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My appointment with Dr Susan Levine

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

  1. Attek

    Attek

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    Hi this is my first post. I have been lurking for several months, not quite sure if I had ME/CFS or not.

    For the last 3 1/2 years I have had a weeklong flulike illness about 4 times a year. This would be followed by about 6 weeks of a slow recovery and then about 6 weeks of what I called a remission where I felt about 75% normal. I was diagnosed about 2 years ago with neurally mediated hypotension and started Florinef. The family doctor, endocrinologist, cardiologist, and infectious disease doctors had no idea what was causing my flulike illness.

    At that time I did not think I had CFS because I thought the diagnostic criteria implied that the fatigue had to be continuous for 6 months and I never had a 6 month long relapse. I resigned myself to living with this mystery illness.

    Last fall I began researching my condition again. I watched Dr Montoya's YouTube lecture and began investigating CFS as a possibility again. I found one definition that included relapsing fatigue. I met the other criteria too like PEM etc.

    This Monday my husband and I went to see Dr. Levine in New York City. I live about 4 hours away in PA. We drove there on Sunday and came home on Monday afternoon.

    She confirmed that I do indeed have ME/CFS. She was easy to talk to and my appointment lasted about an hour. She drew several tubes of blood which she sent off for testing. She also sent me home with a test for SIBO and a stool test since I have begun having severe digestive issues in the last 6 weeks. It has made me exhausted and feeling sick a lot and has kept me from reaching a remission.

    She follows Dr. Martin Lerner's protocol, which I had heard of but am not familiar with. I've been sick all week since I came home but am feeling somewhat better today so I plan to research that some more. She has used almost every drug I had read about from antivirals to LDN to rituxan and said she would develop a treatment plan based on my test results. I don't know that she uses Immunovir because she told me to start taking inosine.

    She said that she would more aggressively treat my NMH during a relapse because that is when it is the worst. I took blood pressure readings - both resting and standing - during my last relapse & recovery to show her. She mentioned temporarily increasing my fludrocortisone, adding in midodrine, or prescribing saline IVs through my local doctor as possible options to help manage the symptoms. She immediately had me start sodium chloride tablets.

    She said that when I reach my next remission I should get a Fitbit and keep my heart rate below my target heart rate. She said she would help me develop an exercise program that would be suitable for me.

    I have read a lot of stories of people with ME/CFS both on and off this board. I know my case is mild/moderate and how tough it is trying to take care of a family at this level of illness. I've cried over the stories of those with more severe forms.

    My hope is that some medication could help me enter a long-term remission or could improve my symptoms during a relapse and recovery.

    I am very glad that I went to go see Dr. Levine. I finally have a doctor who is an expert on my illness! I'd be happy to answer any questions.
    Karen
     
  2. Binkie4

    Binkie4 Senior Member

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    @Attek

    Thank you for your feedback on Dr Levine's visit. It seems thorough and you are clearly glad to have seen her.

    Could I ask if you had had earlier testing for ME, and also how any follow ups/ test results etc will be conveyed/ carried out since I note you live a way from NYC?

    I ask because I live in the U.K, diagnosed 2008, moderate/severe- utterly hopeless treatments- so in fact I am not being treated other than supplements despite having a review at the local ME clinic last summer. You don't even see the doctor just a specialist nurse. I had CBT years ago ( useless) but have never had a drug treatment. GP refuses LDN, saline and antivirals and I didn't manage to see Consultant last year who I had hoped might offer more. I have more or less given up hope of any treatment ( we all suffer the effects of the PACE trial) but long to improve my pem especially. Am losing so much of what I enjoy as we all do. I do however visit my son in NYC ( with wheelchair) so maybe need to/ could look further afield so long as it would be possible to be treated at a distance after an initial consult.

    I have been using a hr monitor for a year to help avoid crashes.

    I know of Dr Enlander but will now read up on Dr Levine. Could you tell me where she practices? I will also read up Dr Lerner's protocol- is that followed by Dr Myhill in UK? Vague recollection that it may be. Would you mind indicating Dr Levine's charges and tell me why you chose her?

    Hope it is ok to ask all this. You kindly said you didn't mind answering questions so I have taken you at your word. Particularly concerned about follow up. My GP is unlikely to help -he is very NICE oriented hence total refusal to prescribe anything and I would probably not be in NYC more than once a year.

    Good wishes with your tests and what medication she prescribes.
     
  3. Attek

    Attek

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    Hi,
    I will try to answer your questions as best as I can and if I miss anything please don't hesitate to ask again. If I could help in some small way I am happy to do so.

