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My appointment with Dr Susan Levine

Discussion in 'ME/CFS Doctors' started by Attek, Feb 25, 2017.

  1. Patster

    Patster

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    Hi jpcv:
    I don't know. As I "absorb" all of this, I will have lots of questions. The Valtrex prescription is 500 mg 2 each day for 90 days. Dr. Levine said she would start Valcyte in six weeks.
    Peace
     
    Binkie4 likes this.
  2. Valentijn

    Valentijn Senior Member

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    MTHFR isn't a gene known to go missing, and the mutations on it are extremely common. It don't involve the absorption of folate, but rather the transformation of it from a precursor.

    Mutations on the gene can have a sizeable impact, but they are very common, so most people have them. Eating a decent amount of veggies or supplementing a normal dose of folate is sufficient to compensate for it. It wouldn't indicate a need for B12, though people often find B12 beneficial for other reasons.
     
    Sancar likes this.
  3. Eve18

    Eve18

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    I'm thinking about going to see dr Susan Levine.
    Does she check nk cells function and cytokines? Does she prescribe something to regulate the immune system?

    Thanks.
     
  4. Binkie4

    Binkie4 Senior Member

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    @Ewa, @ patster

    I too am interested in those questions.
    UK Consultant I visited did not test for viral levels nor CK before treatment, but am taking 3x400 acyclovir daily.

    Would have preferred more testing before being treated.

    Bad herxing so eased dose for 2 days. Hopefully improving.
     
  5. Patster

    Patster

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  6. Patster

    Patster

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    Hi Ewa: I wasn't tested for nk cells or cytokines. I was tested for viruses plus immune function in other ways.
    I am taking Valtrex for EBV. Due to my age, and I live in SC, Dr. Levine will probably not put me on Valcyte. My immune function is low. Will test immune function when on Valtrex later on. It will take time to work.
    You could call her office and ask if they would do those tests. Best of luck to you.
    Peace,
    Patster
     
  7. Eve18

    Eve18

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    Thanks.
    Can you tell me more about tests for immune function in other ways?

    What test did she use for EBV? I have elevated EBV VCA IGG but other EBV tests are in range.

    Thanks again.
     
  8. Patster

    Patster

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    Hi Ewa: IGG subclasses 1, 2, 3, and 4. I am low in IGG 1 and 3. IgA SUBCLASSES 1, 2 AND 3. I believe, Serum Antibody (14 listed) I was low in four of these. Other tests were for EBV, and HPV-6 both which had high titers and she expected were "active". I can't determine which test was used for EBV. I had tests done previously and brought them with me, like Lyme and others. Also tested for gene MTHFR variant. Other tests which were normal.

    I am very happy with Dr. Levine. If I have questions, I e-mail her and she gets back to me quickly. I have phone conferences with her monthly, but could request one at any time. I like the fact that she is current with the latest research and conducts research herself.

    Hope this helps. Let me know if you do see her.
    Peace,
    Patster

    Peace, Patster
     
  9. Eve18

    Eve18

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    Thank you very much. It helped me.
     
  10. Mariesak

    Mariesak

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    New Salem, Massachusetts
    Regarding this post, wondering what you mean by long term? What is the window for antivirals? I’m asking because I was diagnosed 10 years ago and had good response to antivirals. I relapsed two years ago and am not finding the antivirals to be as effective.
     
  11. aquariusgirl

    aquariusgirl Senior Member

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    I'm not sure ....maybe after the first couple of years.. but I mean I think a trial of these drugs will tell you pretty quickly if they are working.
     
    Mariesak likes this.

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