Discussion in 'Fibromyalgia Main Forum' started by street129, Mar 4, 2010.
and not susan levine..... she is a trip
Here is another reputable CFS doctor
Dr Derek Enlander
Best of luck to you.
No need to disparage CFS doctors. There are some of us who think Dr. Susan Levine is very good. Try Dr. Enlander. He too is excellent.
i'd probably see dr. enlander if i was in NYC. i used to consult with dr. leo galland by phone..he is also in NYC but i dont think he takes insurance.
anyone ask levine what she thinks of XMRV? i heard very few of her patients have tested positive....?
Just returned from Dr. E, and he bought a new machine (he received a grant) which is called an EECP machine.
I need to do more research so I have no opinion about this machine. He was enthousiastic about the EECP. It was just delivered last week.
[This Message was Edited on 03/08/2010]
hi pluis. i just heard that none of enlander's patients have so far tested positive for XMRV. i was wondering if you might be able to verify this when you see him?
This machine is used for people with angina that aren't candidates for bypass surgery, angioplasty, or stenting. What does Dr. Enlander intend using it for?
[This Message was Edited on 03/08/2010]
It is supposed increase the bloodpressure, and so, will make the heart stronger. You will need to be treated 5times a week. That is what he said about it. Or maybe he referred to my personal case because I have very low bp.
That is correct. Dr. Enlander said that none of his patients have tested positive for XMRV so far.
Now I was tested for XMRV for free when I went to see Dr. DeMeirleir last November. But I haven't received the results yet, and I am afraid I have to wait for this for a while.
I had other tests done at DeMeirleirs' office and I will start a new subject about this.
From what I read you receive treatment five times per week, two hours each session, for something like 35 hours in total.
I'm also a huge fan of Dr. Susan Levine.
Yes, she can be very blunt--this does turn a lot of people off. Personally, I find it refreshing, as unlike many others, she does not make false promises about cure rates, etc. She will try like hell for you. That being said, she will tell you straight up that if you have been sick more than 18 months, it is unlikely that you will see substantial improvement. You need only look to this board to find out that this is often very true.
She also does not bill abusively--this cannot be said for some of the doctors listed in this thread.
Again, she's not for everyone. Still, my point is that there are a ton of us who like her bluntness.
i cannot stand levine. she is erratic, moody, rude, and doesn't seem to give a chit at all. if you really cannot get affected by a doctor's attitude and rudeness at all, and you don't live out of town, then she wouldn't be a bad choice. also, i wouldn't count on her doing everything she tells you she will.
her staff sucks too and enlander's staff is nice.
the worse staff experiences i have had so far have been dr. lerner's lol[This Message was Edited on 03/09/2010]
I fully agree that her staff is less than impressive. Then again, you get what you pay for. Her prices are among the most reasonable among any treating this illness--better staff would probably mean higher costs passed along. It's a very small operation--anything more would mean more $$$$.
I have not seen the rudeness/apathy thing. I'm not saying that it hasn't happened--just not to me.
All is a moot point, because I really don't do much in the way of Dr. visits anymore. Until we have a proven cause and therapy, I'm going to try to hold my money.
Ben Natelson, MD is now in NYC. He used to be at UMDNJ. However, you have to pay out of pocket first & wait to be re-imbursed. I think he's out of Beth Israel, near Union Square.
Let us know who you find & how it works out for you.
I'm not sure where you are located in new york-- but I have a doctor who has helped me SO much, he is a holistic kinesiologist and specialises in CFS, lyme, epstein barr, etc. He is WONDERFUL-- he is located in roslyn and hauppauge- Doctor Silverman. I highly recommend him.
I have to agree with aftermath. I do not live in NY and I have been seeing Sue Levine for about three years. Sue also answers e-mails and phone calls. She also worked with my insurance. As for her staff, they do their job.
She will discuss anything that I bring into the office and she tells it like it is. IMHO the doctors in Jersey that are specialists in this field and I have initially consulted will not validate my condition, but they will treat me for a lot of other medicalized conditions.
