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chodnett

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Everything posted by chodnett

  1. We did PANDAS treatment in conneticut with Dr.Bouboulis. I then went to lyme doctor Lyme was underlying cause. Found healing and relief with lyme treatment but it is tricky. All DD14 symptoms were gone over a year ago antibiotic treatment. Now off antibiotic about a year and have slipped backwards a little. Going back into lyme treatment. I know Dr. Infante was just getting started when we begun.

  2. I am not on the forum much either. We are making progress in our Lyme treatment. I do think about you and L. often. I am glad to hear everyone is healing. I am sorry to hear your diagnosis. But I am sure you will have a plan on treatment. Watching you at Dr. B's office always amazed me. You always had so much information and asked all the right questions. This I know will be handled the same way. We are all fighting for your remission! I must say recently I have had a questionable mammogram. I have lyme too. What is the connection?
  3. This is interesting. Hard to read article. I have band 58. All three of my children have 58 also. Congenital Lyme.
  4. NO change in symptoms with Tonsilectomy. Just lots of pain and I can not say dont do it because I guess if I didnt do it then I would always wonder would it help. It did not help us at all. She still has high strep titers but we are treating Lyme now and feel once the Lyme is treated so will the Strep become normal.
  5. Ceftin was good for us. We are on 4-6 week rotations and I feel like tics and behaviors were almost gone. We then went to Zith and it was fine maybe noticed little difference. Now were are on Flaygl and it is ramping up tics and rage. Not like in our worst days, but it is there. Is this herx or just working through die off? I get so confused at days and would like to revisit the Ceftin because everything felt sooooo normal then. But then I question was it doing anything or just harboring the lyme?? Would like any feed back that is helpful. But to answer the main topic I have loved the results of ceftin.
  6. I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year. But the best LLMD is always worth it in the end. I personally went to the only 2 that are within a 2 state radius for me and I live in texas . There is no one here. But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean. So far it has worked. I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory . No worries. I was just commenting, thats all. ))
  7. I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year. But the best LLMD is always worth it in the end. I personally went to the only 2 that are within a 2 state radius for me and I live in texas . There is no one here. But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean. So far it has worked.
  8. Skeptical about LYME? Your children have symptoms that are unexplained. Clinically if they do better on LYME treatment they have LYME. Do not doubt yourself. We travel to another state for help. Not convenient, but 5 years of seeing many doctors and following their protocols--seeing some relief, not much. With LYME treatment working never backsliding. I cannot believe it took me 5 years to get to the right diagnosis. We went to LLMD without testing. DD 13 with PANDAS treatment and Tourettes diagnosis?? (I now know TS is not a diagnosis) there is NO blood test 4 it!!! Listening to Dr's who have been pushing prescription drugs all along the way to my then 9 year old is unfathomable now. She is on Lyme treatment with antibiotic therapy. SHE IS 90% better and no backsliding. Her major symptoms were TICS. I would say behaviors behind the TICS. LYME is real. I do not understand the mystery behind it. I do not care I just want to heal my family of this awful disease. I also have to say they have congenital LYME. I have LYME too and I had NO idea. I have never felt better 8 months into treatment. My Pandas D has exact same bands I do?? I cried when I saw the test results. Then my other childrens complaints have all but disappeared. GO figure? its LYME. I would not go to middle of the road LLMD. I would go to the best you can get to. Get in touch with ILADS. They will help.
  9. To save frustration. I would go ahead and make appt. with good LLMD and he will do all the testing necessary. I am positive you will get the proper treatment.
  10. do herx rashes ever itch? and can they be on the scalp?
  11. Check for lyme infection first. We did T and A surgery. It was difficult recovery. Glad they are out, but now we know Lyme is culprit. In Lyme treatment now.
  12. We also have lyme. Congenital Lyme. my kids got it from me.
  13. Tonsillectomy did not help at all for PANDAS. 3 hdIVIGs helped a little. AugXR at high dose for almost 2 years now. has helped a little. Looking into LYME for treatment now. I now know I (mom) tested positive for LYME. Wish I knew this years ago. Check all possibilites even if they seem far fetched for now. We also cannot get strep titers in normal range. If not on antibiotics they will rise. Even without tonsils.
  14. I would check yourself for lyme. This has turned out to be the problem for my children as well. I have passed lyme on to them.
  15. We have had tonsils and adnoids removed as of Jan2011 one daughters ASO and Dnase went up over 250 points higher. DO you have to wait to see results because I have seen nothing different yet.
  16. I do understand your troubles. We have been fighting strep. I have high strep and so does Pandas daughter and my 2 other children. ASO continues to drop for Pandas daughter on AUG XR for 2 years, never has been normal. I think ASO is around 400 and dnase 250ish. (testing over 1 1/2 year period) My ASO and other daughter (PANDAS range 160 no symptoms) rise and fall between 900 and 500. Our DNase hovers around 300. That being said I need a Strep dr and cannot find a specialist. Also I have tested positive for lyme and I am being treated. Will that cause strep symptoms to fall back into normal range. My children will be seen by LLMD in 2 weeks. Is this going to help with strep? I dont know. Has it been LYME all along?
  17. UNDER OUR SKIN is scheduled to show on PBS local channel KERA MAY 25, at 10:00 PM
  18. Dd 13 has Tics and high strep titers she has had 3 IVIGs. The first made some tics subside. The 2 enraged tics to a whole new level(very scary). #3 calmed down to a new normal. Still on AugmentinXR. Still have tics awaiting to see LLMD. She gets neverending hiccups often. I dont know what that is?
  19. Bumping. I am so sorry for this. If it makes you feel better I do not know what it is and have not seen anything. Hopefully it has been resolved! Prayers to you and your son.
  20. My daughter has tics and has responded to long term antibiotic and HDIVIG treatments. Although better no more vocal only movement I think it is because of LYME infection. We are going to see LLMD in JUNE for her. I have already begun treatment. I think she is congenital LYME then PANDAS came on. All treatment has been good for recovery but must address LYME.
  21. I am so glad you found help. Do not listen to the doubting doctors they are leaving their heads in the mud while they should be treating there patients with knowledge instead of trying to bury the evidence that is here.
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