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chodnett

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  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. Hi, I also live near San Antonio and have a DS8 that was dx with PANDAS. We see Dr. infante and Dr. Russell. Which doctors do you see and do you feel they have helped?

  3. 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?
  4. This is interesting. Hard to read article. I have band 58. All three of my children have 58 also. Congenital Lyme.
  5. 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.
  6. 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.
  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. 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. ))
  8. 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.
  9. 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.
  10. 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.
  11. do herx rashes ever itch? and can they be on the scalp?
  12. 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.
  13. We also have lyme. Congenital Lyme. my kids got it from me.
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