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Can any Nova patients tell me what to expect?

Discussion in 'ME/CFS Doctors' started by flsun13, Aug 10, 2017.

  1. flsun13

    flsun13

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    32
    Lakeland Florida
    Hi there.
    I live in Central Florida. I have been on a waiting list for the past two years to become a patient of Nova. Surprising I received a call last April, and I was able to schedule an appointment for next Tuesday.
    I was a patient of Doctor Lerner (I had to travel to Michigan to see him), and since his death I have seen several doctors without much success.
    I originally had mono due to Epstein-barr and CMV. Afterwards, Doctor Lerner found out I had lyme disease.

    The past month my health has deteriorated quite dramatically, and it is now very difficult for me to take care of my house. Since since 2-3 days ago, I have had fevers, joint paints, stomach upsets, and swollen tonsils.

    Has anyone had improvements at NOVA? If you are a patient, I would sincerely appreciate if you could let me know if you have improved under their care as I have heard a lot of good things about them.

    Thank you
    Roberto
     
  2. lnester7

    lnester7 Seven

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    3,320
    USA
    I have seen great progress from inmune system perspective (not being as reactive) not so much reactivations of infections.... It has taken as long as I was sick for me to see a difference (5y or so).
    Energy is separate they will play with different supplements,
    OI you will need a separate doctor for that.

    Advice: to take advantage of them, is best to address things that are treatable and addressable, they will ask you to address your 3 worst symptoms. I made the mistake to say Fatigue, and stuff like that.
    Better sample: Inability to stay sleep (or fall sleep) if you address that, the fatigue will improve. instead of saying sleep issue.
    Another thing: Inability to be upright (this will trigger a test for OI and a tilt table test...)
    The smarter you name your symptoms, and the treatable ones first, the better results you will have.
     
    flsun13 likes this.
  3. flsun13

    flsun13

    Messages:
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    Likes:
    32
    Lakeland Florida
    Thank you for replying so quickly! It really makes a difference to have such a wonderful community. I am thrilled to hear that you have improved under their care.

    Actually, I think that I might have strep throat since Tuesday.

    If I can get the way I was a couple months ago, I would be thrilled. As I was able to volunteer an hour a week, take care of the house, and work on my garden by little bits.

    I will definitely take your advice. I will say inability to stay asleep, stomach pains after eating, and I have to think of the third one.

    May I ask, do you travel far to the institute? I heard that people travel from all over the country to see them. I guess I am fortunate it is only 3-4 hr drive for me.
     
  4. lnester7

    lnester7 Seven

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    USA
    2 planes later! Is a rough trip for me.
    The immunological tests help for doctor to take me seriously. So for that is all worth it.
     

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