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  1. I just wanted to share this article. I am not promoting this lab and did not use this lab for testing. I have had a difficult time understanding why my son's symptoms are so different and yet these anti-neuroantibodies have shown up. The first time he had the Cunningham panel ran it could not be read as unlikly or likely. The marker was in the middle. My educated guess is that my son's body had accepted the antibodies as part of his body. The second time my son had this test was when he had a double ear infection. Both ears inner and outer, very painful, and his symptoms of tremors, vocal tic
  2. I'm sure you can all relate to how RELIEVED I am to find out that DS is positive for Lyme. FINALLY we have SOMETHING to work on. Our ND recommended Dr. M in NY and Dr. Charles Ray Jones who I will be calling soon. We have all these natural remedies that I have to sort out. Calling my family dr to start on some stronger abx while we wait. My brain is on OVERLOAD!!!! Wheeeeeeeeeeeew!!!!!
  3. Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks
  4. Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks
  5. Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of co
  6. Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom
  7. I have not received my Buhner Book on Lyme and coinfections yet through the mail. This question might be answered in there but I really need to know what band might specifically indicate mycoplasma infection from Lyme. I will be seeing the cardiologist tomorrow and want to approach him about running some more test. I am reading more on Lyme and its coinfections. I am wondering if my son's mycoplasma P antibody levels are from a tick bite or from the virus itself. There must be a way to tell the difference. Any help would be appreciated. I think these test can be run through IGNEX or Stoneybro
  8. Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak
  9. Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet a
  10. Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor
  11. Hi, Need some advice....freaking out abit. Had appt. yesterday with neurologist at NYU....told him everything about my DS 23. Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair. He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest.
  12. I apologize ahead of time for the long post. I have been a long time reader/researcher on this great forum, but this is my first post.It's so hard to be both the 3-ring circus leader and Sherlock Holmes at the same time, and I am feeling lost and worried- so I could use some of your guidance. I will try to give you brief history up to this point. I had a very long road to discovery of PANDAS/PANS with DS8. Though he was a healthy and happy baby, at around 18mos he would have repetitive strep- he also seemed to speak less or lose speech. The big culminating episode that is forever etched
  13. Hi, We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now. My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive. Then is 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections. So does this mean he now longer has any of this? We've actually gotten rid of it? If so then why is he no bette
  14. Hi, Called Dr. B but they said they do not take my insurance and even if I come in they are not doing IVIG right now and if they did my ins. wouldn't pay for it. They said they will put me on a waiting list if I want, supposed to call back. Can someone please give me another immunologists or another doc that does IVIG. LLMD thinks IVIG would be good for my DS. Nothing else has worked. thanks His Mom
  15. Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it
  16. 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
  17. 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
  18. I just had my phone consult with Dr. J. Now I nothing bad to say about the man, he is very sweet and incredibly brilliant. I did feel that we did not get a straight answer from the first visit. I finally pestered the office and he called me back. He said he feels Ian is dealing with Lyme. He said to stay on the combo of Augmentin and Azythromiacin, and wants to add in a cysts buster (I forget the name). Now I have a few questions from those with more experience here because between Dr. J's speaker phone and the fact that he tends to mumble a little, I may not have heard everything. Ian had
  19. After three months of IV claforan, DS's PICC line is being taken out tomorrow. As scared as I was to put that thing in, I'm thrilled and scared to take it out! He is physically doing so much better; he is working out to the extent that he can with a PICC line. He has lost maybe five pounds and looks much more fit. I'm scared because of the thought of a relapse, but he will still be on orals for maybe six more months. Plus, the wonderful Dr. J and his staff are still in our corner and I feel we are supported in his treatment. I was thinking of some of the interventions that have been do
  20. 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
  21. So dd11 has been diagnosed with 2 mutations of MTHFR through her new LLMD. I don't have the lab work in my hand yet so I don't know what the mutations are. LLMD is putting her on the methylated supplement for it. dd10 and I need to be tested now. Has anyone found that your regular doctors will run this test? We have appointments in 2 weeks to find out. But wondering what your experience was and if we should just to to the ones I see on line for $100 - $200? dd10 and I don't have an LLMD at the moment. Thanks, Susan
  22. 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..
  23. 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
  24. 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
  25. 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
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