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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    My appointment with Dr Susan Levine

    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...
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    My appointment with Dr Susan Levine

    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...
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    My appointment with Dr Susan Levine

  4. P

    My appointment with Dr Susan Levine

    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
  5. P

    My appointment with Dr Susan Levine

    Hi jpcv , Attek, Fireflymd I had my telephone appointment with Dr. Levine this morning. The results were: Positive EBV and positive HHV6. will start Valtrex immediately and Valcyte in a few weeks. I have a missing gene: MTHFR which does not allow for absorption of folate. I will need to...
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    My appointment with Dr Susan Levine

    Hi jpcv: Have phone appointment with Dr. Levine tomorrow afternoon to review test results. Will update. Peace, Patster
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    My appointment with Dr Susan Levine

    Hi Fireflymd: I had my appointment with Dr.Levine last Monday, April 17. Although her office is in a"fancy" neighborhood, her office is very modest. I called her office and she even answered her own phone!! I loved her. She was able to confirm I have CFS with previous tests and symptoms. She...
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    My appointment with Dr Susan Levine

    Hi Attek: I am looking forward to my visit with Dr. Levine. I live in Hilton Head Island, SC, but I'm from NY and have kids living in NYC. I have been on Valtrex before, but just a short period of time. I know there is no "silver bullet", but would be happy if I could get some of my energy...
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    My appointment with Dr Susan Levine

    I will be seeing Dr. Susan Levine in mid April. I am so happy to come across your post. I am looking forward to seeing a doctor who works with CFS patients and is also into the latest research. I have, like so many who have this disease, been to so many doctors who don't understand anything...