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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.
     
  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.
     
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  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.
     
  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?
     
  6. jpcv

    jpcv Senior Member

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    Acetil-carnitine, Inosine,Phosphatidyl Serine
    I forgot to mention Florinef for hypotension
     
  7. rel8ted

    rel8ted Senior Member

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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.
     
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  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
     
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  9. Helen

    Helen Senior Member

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    Thanks. Best wishes with your treatment. I really hope it will make you better
     
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  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.
     
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  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... :)
     
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  12. nryanh94

    nryanh94

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    @Alenka you can try messaging Dr Levine on Facebook
     
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  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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  14. nryanh94

    nryanh94

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    Just wanted to add my experience without starting a new thread.

    I had my appointment with Dr. Levine recently, and all I can say is she is great. I've had this illness for a little over a year and it is still mild enough that I can work fulltime. I have gone to several doctors and was constantly told depression. Dr. Levine reviewed my blood work from previous doctors and said it lined up as being ME/CFS, it was kind of a relief finally getting a diagnosis.

    My appointment started with going to her office and discussing my history/ health issues, she hen went over basic potential treatment plans (Valtrex, LDN, different supplements and diet that I will outline below). Let me add that Dr. Levine will do her best to treat anyone but she is under the belief that those that are more likely to respond to antivirals are people who have only had this illness for 3 years or less, which luckily is my case. She is a very kind individual, and almost reassuring to me. You can tell she cares deeply about treating those with this illness.

    After the discussion she does a modified tilt table test, a few reflex tests, and then runs any bloodwork that she thinks needs to be added to what you already have.
    Price/Insurance
    The price if you do not have her insurance for the consult is $450, she takes I believe BCBS and medicare? not sure
    She charges bloodwork to your insurance.

    Prescriptions:
    I left her office with a prescription for Valtrex (1g for 5 days, 2g for 5 days, then 3g a day), (Dr. Levine prefers to prescribe Valtrex over Valcyte due to Valcytes toxicity, and its potential of causing infertility, specifically when dealing with younger patients. She stats you on a low dose of Valtrex and builds you up, if you don't respond switches to valcyte from my understanding. I also personally only had EBV elevated titers and had not had HHV6 or CMV tested so I may have to be put on Valcyte later) and
    LDN at .5 mg, with the potential for more prescriptions based off my bloodwork

    Note: She only prescribes enough antiviral to last until your next blood work

    Diet:
    Dr. Levine recommended to Diets and to my surprise neither was a paleo or AIP. The first was a Ketogenic diet she recommended do this in cycles of 4 weeks. She said I could do the Keto for a week then switch to the second diet if need be. I believe she said the Keto diet fit in with the Metabolomics studies going on.

    The second diet was an alkaline diet, this diet is mostly vegetables (preferably in a soup form) and some fruit. The basic premise being that our bodies are overly acidic and that is not our natural state.

    Supplements recommended:
    Lysine
    BCAA (off the top of my head, think this was the brand) https://www.transparentlabs.com/products/coreseries-bcaa-glutamine
    Pro Biotics (Jigsaw essential blend)
    Acetil-carnitine
    Inosine .5-2 g day (start lower dose) (cardiovascual research)
    Phosphatidyl Serine (100-500 mg/day) start low (Nugema)
    Citrulline 1-4g/d. ((Bulk supplements)
    Creatine 2-8g/d NOW labs
    and a few other things
    (she didn't recommend B12 injections to me because I am already on them)

    Supplements she didn't recommend:

    This was really interesting to me and I asked her about it, but she didn't include Ribose or COQ10 in with her recommended supplements. I asked her why and she said that while some people with ME/CFS can benefit from these, that they are finding more and more that it benefits Fibro patients more so than ME/CFS. So if they don't benefit you and you don't have fibro that may be why.

    After her appointment, she schedules a phone consult with you roughly a week or so later ( I still have not had mine) to discuss your labs and next steps. She also sends you a slip to have bloodwork done monthly if on antivirals. She communicates all of this treatment to you PCP, and if the PCP is skeptical she is willing to send them research articles such as Dr. Lerner/Montoya's research on antivirals.

    All in all I think she was excellent and I feel optimistic for the first time in a while.

    Note to those interested: If you live in general area of her office, she is currently doing research trials and in search of participants, I unfortunately do not.

    Other Note: If you are feeling up to it that day, her office is only 2 blocks from central park, and I found sitting there very relaxing

    Travel Note: For Those who are flying in to NY, if you can Fly in to Laguardia airport instead of JFK. JFK is a 45 minute cab ride from manhattan (her office) and the cab/lyft/uber fair can push $60. If you do fly into JFK, I believe there is a way to take the metro to her office, I just could not figure out how. If anyone has any questions for me I can try to answer them.
     
    Last edited: Jun 28, 2018
  15. Pink

    Pink Senior Member

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    Why fly into Dulles airport that is in Washington dc?
     
  16. nryanh94

    nryanh94

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    Lol, sorry it’s been a long day. LaGuardia not Dulles. Thanks for pointing it out
     
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  17. ljimbo423

    ljimbo423 Senior Member

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    Hi nryanh94 and congrats on finding a knowledgeable doctor to help you treat your CFS! Did Dr. Levine suggest a dosage on the BCAA's?

    Jim
     
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  18. nryanh94

    nryanh94

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    She reccomended 2-10g total a day. With this specific BCAA she reccomended starting at 1/4 scoop a day, and work your way up to 1.2 scoops a day max
     
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  19. ljimbo423

    ljimbo423 Senior Member

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    Thanks, I appreciate the info.
     
  20. jpcv

    jpcv Senior Member

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    @nryanh94
    My experience with Dr Levine was basically the same as yours.
    Some diferences:
    -She wants me to start Valcyte because I have high IgG CMV titers
    - She didn´t recommend me any specific diet, I´ve been on a gluten free, low carb diet for more than a year.

    Did she ask you to do a breath test for disbiosis?
     
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