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diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

Discussion in 'ME/CFS Doctors' started by Goimurph, Jan 12, 2014.

  1. Goimurph

    Goimurph

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    I have been through the ringer. my health has been spiraling downward for the past 3 years. There was a period of a few months when things started to even out and even improve slightly. I actually went to Target. Now since this summer, I'm on a steady decline. Been through all the tests, tons of specialists at BIDMC in boston. Finally, I am diagnosed with CFS by exclusion. Ok,now what?

    How do I know this is real? I fit every symptom. But I have on a lot of everything else, that turned out to be negative.

    All my doctor said was try to get in with Felsenstein at MGH or go to Mayo Clinic. other than that, get a massage or acupuncture?? I'm still waiting on Felsenstein to review my records. From what I have read here, it can take a while for an appointment. I fear I don't have a while. My "good" days are being devoured by my bad ones. Today I can speak a little stronger than yesterday, but I can't move off the couch without assistance.

    I need someone to help me understand what and why this has happened to me. I need someone to help me stop this from getting any worse, before I loose anymore of myself. I am so scared that there is a point of no return and that I am knocking on its door.

    should I seek another ID dr while waiting for Felsenstein? I have looked at the dr. databases, and researched the doctors there. They seem to get trashed in the patient reviews online. I am tired of seeing drs that make me feel like I am wasting their time. I have lost faith in the medical profession b/c they make me feel worthless. That I should just stay home and suffer in silence.

    Can someone direct me?
     
    ggingues likes this.
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    First I would stop freaking and start googling for integrative doctors or naturopaths. Put in your city and cfs or ME or methylation. Anything. The more I feel in control the less freaked I get.

    What I can tell you is don't go to the Mayo Clinic. They are sadly from what people say, clueless about ME/ Cfs.

    Check out co-cure good doc list and there is a thread here with doctors.

    Infectious disease docs may or may not be the way to go depending on how knowledgeable they are

    Sorry if this isn't coherent. Bad day. No one can tell you why. Just move forward. At least you have a dx no matter
    How much it sucks.
     
    merylg, heapsreal and xchocoholic like this.
  3. SOC

    SOC Senior Member

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    I suggest you look into seeing one of the top ME/CFS specialists, even if you have to travel. All the others will waste years of your life.

    There is thinking that aggressive treatment within the first 5 years is the best chance for a large improvement or remission. If I had it to do over, I wouldn't waste that opportunity by not seeing the top docs.

    ETA: My opinion is that Mayo would be a very bad choice for ME treatment.

    Read here at PR about Klimas and her associates, Kogelnik, Enlander, Chia, Petersen ... I'm sure others here can make a few more suggestions ... And try to get in with one who seems to suit you.
     
    Last edited: Jan 12, 2014
    justy likes this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I saw Dr. Felsenstein, 33 vials of blood and not much to offer me. FYI

    GG
     
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    SOC is right but many of these people have long waiting lists.

    Get on a list and if you cant get in to see someone soon t hen find someone local who can get you started.

    Gail Kansky is in Boston. Maybe she knows someone.
     
  6. Hip

    Hip Senior Member

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    There are a lot of supplements and drugs that you can take that may help arrest the downward spiral, stabilize your condition, and even make improvements. You can find these supplements detailed in depth on this forum, and the following lists of ME/CFS supplements are useful:

    ME/CFS SUPPLEMENTS AND DRUGS

    ME/CFS medication medicine
    Chronic Fatigue / Fibromyalgia Syndrome - Symptoms, Diagnosis, Treatment and Information
    Lassesen.com
    Treatment for Chronic Fatigue Syndrome
    Anecdotal evidence of different CFS/ME treatments
    Chronic Fatigue Syndrome
    ME Treatments
    Pharmacotherapy for CFS


    In terms of finding a proper ME/CFS, doctor, see the following list of world-class doctor/researchers of ME/CFS:

    ME/CFS DOCTORS AND CLINICS - USA

    Dr John Chia (Torrance, California) Article on Dr Chia

    Dr Chia is an infectious disease specialist with special interest in enteroviruses (which include coxsackievirus B and echoviruses), and is the leading researcher in enterovirus-associated ME/CFS. He uses the immunomodulator oxymatrine to treat ME/CFS patients.

    Dr A Martin Lerner (Oakland, Michigan) Article on Dr Lerner
    Dr Lerner is a leading researcher in ME/CFS associated with herpesvirus and uses antivirals (Valtrex and Valcyte) to treat these infections. He also has particular interest in the cardiac problems and cardiac insufficiency often found in ME/CFS.

    Dr Jose Montoya (Stanford University, California) Article of Dr Montoya
    Dr Montoya is a leading researcher in ME/CFS associated with herpesvirus such as HHV-6, EBV, cytomegalovirus, and uses the powerful antiviral drug Valcyte to treat these herpesviruses where appropriate.

