Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Psychiatrist in NYC

Discussion in 'ME/CFS Doctors' started by Andrea77, Jul 18, 2015.

  1. Andrea77

    Andrea77

    Messages:
    5
    Likes:
    8
    Hello everybody!

    happy to find out there is a virtual community of real people suffering from CFS and ME like me. I have been diagnosed with CFS 8 years ago and since then I have been taking medication (cymbalta and venlafaxine) that helped but did not solve my problems. Also, they caused me a lot of side effects, which is why I decided to stop taking them (I was on venlafaxine) last year (with A LOT of SEVERE withdrawal symptoms). That said, after a year (now) I started feeling bad again and went to a doctor here in NYC, Susan Levine. She is GREAT, I started bupropion and valtrex. The very first two months I felt good, literally another person: active, not tired (physically and mentally), no foggy brain (which is a big issue for me). But after the first two months I had herpes all over my upper lip (...valtrex is supposed to treat herpes...). Since then a DEEP fall down... physically I am not tired but mentally I am exhausted, confused, sleepy and I have some language issues (forget words and limited vocabulary). My mood is TERRIBLE, sad, very emotional...etc Doctor Levine suggested to see a Psychiatrist, and I am looking for a good psychiatrist in NYC. Any suggestion?
    Thank you!
    Andrew
     
    AaroninOregon and Misfit Toy like this.
  2. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    Not knowing anything about your financial situation, I just want to say if you ever need to go on disability, especially private long term, having seen a psychiatrist on your recordwill pretty much kill any chance you get of getting it.

    If you did manage to get it, most have an end date for covering psychiatric disorders.

    If you need medication, maybe your PCP will help you out. If you need someone to talk to a psychologist would be better IMO.

    If that isn't a concern maybe Dr. Levine has some recommendations.
     
    Andrea77 and sarah darwins like this.
  3. geraldt52

    geraldt52 Senior Member

    Messages:
    395
    Likes:
    1,534
    You may be happy with Dr. Levine, Andrew, but I honestly can't believe that the first thing she would suggest to you is a psychiatrist, and not consider that it is the drugs that you are taking that are causing your new problems. That seems like a no-brainer to me.

    If it were me, I would stop the Valtrex and bupropion, and carefully research side effects and drug interactions of anything else that you are taking. Doctors seem to be clueless, by intention or oversight, regarding drug side effects. I have stopped Valtrex without tapering, with no ill effect, but I have no experience with bupropion, so you may want to research how best to stop that. If your symptoms go away, you may be able to restart the drugs at a different dosage, if you think they were actually helping you.
     
    aimossy and sarah darwins like this.
  4. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    If you’ll allow me a little smile to myself, I just love the idea of someone looking for a psychiatrist in New York city. Maybe I’ve seen too many Woody Allen movies but my impression was always that the problem there was avoiding them!

    More seriously, I do agree with both minkeygirl and geraldt52. Make sure it isn’t the drugs themselves that are the problem before embarking on something which could come back and bite you later.

    A lot of meds can seriously mess up your mind, and that is especially true for people with me/cfs. We often seem to be quite severely affected by anything with psychotropic or neurotropic properties. A while back my GP persuaded me to start a low dose statin which she thought would help with my chronic migraines. I took half of one dose and promptly had two nights of terrifying nightmares — the worst I’ve ever had. Then I did some reading (bit late) and found out that this was a known side effect. Needless to say, I didn’t carry on (not sure why I agreed in the first place).

    Do some serious research, maybe talk to Dr. Levine about the best way of taking a break from each med in turn to see what changes. If it turns out one of those drugs or an interaction between them is causing your problems, then (definitely a Woody Allen line) you would have to be crazy to see a psychiatrist.

    One other thought: if you’re able to get out a bit, there must be support groups in the city. Just talking to other sufferers face to face over a cup of coffee is a massive emotional release and support. Cheaper than a psychiatrist, too, and nothing goes on your medical records.
     
    Andrea77 likes this.
  5. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,006
    Welcome to Phoenix Rising.:)

    I wouldn't discount seeing a psychiatrist. Dr. Levine has a good reputation. She might be able to recommend someone. We each react differently to medications. Bupropion made me hypomanic and a bitch on wheels. Zoloft saved my life. Literally. I have depression as a comorbid condition but resolved with SSRIs. I can't take SNRIs. Wellbutrin works differently than SSRIs and SNRIs.

    Unfortunately, it may be a trial and error at first and since you don't know how you will react, monitoring is especially important for many reasons. Some people who have had suicidal ideation but not enough mental energy to carry this out, may start to feel better enough to follow through before the AD has reached it's full effect to realize the full consequences of doing this. Not saying this applies to you at all, but it's an important to keep this in mind.

    When I applied for private disability, I was told it was easier to initially get disability with psychiatric disabilities. Funny, that.

