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DebC

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    Plano, TX

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  1. I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.
  2. I would definitely run the IGeneX test for Lyme. After 5 years with our daughter waxing and waning and our son developing symptoms for 2 years, I finally threw in the towel a year ago and had both kids tested (as well as myself). All of us ended up having Lyme -- I never would have guessed it. We have been in treatment since October and I feel better than I have in 10 years (I had gotten sick so gradually that I thought I was just aging until I had strep and myco that I couldn't get rid of). Our daughter now has no symptoms (age 14), and our son (almost 11) is progressing to no symptoms (he just has a stubborn mycoplasma coinfection that we are battling and has a lingering throat clearing tic).
  3. Our son did a little over 6 months of Azith followed by nearly a year of Biaxin and his titers barely budged. At that point, I finally tested for Lyme and he was positive. We have been on a Lyme protocol and his titers are still slow to drop. They are switching him from his current protocol back to a protocol that includes Azith. We will take a wait and see approach for the next several months and will draw blood then to see if he is moving in the right direction or if we need to change again. We are hopeful that as we address bartonella and mycoplasma with our new protocol, titers will fall.
  4. riffleshell -- Best wishes as you travel for your appointment. We will be praying that your youngest heals quickly and that the behaviors disappear as quickly as they appeared. mybabyo- Just forwarded information on Dr. Rao to you.
  5. Our son did 9 months on azithromycin for mycoplasma. During that time, we saw brief improvement before his titers started rising. He switched to Biaxin this past January 250 mg a.m. and 250 mg p.m. He seemed to improve but his blood work this fall showed that his numbers were going up again and his tic was returning. Therefore, our doctor increased the dosage to 250 mg a.m. and 500 mg p.m. The tic seems to be gone so I am hoping that we are heading in the right direction. Next blood work to check on things will be in November and we see our LLMD for the first time in October. I will be curious to see if the LLMD adds something to bust through the biofilm so that the antibiotic will be more effective.
  6. I'm pretty sure that we are a congenital Lyme as well. My kids are at least second generation if not third or more. Both are PANDAS kids as well. I was diagnosed in June through IGeneX (CDC positive) and once I came back positive, I had the kids tested (daughter IGeneX positive and son had many + and IND bands). I had two known tick bites back in my early teens in the 1980's and may have contracted Lyme then. However, I suspect I am probably congenital Lyme as well. My father has Behcet's Syndrome, afib, sore knees, blood clots, multiple myeloma, and shaky hands when he writes. My sister has Sjogren's syndrome which leads me to believe it was passed on to her. Neither my father nor sister has been tested. The kids and I will be seeing an LLMD in October.
  7. There is a Facebook page (private) for Teens With PANDAS: https://www.facebook.com/groups/129017327268769/?ref=br_tf I even found one for PANDAS siblings: https://www.facebook.com/groups/456841354386637/
  8. Our daughter's blood work showed that she was low in zinc so we supplement.
  9. My husband forwarded this to me asking if there was any connection or tie in to PANDAS. I have been googling ipopolysaccharide, LPS, and TLR4 along with PANDAS and am not finding a connection. Any thoughts on this? http://www.sciencedaily.com/releases/2014/02/140210114548.htm
  10. Our daughter also had the Genova and Pharmesan tests done here in TX. Once we started supplementing for her deficiencies along with the antibiotic she'd been on for over a year, we saw improvment quite rapidly. We have had our whole family tested through our daughter's doctor for mycoplasma and strep. My husband and I both had high mycoplasma titers and were on antibiotic for 30 days in June of this past year. Our son developed PANDAS symptoms this fall after we had strep and what we thought was a cold that my husband came home with and gave to me as well. It turns out that it was a mycoplasma infection and once we both started on another 30 days of antibiotics, we have seen improvement in our son who had extremely elevated titers. In our experience, getting the whole family tested is important in ending the cycle in the family. I have battled strep over the last couple of years but my titers remain low and our doctor does not think that I'm in a carrier state.
