone PM's me, where is my inbox/mailbox...can't find it. thanks
  9. Hi, Was just wondering if there is a supplement or herb or anything that you give your child to help them when they are having an increase of symptoms, whether that's tics or behavior. Something to calm them (symptoms) down. thanks
  10. hi, my son, now 22, diagnosed with lyme and rocky mountain spotted fever in Dec. 09. Been treating every since but he has only gotten worse, all neurological, nothing physical. Recently positive for babesia in 2012. Again, still treating. I've been trying to research anything that might explain why his neurological symptoms are getting worse and now I think just maybe PANDAS is it. I had a strep infection a couple of months ago so they checked him out. Our family doc put him on amoxicillin for 10 days because she said his throat looked red (his culture came back negative).
  11. Hi all, decided to start a new thread for uncontrollable laughing. My son 22, has lyme and babesia. has been treating for 3+ years. Been on numerous abx thruout. He's only gotten worse mentally, nothing physical. Now he's totally mentally disabled. doesn't speak but 1 word phrases. Sees a lyme literate pych doc. He has prescribed countless meds to try and break thru and stop the laughing by nothing works. We are now giving him sequerol, first to help him sleep, but now thruout the day for the laughing but that too isn't working. any thoughts what could help? Anyone know of
  12. Hello! My DS8 was diagnosed with Lyme last Spring. He was also diagnosed with PANS triggered by the Lyme. For the last 12 months he's been on a combo of Zithromax and Omnicef and doing wonderfully. I am happy to report that he hasn't had much in the way of symptoms for the last 6 months and absolutely no symptoms for the past 3 months. He was never diagnosed with co-infections (not really any symptoms and lab tests all came up negative). We feel pretty comfortable that he is ready to move on to the next stage of treatment. Our LLMD feels that slow and steady wins the race with Lym
  13. A protein has been identified that ultimately will lead to much better testing results to find active lyme disease. As we all know to well the inadequacies of present lyme test this one looks very promising: because if you have the protein in your blood then it proves you have active lyme and need treatment. Now all we have to wait for is getting this test on the market. http://www.sciencedaily.com/releases/2013/03/130326194140.htm Red
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