Where do I go now?

Discussion in 'Fibromyalgia Main Forum' started by oktoberlady, Apr 14, 2007.

  1. oktoberlady

    oktoberlady New Member

    My rheumatologist says that I have very high levels of Epstein-Barr CFS as well as FM, and there is nothing more that she can do for me. I'm on Duragisic and Vicodin, I've tried PT, OT, but am too rural for pool therapy and my insurance doesn't cover Pain Management Clinics alternative methods. I can't afford to take off any more time from work, or I'll lose my job and I carry the health insurance, and my meds cost over 2 grand a month without insurance coverage. The pain is getting worse, I sleep 10-12 hours a night, and can't do much of anything else other than my desk job and a tiny bit of house work. I don't know how much longer I can hang on to my job. I know it would take years to get disablity. Does anyone have any suggestions? I live in very rural northeast PA and am almost 55 year old female. I really need some direction, as my doctor really seems to be 'dumping' me. There are no other rheumatologists in the area and my PCP won't touch me any more. I'm going to my neurologist next month hoping he can help in some way. Thanks in advance.
  2. lptopcat

    lptopcat New Member

    I don't have much advice, just wanted to say welcome! I'm sure you will get some great responses with ideas to help.

    It might be a good idea to fill in your profile so we can know a bit more about you and enable others to help. Just go up towards right hand corner & you will see, "edit profile", click there and you can add as much or as little info as want.

    I wish you luck and hope you are feeling well!

    Theresa
  3. jmq

    jmq New Member

    I wish I could think of something other than what you are trying. Maybe someone on the board will know of a good doctor in your area that is willing to help you. So many doctors just do not want to be bothered with our illness. THERE ARE A FEW that will actually care and try to help. Dont give up...you will find advise and encouragement here.

    I am 52 and up until 6 weeks ago, I worked full time at the same job for 29 years! I was sure I was going to make it another year and get my pension...but here I am on medical leave. I only have two weeks left of leave and then I have a huge decision to make. Go back or go fight for disabilty. The thought of either scares and stresses me. I just fall apart while working...its a very stressful job that I use to love ...now I cry over everything and get so stressed I cant think straight and make so many mistakes..as a paralegal..that is a big no no!

    Well, enough about me...I just wanted you to know that you are not alone, and hopefully, you will get some help

    jmq
  4. oktoberlady

    oktoberlady New Member

    I did update my profile. Thanks for the reply and the support.
  5. oktoberlady

    oktoberlady New Member

    Thanks for the support. It does help to know we're not alone. Maybe my neurologist can help. He did call me and told me to come and see him an wouldn't take no for an answer. So maybe he can suggest something that will help the sleep and reduce some of the pain with out narcotices. That would be nice.

    Nona
  6. Ginner

    Ginner New Member

    Hi Oktoberlady,
    .....I think you may have a twin right here, our stories couldn't be any closer.

    You will get good advice here.

    My story is much as yours. I turn 55 June, follow your story, so close to mine.. seriously, you can read my profile if you like. I just had to give up my position in Jan.

    Where do you go next...
    1.You may need to find a diff.dr. whom understands, supports fms. Someone here will prob. have a good referral for you, I live in Iowa, not much help there.
    And, a little advice that you prob know, many doc in the sea..lol..and I go to the "ends of the earth" so that I don't get frustrated over "issues" as this, right? Our health is first. I don't know about you but even when I talk too much I can get in a flare and have to lay down or take a break on the bathroom floor at work, no joke..stress just adds to this dreaded disease.. dd. big time and a waste of time, don't you think? Sometimes on my break at work I would go to my car and take a little catnap.hmmm

    2. Are you sleeping? My dr. helped me with this or there are supplements to help your sleep. I take ambien, it is one that can be addictive but I take 1/2 tab and get sleep.

    3. I undetstand, I had exasperated pain start 2 yrs ago at work. I searched high and low for answers, took a fmla,but felt so lousy I didn't search on the web too much until after I had to quit work, so you are up on that one. You are here. good for you...

    5. Did you sign up for the newsletter for here? You can go to the top of this page. There are many avenues , the newsletter and the library, latest updates here are good to read and learn.

