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Everything posted by lss

  1. In the state of Texas, doctors do not have a choice about doing a culture or biopsy on any body part that is removed. It is required by law. My sons adenoids and tonsils were removed by a dr who decided it didn't need to be done as well as not providing abx. BIG mistake. You should insist on the abx as mysons tics only got worse after surgery because the infection spread. We later found a wonderful ENT who removed 2 polyps from my sons nose and he did iv antibiotics during as we'll as large dose abx before and after surgery. I was informed by this wonderful dr about the laws in Texas and the removal of body parts. I would recommend finding another dr. Who understands pans, pandas and pitands.
  2. I have a meeting this afternoon with the school to go over our ds 504 plan and I'm wondering what others have asked for on their 504 plans. I just want to make sure I don't leave anything out. Your help and comments are much appreciated. Thanks
  3. I'm curious to hear what Dr. T. had to say. All I can really add is that my son didn't have typical coxsackie symptoms either I suppose. He seemed to have a minor cold, then the PANDAS symptoms showed up. When he was negative for strep and ear infections, we ran blood tests and found the coxsackie. He's 8 weeks in right now and still recovering. The acyclovir helped, but it took the full 20 days to bring most of his symptoms down. Dr. T posted a paper regarding this very subject on his facebook page: http://www.ncbi.nlm.nih.gov/m/pubmed/18608177/
  4. Anyone on this forum with Lyme or co-infections that is living in the state of Washington? I have a bet with my husband who claims there is no Lyme in Wa! I say it s there, just not reported. Anyone??
  5. http://www.nationallymereport.com/symptoms/300_medical_conditions.htm
  6. So glad you're finally getting help! Hang in there. Linda
  7. http://www.lymediseaseresource.com/wordpress/the-horrors-of-mycoplasma/
  8. LLM, My son's low homocysteines levels were measured thru plasma. The first doctor recommended using a topical cream, Neuro-immune stabilizer which contains the following: Folinic acid, Hydroxcobalamin, methylcobalamin, pyridoxal 5 phosphate and natural vitamin d. The second doctor did muscle testing and then he recommended using the Thorne Methyl Guard. When I spoke with Dr. M. he said it might still balance things out. So I'm not really sure if any of this would actually help since my son's is low and not high. Linda
  9. Can you tell me why they took it? My son has low homocystiene levels, and everything that I've read inicates taking the Methyl-guard to bring it down, not up. Does anyone know if this just regulates the homcysteine levels either way?
  10. Has anyone ued the Methyl-Guard from Thorne for this and or low homocysteine? Linda
  11. Dr. T has found strep in some of the girls and mycoplasma in others!
  12. CDKMEK, I have sent you a private message. ls
  13. Has anyone tried Methyl-guard by Thorne? The ingredients listed are Vit B6, B12 and folate. If anyone tried, can you please tell me what results you may have seen? Linda
  14. A little info on Dr. Newell: http://www.pandoranet.info/documents/ViralGeneticspressrelease04242009.pdf Also, I beleive she was at the NIH meeting held last year with the Pandas doctors.
  15. Wilma, I would think that Dr. B in CT could order the Igenex testing for you, or at the very least he could order the same test that he did on your child. I would not bother with the Cam-K as it does not prove that you do or don't have lyme.
  16. Heel pain was one of my first symptoms-started off on the left foot, the doctors told me it was a bone spur-then it moved to the right foot in the heel and just recently has moved up to the ankle. Some days I don't have any pain at all, other days are really bad.
  17. Mucus can be a side effect or die-off from treatment of lyme in the stool, but I've not heard of it in the urine. Could your son have some kind of blockage?
  18. Wilma, It is my understanding that people with Lyme or co-infections should not have steroids.
  19. Just thought I would post as interesting read. http://www.lymediseaseblog.com/mycoplasma-overlooked-lyme-co-infection/
  20. Can"t help you with the name of a doctor, but can tell you that last year I had a huge change in my eye sight, was seeing floaters and also these streak of lights out of the corner of one eye. I went to 2 Optometrist and 2 different neurologist thinking I might have something more serious (brain tumor), they couldn't find anything! Since starting the lyme treatment, floaters have gotten better and so has the streaks of light have resolved, and I notice I don't need my "reader" glasses as often!
  21. Hi Dedee, I tried to send you a pm, but your in-box maybe full and I can't find your phone number. Linda
  22. Has anyone had the C3a and C4a run to test for lyme, if so, what do you doctors say about this?
  23. I don't think you need to see a dr in Canada to get a rx filled, as long as you have a rx from a dr from US they will fill it. Linda
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