    Dr Daniel Peterson (Sierra Internal Medicine, Nevada) Article on Dr Peterson
    Dr Peterson is a very experienced ME/CFS doctor and researcher, and has a special interest in natural killer cell functioning in ME/CFS. Dr. Peterson uses the antiviral Vistide (cidofovir) in patients with HHV6 and cytomegalovirus infections.

    Dr Paul Cheney (Asheville, North Carolina) Article on Dr Cheney
    Dr Cheney is an innovative doctor and researcher using leading edge medicine to treat ME/CFS.

    Dr Nancy Klimas (Miami, Florida) Article on Dr Klimas
    Dr Klimas is a ME/CFS doctor and researcher who runs a ME/CFS clinic. She has significant experience in using immune modulators for treating ME/CFS.

    Dr Charles W. Lapp (Charlotte, North Carolina) Article on Dr Lapp
    Dr Lapp runs clinical trials for drugs for ME/CFS and fibromyalgia, and has been using the immunomodulator drug Ampligen for ME/CFS.

    Dr Derek Enlander (New York)
    Dr Derek Enlander uses immune modulators for treating ME/CFS, and the antiviral drug Valcyte.

    Dr Garth Nicolson (Huntington Beach, California)
    Dr Nicolson works with ME/CFS, autoimmune diseases, Gulf War illness, and the infectious causes of autism and neurodegenerative diseases.

    Dr Daniel Dantini (Ormond Beach, Florida) Article on Dr Dantini
    Dr Dantini uses the antiviral drugs Valtrex (valacyclovir) and Famvir (famciclovir) for herpesviruses in his treatment of ME/CFS where appropriate.

    Dr Andreas M. Kogelnik (Mountain View, California)
    Dr Andreas M. Kogelnik is an infectious disease doctor, and an ME/CFS specialist and researcher.


    ME/CFS DOCTORS AND CLINICS - UK / EUROPE

    Dr Sarah Myhill (Powys, Wales, UK)

    Dr Myhill is GP with significant experience of CFS, and has a website from which various lab tests can be ordered and interpreted by Dr Myhill.

    Breakspear Medical Group (Hertfordshire, UK)
    Breakspear focuses on allergy and environmental illness. For ME/CFS treatment they use antivirals, gammaglobulins for parvovirus, and test and treat rickettsial and bacterial co-infections.

    Dr Kenny De Meirleir / Red Labs (Belgium)
    Dr Kenny De Meirleir is a leading ME/CFS doctor and researcher who runs a ME/CFS clinic in Brussels. Dr De Meirleir has a particular interest in the intestinal dysfunction and intestinal dysbiosis of ME/CFS.
     
    Last edited: Jan 13, 2014
    alex3619, merylg, taniaaust1 and 2 others like this.
  7. Goimurph

    Goimurph

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    Thanks for the reality check. I feel like my world is spinning out of control. I will take control of this though. Thank you. I did look into the Mayo, and from everything I have heard, I was very suspicious. I don't need another doctor to make me feel like I'm depressed or psychosomatic half a country away.
     
    xchocoholic likes this.
  8. Goimurph

    Goimurph

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    I had looked into Enlander I think that I will give his office a call. I know that all of these appointments will take time. I just need to find someone local to start me off on the the right path while waiting for more direction.
     
    justy and ukxmrv like this.
  9. SOC

    SOC Senior Member

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    Virtually no local docs can start you off on the right path. Most know next to nothing about the illness and what they do "know" is very wrong. The most common belief is that me/CFS is a psychiatric disorder. The next most common is that there is no treatment except antidepressants.
     
    taniaaust1 and justy like this.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Like you say "virtually no local docs can start you off on the right path." But I gave her my Drs info, he's not a big name, but he has helped me a lot! Kept me working for years that I doubt I otherwise could have made it through! The problem with my Dr is that he takes very little for insurance, he took mine, because I upgraded mine at work, once I realized that I was going to be dealing with issues for years! And I had started off with an HMO, which was very frustrating, because by the time I got into the Drs office, my referral had expired, just didn't need that to deal with on top of everything else!

    My Dr has "parkinsons" shakes brought on by mold exposure, so he knows how to think outside the box!

    GG
     
    taniaaust1 and SOC like this.
  11. JT1024

    JT1024 Senior Member

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    #9 SINCE YOU'RE AT THE BEGINNING OF YOUR QUEST, PERHAPS YOU SHOULD APPLY FOR FMLA IF YOU ARE WORKING. I HAVE BEEN WORKING BUT HAVE DECLINED SUBSTANTIALLY. LIKE YOU, I NEVER KNOW IF I WILL WAKE UP IN THE MORNING OR COLLAPSE AT ANY TIME. BEING PREPARED WITH SHORT/LONG TERM DISABILITY AND FLMA DOCUMENTATION IS EXTREMELY IMPORTANT. I'VE NOT BEEN GOOD AT TAKING CARE OF MYSELF.

