August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Discussion in 'General Treatment' started by Birdy, May 20, 2011.

  1. Birdy

    Birdy

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    Rock Hill, SC
    Hi I'm new, recently stated my hell story non "introduce yourself, and listed my symptoms" on "symptoms" list. I've got a question.... That is, where do I go, who do I see for help when I've gone everywhere else w/no solution or help at all. I really do need some type of support to let me know I'm not alone. I need to see someone who understands me and doesn't take me for a loon. I'm tired, I'm isolated... I feel this is the only place I can come to where I can gain back some emotional strength.
     
  2. jstefl

    jstefl Senior Member

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    Brookfield, Wisconsin
    Birdy:

    I don't think that there is anyone here that hasn't asked this question.

    I have been to many doctors, none that had the slightest idea of what was wrong with me, or what to do to fix it. I didn't get any relief at all until I began to study the problem myself. There are only a handful of doctors in the entire world that even understand the illness. Your best hope is to find a doctor that will listen to you and work with you.

    Insurance is another problem. The few doctors that understand CFS probably can't get reimbursed enough by the insurance company to make it worthwhile to treat you. Insurance companies don't like to pay for "experimental" or unusual treatments or drugs.

    Maybe there is someone out there in your area that knows a good doctor they can recommend for you. I am still trying to find a good doctor in my area of the country.

    Depression is the answer that most doctors give when they don't have a clue, and don't want to spend any extra time with you. I went from doctor to doctor until I was fortunate to find one at the Mayo Clinic that was willing to work with me, and would listen to the ideas that I presented. It was a real battle all the way.

    There are a large number of very knowledgeable people on this site that can be very helpful to you, if you are willing and able to educate yourself. I think that this is your best place to learn the things you need to know. Read what you can and don't be afraid to ask questions.

    John
     
  3. Birdy

    Birdy

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    Rock Hill, SC
    John:
    I think it's great that you've found a doctor that listens to you... What are they doing for you? Supplements? diet?
     
  4. jen1177

    jen1177

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    Arizona
    Hi, Birdy,
    Welcome to PR. I'm new here, too.
    It sounds like you are looking for a support group? I think that's what you were getting at...? Or doctors? Not sure, but if you're looking for a support group you can check on the website MeetUp.com. You can search for groups in your local area and/or start one up yourself.
    Depending on how far you are from a big town/city you can aslo try Craigslist.com. In their community section you can post ads for support groups -- either asking if there is one or you can start one up.
    Good luck and believe me you are not alone.
     
  5. kat0465

    kat0465 Senior Member

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    Texas
    Hi birdy

    Welcome to the forum
    I think we have all felt the way you do, if you need support your at the right place. There's not only great people here, there's a wealth of knowledge on this board.

    I probably went to 2 dozen drs before I found one that knew about cfids, or even wanted to learn about it and help me.

    Even tho I have a doc that tries to help me, I still have to do lots of research on my own. What may work and what dosent. If I come across something, and talk to my dr about it, she usually let's me try it. If she thinks it's not harmful.


    We educate each other really. So if you could find a doc that's open to this disease, and will work with you. I think that's your best bet.:thumbsup:

    Hang in there, and dig, dig, dig!! We all know what your going thru

    Kat


     
  6. jstefl

    jstefl Senior Member

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    Brookfield, Wisconsin
    Birdy:

    The biggest help I got was from Valcyte, a dangerous and expensive drug. It is not for everyone, and probably should be a last resort.

    I recently began Richvank's methylation process, and am very excited about the results so far. You can read about it on this site. It is less expensive than almost any other treatment, and doesn't involve any dangerous drugs. Since you got better on your own before having a relapse, i think that this might work for you.

    If I had things to do over, and I knew then what I know now, it would be my first choice for treatment. I have been on the new protocol for just over a month, and I am really excited about the improvement thus far. I needed to start slowly, and still haven't worked my way up to the full dose, but I am having my best day in years today!

    John
     
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    Hello Birdy, I love your name for the forum! SO, I made this little tag for ya! Hope you like it.

    I am glad you are here and of course SORRY you have to be here. We will help all we can. I see an Integrative doctor and a doctor is in charge of my hormones, so maybe you can find one that understands CFS and supplements.

    I am supporting my body and staying as healthy as I can. Finding a good doctor that knows the blood tests to give to find what you need most to at least support your body is important. Sometimes finding the things we need helps a lot. B12 levels, vit D3 levels, seratonin, hormone levels, etc. Antioxidents like ALA have helped me. I take many supplements. I have improved a lot. I continue to do all I can until real answers are found. I do my best to eat well, sleep long hours and take my supplements. I hope you can find a doctor.

    Hope you will chat with us. We are on and off all day but in the eve. there are more there.


    [​IMG]
     
  8. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Hello fellow South Carolinian, I'm from Myrtle Beach. Not having any luck in my part of the state either! Even MUSC in Charleston is clueless. Hang in there and keep up with the forums, it does help ease the pain.
     
  9. *GG*

    *GG* Senior Member

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  10. Birdy

    Birdy

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    Rock Hill, SC
    I'm so leary about taking drugs... Valcyte... hummm I know cyte means cell in the medical world.... Val cold mean virus? How do you get it? Sorry I didn't write sooner I was out to CA for my 21 yr old niece's funeral.... Talk about being dragged out... So what sort of doctor said, yes you need to take thisr drug? Was it infectious diseases doctor or an internist? Another question if you don't mind me asking is: why is it dangerous? What are the side effects? Because if it's cancer i don't care, I'd rather take that risk... But if it's going to make me more nuttier than I am I dunno.... Tell me how it started to make you feel jstefl....paaalllllleeeezzzz.....
     
  11. Birdy

    Birdy

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    Rock Hill, SC
    Sallysblossoms!!!!! tx u so much for that, that is a really cute birdy picture.... I will take what you said into consideration for sure.....
     
  12. Sing

    Sing Senior Member

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    New England
    John, you expressed so well what I've experienced and feel too. It is good to hear you say this, as I get discouraged too by the uphill battle. I am in the process of switching doctors because I have moved--so having to try to educate and get this new doctor to work with me, instead of just taking the usual irrelevant or erroneous approaches. I need to just hang onto my "truth", as well as I can, and persist.

    It will be interesting to see some day if the change in treatment of people with ME/CFS comes about through grass roots patients efforts, bottom up, or if it comes from scientific research and doctors, top down, as it is supposed to. Maybe it will indeed come from our "bottom up" efforts, so don't give up.

    We work with the powers that we have--self care and truthful communication, respecting others too who don't know. I think my communication improves as I take into consideration those other people--doctors, friends and acquaintances--somehow conveying that I respect them and feel they are okay too, even when they don't know or understand or are even blocking my communication. Still I try.

    This is quite a bridging function, isn't it? Identifying and expressing one's own reality which is entirely different from the expected one, while also relating well and considerately to someone else who is in a different version of reality.

    It would be great, so ideal, if each of us could find a doctor who already knew, understood and could help. But in the meantime we have this other situation which is like trail blazing, bush wacking, and if we can do it without alienating doctors and others, we might turn them into team players who will start to be helpful, to join their knowledge and skills with us....That is what I hope for and work for.

    Welcome, Birdy!

    Sing
     

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