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  1. Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it
  2. My dd12 is doing great so I wanted to give a positive update to you guys. After starting to see a lyme doc in DC in May and getting her on a good protocol and getting her MTHFR diagnosed, she has changed dramatically at long last! Brief history..... first strep age 11 months old chronic infections throughout childhood (strep, sinus, chest, ear) sensory processing disorder (age 5) gluten intolerance (age 6) PANDAS (age 7) Lyme (age 9) separation anxiety, unusual fears, OCD, emotional outbursts, unreasonable, etc. MTHFR mutation (age 11) She still reacts to strep but she re
  3. The events I will tell you about occurred only 3 weeks ago. Suddenly and without warning I fell into a deep and dangerous depression. My mother was frightened at my state so she called the police and they found me huddled in a corner crying, not good. I explained to them that it is physical and I do not want to see another psychiatrist, I already see the best one in the state of florida. I showed them all my medical records. I showed them everything I was diagnosed with. I told the cops that I spend almost all day lying in bed with unspeakable and death-like fatigue and on top of it I hav
  4. My son was diagnosed with Pandas in April and I recently got tested. My ASO is 276 (ref range 0-330) and my Dnase is 405 (ref range 0-120). What does this mean? Do I need abx treatment?
  5. For those who may be interested... http://myemail.constantcontact.com/Count-Yourself-In--Be-Part-of-the-PANDAS-PANS-Movement-.html?soid=1103470649803&aid=7V3cVvGYVeA
  6. Today, we met with two physicians at the Clinic at Boys Town Hospital. We met with a neurologist and an ENT. We were not rushed, encouraged to tell our LOONG story, and supported in the diagnosis of PANDAS/PANS. I think for anyone in the Midwest states of Iowa, Missouri, Kansas, or Nebraska; this would be a wonderful resource.
  7. My 10 y/o son was recently diagnosed with Lyme Disease. He also has Pandas. For the most part he hasn't had any classic lyme symptoms but we tested him because of the Pandas. We recently consulted with a naturopath that treats Lyme Disease and these are the medications recommended to start with. I'm looking for any information about these different abx, experiences people have had with them, side effects experienced, etc. He has taken azith for the Pandas but has never taken Cefdinir or Metronidazole. With school around the corner, I'm worried about starting him on this protocol and hav
  8. Today's PANDAS Network.org newsletter provides information on the NE PANS/PANDAS Conference, including speaker list, cost, and how to register! http://myemail.constantcontact.com/Registration-Now-Open-for-NE-PANS-PANDAS-Conference-.html?soid=1103470649803&aid=Qvh9RP1aZkA
  9. My 10 y/o son was diagnosed with Pandas in May. His symptoms have greatly improved with antibiotic treatment. We recently tested for Lyme (no symptoms yet) and received his results yesterday. I don't talk with his Dr until next week so I was wondering if anyone can give me a heads up as to what the results mean and what sort of treatment I can expect? IgM results **23-25 kDa = Ind **31 kDa = ++ **34 kDa= Ind **39 kDa= Ind **41 kDa=+ **83-93 kDa= + All non-double starred bands were negative. IgG results **41 kDa=+ All other bands were negative. As I think back ov
  10. My 10yo daughter is currently in-patient at Nichols Cottage in White Plains and not getting much help at all with her OCD. Does anyone know of a good CBT treatment nearby either in-patient or extensive (maybe an outpatient day program?)? Thanks, Valerie
  11. Hi all, Just hoping for some suggestions here: Recap: DS (23) diagnosed Dec. 09 with lyme, all bands positive and RMSF (was regular kid w/job/car/friends)....starting treating with 1st LLMD....DS very angry/let hair and beard grow (looked like mountain man), started listening to RAP music (which he never liked) all within 1st 6 months....started see Dr. B in Red Bank also. then switched LLMDs, all those symptoms went away and then starting being paranoid, calling police to confess car accident that he had had year earlier, washing hands, going in bathroom for long periods of time..
  12. My 10 y/o son had strep Nov 2012 and was diagnosed with Pandas in April 2013 after severe mood swings, depression, irritability and aggression started. He also has anxiety and Aspergers. Waiting for Lyme testing results. We treated with zith and penicillin for the pandas and also did a course of Flagyl for clostridia. Titers were at 1140...trending down but only at 1080 now. All of his symptoms are much better. The only tic he has is a vocal humming he makes when he watches tv or plays on the computer. Is that normal to have a tic only at a certain time? Dr suggested we try Augmentin bu
  13. Hi everyone: This is my first post and I've been searching and reading a ton of the older posts, especially regarding the Cunningham Panel test that's finally been released as a diagnostic tool. Looks like a lot of you were able to participate in the original studies too! We just got our Cunningham test back for my son and it says "likely" but I'm curious about one particular piece because we had a higher result. D1: 2000 (normal range 500-2000/mean 1056) D2: 2000 (normal range 2000-8000/mean 6000) Lyso: 80 (normal range 80-320/mean 147) Tub: 4000 (normal range 250-1000/mean 60
  14. 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 concerne
  15. 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!
  16. 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
  17. For those who have had genetic testing on their children, has anyone found a gene mutation for PNKD? This gene causes a form of dyskinesia. If your child is positive for this mutation, are you doing anything to address this concern? Do you find that it relates to their behavior during a PANDAS / PANS flare? What are the behaviors your child displays during a PANDAS / PANS flare? Looking for similarities since I know PANDAS / PANS presents differently in different children. Thanks for any input!!!
  18. 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
  19. 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
  20. 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
  21. Hi to all parents who have children with PANDAS. I'm new here and I joined this forum to share the success we had in treating Pandas with homeopathic remedy. We first encountered this syndrome when my youngest daughter turned 5. It was such a sudden change that I had to do a lot of research and experimenting. We have tried a lot of medicines from antibiotic to herbal supplements. There was a time my daughter was taking abt 6 to 8 supplements a day just so we can cure this horrible illness. This went on for abt 5 months then I found an interesting article abt homeopathy and made an appt to an h
  22. 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
  23. 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
  24. 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).
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