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chodnett

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Everything posted by chodnett

  1. chodnett
    never gonna happen. Pharma makes too much $$$$$$ on them. will always turn up not a problem.
  2. chodnett
    we are 90% better and on the LYME board now. Heading for 100% recovery.
  3. chodnett

    Dr.Crist in Columbia MO. We think he is great and will be able to help. Good Luck. We go to him and we are from TEXAS.

  4. chodnett
    I am being treated and Have not had a herx I can pinpoint yet. But I do have this tingling on my hands it is not uncomfortable but it is wierd. I was just seeing if anyone else has had similar ting happen. Is it a herx?
  5. chodnett
    not to worry. he checks to see if heparin is needed first. I was tested and it is not needed for me.
  6. chodnett
    he does not treat kids. I (mom) am seeing him tomorrow.
  7. chodnett
    Yes, She is positive for band 41 on western blot. Have not done IGENIX, have boxes and request per DR. B. But I tested postive for 4 bands not IGENIX, I plan to do IGENEX too.I have already seen LLMD and started LYME treatment. It is just difficult and more complicated for daughter living in TEXAS.
  8. chodnett
    We have a leg bending tic but I dont know how to explain it. I dont know how long you have been treating but I can say we have been on AUGMENTIN XR 1000 mg 2 times a day and now 1000mg a day for almost 1.5 years and 3 HDIVIGs and we are stable although there have been many spikes it seems like we have made progress on antibiotic treatment. Especially now that we are looking into LYME maybe the culprit I am glad to know it is the antibiotic treatment would be the right treatment. It just takes time.
  9. chodnett
    our symptoms remitted maybe when first diagnosed with tourettes. By the time we found out it was PANDAS we had constant tics never better just sometimes were out of control. Over a year on AUGMENTIN XR and 3 HDIVIG tics are quite, not completely gone. Looking further into LYME. I have tested positive for 4 bands(CDC negative) But from what I have read the antibiotics are probably helping her the most, especially if it is LYME related. Makes me feel better knowing we didnt throw away a year of treatment doing the wrong thing.
  10. chodnett
    My son is on a monthly cycle of getting sick. In november bloodwork was done and came back Positive for IGG Mycoplasma and negative IGM. I really do not know what this means. Explain Best results to treat.
  11. chodnett
    My son is on a monthly cycle of getting sick. In november bloodwork was done and came back Positive for IGG Mycoplasma and negative IGM. I really do not know what this means. Explain Best results to treat.
  12. chodnett
    has anyone taken PANDAS child with band 41 to Dr.C? What does he say about band 18?
  13. chodnett
    i agree see LLMD. My daughter presented with tics in 4th grade and she is in 7th grade now has been on antibiotics and had 3 IVIGs and still has tics. We are in the process of LYME testing. and looking for LYME dr.
  14. chodnett

    who is dr. J and do you see a LLMD and where. I feel pretty lost in this discovry. I live in TEXAS and there are no LLMDs. My daughter suffers from what we thought was PANDAS but now rethinking treatment to LYME. ANY knowledge is helpful. Thank you

  15. chodnett
    I dont know what binding complexes are? What I do know is your story sounded so familiar to me and that is what made me even do LYME testing. My daughter 1 presents with tics and daughter 2 attention problems. Cannot get rid of strep. I am calling your doctor today. We want our lives back. I am fearful of all the homeopath pills. we can hardly get one down a day. I am also going forward with IGENEX tests.
  16. chodnett
    What does this mean? I have just started the ball rolling down the LYME path. PANDAS for 3 years. did not do IGENEX testing yet started with CLINICAL PATH LAB WESTERN BLOT I tested myself and my daughters (PANDAS, or so we thought) MY test came back negative but bands present are: 58,41,30,18 1 Daughter only band 41 present with low CD57 number 2 daughter only band 41 present with CD 57 number WE ALL HAVE HIGH STREP TITERS AND CANNOT GET RID OF THEM ON ANTIBIOTICS help if you have any idea what all this means. P.S. I live in NON TREATING LYME STATE.
  17. chodnett
    WOW! Now I really know we must test for LYME. She had a rash for sure that was a possible fifth disese before she presented with a seizure. that was the begining of this whole train we have been on. Her personality changed after that but tics did not present until almost 2 years to the date. Question: So if testing for LYME does western blot cover this? What IGENIX test would be specific to this? 0
  18. chodnett
    WOW! Now I really know we must test for LYME. She had a rash for sure that was a possible fifth disese before she presented with a seizure. that was the begining of this whole train we have been on. Her personality changed after that but tics did not present until almost 2 years to the date. Question: So if testing for LYME does western blot cover this? What IGENIX test would be specific to this?
  19. chodnett
    I have exhausted Lyme net and ILADS and it was not helpful. names sent were "well maybe they do not treat children, ask 1st"
  20. chodnett
    Tics are different daily. But she goes through some days vocal to great days not vocal, only motor. They are constant and evolving. She is in school so you can only imagine the pinned up stress when she gets home. She is better from starting PANDAS protocol and remains at this level sometimes regressing, never very bad. We travel for PANDAS DR now will have to travel for LYME DR. We live in TX so no DRs here I guess you can say LYME DRs are outlaws! Run out of town when they are found out. As a mother, never in a million years would I think in 2011 no one here would treat my precious baby girl to make her healthy again.
  21. chodnett
    New to LYME forum from PANDAS. I want to persue LYME testing. Dd is PANDAS for 3years+. antibiotic treatment over a year and 3 HD IVIG Still have tics. need to rule out lyme. please help me with the right DR. to help. Do not want to start all over with explaining PANDAS to unbelievers. Thought those days are over. Thanks
  22. chodnett

    DID YOU FIND LYME? DID YOU DO IGENIX. OUR STORY SAOUNDS THE SAME EXCEPT I HAVE A DAUGHTER. ANY INFO IS HELPFUL AS YOU KNOW. THANKS

  23. chodnett
    Hi MOMAINE Wondering what IGENIX testing you did? Afraid you are just a few steps ahead of us. Have to rule LYME out before we go on.
  24. chodnett

    i have a daughter with pandas. I think we have spoken via forum before. still not 100% with pandas treatment. looking into LYME. have you had any luck with find help. Im in Texas too. We travel to Connecticut for Dr.B. Dont want to travel for LYME too if we can help it. I have seen some of the people we had IVIG's with get LYME testing positive. Have not done IGENIX on family.

  25. chodnett
    i have a daughter with pandas. I think we have spoken via forum before. still not 100% with pandas treatment. looking into LYME. have you had any luck with find help. Im in Texas too. Thanks
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