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Found 114 results

  1. Hi, Just received blood test back... ASO AB 375...3 months ago it was 368 DNASE-B AB 189...normal Streptozyme Screen....Positive A We've been treating lyme for 2 years then found Babesia, treating this for 1 year when I thought possibly he could also have PANDAS..only came across the ASO AB test after I had him tested because I had strep. My DS (23) doesn't speak, mentally disabled by all this, was "normal" before this all started. His babesia level is now 1:64, 3 months ago it as 1:1024 (normal is under 1:256) so I guess were doing much better as far as that's concerned...numbers going down. Now treating Bart (suspected). Last test was negative. So does this mean my DS does not have PANDAS? Within the 1st year this all started he did exhibit some PANDAS symptoms (looking back) OCD, rage. Both have "gone away". Didn't know about PANDAS back then. any thoughts?
  2. 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!
  3. 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 pills (chemet) stopped in March. Should we go back on them or do IV chelation? Is there another way to deal with this? any thoughts are appreciated His Mom
  4. 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
  5. 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? Just thought for people just beginning to deal with this or not sure, they can maybe refer back to this for help.
  6. 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
  7. 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!!!!
  8. 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 alpha-aminoadipate..high 2.6 Beta-alanine...high 19.3 A couple of others are high also. I told the office I'd bring these tests results with me but they said the Doctor would probably want us to take more test (his own blood work) Is there anything I should ask specifically? Bring with us? thank for any help His Mom
  9. 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
  10. 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
  11. 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). When I mentioned this to his LLMD, she did blood work and his ASO titers (strep infection, yes?) is very high so she put him on Moxatag for the month. In looking back thru years of blood work, I notice his ASO numbers have always been high. My son did have episodes of OCD about 6 months after being diagnosed with lyme. He's even worse now.....his main symptom is uncontrollable laughing, been doing it since 1st diagnosed but its gotten worse over the years...now its constant all day and into the night. None of his docs can ever figure out this symptom or seem to give us anything that's helps. Now getting to sleep is terrible, every night its a challenge. Some docs we've taken him to have said schizophrenia but others, including an "expect" in this field said no. He's so "lost and confused" that we can't ask him any questions, he can't answer us...he only says 1 word phrases and even those usually aren't the appropriate response to our question. I don't know much about PANDAS...is there hope? cure? can he get better? or is this like lyme, treat and pray? ANY help would be greatly appreciated, we just don't know what to do anymore thank you His Mom
  12. 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 something like this, I search and search the web and nothing. Even his psych doc has never seen this. There is a med for this, Neudexta, but that too doesn't work on him. His Mom
  13. 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 Lyme treatment. At the end of April, she would like us to add Tindamax, twice a week to rule out (or eliminate) the cyst form. If all goes well, we could try stopping all abx by the start of summer. Our LLMD doesn't think the Tindamax will create a huge issue for my son. Besides the Lyme, he is a very healthy child and hasn't had any issues with detox so far. I've come across many unpleasant Tindamax stories and it has started to make me a bit nervous. I've heard detox is key. I'd like to be as prepared as possible, so I'd love to hear your recommendations and advice! Just in case anyone is interested, here's what we've had great success taking since the start of our treatment: FloraMyces (am) Metagenics UltraFlora Synergy (pm) Vitamin D- started with 1000 up to 2000 Multi-vitamin Nordic Naturals Children's DHA Thankfully, we've never had a yeast issue using this combo of probiotics. Once we go off antibiotics, our LLMD plans to work in some naturals for awhile. I know she uses something for biofilms too. Thanks!!
  14. 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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