    6. You need a plan of attack, as I call it. I just couldn't get mine together.

    7 What are you doing for relief?

    Hope we can help you with some ideas of our own, each of us are so different. I have sore trigger points all over and cervical and much shoulder pain. I have to take rx's and rest.
    Ginner



  7. TerryS

    TerryS Member

    I, also, was up to sleeping 10-12 hours a night. HOWEVER, I was fortunate enough to work from home...and I also took a nap or two during the day. I worked that way for almost 4 years until I couldn't any more. Had a HUGE crash last August, and then my FM pain escalated from being a mild ache (usually) to extreme unrelenting pain 24/7.

    Do you have disability benefits through your employer that you could use until you get on SSDI? (LTD and STD???)

    Other than that, is there someone in the family that you'd like to live with that has room to take you in?

    My sister is on SSDI due to a brain aneurysm that burst. Even though she owns her own home and her husband makes $300/week, she still is able to get MOST of their medications for free or extremely cheap.

    Hang in there...there's always a solution!
    TerryS
  8. deliarose

    deliarose New Member

    Is the EBV infection current? Do you get a high IGM reading or is it a high IGG reading indicating past infection?

    In any event, I think EBV is implicated in my illness, and here is what is working for me.

    I am using Immune Care 64 ..which is a transfer factor targeted v. EBV and HHV6.(My infectious disease guy suspects that most cases of CFS involve HHV6. I am not so sure....but figure it can't hurt to use a TF that offers immunity v. 2 herpes viruses).

    Been on it 6 months. Made a lot of improvement esp. cognitively.

    Six weeks ago began using certain folate and B12 supplements per Rich Van Konyenburg's methylation protocol.
    Unbelievable improvement. Unbloody believable. (see other posts for details)

    It may have helped that I had been doing TFs to knock down the viral load and hence had a lower toxic burden and saw results quickly.

    Just ordered a bunch of supplements to support the mitochondria as mitochondrial dysfunction is a big part of this disease.

    The mito fuel has been widely discussed on the board, and is helping Karen/Barrowinnovations among others and I think Teitelbaum and Cheney have recommended all or some combination of these supplements.

    To recap:
    1)Transfer Factor
    2)Folate and B12 to support methylation and raise glutathione production (but make sure u use the specific ones recommended by Rich Van Konyenburg)
    3)And now CoQ10, Acety-L-Carnitine, Ribose, Magnesium, and NADH to improve mitochrondrial function.

    I stumbled on things by trial and error, but if u look at the people reporting success (Rich Carson, founder of ProHealth, Stormyskye, Barrowinnovations, Dncnfngers, MATN,Elsa)
    there are certain common threads:

    Treat sub-clinical infections
    support mitochondrial function
    raise glutathione
    reduce exposure to toxins
    eat whole foods

    Personally, after 2 wasted years studying this illness, I think Rich Van Konyenburg's theory makes the most sense, and offered the most immediate results for me.

    The short form treatment he lays out takes you straight to detox, but you can go at it more slowly by doing mitochondrial support first.

    I hope this isn't too over your head. When I first joined this board, I had no idea my illness was due to subclinical viruses, or toxin overload or a broken detox system.

    Those theories sounded NUTS to me. Took me a long time to come around to it, but once I started treating the oxidative stress and boosting the immune system and using supplements I saw progress in about 3 months.

    Those initial efforts were extremely hit and miss, but yielded results nonetheless. However, I think the methylation protocol gets right to the root of it... It just might need some additional virus-fighting help in the form of TFs, or olive leaf or Vit D.

    For What It's Worth, my infectious disease doc recoomends Vit D and olive leaf as well as Transfer Factor.

    I have a tiny reservation about TFs. I note Laurie Cunningham used them for 6 months or so and her viral titers didn't drop.

    I also confess to a little concern about using cow products because of the whole BSE/CJD connection, although the company assures me there is no risk. The herd is kept isolated from other herds ..and BSE has never shown up in the milk glands....

    But I think you're fairly safe with Vit D (as long as u keep checking the levels) and Olive leaf.

    Just my 150 cents.

    Usual disclaimer: do your own homework.. blah, blah, blah.

    good luck....I see you are in a tough spot.

    Check out Rich's work. I reall think he may have nailed it.
    delia


  9. Ginner

    Ginner New Member

    Hi jmq.
    I just read your note. I have some advice. Been there done that..Learned the hard way..

