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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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URGENT: Need An ME Specialist ASAP

Discussion in 'General ME/CFS Discussion' started by candie, Jan 12, 2014.

  1. candie

    candie

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    Lancaster, Pa
    I am typing this long thread(sorry so long to read) for my son who is in search of an ME Specialist, as am I. He is under a family doctors care now who visits every week. He is also with loving family in his own home but feels he is going downhill fast and wanted to reach out to all of you to see if any of you know a Doctor willing to take on severe ME. Thank you for reading,,, this is what Billy wrote to me and I am quoting now...
    I am at the end of the disease itself, not just broken down and bed bound from the state of P.E.M., but i am in the third and final stage of the disease, the one that owns you. I need a Doctor ASAP and I need you folks with your great honesty and learned wisdom to call them for me, or let them read my story here online, Doctors that have helped your loved ones with severe ME, Doctors who have helped you. I will meet with them at their office, home, clinic, I am desperate. You can email me with information to cjt19@comcast.net and you can talk over phone to my mother if you wish after email. I feel like I am losing my life. I can feel myself losing my brain(long and short term memory) and often at a loss for words, but i always try my best. I need you so much folks to pull through for me if possible, to help with getting me a Doctor, and letting him read my story on the forum today. Hopefully, he/she will read and see how bad I am because I am not the normal case. Remember, 3 stages and I am in the last stage and it is crucial in understanding my current situation. Where I am at, and whats going on with me, is more rare compared to how some of you are feeling and how your brain is working. In stage 2, my brain was in fog, but nothing compared to how it feels now, in stage 3. If you fell very ill, (classic Bob Miller or Corrine) and there is the need to build your immune system up, or maybe your gut from bacterial infections etc, taking various drugs, herbs, synthetics and organics, etc, once you do that and you "clear your system" no one ever truly bounces back to 100%, back to a full bill of health. Only exception is possibly a gradual onset/my stage 1 (that I have for you if/when needed), when if i would have caught it early enough, or had simply "done nothing and rested", and prayed to God, i could have been 100 % cleared, but still very rare. There is a point to all of this: Bob Miller, and other well known patients, could have rebound to a "6" (last I heard-2011-2012) or Mike Dessin (yes, he has had same disease and a gentleman, he has visited me) or the girl on Norweigian News or the writer/author that Cort Johnson wrote about, both "9's" from a level of 3 with Rituxamab, autoimmune drugs, but none rebounded to 100% without P,E.M. backlash. Brains need to be healed after the pushing limits. With me, stage 3 started working a new way, instead of the "crash" and P.E.M. sickness for a couple of days, or week, or even months, the P.E.M. stopped coming, and by seeing this in retrospect, philosophiing and understanding, I realized I took on a state of degradation/ chipping away at my brain itself. So even if immune system would start to regulate and the P.E.M. would stop and the feeling of downright horrendous sickness ended, the presence of the disease itself showed, the Disease of the brain! I know, from my last 4 Doctors in this last year that my case is not in medical textbooks. My dentist friend agrees, throbbing/stabbing kidney pain not a symptom in all his studying in college and grad school, he also thought I would play soccer again and listen to music, but my lemon of a brain will not work that way anymore. I wish it did! I wish I knew that my soul and my health would return to normal again, that would be like fireflies on a warm, breezy summer night, an extravagant beauty!. Stage 3, the brain, no more P.E.M., just fatigue, relentless. Even on tylonol pm, ambien and lunesta, none of them worked, still awoke unrefreshed, had trouble falling asleep and could only sleep 4 hours, then night sweats and the sleep aid ingredient (DHC?) made my brain feel(not painful) but a weird kind of "tug of war). In the last 8 months, after volumes of blood, multiple herbs and vitamins I realize none of these will work because I need a refound, rebirthed brain.
    golden likes this.
  2. SOC

    SOC Moderator and Senior Member

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    It would be easier to make some ME specialist suggestions if we had a clue where in the world you are. For example, what country or state.
  3. candie

    candie

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    Lancaster, Pa
    lancaster, pa sorry
  4. golden

    golden Senior Member

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    Clear Light
    I was just about to type Lancaster pa, Candie ... it says in your thing .

    Keep on keeping on until you get the answers you need ....
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I would also be easier if you broke this paragraph up, most people have trouble reading such a large block of letters!

    GG

    PS Just go back and edit it into smaller pieces.
    golden likes this.
  6. SOC

    SOC Moderator and Senior Member

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    You might start by researching a couple of the NYC docs - Dr Enlander and Dr Levine (I think) while you wait for others in your area to chime in with suggestions.
    justy likes this.
  7. leela

    leela Slow But Hopeful

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    justy and SOC like this.
  8. candie

    candie

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    Lancaster, Pa
  9. xchocoholic

    xchocoholic Senior Member

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    You may want to Google integrative or functional doctors in your area. From what I've seen these doctors take on the more complicated cases. They look for root causes and treat symptoms as needed.

    Some take insurance and some don't so be sure to look for that too.

    Fwiw, I'm not sure how you can tell you have PEM in a severe state. Post exertional malaise is malaise brought on by exertion. Feeling crappy 24/7 isn't the same thing.

    Imho, before seeing a new doctor, I'd look at the toxins in your environment, diet and living quarters. Many find eliminating food intolerances brings some relief from symptoms but doesn't always translate into remission. Any improvement is welcome tho.

    good luck. x
    rosie26, leela and maryb like this.

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