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Rhnv14

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Posts posted by Rhnv14

  1. Hello everyone, 

     

    Reading this forum for over a year, but this is the first time I'm trying to share my case and maybe find a good advise or analysis.

     

    My girl D is 7 years old. She is diagnosed with Lyme and Bartonella for 14 months, but we all understand the disease was there even 2-3 earlier. She's diagnosed and went thro 12 months of ABX and 3 Ivig treatments, none of them have improved her but kept her on a gentle status que. Her only symptom was motor tics, and very light vocal tics. And we thought we're handling the situation.

     

    In the last few weeks sh'es under a nerve attack. Started with serious motor tics, full body, then she was hurt with a loss of knee reflex, and as of few hours ago she developed a super loud - somewhat chilling - scream tic.

     

    We're both with an immunologist and in the last couple of weeks a neurologist who believes she has a neurological lyme where only parenteral ABX can do the work. However, I'm not sure my kid would agree to do an MRI, which is probably needed.

    My Qs:

    1) do you have a familiar case of tics only onset and a lyme that was attacking the nerves system only?

    2) did you have any success in getting your kid to do an MRI? And if yes, how so?
    3) did you try parenteral ABX that did much better than oral ones?

    Super appreciative for any help. We're in a tough condition as a family.

    Thank you!

  2. Hello everyone, 

     

    Reading this forum for over a year, but this is the first time I'm trying to share my case and maybe find a good advise or analysis.

     

    My girl D is 7 years old. She is diagnosed with Lyme and Bartonella for 14 months, but we all understand the disease was there even 2-3 earlier. She's diagnosed and went thro 12 months of ABX and 3 Ivig treatments, none of them have improved her but kept her on a gentle status que. Her only symptom was motor tics, and very light vocal tics. And we thought we're handling the situation.

     

    In the last few weeks sh'es under a nerve attack. Started with serious motor tics, full body, then she was hurt with a loss of knee reflex, and as of few hours ago she developed a super loud - somewhat chilling - scream tic.

     

    We're both with an immunologist and in the last couple of weeks a neurologist who believes she has a neurological lyme where only parenteral ABX can do the work. However, I'm not sure my kid would agree to do an MRI, which is probably needed.

    My Qs:

    1) do you have a familiar case of tics only onset and a lyme that was attacking the nerves system only?

    2) did you have any success in getting your kid to do an MRI? And if yes, how so?
    3) did you try parenteral ABX that did much better than oral ones?

    Super appreciative for any help. We're in a tough condition as a family.

    Thank you!

  3. Hello all,

     

    I'm reading this forum for almost a year since my child DH was diagnosed with Pans caused by Lyme. You guys are inspiring and I learned so much here, though never posted before. 

    DH is 7 years old. She was diagnosed with PANS very early in the game (with vocal tics and some phobias but nothing more), but her Lyme was diagnosed late (probably 3 years in), with many co infections we're treating with ABX. Our main struggle so far was mainly with vocal tics and some minor motor tics. It wasn't fun but manageable. 

    6 weeks ago DH had her first IVIG, followed by a 2nd treatment a few days ago. In the last few weeks we're seeing a severe regression with her tics. Her vocal tics are almost constant, and she has a meaningful flare of new motor tics which basically force all of her body to move. It is intense and sometimes hard to watch. My girl has changed. The regression is noticeable and scary. 

    Our doctors have told us this might be a very normal phase towards healing, though it doesn't feel like that. They claim the IVIG can stimulate exacerbation of tics that the body is fighting to get rid off. They ask us for patience tho my wife and I are terifired, so as our kid. 

    DH has never suffered from any mental symptoms. She's is great at school, funny, focused. But the last regression is paralyzing. She feels it. Her body is just flared with tics that take us all backwards. 

    Are you aware of a successful IVIG that starts with regression of symptoms? Are you aware of a severe motor tics regression after almost one year of ABX that is working clinically wise? Could that be a path to healing or maybe a bad sign? Am I missing something?

    Any shared experience would be so appreciated. Many thanks! 

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