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nicklemama

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Everything posted by nicklemama

  1. I did B12 shots for DS for about 1.5 years. His B12 levels shot sky high and we discontinued them. He currently gets B12 through a cream we rub on the inside of his arm.
  2. Incredibly variable. Short flares losing teeth, exposed to illness, having a cold or other minor illness. DS actually survived a bout of strep this summer without a flair. Did I say that? Knock on wood. Hasn't had a long or really tough flair since starting double abx for lyme disease a bit more than a year ago.
  3. Oh, its from any sun exposure. Five minutes into a car ride, my hands would be tingly and feeling like they were burning. I am certain your kids are not in a dark room 24/7. The tip of my nose turned red like Rudolph and lasted until a few weeks into minocycline. It was really embarrassing. No amount of concealer would cover it all up.
  4. Doxy does things to the skin especially skin exposed to the sun. My nose and the backs of my hands were tingling/burning. It stopped when I went on minocycline for the summer. Doxy is notorious for making you VERY sun sensitive.
  5. Are your parents going with you? If you have PANDAS, Dr K will be able to diagnose it. He is very professional in his manner and if your parents have doubts, he's the man to explain it to them. Good luck.
  6. That is the question we've all been asking. After 5 years, I'm sick of poor medical care and ignorance surrounding PANDAS.
  7. Are you from Great Britain? Its hard to get treatment there. Even harder than here. I think we have some mom's here from GB. Hopefully, they will be able to give you advice.
  8. Where on earth did the psychiatrist get his/her medical degree? You have one very sick, multiply infected little boy. These infections need to be addressed. You need an expert to help guide you. I seriously doubt your son is bipolar. I was told that once too. It's a load of BS. I am not a doctor but I'd bet a lot of money your son has PANDAS/PANS. I also recommend Lyme testing, if you haven't already.
  9. Igenex testing will pick up late stage lyme. It did for me and for my son. I've never had anything but the Igenex. Quest testing on my son was completely negative with only band 45 positive. He had 5 bands on Igenex, three of which were lyme specific. Igenex tests for two of the Borrelia burgdorferi variants (as best I can describe it) and the mainstream labs only test for one.
  10. I will also agree you need to see a PANDAS/PANS specialist. This is. It something you can manage alone. Yes, abx is what keeps my son "normal".
  11. The first IVIG helped but he relapsed. The second one did nothing. We found out about the lyme after the second one.
  12. You may feel doctors charges are outrageous and unethical but in this country doctors can charge what they like. In my mind, $400 for an hours service from a doctor who doesn't take insurance and has special training is worth more than paying a pediatrician who takes insurance $150 (less what insurance covers) for 15 minutes and getting nowhere because they have zero knowledge of PANDAS. I understand your frustration but blasting a doctor because you disagree with their charges doesn't get you very far. We do not see Dr T but we do see another doctor locally who does not take insurance.
  13. You will know treatment is working when you see symptoms diminishing. I've seen it in my son and I've felt it myself. My son seemed so classic PANDAS but we never could get him completely well and near symptomless with just PANDAS treatment. He has neurolyme. I have the arthritic form. I can tell you 5 months in on treatment and I'm feeling really well.
  14. I have never experienced therapy as being beneficial for DS. When he was in the throws of PANDAS, it made him angry and rageful. The only thing that has helped is getting to the infection. For DS, that has turned out to be Lyme. Treatment for PANDAS made things better but never got him where he is today.
  15. I don't think so but he's gone longish periods with few minor symptoms, like a mild eye blinking tic. He has some mild anxiety all the time. Is that him or residual PANS? He is recovering from his first bout of strep ever diagnosed. This all started in 2009. Flared in anxiety and OCD after the strep. Hasn't gotten terrible......yet. He's 16 days post diagnosis of the strep.
  16. I have used a Canadian pharmacy in the past for name brand minocycline. It's actually quite easy to do and much less than US pharmacies charge. I can't remember the name, offhand but I can try and find which pharmacy I used. Lots of people in the US with rheumatoid arthritis who are on the minocycline antibiotic protocol use Canadian pharmacies for name brand drugs.
  17. We had this issue when we were on an HMO. It's concerning to hear about.
  18. THIS WORKS!!!!!! Just tried the following on DS's teeth. They had already yellowed and had brown stains on his front permanent teeth since his cleaning in early May. This weekend a little girl told him his teeth looked like "that guy on A Christmas Carol that has yellow teeth". He was upset by it. I just mixed this solution up. I brushed using his tooth brush. When there was still some brown staining on the two upper front teeth, I used a piece of gauze wrapped around my finger. All stains gone!!!!! From Wiki, as noted above: Brush your teeth with a hydrogen peroxide and baking
  19. As a mom who has Lyme and a PANS son with Lyme, I think her symptoms are directly related to the tick bite. Standard lab testing for Lyme is notoriously inaccurate. I would also repeat everything rowingmom says.
  20. Kind of sounds like my dad, who is 75 and I feel has Lyme. Many known tick bites. He's an avid outdoorsman. No MI but he's having some weird cardiac issues and no amount of testing shows a thing. There is an LLMD in Michigan that I see. Will PM you.
  21. I believe you should definitely explore PANDAS with an expert. I would not rely on a pediatrician unless they are known to understand and are willing, able and competent to treat a PANDAS child. Mi would look to experts and/or those with special interest in PANDAS. As an adoptive mother of a son with no family medical history who has PANS, I urge you not to let that be a focus. It believe it impeded my sons diagnosis, along with a pediatrician unwilling to explore PANDAS.
  22. I can so relate. Honestly,getting rid of the root infection got rid of the behaviors.
  23. We are facing this question in a year. Given how my son reacted to the last vax given him, Flumist that started all this, I will be declining. I will revisit the meningococcal vax when he goes to college. The Tdap is not even on my radar right now. I've had whooping cough as an adult. It was he'll. Vaccination does not last. Will have to address this one at some point, as well. Two at once......NO WAY.
  24. You need to find an LLMD in your area. Your daughter is displaying signs of babesia, bartonella and Lyme. It's best to use specialty labs for Lyme testing, as the standard tests done through labs like Quest and Lab Corp have a high rate of false negative.
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