    When I went on my fmla from work last yr. to get some rest and find help for fms, I made the mistake of a lifetime and didn't apply for short term disability at work while on leave. Your doctor can help you with getting it. I don't know where I was but I just didn't ask. BUT...get this....

    I had received it one time from my work when I dislocated my shoulder, no questions asked, the HR filled all the paperwork out for me. I received 60% pay while off of work.
    hmmmm

    Next, you can go from short term d to long term dis if you stay off of work, especially if you feel you can not keep up with your work and will later have to apply for ssdi in the long run.

    I made a "huge" mistake!! so..in the
    Meantime, I have no income, paying Cobra, ugh, for health coverage, waiting for ssdi, it takes forever. Not a good situation. I am lucky to have a beau who helps me at this time. I have gone back and applied for std with work, denied and I am appealing at this time.
    Hope this makes sense..
    from one whom knows kido...
    Gin


    [This Message was Edited on 04/14/2007]
  10. deliarose

    deliarose New Member

    I dunno much about fibro, everything I said relates to CFS, but I gather u have CFS too?

    I was able to get off sleep meds of SEVEN YEARS in the first week on the methylation protocol. Have not needed them since.

    Several other ppl on the this protocol have reported enormous improvement in sleep from day one.

    Apparently, if yr methylation system is working, the body produces the right amount of melatonin.. which is key to getting yr circadian rhthyms fixed.

    Rich has written about this on this board.

    Sorry if I sound evangelical. I feel evangelical about this. There is nothing like stage 3 and 4 sleep. It has been said over and over that if u cld fix the sleep disorder in CFS u cld probably fix the CFS.

    I think I'm on my way.

    all the best
    delai
  11. Ginner

    Ginner New Member

    Delai..
    I need to try the methylation system.
    Thanks
    Ginner
  12. Engel

    Engel New Member

    I am finally seeing a rheumy on Tuesday. I just hope he can help me or something.
  13. deliarose

    deliarose New Member

    I see from your bio .. that u have FM and CMP, rather than CFS, so full disclosure, Rich is very candid about the fact that he has not studied fibro and does not know if the protocol will work for fibro only cases.

    If there is a CFS element, he thinks it will.

    Having said that, he has said himself that he is startled that people are having such good results with the short form program. That is to say .. this is still experimental.. and he is learning as we go along. The science is one thing. The practice is another.

    And I think dncn has reported a decrease in pain. She is on the protocol, so who knows maybe it can help fibro.

    Bottom line, u cld give it a shot. Seems like the risks are fairly low. If it doesn't work u have wasted what $40 bucks or something?

    Good luck
    delia
    [This Message was Edited on 04/14/2007]
  14. Ginner

    Ginner New Member

    Thank you so much.
    You know, I haven't even asked if I may have cfs with my physicians. I think I have it all!! lol...I have been and am still just exhausted . I am not working. I have NO reason to be so exhausted. I am just really sick though And exhausted.
    So you think I could still try the prohealth meth. system?I would prefer not to take ambien.
    Gin
  15. deliarose

    deliarose New Member

    but it seems like it's cheap, the risks are low, it's easy to try (you don't need a doctor's help) and it is yielding results for ppl on some important fronts.

    Given your fatigue, it might be an idea to try the mitochondrial support at some point too. Others have reported good results. I am about to try myself. I have used all the ingredients but never all at once.

    Best to address one thing at a time, so u know what you are responding to.

    BTW, Vitacost seems like a good cheap source for supplements that a lot of ppl use.

    There's a 5 percent off voucher on some of the coupon websites right now.. altho i am sure there will be others later too.

    OH and fyi, if u can find a doc to "prescribe" this stuff..in other words recommend it for your condition, you can take it as a tax deduction.

    Check out the IRS site on this. Under notes on medical costs/tax deductions.

    Course you still have to make that 7.5 percent threshold...but it's an idea to keep your receipts!
  16. deliarose

    deliarose New Member

    the mitochondrial support is one element of the longer form protocol that Rich refers to in his posts.

    Just in case u were wondering where I got that.

    I'm kind of doing things a bit back to front. Mitochondrial support is part of step one of the yasko protocol as far as I understand it.

    But fixing methylation is the crux of it.

    delia
  17. Ginner

    Ginner New Member

    Thanks again. You are kind to share. My comprehension, ie brain fog is a muck..
    I understand from what you say to try the methylene system first.
    You are thee best.
    Ginner