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lfran

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Everything posted by lfran

  1. It is a genetic test that you can run through quest. Apparently, it is also important to check B12 levels, as well as methylmalonic acid.
  2. Yes, based upon the experience of others on the latitudes boards.
  3. Surprise, surprise, DS10 (Lyme, possibly PANDAS) is homozygous for the C677t mutation. (He is normal for the other mutation they test for). We will start to supplement with the 5methyltetrahydrofolate and hope that makes a difference. He has been on b supplements and NAC for about 2 months and we have seen a lot of improvement with everything except tics. So..I have read that C677t is pretty common (1.5 - 15% of the population, if I read the Quest results right) but STILL. Isn't it significant that our affected kiddos keep coming up positive on these? I also read to avoid Nitrous Oxid
  4. Surprise, surprise, DS10 (Lyme, possibly PANDAS) is homozygous for the C677t mutation. (He is normal for the other mutation they test for). We will start to supplement with the 5methylfolate and hope that makes a difference. He has been on b supplements and NAC for about 2 months and we have seen a lot of improvement with everything except tics. So..I have read that C677t is pretty common (1.5 - 15% of the population, if I read the Quest results right) but STILL. Isn't it significant that our affected kiddos keep coming up positive on these? I also read to avoid Nitrous Oxide if you h
  5. Just wanted to say, since my DS10 started NAC about 2 months ago, he has improved enormously in his schoolwork. Getting a lot more done, and the quality has been greatly improved as well. Teacher keeps saying what a change she has noticed. Tics have varied -- some days increased, some days decreased. In the Yale NAC protocol for their current study on tics and OCD, they started with 600 mg 2x day for 2 weeks, then increased to 1200 mg 2x day for 10 weeks. I think they took kids aged 8 and up, so that might be a reference point for dosages. (I think they are taking participants, if anyon
  6. Can you please tell me laboratory and name of MTHFR test? I really want to get it for my DS. Thanks.
  7. Igenex's Lyme DOT BLOT urine test is usually done while on antibiotics. My son was on abx for 3 weeks when he took the DOT Blot test. They recommend 3 samples, but we only managed two -- one on the last day of abx and one two days after the last day. The former one came back positive, which was sufficient. It is one of their less expensive tests, although it only catches about 30% of positives, is what I was told.
  8. Can you direct me where to test for the MTHFR mutation? Labs, codes, costs, etc? Thanks.
  9. For what it's worth, didn't President Bush throw up on the lap of the Japanese prime minister? Also, would those wrist bands or other types of devices that help with nausea help at all? And a question FROM me: if my son has really really mild compulsions (no obsessions, I don't think) and the compulsions don't interfere with his life at all -- just like an extra tap here and there, or checking underneath the drinking glass once before he drinks (every time, but still, adds only about 2 seconds to his activity) would you still suggest finding a good ERP doc? Thanks.
  10. But please note that you need to be off antibiotics for at least 4 weeks before doing the culture test, so since your child is on abx right now, that's something to consider. You do not need to be off abx for Igenex's Western blot, and you should be ON abx for Igenex's DOT BLOT urine test (which my son tested positive on) but the DOT BLOT test will also miss a lot of positives. But we considered it to be the "smoking gun" and there are more Lyme docs (LLMDs) in the LA area than there are PANDAS docs. Lyme testing is a very complicated matter. I have a really comprehensive article o
  11. If you are in MD, you might want to consider Dr. Stacks, in VA, who was one of the inventors of the device. Also Dr. Sims, the other co-inventor, is in Columbia, MD, I think.
  12. So is it an alternative cyst buster? I think that's why it's being considered, but I wanted to make sure.
  13. Can someone tell me what this is used for, and on what kind of dosage schedule? Is it every day, every week, etc? And, is it tons of $$$$? Thanks!
  14. I am in California and used the philosophical exemption on the affidavit. Both my sons were partially vaccinated when I decided no more vaccines. The schools have given me no problem with my using the form on a partially vaccinated child. Also, if a pediatrician and/or neurologist says no vaccines, hopefully they will provide a medical waiver, which all states are supposed to recognize and honor.
  15. LLM, I am awed by your knowledge in this area, as I am so new and overwhelmed! My son had titers done on day 5 of abx @ CHLA on Xmas. ASO: less than 25 AntiDNase B less than 95 Dr. T is asking for them again and it's only been 11 days since they were done. BTW- I still don't even understand these numbers except that i was told not all kids have high titers. My son has high titers, especially anti-DNASE B, even when on long-term abx, so I don't think it matters too much. One thing to make sure is that it is actually the anti-DNASE B that was ordered. There is a lup
  16. I'm in Pasadena. If you would like to get together some time, I'd be happy to meet for coffee or some such. Let me know, and I will PM you some contact info. I'm in the East Valley, Toluca Lake area. The Dr I saw was a Ramos- Platt. I really hope something good could come from this, I faxed the letter to Dr. T, so we shall see.....
  17. That is great news -- to get another Southern California doc on board. There aren't many. I was just wondering the other day if CHLA had any expertise in the area. If that neurologist seems to get on board, can you PM me her info? I need to find a good neuro for my son. Thanks. (Where in LA are you?)
  18. Dr Thomas Lin in Irvine is a PANDAS doctor that people in Southern California go to. We are not his patients, but he is on our short list, if needed. I also live in LA -- it is a bit of a wasteland. We discovered Lyme, and there are a few more lyme docs in So Cal than PANDAS docs, and that's our current focus. But I'd sure appreciate any PANDAS info for local docs if you come across them. Some of the DAN docs (Defeat Autism Now! docs) might be helpful. I wish you the best. It's hard out here. There is a psychiatrist in Burbank, Dr. Nancy Mullan, but she doesn't want to use anti
  19. Can we continue to get camkinase levels done? I thought Dr. Cunningham's lab was the only place, and that she had stopped. Please let me know. Thanks.
  20. What are the genes we should test for -- dreaded and otherwise? Thanks.
  21. Can you send them to me too? We're considering this as well. Is this the best lab to use? Thanks.
  22. Again, I am so sorry to hear what you are going through. Here is a link to a psychiatrist in Burbank, CA who treats PANDAS non-psychotropically (and also without antibiotics). If I understand it correctly, she feels as a psychiatrist that many psychiatric issues are related to food and metabolic issues. She has an e-book that may be of help. If nothing else is working, perhaps there is something in her work that may be of help. http://www.psychiatryburbankca.com/
  23. But now my own questions, to those who have been down this path. If Parkinson's is inefficient use of dopamine, isn't it the opposite of tics? I thought Tourette's, for instance, was too much Dopamine in the system. And my DS10's Cunningham test showed sky-high anti-D2 Receptor antibodies. But what does that really mean? Are his D2 receptors being blocked, so glutathione would be good? Or is it the opposite? Thoughts?
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