I have two other doctors in NJ that have told me that my CF etc. was a long time in the making. Sue also said the samething, but in a different way. Also she is willing to work with these doctors if need be.
I hope this helps. Also there is another Dr. in Dr. Levines office and I believe his name is Dr. Smith. Do not know what his medical area.
best regards badge
First, I have a background in many areas (biochemistry, chemistry of arts - was obtaining my Masters, mother in medicine)....thus I did my own research (just as I did as a young teen) into primary (holistic earth/plant et al based healing modalities) and then found Doctors who could carry out my Agenda.
Recovered from end stage (I do not use names as in hollistic therapist it is useless) near dead (think 9/11 and fire men dying) to walking, talking so on.
Then after spending 100k's plus out of pocket - NO one would assist with my SSD locally (several docs and crap reports) (years and in court) (original Dr. Grace Ziem but 2k a visit impossible to keep up on 300 a month! (but she gave a fantastic SSD report important for legal/medical diagnosis (22 page SSD report which Dr. Levine incorporated into her report).
When after years (bld fire, lost job et al) and I could just no longer pile more debt onto cc word was out amongst the various (CFIDS - Yuppie Flue in my day, Chemical Injury - MCS, and much more "groups" ) that this kind, compassionate women would assist with local (in Courts well known) SSD issues.
And she did - she took me in - providing care with no income and NO NADA reimbursement until my meager Food stamps Public assistance came through (several years later and Medicare pays crap and one year later!!!) - then SSD and meager Medicare (useless) came in.... ( I had a minor in City Government and assisted many with issues then I went through it myself - a nightmare!
Never doubt there are "angels" amongst us and she is one for many who went through a true nightmare (I ended up paralyzed, internal hemorrhaging, and multi organ near failure and was at an end stage - ie dying slowly (while I used other doctors who would do what I outlined (Dr. Majid Ali is excellent) (forget the "diagnosis" and names - if you understand cellular biology then you will realize they are just for medical codes so on) it was this wonderful woman who took me in at my court/medical ssd et al end stage where others had not one clue! (ie didn't care)
Now even as I am leaving this area and a bit worried about those 3 year ssd "reviews" she will allow me to have her as my primary Doc From East to West Coast (just as those with MCS live in tents, cars ie homeless correspond in this manner) she will to reassure me all is well (only 11 states have medical freedom acts and where I am going they want to have this type of patient have electro shock therapy!)
So say what you will - if you truly are in the gutter of this situation - she was an amazing angel to me and many many countless others.
She did anything I asked for - a TRUE angel.
I went to Dr. Charis Meng at the Hospital for Special Surgery. I loved her because she spent a lot of time with me, asked a lot of questions, listened to me and was very helpful.
Try this - go to acam.org (American College for Advancement in Medicine) and under "health resources" at the top of the page you can find a doctor in your area who practices integrative medicine - these are docs who tend to be knowledgable about CFS and FM and nutrition and so on - they combine regular medicine with holistic and alternative medicine, they know much more than regular docs. I'm seeing one now in Los Angeles and I like him very much and his office gave me this website for other practitioners like him.
I love docs that tell it like it is. Could be hard to hear when you are in the early years of illness though. I'm not sure how i would have reacted as a young impoverished woman who could no longer work that i would still be sick 18 years later.
But, now, I am good. I made it through, I'm still sick and my life really got much better when I finally after 15 years or so accepted that I might not ever get any better. I regret all the money and effort I wasted on trying so earnestly to get well. Ah, well, you live and learn right?
Different docs work for different people. My friend saw Levine when she was first ill and Levine told her she should get on disability. My friend was upset (understandably since she was very young) and didn't go on disability. Cut to 10 years later and she regretted not following Levine's advice.
I had my doc do some lyme and other vector borne illness tests recently and when he saw the lab I was going to use and told me that lab was crap. Then he said, sorry to be blunt. I said: I like it, my family's from New Jersey! We love people who tell it like it is! hehe!
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