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About jayjay

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  1. We are scheduled for IVIG on Wednesday and Thursday. We are in CT so we won't be staying over but stop in in see us!
  2. Your school nurse was way out of line. I can only imagine how angry that would make you. Although I have been told some very wrong things by some dr.s, at least it is their job to diagnose. It is not her job to diagose or judge. This thread has made me realize how lucky I am that my son is in a school system that understands. I have to share with you an email his school nures sent to me last week after my son had a very difficult day... Hi Jodie, Please know that if you send him to school, regardless of his behavior, he is adored by all of us. He is a very special young man. He co
  3. Malke, I have been in this PANDAS(now PANDAS & Lyme) world for the last 6 years. Funny thing is that I have been my own biggest doubter. What you know, that I did not know 6 years ago is that PANDAS exsists and you know your child suffers from it. I spent years second-guessing myself, listening to the doubters because I was one myself. Dr.s told me it was a discipline problem, Oedipus complex, explosive child, autism. You name it; he was diagnosed with it, when the whole time my heart kept telling me it was something biological. Overnight, my son left me and no one could tell me
  4. My son's LLMD and immunologist believe that IVIG and Lyme treatment compliment eachother. He has had three IVIGs since starting Lyme treatment and is doing well.
  5. My son has had 4 hd IVIGs. 2 of them after starting Lyme treatment. He is scheduled for another in April. We did not give him steroids before and he did fine. With each IVIG he has had less and less reaction to it. For example, the first IVIG he was horribly sick with, migraine, nausea, vomiting for days. His last one he had a mild headache and was back to school the next day. We have seen very positive results. Bumpy, but definitely headed in the right direction.
  6. My child has: Lyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections LYME, BARTONELLA, HIGH STREP TITERS What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it
  7. I almost thought twice about posting because of the "jinx" factor But there has not been much posted about treating Lyme & PANDAS together. When we added amox. in January within 24 hrs the vocal tics were crazy. Vocal tics were never a huge symptom for him so we were kind of shocked to see them come on with such force. He did a LOUD cork popping sound, a high pitched screech and would yell Fire! Fire! We tried to ride it out thinking if it was a herx and would soon go away. A month later (it was driving us all crazy) I called the Dr. he said to stop the amox. for 48 hrs. and see
  8. Just wanted to post because my son is doing IVIG and Lyme treatment. He has had four IVIG treatments. IVIG #2 was done a week before he started Lyme treatment in October of last year. Then he had one in December and one this February. The reason I looked into Lyme was that he could not sustain a remission with antibiotics nor with the first IVIG we had last May. He tested positive on IgeneX, IGM #31, 34, 41, & 58, and IGG #41. #39 was IND. He also tested positive for bartonella. I have to say I was very scared to do both, but decided to follow the advice of both his immun
  9. My ds10 is currently being treated for Lyme and PANDAS. He has had a total of 4 IVIGs. His first IVIG, he got sick with nausea and a headache two hours into it. That migraine and vomiting lasted for 6 days. The Dr. said that was very unusual and thought that it was probably a stomach bug. IVIG #2 he got a migraine and vomiting on day 3 and it lasted for about three days. IVIG #3, migraine and vomiting on day 6, lasted for about 12 hours. IVIG #4, no migraine or vomiting. Like you norcalmom, I’m thinking the migraine and vomiting might be a herx. The further he is into treatment the
  10. You must be kidding...he dropped YOU for sticking with Lyme treatment??? That is not a pediatrician I would want to be with!! Certainly doesn't have your child's best interest at heart. Best to be rid of him! It is pretty unbelievable. I'm just filing her with the Dr. who sent us to parenting classes for my 5th kid, the two weeks he spent in the psych ward, and the time and energy we spent appealing our insurance company for IVIG(at least we won that one!)
  11. My son is doing both IVIG and Lyme treatment. He started Lyme treatment one week after HD IVIG in October. Had another HD IVIG in December and will be having a third HD IVIG tomorrow and Thursday. His immunologist and LLMD both agree that the IVIG is complementary to the Lyme treatment. For the Lyme, he takes minocycline and zith. Not going to lie. It has been a very bumpy road. I can say that he is far from where he was a year ago. Is it the Lyme treatment? Is it the IVIG? The combo? I'm not sure. As long as the overall trend is in the right direction and insurance will pay, I feel
  12. May ds10 had his first IVIG in May of last year which we paid out of pocket for because we were denied by United Healthcare/Oxford saying that IVIG for PANDAS was experimental and investigational. We appealed and got denied three more times so we took it to the CT State Insurance Commission. The State overturned their denial. They made them reimburse us for the one we had and to pay for one more before the end of Oct. So he had is 2nd IVIG early Oct. The Dr. wanted him to have a third IVIG and they initially denied that one, but within an hour after the denial they called us back and appro
  13. Well, we went ahead and had IVIG #3 on Monday and Tuesday. It's been a rough week. The migraine and nausea were horrible yesterday but today he is feeling better. We will definitely keep everyone updated on the progress of Lyme protocol and IVIG together. #4 is scheduled for early February.
  14. Kmom, I just posted the exact same question. Talk about confusing people even more! Sorry about that. Must have started writing about the same time, but I got interrupted a couple of times before I posted and didn't see your post. Anyway, I have the same confusion and hope that someone can shed some light.
  15. So sorry , We must have been writing it at the same time!
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