A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Drs In NY/NJ

Discussion in 'ME/CFS Doctors' started by Pink, Jan 31, 2018.

  1. Pink

    Pink Senior Member

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    Hi all, I am pretty desperate for relief from my heavy weakness and exhaustion.
    Till recently, I was able to do a bit of errands, cook dinner etc very slowly but I could do it.
    Now, every single bit of activity leaves me sick to my stomach, heart racing and dizzy. I also get pain and stiffness in my neck, legs and arms, skin burning, shortness of breath, and bad headaches.
    Actually, I have those symptoms lying or sitting in bed too.
    (i also have eosonophilic esophagitis and gastropareisis that i'm treating w/ a GI dr)

    I've been to Dr Mitnick- rheumatologist at NYU (twice), he suggested it might be fibromyalgia; put me on cymbalta which made me horribly sick.
    I went to Dr Enlander- immunologist at Mt Sinai which was such a nightmare, he gave me a shot of hepapressin which made my arm swell.
    I went to a lyme dr in staten island (can't recall the name) who said I don't have lymes or any similar sickness.
    Lastly, I went to a functional dr, Dr. Zacharias who said it's all in my gut, I have vitamin deficiencies & inflammation. He doesn't know where the inflammation is coming from.
    He said I need to take a medical food and vitamins, & stop my GI meds. The medical food made me vomit for hours, and i'm not ready to stop my GI meds.
    I tried various vitamins, probiotics to no effect. I took LDN which made me crazy anxious & aggressive.

    Other than being somewhat vitamin deficient and the inflammation, my latest blood tests showed a bit of low blood volume, and everything else is normal.

    Please, if anyone has a good dr in the NY/NJ area, who isn't crazy expensive, please tell me.
    I have a husband who is trying to recover from a serious illness, and 6 small kids at home who need a functional mom. I'm falling apart physically and it is taking a huge mental toll too.

    Thank you all
     
  2. Diwi9

    Diwi9 Senior Member

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  3. Pink

    Pink Senior Member

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    Thank you , diwi. I see the map, but I have read conflicting things about many of these Drs online, so I hoped for more specific feedback.
    my own experience w Dr enlander was so negative, but many places list him as an expert. So it's hard to really know.
     
  4. Diwi9

    Diwi9 Senior Member

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    I've only seen specialists in CA, so I don't have personal experience in your region. I have read positive comments about Dr. Susan Levine. Some specialists have long wait-lists. There is some discussion of different specialists on that thread, including people who are not on the map, like Lisa Nagy. Look at doctors you might be interested in and use the search function to find threads that discuss them. Sometimes it can be taxing to mine PR for information, but it has been hugely helpful in my own investigations.
     
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  5. Pink

    Pink Senior Member

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    Would you be comfortable sharing whom you saw in California? I'm thinking I might need to travel for proper care.
     
  6. Diwi9

    Diwi9 Senior Member

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    I'm a patient of Dr. Chheda (Center for Complex Diseases - she is Dr. Kaufman's medical partner). I recently saw Dr. Chia too. Both are specialists in infectious disease.

    If you are looking for comprehensive investigation, the Center for Complex Diseases is very good. They focus a lot on Mast Cell Disorders and possible Lyme and co. They have been progressive with treatments of autoimmunity related to ME/CFS as well as antiviral treatments. Because there is so much testing and they take interventions slowly, it is expensive.

    Dr. Chia specializes in enterovirus. Many people seek him out if they suspect an infection. I did and requested a requisition for testing with ARUP labs and was positive for two strains of enterovirus (CV B4 & EchoV 30). His treatments mostly focus on antivirals. He is less expensive, but more narrowly focussed.

    I am happy with the treatment I have received with both doctors. It took me months to get in to see both. Another option is the Stanford ME/CFS clinic, their waitlist is much longer than the others.

    Some people stick closer to home and are able to get good support locally if they find a compassionate doctor, this seems to often be with functional medicine doctors who are willing to try supportive treatments.
     
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  7. Silencio

    Silencio Senior Member

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    Perhaps you could go up to Boston to Oaklander / Systrom? They are focused on pots and OI, using IVIG and mestinon. However, Levine could also get you on these treatments. I have seen her. She knows the disease, but I found the dissaray in her office and her communication off putting (she told me conflicting things). However, I do believe she works hard for patients and is open to trying new things.
     
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  8. Pink

    Pink Senior Member

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    Thank u both for the suggestions!
    I guess my first question should be which theory of treatment to use, the pots the infection the gut etc?
    How did you choose? So far the various Drs have each insisted this is what it is, even without anything in the bloodwork necessarily backing it up.

    I would find a disorganized office very difficult and stressful.
     
  9. Silencio

    Silencio Senior Member

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    Well,, that is the question isn’t it! I haven’t seen any ME specialists in several years bc travel is too difficult and I am sceptical any of them can really help. Instead I worked w my GP and now with a rheumatologist to go down a list of drugs to try.
    You are right.. each doctor seems to have their theories. So people tend to pick based on what they want to try or explore next. I personally have just decided to wait until there is more information. There are lots of patients who swear by the doctors that Diwi mentioned. I decided to not go there bc I don’t have faith in some of the tests they use so I would t want to get them, and I know that tolerating some of the drugs they use would be hard going for me, and seem too risky given how little we really know. But, others are having success and find the risk worth it. It’s very personal.

    Dr. Levine’s office is not necessarily stressful.. it’s usually quiet in there. It’s just.. a bit of a mess! (I can say more on PM) She is very nice though. And she’s not expensive, and follows a lot of the theory that the teams in California are working from. So at least it’s in your area. Traveling to Palo Alto is a trek.
     
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  10. Pink

    Pink Senior Member

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    Thank u silencio, I don't know how to pm, but I would love to hear more about Dr Levine. Like I said, I went to enlander. His wife (a former school teacher with no medical training) spent a long time taking my history and talking to him privately. Plus I waited for hours. I think I saw him maybe 10 minutes.
    They lost paperwork, she criticised a lot of my medical care, mixed up medical information I gave her, etc.
    I was very annoyed, bec I did not spend all that money to see a school teacher!

    I tested negative for many of the viruses, so I'm not sure what to do.
    I wish there was 1 person, or 1 center that tried a few different methods, so I don't have to run from place to place.
     
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    Just click on the person's avatar and you'll see a pop-up. One of the choices is "Start a Conversation." That is a PM.
     
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  12. Pink

    Pink Senior Member

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    thank u sushi!
    So does anyone know if there is a center or dr that tried a few different methods, not just either viral or immune or gut microbiome?
     
  13. Sushi

    Sushi Moderation Resource Albuquerque

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    While many specialists have a favored approach, a number of them do test for and attempt to treat many issues. As far as I know, Dr. Levine is the only one who does this in your area--but I am not her patient so you might want to contact someone who is.
     
  14. Pink

    Pink Senior Member

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    I'm hesitant about Dr Levine bec of quite a lot of bad reviews that I've read.
    I am willing to invest the time and money to travel if there is someone better who has a multiple area approach.
     
  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Sadly, many of us have had to travel long distances to see doctors. You might want to "look West" and contact patients from some of the doctors there.
     
  16. Pink

    Pink Senior Member

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    How would I know who the patients are?
     
  17. Sushi

    Sushi Moderation Resource Albuquerque

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    If you do a search for the different doctors you can see which patients are posting about their treatment with that doctor.
     
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