    Dr. Levine's office is in the Upper East Side of Manhattan, about a mile north of Trump Tower. Her address is 115 E. 72nd St. She has a small office and it seems like she meets with all her patients herself rather than relying on physician's assistants or nurses. Although I was there on President's Day so I do not know what a normal workday would be like at her office.

    I had not asked any other doctors to evaluate me for ME/CFS prior to her. I chose her for several reasons: she has seen ME/CFS patients for 20 years, she's currently accepting new patients, she is actively participating in research conferences & clinical trials (though she has no lab of her own, her patients participate in a lot of the larger current trials), she lives reasonably close to me, and she actually accepts my health insurance.

    Although I did not know this ahead of time, she also treats many of the associated conditions like digestive issues, hypotension etc rather than sending patients to separate specialists. I really like that she will treat my NMH more aggressively than my cardiologist during a relapse because she understands the condition better than him. That is one of my worst symptoms.

    I knew I could trust her diagnosis. Dr. Enlander does not accept my insurance and I could not find as much active participation by him in research. I wanted a doctor who would be familiar with the latest treatments.

    As far as follow-ups and medication is concerned, that is a little more complicated. Some treatments that she may prescribe like gamma globulin or saline IVs do have to be carried out by a local doctor. Fortunately I already talked to my doctor and they are happy to help arrange that for me. I printed off some information about Dr. Levine from the ME wiki site so they would respect her authority.

    She will prescribe my medication directly, if I understand correctly. I am not sure how prescriptions work for overseas patients. She is not requiring me to see her for a follow-up next week since I live several hours away. But if you were able to stay in NYC for several weeks, she may be able to see you for a follow-up visit. My lab work is taking 9-10 days to be finished so that would be the ideal time for a follow-up.

    I do not yet know what the charges will be. She forwarded everything to my insurance company. Any bills that I may get may not reflect the true charges for a service since insurance companies negotiate down the prices for their members.

    I have studied Dr. Myhill's approach and I had taken a bunch of mitochondrial supplements that she had recommended without any noticeable relief. Dr. Levine said that all too often supplements are not enough but medications can greatly help. I am not sure how Dr. Lerner compares to Dr. Myhill since I haven't had a chance to research that much yet. But I do know that Dr. Levine seems to treat with a broad range of comprehensive medications rather than only being focused on antivirals or Immunovir.

    I felt comfortable with her as my doctor. I believe she will be able to help me. I am sure there will be some bumps in the road since I do not live in New York and communication is limited to emails and phone calls. It takes time to coordinate things with local doctors so my treatment won't progress as fast as if I lived there. But I trust her far more than any of my local doctors.

    I hope you can find some relief. I've read about the frustrating lack of healthcare in the U.K. for CFS. Maybe Dr. Levine would be able to help you. It certainly seems worth looking into.
     
    Sancar, bertiedog, fireflymd and 2 others like this.
  4. aquariusgirl

    aquariusgirl Senior Member

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    I saw her & she gave me the impression there is not much she can do if you're long term sick because the window for antivirals is closed
     
    Binkie4 likes this.
  5. Binkie4

    Binkie4 Senior Member

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    @Attek

    I will think about what you have said. Thank you for such a full response. Oddly just before I saw your reply this morning I saw that Dr Levine is taking part in a webinar in April. Have forwarded my details so that I can listen.

    I will need to check out the finances. Am assuming I will get an email address if I google it so will send an email- do you get the impression that she has an efficient office set up so that replies will be forthcoming? I contacted another ME doctor once but never heard back.

    I am fairly familiar with the upper east side in Manhattan having visited a doctor on an emergency visit there when I forgot some medication so it's a possible in practical terms.

    Emotionally it's a bit more difficult. Sometimes after 10 years ( which I know is minimal in many people's experience with this illness )I think that acceptance may be a wiser way ( crushed hope is too painful) but I need to sort that out for myself. Then I lose something important from an unexpected crash and I want the rest of my life.

    Anyway thank you again. I send you all good wishes for your treatment and thank you for offering more info if needed.


    @aquariusgirl
    Thank you for your reply. Maybe the webinar will deal with the question of how long antivirals will be of use. Good wishes.
     
  6. aquariusgirl

    aquariusgirl Senior Member

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    Brian Vastag said Levine said same thing to him in his article about coming down w/CFS
     
    Binkie4 likes this.
  7. Attek

    Attek

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    My illness is of a relatively short duration about 3 1/2 years so that may be why Dr. Levine has discussed antivirals with me.

    I guess each person may have a different experience with each treatment and each doctor.
     
