Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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just keep getting sicker and sicker/afraid and need help

Discussion in 'General Treatment' started by Navid, Dec 19, 2011.

  1. Navid

    Navid Senior Member

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    hi:

    i became ill 8 + yrs ago after having an abscessed toothe pulled. the first 2 years were a living nightmare....bedbound and on iv abx being treated for lyme. then i had a slight reprieve and the next few years allowed me to do 1 or 2 small things per day. now for the last 0 months i have been completely bedbound again with fatigue, chest pain, nauseau and pain. i have seen and/or talked with many of the top ME docs in the US and cannot tolerate any of their treatments. i have a 10 yr old son and am afraid i will die and leave him without a mother at a young age.

    where can i turn for help. my dream is to find a researcher who will take my blood, tissue, csf, whatever and look and try to find what is wrong with me.

    or do other pts have tips for how i can start to tolerate any kind of treatment.

    i really am afraid to die right now....and very sad to feel so hopeless.

    thank you
     
    *GG* likes this.
  2. Gamboa

    Gamboa Senior Member

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    Hi Navid,

    How awful for you. I can't offer much except to let you know that you are not alone, despite the fact that you probably feel that you are. I know things seem very bleak right now but I truly believe that we have turned the corner on ME/CFS research and that new discoveries and treatments will start to come soon. Just hang in there. I'm not feeling very good myself right now and know how you must feel. Hopefully someone else on this forum will be able to offer you something a bit more concrete.

    Hugs to you, :hug:

    Gamboa
     
    *GG* likes this.
  3. adreno

    adreno Homo neanderthalensis

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    I find that the worst part of ME is orthostatic intolerance (usually POTS). Your symptoms: "fatigue, chest pain, nauseau and pain" are all symptoms of dysautonomia. If you could have a table tilt test done to diagnose this, you can have treatment that will improve your condition.
     
    ahimsa likes this.
  4. sianrecovery

    sianrecovery Senior Member

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    I'm sorry I dont have anything concrete to offer, other than my respect and admiration for surviving the difficult years you have, and also to say you are not alone. My experience has been that the medical profession, with a few honourable exceptions, has little to offer me. If you bedbound but able to read I found Donna Eden's book Energy Medicine very helpful when nothing else helped, doing the short, simple exercises in it helped me get functioning again. Its stuff with NO EVIDENCE BASE and I am making no claims for it other than it has helped me.
     
    *GG* likes this.
  5. CBS

    CBS Senior Member

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    I don't know that I have any advise on how to better tolerate the treatments that are presently available. I have had most of your symptoms and at time they have been severe (couldn't walk more than 20 feet without severe chest pain, pronounced arrhythmia and nausea, etc.). You might want to take a look at the NIH description of autonomic neuropathy (similar to dysautonomia) and see if there might be individual symptoms that you could treat in an incremental manner, gradually improving the chances that you might better tolerate some of the ME treatments (such as antivirals) if you could get the autonomic issues under control. In my case, I needed to treat some of the big BP fluctuations with an ace-inhibitor before I could deal with trying to address some of the more systemic issues (I did eventually go on Valcyte and have seen significant gains since doing so). I guess my point is that it might be worthwhile to try biting off manageable bit and pieces in a way that even a primary care do might be able to supervise in an effort to regain so strength and build reserves for something bigger down the road.

    Best of luck and try not to lose hope.

    Shane
     
  6. Sallysblooms

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

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    I have had POTS for three years. There are treatments with supplements that help me. I agree, read about POTS and Dysautonomia and see if you think you might have this.

    We are all here to help all we can. Sally
     
  7. Ocean

    Ocean Senior Member

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    Sallysblooms, Do you mind saying what supplements you found helpful for POTS?

    Navid, I don't have any advice unfortunately, but I'm sorry for all you're going through and am sending my warmest wishes for improvement.
     
    *GG* likes this.
  8. hurtingallthetimet

    hurtingallthetimet Senior Member

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    sorry you keep getting sicker and sicker....ive had the same thing...seems liek i look back months ago or last year and i cant do waht little i was doing then now...i stay in house pretty much all the time unless i have to go get grocerys or doctors appointments...i try a few garage sales at counselour suggestions beucase i use to love so much but it wears me down afterwards..anything now wears me down afterwards..

    im on many medications but the thing that has helped me most so far was doctor prescribed low dose morphine it takes edge off pain im sedated and loopy but as i said i rarely go anywehre and of course if i do i never take any medications if im driving...its sad that my life has come to taking morphine because i use to be so active fit and happy...now im so afraid of whats ahead...if i keep getting sicker and sicker becuase im already so sick i cant do much and when i do as i said it exhausted me and causes flare...

    hope you get some great advice to help you and that you are doing well
     
  9. Daffodil

    Daffodil Senior Member

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    Navid..so sorry you are going through this.

    When you say you cannot tolerate treatments, what do you mean? What happens when you try them?

    XOXO
     
  10. Charles555nc

    Charles555nc Senior Member

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    http://forums.phoenixrising.me/show...d-Coordination-on-regimen&p=228451#post228451
    Im seeing some progress, I was treated for lyme also for 3 years, and couldnt tolerate stuff like ldn, and antiretrovirals.

    I often felt like I was going to die, or hurt myself...so glad I didnt give up. Try the vitamins, Ive tried every drug imaginable except for ampligen, without much progress..

    I wish we had a list of names of people standing in our way for getting full recognition for how devastating this disease is.

    Edit: Hi Daffodil! lol
     
  11. Ian

    Ian Senior Member

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    The infection is still in your jaw bone. Just because it doesn't show up on x-ray doesn't mean it's not there. Check out mine .. x-ray basically showed nothing.
    http://imgur.com/a/H08ip
    Look at the scale of the bone defect .. I had a huge hole in the bone with infection inside. I found it with MRI
    Here's the pic !
    http://i126.photobucket.com/albums/p95/dukeeeey/dental stuff/mri-1.jpg

    Find a specialist dentist that can help you with this. If the dentist has a cavitat scanner, most likely he can help. Most dentists are useless though, no doubt you'll have to travel a long way to find a good one.
     
  12. Nielk

    Nielk

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    Hi Navid,

    So sorry to hear about the dire situation you are in. Unfortunately some of us are in the same or similar boats. I can give you empathy but, you need
    more right now. Since you are so sensitive to drugs, have you tried an Oriental Medicine? Whether accupuncture or Chinese herbs, these seem to hetive to hard core drugs.
    They also have a different way to look at the body and the symptoms you are suffering from. They might come up with something to help strengthen you and be more
    abled.

    good luck!
     

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