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Everything posted by mdmom

  1. Elevated EOS can mean lots of things, but often it indicates a parasitic infection, according to my LLMD.
  2. Figured out the cause of the eye blinking tic....I think LLM would call it "over methylation." We had doubled methyl-B12 dose and Thorne's Methyl Guard at the advice of our LLMD. I backed off the Methyl Guard dose first and the tic didn't get better. Then we cut the methyl-B12 dose in half and the tic resolved. We never had to remove the sulfasalazine, which has helped immensely with the GI pain.
  3. My DS16 has been receiving home & hospital instruction services through our school system since May 2011. Prior to this, he was being transported to a special needs school 50 miles from home. After he was properly diagnosed with PANDAS/Lyme/CIVD, etc. in April 2011 we realized that he was being constantly exposed to infections. He has an extensive IEP because of his Asperger's diagnosis. DS could have never tolerated the aggressive treatments we have done and have the stamina to attend school. He is still not physically well enough to go. I'm not sure when he will be able to retur
  4. Please PM me if you know of someone that will remove T&A based on elevated strep in blood and long history of PANS. I have a name of someone in Fairfax, VA, but that's almost 2 hours from home. I don't want to be driving a long distance home after the surgery.
  5. DS16 had a PANS episode last Sunday (extreme anger, threatening to hurt himself or others, screaming, scrunched face). It only lasted 10 minutes, which is a far cry from his episodes years ago. The Thurs. before he complained of a sore throat and Friday he had a red ring around his mouth. Both of these mild symptoms we have identified as his presentation of strep. Sure enough, we checked strep blood levels (ASO and Anti-DNase) and they are both elevated. ASO is always elevated, but the Anti-DNase is sometimes normal. We have aggressively treated for everything under the sun since Apri
  6. It is a mutation that causes it, but it's not always inherited. There can be a spontaneous gene mutation that causes it.
  7. Hey, smart, resourceful people..... I know this not a PANS or Lyme issue, but my complex DS16 (see my tag line) was just evaluated by a physical therapist and he is suspecting Marfan Syndrome. My son is 6'2" (74") with an arm span of 77". He is skinny and his trunk is in disproportion to his long skinny arms and legs. He has very long skinny fingers and thin gangly toes that look more like fingers. His joints are loose and he is hyper-flexible. I am not sure who could rule this diagnosis in or out. Marfan Syndrome can involve cardiac issues, so it's probably something I should inv
  8. High-dose IVIG is what is indicated for PANDAS. I cannot imagine that administering Ig subcutaneously (SCIg) would work for PANDAS/PANS because you cannot deliver high doses of Ig this way.
  9. My insurance is covering the Circumin - $60 is my copay. Yikes!
  10. Both my DS16 and DD14 have been taking Circumin 500mg BID for 5 months now. It is compounded by a specialty pharmacy at a high price of $60 per child per month. Not sure if it is helping or not b/c they take so many other supplements and meds. I noticed that some on this forum use over the counter Turmeric instead of Circumin. Is there a difference? The OTC Turmeric would save me A LOT of money and we are running low on resources after 2.5 years of aggressive treatment for both children.
  11. I would suggest also testing for co-infections. Ticks carry so much more than Lyme. Some of your symptoms(particularly the headache) could be linked to Babesia. LabCorp and Quest test for 2 strains: WA-1 (Babesia duncani) and Babesia microti.
  12. Our LLMD (who is very current on ILADS protocols) says 2 Tindamax 500mg right away and then Tindamax 500 mg BID for 7-10 days following.
  13. CVID is one kind of primary immune deficiency. Good point about the IVIG dosing - I remember reading on this forum that low dose IVIG might exacerbate PANS symptoms. Doc may also order subcutaneous Ig vs. IVIg for an immune deficiency.
  14. Just a warning about the CVID dx (or any primary immune deficiency dx). Many insurance companies require a vaccination challenge test to be done in order to confirm the dx. Usually the pneumococcal titers are tested first (either 14 or 23) and then the Prevnar or Pneumovax vaccine is given. 3-4 weeks later the titers are drawn again and there should be a 3-fold increase in titers; if there is not, a person is considered to have a primary immune deficiency. This is standard practice of treatment among immunologists. Be informed of your doctor's protocol in this area. Some will vaccinat
  15. It's for a friend. If you know of someone, please send me a PM. Thanks.
  16. Thanks for the ideas. We removed dairy 4 years ago and the GI distress immediately went away and stayed away. The GI distress started after a trip to FL for the Rothman program. If it's not a flare of a old lingering infection, we are suspecting a new infection that he picked up in FL (he waded in the Gulf of Mexico, fished and drank some local water) and we were there pre-IVIG tx knowing he had an immune deficiency.
  17. No official dx of IBD or Crohn's. GI pain is his main symptom. Theory is that he has an infection that settled in his GI tract (poss. GI lyme). The sulfasalazine is helping with GI pain and he has been eating better since he started taking it. I'm really hoping that it's not making the eye tic worse.
  18. I will share my DS16's history and maybe you will find something useful in here. Dx with PANDAS at age 13 but symptomatic from age 4. We consulted 4 doctors well-versed in PANDAS and all of them independently told me that my son would need IVIG to recover because his case was so chronic. However, our insurance company would not pay and we could not afford the treatment. The 5th doc we consulted is an LLMD (lyme-literate medical doctor) and this doc dug deeper and found infections beyond strep - Lyme, Babesia, Mycoplasma, Bartonella, viruses. Some of these infections were diagnosed clin
  19. My DS16 has PANS++ (read my tag line for the rest). Although tics are a hallmark symptom of PANS, this has not been a big issue, as he has only had a subtle eye-blinking tic that has come and gone over the years. This past week the eye blinking in his right eye has gotten so bad and frequent that the muscles around his eye are very sore. The only things I can think that might be affecting him are: He had IVIG#8 2 weeks ago. He started on sulfasalazine for GI issues 1 week ago. I was worried about him starting the sulfasalazine knowing that he could have a CBS mutation (we haven
  20. The FluMist vaccine pushed my son over the edge - it set off his worst PANS flare. Other parents on this forum have reported flares from the FluMist as well. Hopefully others will chime in with their opinions. I cannot offer an opinion in the flu shot, which is not a live virus. My DS16 completed all of his vaccines at age 5 albeit for boosters and we will no longer vaccinate because the risks are too high for him.
  21. Deedee... My DS16 was constipated from birth. I nursed him, fed him well when he moved to solid food. Constipation lingered until age 12 when we ended up at a GI doc who said he would have to be hospitalized to be "cleaned out." At that time, I was working with a holistic doctor who urged me to change our family's diet. She recommended a gluten and casein free diet. I complied 100% (we went cold turkey) and my son's constipation went away within days. That was 4 years ago and he is never constipated. Have you thought about an elimination diet? Gluten and dairy happened to be our cu
  22. I was born in 1970 - I gave birth to my son when I was 27. He is 16 now and I'm 43. I don't think it's an age thing.
  23. cobbie.... We are in the same boat. The tonsillectomy idea has come up twice for us in the last 2 months - and this is after treating aggressively for Lyme, co-infections, yeast, viruses, etc. for 2.5 years. The integrative dentist we saw last week did ART and found strep. This just confirmed the bloodwork that always shows elevated ASO and Anti Dnase-B. The dentist also asked me if he still has his tonsils - at the same time that he was looking down my son's throat! He is the 2nd doc that said you can hardly see the tonsils. Theory is that they are pitted from chronic infections
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