  11. Our doctor checked for many different viruses as well as bacterial infections.
  12. Our daughter has been on azithromycin for several years. She was initially on 250 mg every other day. This every other day dose started 2 years ago and lasted for the duration of a year. However, she had elevated mycoplasma titers that were not responding to this dose last April. Therefore, In May of last year, her dose was upped to 250 mg of azithromycin daily and she continues to take that dose as we monitor blood work and watch her titers gradually decrease. She also had additional testing a year ago on neurotransmitters and other minerals. A few over supplies and deficiencies were found so we have also been supplementing those. With a combination of supplements and azith, we have seen remarkable improvement. She managed to have a break through case of strep in March of this year and stopped the azith for 10 days and switched to augmentin, and even with that, her exacerbation of PANDAS symptoms was not awful and only lasted for a few days before she was back at base line. After augmentin was completed, she returned to her daily azith dose. She takes the azith at night after dinner and takes a Theralac probiotic every morning and we have seen no adverse side effects whatsoever. Rheumatic fever patients are on antibiotics to manage their condition until some time between the ages of 18 and 21. PANDAS is very similar except instead of affecting the heart, it affects the brain.
  13. Our PANDAS daughter was asymptomatic for mycoplasma but when we tested her this spring, her titer was 727 and should have been between 0 and 90. She is currently on azithromycin. We just had follow-up blood work to determine if the azith is helping. If I find that it is not, I will mention doxy to our treating physician.
  14. I'm the Dallas Area Support Group Leader. Our daughter just started seeing Dr. Rao in May and we have seen significant improvement! He ran quite a few tests. Our daughter was diagnosed 3 1/2 years ago and had improved until last fall when her anxiety and OCD increased once again even with a prophylactic dose of azithromycin provided by our wonderful ENT who also sees PANDAS patients. Since so many area support group members had a good experience with Dr. Rao, we decided to add him to our team of doctors. He ran a set of tests from Pharmesan Labs which checked our daughter's neurotransmitters (serotonin, GABA, taurine, glycine, glutamate, histamine, PEA, dopamine, norepinephrine, epinephrine)and found that our daughter's glutamate was high so she is currently taking GABA to lower the glutamate. He ran a NutrEval test which checked her antioxidants, B-vitamins, and minerals. This test showed that her CoQ10 enzyme was very low so we are supplementing that as well. He ran basic blood work that checked all sorts of things (lymphs, immunoglobulins A/G/M, Chlamydia pneumoniae (IgG/M), mycoplasma pneumonia (IgG/IgM Abs), immunoglobulin E, rubella antibodies, cytomegalovirus, all of her vaccine titers (to make sure she was covered as we've discontinued vaccinating for now and all was good). This test showed that although her titers were okay a year ago, her mycoplasma titer was now at 727 and should have been between 0 and 90. He put her on GABA, Zinc, CoQ10, and azithromycin 250 mg daily. She began the higher dose of azith the end of May and the other supplements mid June. Some of the tests were done with blood work. Others were urine tests. He also tested her yeast levels and those were fine. We have seen quite an improvement. For the last year, her concentration in dance and school has been off. I was talking to her instructor about a week into taking the supplements and was just asking a general scheduling question. The instructor had no idea that we had changed anything but out of the blue said, "I just wanted to tell you what a change I've seen in your daughter the last few lessons. Her focus is back and she is picking up combinations with no problems." I nearly cried and told her what we were doing. In our case, adding Dr. Rao to our team of doctors has made quite a difference. We are only 2 months in and are hoping that this progress continues and that our daughter maintains what we have gained. She is at camp this week and we sent all four of her pill bottles along and I gave them to the nurse. I will be interested to see if it is easier for her to concentrate in school this year as well. In seeing Dr. Rao, expect to wait for about an hour past your appointment time before you are seen. However, also expect that Dr. Rao will be with you for anywhere from 30 minutes to an hour. He is thorough and takes his time with his patients. There is another family in our group that has had IVIG with Dr. Rao. This family convinced Dr. Rao to follow Dr. K's (Chicago PANDAS doctor) PANDAS IVIG protocol here locally. Please let me know if you have any additional questions!
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