    Binkie4 likes this.
  8. Patster

    Patster

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    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 about this devastating disease. I hope you are feeling some relief and continue to feel better.
    Patster
     
  9. Attek

    Attek

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    Good luck with your appointment Patster! I probably forgot to mention that another thing I liked about Dr. Levine was that I was able to see her for the appointment and not a PA or nurse. I hope that she is able to help you!

    Do you live near NYC or are you traveling there for your appointment?

    I wish I could say that I feel wonderful but that's not the case yet. My digestive symptoms have eased up since I started a low FODMAP diet but my energy levels have not improved yet.

    I have started on Valtrex and I will be starting Valcyte in a few weeks and from what I have read, it often takes several months to feel better & can even feel temporarily worse.
     
  10. Binkie4

    Binkie4 Senior Member

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    @Attek

    Just to say I hope you are managing your treatments. I see that you haven't yet improved in energy. Good wishes with that.

    Also to let you know that I have decided on a consultation with Dr Bansal I Surrey ( England) for the moment. I can see him at the end of April rather than waiting till Sept/Oct when I will be in NYC.

    I am interested in Valcyte and Valtrex....antivirals?? Is it important that you take one before the other? I hope you do not feel worse.
     
  11. Basilico

    Basilico Florida

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    From my understanding and experience, Valcyte is considered to be more effective than Valtrex. However, with that possible increase in effectiveness comes a much higher likelihood of liver damage. As a result, doctors tend to be less inclined to prescribe Valcyte because you must be vigilant about checking organ function through blood tests and stop the medication as soon as any values start getting out of whack. Valtrex, though considered less effective, does not carry the same risks, so doctors seem to preferentially prescribe it. Occasionally, you might be able to find a doctor who starts with Valtrex, but then switches to Valcyte if there is no improvement.

    Both I and my husband went on Valtrex for several months and didn't experience any benefits.
     
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  12. Patster

    Patster

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    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 back. I'm now in my third month of a "relapse", and wondering if this isn't a relapse but the new normal. Still hopeful each day will be better. Actually got out today to get the car washed!! Would never have thought that would be something to celebrate--but, I'll take it.
    Peace
     
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  13. eljefe19

    eljefe19

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    Peace, bruh
     
  14. fireflymd

    fireflymd

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    Patster, did you have your appointment with Dr. Levine yet? How did it go?

    I may make an appointment with her as well. I cannot get in to see Dr. Chedda at OMI until mid-December. I'm curious to know what you thought of your office visit with Dr. Levine.
     
    Binkie4 likes this.
  15. Patster

    Patster

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    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 was very good at listening and asking questions . My appointment lasted about one hour. She took many vials of blood and administered a the "tilt" test. She will call me this week with the results of the tests and will work with my doctor here in Hilton Head Island to have additional tests such as, brain MRI, thyroid scan, heart monitor, etc and antivirals. I also like the fact that she does research and is closely related to other researchers in the field like Montoya and Hornig. I know there is no cure, but I do feel very confident I am in very good hands with Dr. Levine. Let me know if you see her and how it goes.
    Peace,
     
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  16. Binkie4

    Binkie4 Senior Member

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    @Patster - I am still following this thread from England. Good luck with your treatment and please let us know how things go with you.

    @Attek - just wondering how your treatment is going. I hope that by now, you have seen signs of improvement and that the antivirals are working.

    I was hoping to see a recording of Dr Levine's lecture last Thursday but I understand there were technical issues. I've written to ask to be informed if it is available but heard nothing yet.

    Am still considering whether to make an appointment to see her later in the year. There is just no treatment in the UK and my last relapse is continuing so may be the new normal. Horrible disease.

    Good wishes.
     
  17. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Did she prescribe antivirals or is she waiting for the results of the exams?
     
  18. Patster

    Patster

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

    Patster

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    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 self inject B12 weekly (made up from a compounding pharmacy). She also said out of 14, I had four indicators with low response to infection. (Don"t really understand exactly what this is).

    My IgG 1 and 3 are low.
    Possible IVIG later. Note: My grandson is on IVIG. Costs $4000. per month for a 40 lb boy. That would be three times as much for me. Also, insurance companies fight tooth and nail NOT to pay for this.) I hope it is not needed.

    I have been to a lot of doctors including Functional Medicine doctors, none have tested for all these. I am very confident I will see some improvement. I would recommend Dr. Levine to anyone who has or thinks they have CFS. One good thing out of all of this is I am not crazy!! There is proof that something is wrong.
    Peace,Patster
     
    Last edited by a moderator: Apr 27, 2017
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  20. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Hi Patster, thank you for your update. I'm happy that you have found someone you can trust.

    Did she tell you hoow long are you going to be on antivirals?
     
    herpesbaby and Binkie4 like this.

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