Ratings for Dr. Susan M. Levine
I see she misdiagnosed someone else's Lyme disease. In my case she ran the tests backward, doing the least sensitive last. My test was positive but for some reason she told me it wasn't. Four doctors and a course of antibiotics later I am at 75% of my previous capacity. I'm going back to grad school and I'm definitely going to be able to work again. Stick with Dr. Levine if you want to stay disabled. Sure she will write you a disability letter whenever you want, but wouldn't you rather not be disabled? Lyme disease is a leading cause of fibromyalgia and CFS. New York has a ton of infected ticks. Dr. Levine does not know how to treat it and she does not know how to test for it. There are plenty of decent integrative and functional medicine doctors. Find one of them and skip this woman. She seems nice and and empathic but she is invested in keeping you sick. I found her negative attitude unappealing. Keep searching until you find what makes you better.
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.
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