    Barb
     
    Last edited: Jul 19, 2015
  6. Andrea77

    Andrea77

    Messages:
    5
    Likes:
    8
    Thank you so much to all of you!
    I am going to stop valtrex because it seems unnecessary and not helpful, but I want to have Levine's opinion on how to stop it.
    Buproprion... it actually helps me a lot, but I think that a psychiatrist would know how to adjust dosage and combine it with a serotoninergic medication (that's what dr. Levine said to me).
    Will keep you all posted :) enjoy this nice hot Sunday!
     
  7. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,624
    USA
    One of the first things I did when I got sick was see a psychiatrist. No one knew what to do for what was called CEBV back in 1989. It wasn't even CFS or ME yet.

    It never hindered me from winning SSD.

    I wrote on here yesterday how a shrink actually helped me to win SSD. Psychiatrists are not the monsters that many believe them to be. Many believe in CFS.

    I do agree though about the fact that why isn't Dr. Levine working with you regarding your fever blisters and Valtrex? Its been years, but I saw her in 2002. Buspar did zilch for me.

    A psychiatrist is a good idea. They know head meds better than regular doc's.
     
    Last edited: Jul 19, 2015
  8. Andrea77

    Andrea77

    Messages:
    5
    Likes:
    8
    Hi Misfit toy, I do agree with you :) and I am loosing trust on Levine's method. I respect her and her work, but it does not seem to work on me. She actually said that maybe my fever was caused by a resistant strain... OK but it's my health right?
    Take care :)
     
    sarah darwins likes this.
  9. geraldt52

    geraldt52 Senior Member

    Messages:
    395
    Likes:
    1,534
    It's definitely your health, and I've learned the hard way not to rely on any doctor when it comes to drug side effects and interactions. They just simply don't seem to care. Not saying what's going on with you, but Valtrex can do exactly what you are describing. Do your own research and test your own ideas. If you do figure out it is one of the drugs, and report it to your doctor, I can virtually guarantee you it won't be reported to the FDA as it should be...so, "rare" side effects are really a lot less rare than the drug literature suggests.
     
    jimells, zzz and sarah darwins like this.
  10. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,624
    USA
    Not everyone does well with Levine. She usually gives A LOT of meds to try and if the patient doesn't do well on them she is stumped. It's like a one size fits all scenario.

    There are other meds besides Valtrex for fever blisters. Acyclovir for one.
     
  11. Andrea77

    Andrea77

    Messages:
    5
    Likes:
    8
    Misfit Toys, I have this feeling too. I do think she is a good doctor, but her approach is not working on me :(. I went through the trial and error approach 8 years ago, now I don't have energy, time and money just to try things out. ;) I am happy I found nice people to chat with, and share our problems and thoughts !
    I am from Italy where there is poor knowledge about CFS
    Here things seem to be better, but still in development :)
     
    Last edited: Jul 19, 2015
    Misfit Toy likes this.
  12. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,624
    USA
    Andrea77, if you are in NYC or NY, I bet you there are other docs up there who can help. They may not be the "best" docs in CFS or ME, but I even question their methods at times. We are a sensitive lot and need careful attention and administration of drugs. Some throw crap at you.
     
    Andrea77 likes this.
  13. geraldt52

    geraldt52 Senior Member

    Messages:
    395
    Likes:
    1,534
    Andrew, if I'm reading your first post correctly, you started on Valtrex for CFS and ended up fighting fever blisters? That really isn't very surprising to me, as I've had similar experiences. You might want to try loading up on Lysine, a supplement available almost everywhere...I've actually found lysine to be as effective for fever blisters as any of the drugs. In fact, when I think about it, Lysine may be the only supplement or drug, out of literally hundreds that I've tried, that I would actually recommend to someone with CFS. Everything else I've tried has ended up with a down-side that outweighed any up-side.
     
    AaroninOregon likes this.
  14. Andrea77

    Andrea77

    Messages:
    5
    Likes:
    8
    Hi Geraldt52,
    Yes I had one single outbreak, but after then nothing. The funny thing is that in 38 years of my life I have never had labial herpes. Thank you for comment!
     
  15. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    SSD is different Than long term disability. Very different.

    I couldn't take valtrex. Turned me into a screaming lunatic.
     
  16. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    Statins sure seem to have more than their fair share of adverse effects. It seems like everyone I know who has taken them has adverse effects. I should think that statins would be the last drug to try for our illness, since they are designed to disrupt the pathways that produce CoQ10.

    And CoQ10 appears to maybe help treat migraine:

     
    sarah darwins likes this.
  17. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    I completely agree (now). I didn't know about the CoQ10 effect. Thank you.

    I guess my experience is yet another example of what happens when family doctors are actively encouraged to view me/cfs as a psychosocial condition. People with ME seem to react atypically to many medications but few of our doctors are even vaguely aware of this.

    Cheers, jimells
     
    jimells likes this.
  18. ghosalb

    ghosalb Senior Member

    Messages:
    136
    Likes:
    258
    upstate NY
    I saw Laura Monsarret in NYC in 2009....she has CFS/ME also.....good experience....don't know if still practicing.
     
  19. ghosalb

    ghosalb Senior Member

    Messages:
    136
    Likes:
    258
    upstate NY
    Sorry...it is Monserrat
     

See more popular forum discussions.

Share This Page