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Rate Dr. Susan M. Levine
Dr. Susan M. Levine's Ratings
I started seeing Dr. Levine 20 years ago. She has helped me greatly over the years. I moved out of town approx. 10 years ago and came back to her as soon as I returned to the area. She will work WITH you, not just ON you, most doctors do not do that. If you ask her a question, she will answer that question -- not "respond" with something unrelated (which happens far too often in other doctor's offices). Having developed CFS/CFIDS in the mid-80s, I went many years undiagnosed, then diagnosed but offered no treatment. Then I found Dr. Levine and things got better -- slowly, arduously, but better. She knows this illness and if a treatment isn't working for you, she will change it up. I've seen too many doctors who's attitude is a cookie cutter treatment protocol of "this is how we treat this" whether you are responding, or not. That's not Dr. Levine, she will work with you until something is working for YOU. You may have to try a few different meds and doses to find the best combination for you (we all respond differently to things), but if you work with her you stand a very good chance of getting there.
I wish I had the same experience as everyone else on here. I desperately wanted that to be the case - as you all know when you have CFS you need some hand holding. And I'm barely needy. I do TONS of research on my own, see a Naturopathic Doctor, eat all the proper diets, etc but all Dr. Levine was really able to supply me was a diagnosis and great blood work. After that it felt like I was 100% on my own. Hey, the diagnosis and blood work were super helpful but now what? I feel like I've been hung up to dry and that because I'm not 100% bedridden and home bound that I'm not worth paying attention to - even when I'm reaching out on a very consistent basis. I couldn't get a treatment plan out of her to save my life.
I will never be able to give Dr. Levine all the praise she deserves. 20 years ago my daughter came down with CFS. Even though she was attending a top southern university with its own medical school, the doctors there didn't have a clue. By the time I knew something was wrong, her long-term memory was gone, she couldn't keep a conversation going, she cried constantly (hormones), and could barely walk. Luckily for me, and completely by fluke, my sister had mentioned her symptoms to our dentist who knew of Dr. Levine through another dental patient. The man was a doctor himself and had done a complete study of who were CFS experts. Only 3 on the east coast...and Dr. Levine was a stone's throw from my house. Miraculously within less than a year my daughter was back in school and fully functioning! Over the years my daughter saw her periodically, but 20 years later she's able to hold down a very responsible job and have a full life. I credit Dr. Levine's persistence, her brilliant mind that "free-floats", (unlike so many doctors who get stuck in a spot and can't tie pieces of knowledge together to solve a problem), her ever-present quest for learning more, her no nonsense deep interest in helping her patients, and her hands-on approach for breathing life back into my daughter. In my book Dr. Levine is way beyond her peers...and you're really lucky if she's your doctor.
Again to the person who had a bad experience with Dr. Levine - I also had a positive lyme test but only from Igenex. The bands that were positive were also bands that will appear positive if you have very high EBV titers. I had very high EBV titers and since my other 6 Lyme tests were negative, we had to make the collective decision that this was not (in fact) Lyme. Chronic Lyme is a gray area, perplexing the best of doctors and patients alike. Long term antibiotics kill the gut making the immune system weaker - a big 'no no' in CFS. Dr. Levine has always looked at all the angles, made all the suggestions and worked with me on what my needs are for where I am in my illness. I am grateful I live so close to her - as I don't know how so many people survive this debilitating illness without a doctor who truly understands. Dr. Levine truly understand. She is committed to conferences, the latest trials, drugs, tests, etc. She is leaps ahead of most doctors regarding CFS. Again, beyond grateful for her.
For the person who disparaged Dr Levine with the comments posted on August 11th 2014. The illness you got from a tick bite is Lyme Disease & is known to be one of the causes for CFS. It is not her fault that CFS is still considered a vague disease that is the fault of the CDC. What she told you is right. However you should have asked for more testing to determine the infectious cause of the CFS. I haven't seen Dr. Levine since 2007 but I can tell you when I had my last EBV infection that causes my CFS & caused me to have Encephalitis she literally saved my life. After having another outbreak for the last year & working with the famous immunologist that discovered AID's I find myself getting ready to call Dr. Levine tomorrow and despite having moved from NYC to LA and having to come to my families home in Seattle because I am so sick and bedridden; getting no help from this other top immunologist, I am ready to power through & fly to NYC just to see her because I've seen a million Drs. & she is the only one who really gets it. If you pull up a search on her & EBV like I did last night you'd see a post of two different people talking about her and saying that Drs. now are just discover info stuff that she knew 20 years ago. It's a shame that you've been sick for so long and I feel for you, but as patients we also have a certain responsibility to help advocate for our own health & I wouldn't say that she misdiagnosed you because you probably did have CFS, you just hadn't gotten to the root of the cause which can be a very complicated process. I hope you are feeling better & also want to make sure people know that Dr. Levine is an amazing Dr and if anyone has symptoms of CFS you should see her but also as with any doctor try to get to the root of the cause of your CFS by researching some of the infectious causes of the disease.
This doctor, who should have her license revoked, misdiagnosed me and destroyed five years of my life. Fpnow, five years later I found a doctor who figured out that the vague "CFS" was not, in fact, what I had. I had an illness you get from a tick bite. She tested me for it. I was positive. She ignored it. She's careless. She isn't smart. She is so disorganized that you're lucky if she remembers your name. Don't see her. Don't let her ruin five years of your life.
I saw Dr. Levine on the recommendation of my social security disability attorney. I had been diagnosed with Chronic Fatigue based on a sleep study and symptoms but it hadn't shown on lab work. Dr. Levine put it all together in a coherent way. She ran more tests with lab results supporting the diagnosis and some other findings to explain my many health problems. She was out of network with my insurance so I will pay $350.00 for the office visit (typical for an expert consult in NYC). Blood work is covered by insurance. I later found out I would have to pay $500 for her to write a report putting it all together for my lawyer. Ouch. Being disabled I don't have the money but will borrow it for her report because she is the only doctor who got the diagnosis right and understands what having CFS means for someone unable to work. I liked her. She is smart, strong, direct and understanding. She IS a real expert in CFS-unlike others I have seen.
This was our first visit to Dr. Levine. We drove from VA. to see her. Unfortunately is the only specialist accepting insurance upfront. What has happened to the other specialist, have they become money-oriented and not patient-oriented. Has a extremely small operation and staff. Hopefully she will just as good as my wife's first specialist, Dr. Paul Chaney.
I consistently find Dr. Levine very easy to communicate with. She listens and gives feedback, yet as informed and intelligent as she is in the field of immunology,(CFS in particular)she is never dogmatic. Knowing that Dr. Levine is "on my side" as I navigate this mulitsystemic and debilitating illness really does give me a sense of security. Thank you!
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