    GOOD LUCK WITH HOW YOU PROCEED. PERSONALLY, IF I COULD AFFORD IT (AND I MAY STILL MOVE FORWARD), I WOULD CONSIDER DR. KATHERINE LANTSMAN. SHE HAS THE AVAILABILITY FOR FASTER APPOINTMENTS BUT INSURANCE MAY NOT COVER IT.

    WHO KNOWS.. WE BOTH MAY BE IN AN EMERGENCY ROOM IF WE DON'T TAKE CARE OF OURSELVES NOW!
     
  12. xchocoholic

    xchocoholic Senior Member

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    I second going to see an integrative doctor.

    Also tho the first thing they're going to tell you is to look at your environment, diet and living space, for toxins. Many, if not most now, are recommending a whole foods or paleo type diet MINUS whatever your intolerances are. For instance, I don't eat much poultry because it makes me sleepy.

    You can Google common food intolerances for a complete list.

    Dr Wahls has some great info on this but other functional doctors do too. I just found her info easy to understand.

    tc .. x

    ps. Also agree with relaxing about this especially when it comes to dietary changes. Go slow but steady and stay within your comfort zone. No need to add additional stress to your body.
     
  13. Goimurph

    Goimurph

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    Thank you all so much. It's nice not to feel so alone. JT, I can't tell you how much those caps help. I am starting to recover from a really bad few weeks. I had another endoscopy on Tues. I've been incapacitated since then. Yesterday I could speak more. Today I can walk better. Still tied to the couch. Starting to understand that certain medications take me from bad, to rock bottom. The last time it was this bad was when the neurologist tried me on keppra for possible seizures. This time I think it came from the sedative. I think.

    Xchocoholic, my diet has been rock solid. 2 yrs ago I was dx with celiac disease. I went 100% gf...no gluten allowed in my house...I was very sensitive to it. then they took me off ALL grains except rice to see if that helped. No processed foods, 100% fresh fruits/veg etc. then they took me off rice...didn't make a difference. They figured it wasn't the food...except the gluten. Everytime they took something out, I seemed to get worse. 2 yrs ago I reacted to almost every food I ate.

    I am going to start making appointments today. I like the idea of the specialists. I will go to NY. I know that realisticly it will take a long time and I need to help myself now. So I am going to start locally as well. Thank you for all the names. GG's dr. is close to me, and has excellent reviews but doesn't take my insurance.

    today is a bit brighter. thank you
     
    merylg, xchocoholic and SOC like this.
  14. Hip

    Hip Senior Member

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    @Goimurph
    If your gut is a major problem area (mine certainly is), then consider taking some probiotics and prebiotics. Some info on prebiotics here. These can make a big difference to overall health, as I discovered myself.
     
  15. xchocoholic

    xchocoholic Senior Member

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    Interesting. I was reacting to all foods when I was finally told about the elimination diet. My weight was in the 106? range. Down from the 120? range.

    It took me about 6 months to he able to eat without feeling like I'd eaten glass.

    I wound up on the paleo low oxalate diet after 2-3 years. Low oxalate due to kidney stones.


    I just started experimenting with eating more gf processed foods and can tell I don't react as bad as I did at first but they're still causing insomnia myoclonus and 1-2 spots that are probably DH.

    It's definitely a long haul for some celiacs to recover. I wasn't given any guidance from my doctors at the time o ther than the gf diet. My integrative doctor helped tremendously.

    Everything else I learned was from Googling ....

    Hopefully you've been tested for nutritional deficiencies, glucose problems and Hashimoto's. There's a long list of possible auto immune diseases associated with celiac disease tho.

    good luck. x
     
  16. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @Hip FYI as far as I know Garth Nicolson doesn't see patients, unless he's changed that.
     
  17. Goimurph

    Goimurph

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    what is the general consensus between Klimas and Enlander?
     
  18. SOC

    SOC Senior Member

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    I don't believe Klimas is taking new patients at this time. I see her associate Dr Rey, who is excellent.
     
  19. Goimurph

    Goimurph

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    I made some calls today. Left a lot of messages all over the state of MA. But more important I have an appointment with Dr. Enlander on Jan 28th
     
    merylg, taniaaust1, MeSci and 2 others like this.
  20. tinek

    tinek

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    Hi,
    Good luck with Enlander, I was there last year, unfortunately it did not work form me..
    Please go prepared, check their website and know what they offer, he was very brief with me and it felt like he is giving a standard protocol to anybody who qualifies. They did a lot of testing, most of which I already had before, did not do some which I thought were important, ie IGG food sensitivities, they did the IGE though. If you have insurance check off they cover his visits, they paid mor mine.

    The most important thing you can do right now is to get educated and keep trying things while listening to your body, it will let you know if you are going the right direction.

    I did the most improvement since hitting bottom Last year and going on paleo diet since, if you have any digestive symptoms please check the thepaleomom.com blog or the Practical Paleo book. It helped me a lot, still way to go...
     

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