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Is anyone a patient of Dr. Derek Enlander or Dr. Susan Levine?

andreamarie

Senior Member
Messages
195
I'm thinking of N.Y.City. I'm pretty sure Dr. Enlander takes my insurance, am not sure of Dr. Levine. Is anyone a patient of either? Also I heard Dr. Levine uses low dose naltrexone.

Had a vicious crash today and think I've exhausted all the docs in MA. Have family in Brooklyn, although I don't know how helpful that will be. At am all time low energy wise and would probably have to stay in N.Y.
 
K

_Kim_

Guest
I see Dr. Levine. She does take some insurance (not mine), but her fees are very reasonable. She'll prescribe whatever she or you thinks will work - LDN, IMIG, Artesunate, Antivirals, Antiobiotics...

Enlander seems to have a more generic protocol for his patients. I posted the whole lecture about his treatment ideas that he gave at the NJCFSA conference in 2009.
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
Hi Andreamarie,

From your post it appears you live in MA. Where abouts? What doctors have you seen?

I live north of Boston on the NH border and I'm looking for a good doctor. I'm totally frustrated. I've been diagnosed with FM and CFS yet I have worked full time (15 years since dx) . ...in a hospital! I do diagnostic testing in a clinical laboratory and work with nurses and docs all the time. Don't get me started regarding healthcare....

Anyways... any information you can share is greatly appreciated!

Thanks in advance! ~ Julie
 

citybug

Senior Member
Messages
538
Location
NY
I've seen them both. They are both reasonable and take CFS seriously. I don't think they have any magic bullets if you are a tough case. Enlander does have supplement protocol you can probably order by mail once you are set up. I wish I was still Mass. where you can get holistic tests that are not allowed in NY state. I hope Dr. Mikovits gives some tips in her talk Friday.
 

minimus

Senior Member
Messages
140
Location
New York, NY
I live in Manhattan and have been to see both Enlander and Levine. I did not like Enlander or find that his protocol at the time I saw him (2004) was at all helpful. The first visit was cursory, involved basic blood tests to "rule out cancer" and a physical exam. The follow-up visit was short. His nursing staff then set me up on his protocol, which involved some supplements and injections that he had developed himself. I got no benefit out of the protocol. Unless he has really changed, I certainly wouldn't travel from Massachusetts to see him.

I like Susan Levine a lot more on a personal level and would recommend her over Enlander. However, there are two things to be aware of. First, she has been around CFIDS for a long time and therefore comes across as slightly defeatist. (Enlander has been around CFIDS for a long time as well but still seems to have a bit of a God complex.) Levine is not going to claim that she has a protocol that will definitely make you better, so you won't leave her office full of hope. Second, office visits with her are generally fairly short. She will run some blood work on the initial visit and come up with some treatment ideas after that, usually prescription antivirals and a few recommendations for supplements to try. I think she would be easier to work with if you are an out of state patient simply because she doesn't try to sell you her own supplements or injectables.

One final issue to be aware of is that New York places fairly strict regulations on MDs and as a result they tend to be pretty cautious/ineffectual in treating CFIDS. I have been Paul Cheney's patient since 2001. He went on medical leave in 2003 to have a heart transplant. When I went to a few doctors in New York (including Enlander, Levine, and a "holistic" MD), they all said they would not follow Cheney's protocol even if I found it to be very effective. (I was on the brink of going on disability before I saw Cheney but after starting his protocol, I stabilized and slowly improved and have been able to keep working.) The New York doctors I saw simply did not want to write prescriptions for Klonopin, doxepin, high-dose injectable B12 or injectable magnesium. The "holistic" MD said he would lose his license to practice in New York if he wrote those prescriptions.

That is why I have found Cheney to be so helpful. In the end, to stay on his protocol while he was on medical leave, I ended up flying to Fort Worth to see Dr. Larry Sharp. Sharp's wife and son were both patients of Cheney, Sharp was a true believer in Cheney's protocol, and basically offered to fill Cheney's shoes for patients unable to find other doctors who would follow Cheney's protocol. The one nice thing about Sharp was that he was a lot less expensive than Cheney and the visit was covered by my insurance. So, if you have the financial resources and ability to fly, I would recommend Larry Sharp. He is also a warm and sympathetic person and definitely does not rush office visits.