Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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My first appointment with Dr Susan Levine

Discussion in 'ME/CFS Doctors' started by jpcv, May 21, 2018.

  1. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Hi everyone
    I have just returned from NY, where I had the opportunity to meet Dr Levine.
    I want to share with you my experience of travelling a long distance with ME and thoughts regarding the medical appointment.

    Travelling that far was not easy, I think it would be very hard for me to do it without my brother´s help.
    I strongly advise anyone traveling long distances by plane to ask for a wheelchair ,even if you do not need one on a day to day basis. It helped me a lot , mainly during immigration process, so I didn´t have to stay on a long line-I have hypotension and I avoid long lines at all costs.

    I was treated very well by Dr Levine and I recommend her for anyone willing to go to NY.
    We discussed superficially most of the literature and also she told me about the experience of other clinicians who treat this disease and their views regarding their favorite treatments ( I think they did some kind of pool in a recent meeting at Bateman Horne Center , in Salt Lake City.).

    My diagnosis was ME/CFS ( with elevated IgG CMV titers and HV6) + hypotension + CIBO + MTHFR mutation plus a background of chronic hep B

    She recomended Valcyte,some aminoacids/suplements based on Naviaux metabolomics data, Metylb12injections ,LDN,and some more detailed investigation of autonomic disfunction and CIBO.


    I hope this brief report helps, I can give more details if someone is interested.
     
    Learner1, edawg81, CedarHome and 15 others like this.
  2. jpcv

    jpcv Senior Member

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    SE coast, Brazil
  3. Diwi9

    Diwi9 Senior Member

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    @jpcv - I'm so glad to learn that you got in with a specialist and will begin treatment...also that your brother helped you. I hope all this expended energy was worth it and that you begin to improve. I know you'd love to have more energy to spend time with your son.
     
    Joh, alkt, Gondwanaland and 1 other person like this.
  4. jpcv

    jpcv Senior Member

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    Thanks, @Diwi9
    It was Worth it going to NY, before going to NY I also had made plans to fly to London for this year InvestinMeresearch, but it´s too much for me, I´ll stay home and watch the vídeo stream when it becomes avaiable.
    Travelling with my brother is always an adventure, he is super funny and I never get bored when he is around.
     
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  5. Helen

    Helen Senior Member

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    Thank´s for sharing. Glad that you made it all the way and I hope you won´t have too severe PEM afterwards. Would you mind telling us which amino acid supplements she suggested?
     
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  6. jpcv

    jpcv Senior Member

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    Acetil-carnitine, Inosine,Phosphatidyl Serine
    I forgot to mention Florinef for hypotension
     
    Learner1, Helen and Joh like this.
  7. rel8ted

    rel8ted

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    Glad you got to go. Seeing a specialist that understands is one of the best things you can do for yourself.
     
  8. Alenka

    Alenka

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    @jpcv

    Thank you very much for posting about your experience. I really hope you will see an improvement in your condition.

    Encouraged by your post I called Dr Levine's office today to ask for an appointment for myself and my son. We would also travel long distance (Slovenia). However I was told that they are not taking any new patients and to try again in August. I'm worried that when I call again in August I will get a similar response. How did you manage to get an appointment? Is there any chance you could put in a good word for me?

    Alenka
     
    jpcv likes this.
  9. Helen

    Helen Senior Member

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    Thanks. Best wishes with your treatment. I really hope it will make you better
     
  10. jpcv

    jpcv Senior Member

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    I tried to call her many times and no one answered and one day she answered the phone herself.
    I explained my situation and she said ok, come over!
    But you know, I´m also a doctor and maybe that was something that had some influence in her response.
    \yes, I can try to talk to her, no problem.
     
  11. Alenka

    Alenka

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    This is really kind of you, thank you very very much! My son is 22 and has repeating throat and UTI infections ever since he contracted EBV at age 16. I am 46 and since amalgam removal 3 years ago I spend 80% of my time in bed due to CFS. Both my son and I tested positive for mineral transport derangement due to mercury toxicity (Andrew Cutler's theory).

    Not sure it would help but my husband and I have a villa on the Croatian coast... :)
     
    jpcv likes this.
  12. nryanh94

    nryanh94

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    @Alenka you can try messaging Dr Levine on Facebook
     
  13. pwme_92

    pwme_92

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    Thank you so much for sharing your experience and please keep us updated as your treatment progresses.
     

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