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My visit to Dr Susan Levine NYC

Discussion in 'ME/CFS Doctors' started by joanne218, Jul 5, 2015.

  1. joanne218

    joanne218

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    I went to see Dr Susan Levine in New York City early in June. She asked me many questions about my illness. I've done a great deal of research so I didn't have a lot of questions. She did answer the ones I had. She was very nice. She seems to care about her patients.

    There were patients coming in for vitamin infusions and other treatments. She gave me a vitamin infusion and if I lived closer I could have gotten one every week and the best part is she bills the insurance companies. Here in Rhode Island I have to pay $125.00 for one infusion. Unfortunately, I can't afford that. Dr Levine called me with the results about 3 weeks later. She said I had high EBV levels and low immune function. She prescribed Valtrex, 500 mg a day for a week, then 500 mg 2x a day after that.

    She also put me on Low dose Naltrexone. I just started taking it and I started at a low dose, 1 mg a day. I haven't started the Valtrex yet but plan to Monday. She is going to consult with me again at the beginning of August. Hopefully I will see some improvement. I know this will be a slow process. I am nervous about the side effects of Valtrex but I definitely want to give it a try. I will keep you updated on how I make out. I'm very glad I took the trip to New York. I feel I have some hope of improvement and at least I know I am doing all I can to try and get better. Any feedback is welcomed.
     
  2. AndyPandy

    AndyPandy Making the most of it

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    Welcome to PR @joanne218 and best wishes for a good outcome from your treatment.
     
    joanne218 likes this.
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Hope all goes well. Some people here start even lower on LDN, at .25 mgs. 1 mg would do me in if I started off the bat.

    @Sushi, can yo break that post up? Thanks
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    Wow! I can't believe she bills Medicare for vitamin infusions. That's great! Mine are $150 and out of pocket if I get one. I'm glad your appt went well.

    I hope your treatments work and best of luck.
     
    joanne218 likes this.
  5. joanne218

    joanne218

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    When you say it would do you in, what symptoms might you get? Someone I know took 2 mgs, 2x a day and got really sick for a week then stopped all together. I haven't been feeling great so I am wondering if the LDN might have something to do with it. thanks :)
     
  6. Carola

    Carola

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    Hi @joanne218 - if I may butt in on the LDN dosing-discussion, I also started out at 0.25 mg (in liquid form) and over a period of weeks and then months worked my way up 1.5 mg/day. Even at 0.25 mg I had unpleasant symptoms - insomnia and headache - but I was prepared for these (thanks to this Forum!) and expected that they would subside, which they did, after a couple of weeks. It has turned out to be one of my most useful treatments, so I hope it will work out for you and be of benefit.
     
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  7. hardatwork

    hardatwork

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    HI! I'm wondering how you're doing and if you've seen any improvement. I'm considering flying out to see Dr. Levine and trying to get as much info as i can about her before I go.
     
  8. minkeygirl

    minkeygirl But I Look So Good.

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    @joanne218 Just saw this. I would get headaches and would not sleep at all. I was never able to take it at night because I got zero sleep.

    After a few months where I got up to 3 mgs I didn't notice much so I stopped it.

    I know people take in the mornings but I still haven't heard how beneficial it is and what time is best? There is an endorphin rush in the mornings but I don't know when

    @hardatwork There are others here who see Dr. Levine. I think there are some threads about her if you search around.
     
    Mackee likes this.
  9. joanne218

    joanne218

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    I haven't started the Valtrex yet. I am nervous about side effects and I wanted to enjoy the summer before starting new meds and possibly feeling worse. I keep putting it off. I don't know why I just feel nervous to take it. Maybe someone could help me out. I don't know what's holding me back. I need to email Dr Levine to ask her some more questions. @hardatwork where do you live? If I didn't mind flying I would choose to see Nancy Klimas. However, if NYC is better for you to go to I think it is worth the trip. Just make a list of everything you want to ask her so you don't forget because she is hard to get a hold of on the phone but I have heard she responds more quickly to emails. Good luck, let me know how it goes if you decide to see her.
     
