Psychiatrist in NYC

[Andrea77]

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

 

[minkeygirl]

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.

 

[geraldt52]

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.

 

[sarah darwins]

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.

 

[barbc56]

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

 

[Andrea77]

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!

 

[Misfit Toy]

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.

 

[Andrea77]

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

 

[geraldt52]

... I am loosing trust on Levine's method. I respect her and her work, but it does not seem to work on me... it's my health right?
Take care

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.

 

[Misfit Toy]

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.

 

[Andrea77]

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

 

[Misfit Toy]

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.

 

[geraldt52]

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.

 

[Andrea77]

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!

 

[minkeygirl]

SSD is different Than long term disability. Very different.

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

 

[jimells]

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.

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.

Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder.

Plasma CoQ10 was significantly (p=0.00001) lower in ME/CFS patients than in normal controls. Up to 44.8% of patients with ME/CFS had values beneath the lowest plasma CoQ10 value detected in the normal controls, i.e. 490 microg/L. In ME/CFS, there were significant and inverse relationships between CoQ10 and the total score on the FF [FibroFatigue] scale, fatigue and autonomic symptoms. Patients with very low CoQ10 (<390 microg/L) suffered significantly more from concentration and memory disturbances.

http://www.ncbi.nlm.nih.gov/pubmed/20010505

And CoQ10 appears to maybe help treat migraine:

Several agents that have a positive effect on mt [mitochondrial] metabolism have shown to be effective in the treatment of migraines. The agents include riboflavin (B2), coenzyme Q10, magnesium, niacin, carnitine, topiramate, and lipoic acid.

http://www.ncbi.nlm.nih.gov/pubmed/24331360

 

[sarah darwins]

I should think that statins would be the last drug to try for our illness

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

 

[ghosalb]

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

I saw Laura Monsarret in NYC in 2009....she has CFS/ME also.....good experience....don't know if still practicing.

 

[ghosalb]

I saw Laura Monsarret in NYC in 2009....she has CFS/ME also.....good experience....don't know if still practicing.

Sorry...it is Monserrat