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  10. SOC

    SOC

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    Valtrex is a pretty safe medication with few side effects. I really don't think you need to worry about it. Of course, anyone can have idiosyncratic reactions to any medication, but Valtrex is low on the list of ones to worry about. My daughter and I have both taken it for years at relatively high dose with absolutely no side effects.

    Valcyte, on the other hand, is a different matter. That is a medication with some serious potential side effects and many PWME have some problems as some stage of Valcyte treatment.

    Dr Klimas is not taking new patients, so seeing her is not an option unless one is already a patient of INIM. :(
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had awful side effects from Valtrex. Even at only a half dose, by three weeks I could no longer walk due to severe joint and muscle pain. It has not completely gone away a couple of months later. I know that this isn't typical but it is listed as a possible side effect. I started getting it immediately so I'd guess you'd know quickly if Valtrex was going to bother you--at least in that way.
     
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  12. joanne218

    joanne218

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    Thank you Sushi and SOC for the feedback. @SOC have you had much improvement with the Valtrex? I guess it's worth a shot for me to try it.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Note: some say that the generic (which I took) is more likely to cause side-effects than the brand name.
     
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  14. SOC

    SOC

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    For me it was Valcyte that made the big difference, probably because I have reactivating HHV6. My problem with EBV is that it keeps reactivating at low level, so I have to take Valtrex continuously to keep it generally under control, although even so I get mild reactivations occasionally. I wouldn't go without it since I'm generally better with it than without it, but it wasn't a huge or rapid improvement. Your situation could be different. :)
    I have heard the same. My first specialist said to use only the brand, Mylan, or (IIRC) Teva because he saw either more side effects or less effectiveness with others. I have always taken the brand or Mylan until very recently and haven't had side effects.
     
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  15. denmarkk

    denmarkk

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    The first thing for which I noticed a true easing of symptoms was with Valtrex. Within a couple days the intense flu-like symptoms and brain fog started easing. Not a lot, but enough to make more life more comfortable and feel more alive. It's considered a very safe drug and has been taken long-term by very many people. I think it may cause a slight Herxheimer effect in the beginning, so some people's complaints may be related to that.

    The second drug that has caused improvement is Low-dose-naltrexone. Again, it's a very, very safe drug. I still get vivid (and upsetting) dreams that border on nightmares. But that has happened less and less.

    Good luck on your treatments!
     
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  16. joanne218

    joanne218

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    I started the Valtrex (generic brand). Today was the third day. I feel like it might be helping but my symptoms are so on and off so I'm not sure yet if it is from the medicine or not. I'll keep you all updated.
     
  17. denmarkk

    denmarkk

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    I just realized in my previous post, I made an error. I said I improved with generic Valtrex in a couple days. I meant a couple WEEKS. I started to get less brain fog and flu-lke feelings. I never had any side effects to valtrex and I'm been on it continuously for 2 1/2 years. Also, you can take LDN in the day time if it starts to disrupt your dreams. Studies have shown it to be just as effective. Wishing you continued good luck with both treatments.
     
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  18. joanne218

    joanne218

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    Thanks. I think I'll take the Valtrex for a month then start back on the LDN so I know how the valtrex is effecting me.
     
  19. Mackee

    Mackee

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    I have read many accounts of patients having particular issues on the Mylan generic of Valtrex in particular. I also did not have a good experience with it, but it could have been due to the starting dosage being too high...I tend to be highly sensitive to generics & the different fillers they use. I prefer certain generic rx's & have had these put in to order monthly at my pharmacy for quite some time.
    But I digress. Tomorrow I am supposed to pick up the brand name Valtrex (which had to be ordered in) and titrate it from 500 mg, 2x/day back up to 1g., 3x/day.
    I'm feeling nervous about taking even one tablet, my reaction was nasty to the 1g. generic pill I took!
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Please let us know how you do with the brand name. My doc suggested that I start by cutting the tablets as I am also sensitive to meds. I wasn't taking the Mylan generic but the Aurobindo one. They are supposed to be okay, but each of us has our own set of reactions to fillers.

    Good luck with this!
     

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