Will I continue to get worse? CFS

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Dec 22, 2009.


    LISALOO New Member

    Short story, CFS came in 2004. Started at about 60%. Each year I've declined 10%. Now I'm about a 10 on the bell scale. I've given up so much, each year, more and more, now it's an hour on the computer if I'm lucky, some tv, some reading. I don't know if I can lose out on that.

    I'm just so tired of declining, I've tried everything, and I mean everything. Will I continue to get worse? I'm in a bad spot handling things now!
  2. mbofov

    mbofov Active Member

    Have you looked into the methylation protocol? I've been doing it off and on for 2-1/2 years and have made some improvement, lighter crashes, get over them quicker. I'm going to keep at it, hope to keep improving. Do a search on this board, there are many posts about it.

    Also, check out low-dose naltrexone (lowdosenaltrexone.org). If the XMRV retrovirus is responsible for CFS, then it seems to me that anything that helps the immune system might help deal with the retrovirus. I'm going to be starting this next week.

    My immune system has improved since I started drinking home-made kefir about 2-1/2 months ago. I make it with powdered goat's milk from Vitacost, so this might help you too.

    I'll make one more suggestion - find a chiropractor or other health care practitioner who does muscle testing. My chiro helped me with weak adrenals and screwed up digestion (almost everything in my digestive tract wasn't working right). I know if he hadn't done this I would be in much worse shape. If you look up Standard Process (they make very good supplements), their customer service number can give you the name(s) of practitioners in your area who buy their products, and many of those practitioners do muscle testing. (and before anyone gets their knickers in a twist, I'm not suggesting muscle testing in lieu of standard medical care - but when the standard medical care can do nothing for you, then give it a try - this was the case for me more often than not)

    Also, I recently increased my dose of vitamin D3 on my doctor's orders from 2,000 to 4,000 iu, and think that is helping my immune system too.

    I don't think it's inevitable that you will continue to get worse but I know who demoralizing this whole illness is. Take care -


    LISALOO New Member

    Thanks for your suggestions, but I can't do the methylation protocol. B vitamins kill my interstitial cystitis. Can't have kefit either.

    I've treated adrenals, digestion, etc. I really meant it when I said I tried everything!

    I was low on vit d, now I'm fine on tests - no difference in symptoms.
  4. karynwolfe

    karynwolfe New Member

    I'm very sorry to hear this, lisa. I understand what you're going through, a lot of us do. It's so scary to try everything and still get worse. I've seen your posts here and you've been through everything in the book to get better. You are a very brave soul (albeit we were FORCED to be brave, but we're still doing it!). I've had a lot of things to help me that just suddenly STOPPED helping because our bodies can't deal anymore, so sometimes even when you have helpful things, it's not enough. Please don't blame yourself. Very terrifying disease, I know. A lot of us have been declining consistently for the past few years, you are not alone. The stress of trying ot have enough (money, housing, food) to live on doesn't help matters... But you'll get through this, you can deal with more than you think, when you're faced with it! Sometimes it does get very bad for a while. You'd be at a better place mentally knowing that it COULD happen, than being in denial that it won't and having it sneak up on you and crush you. Don't give up fighting, but know that we're not in control of everything, only how we react to it. We usually cycle in and out of severity levels, I hope you'll cycle back UP soon :) For you, and for the rest of us

    Prepare for the worst but hope for the best, that's how it works ((((hugs))))
  5. mbofov

    mbofov Active Member

    Wow, sorry to hear all that. I don't have IC so don't know what it's like. But there have been times when I've felt like giving up, thought that nothing could help me because I seemed to have tried everything. And then in a couple of days I get my resolve back and start trying again.

    I just don't believe that any of us are hopeless. I think instead that we don't know yet what we need, but I am beginning to believe more and more that our bodies are geared for health, and the trick (the extremely difficult trick sometimes) is to find what it is we do need.

    Have you tried the low-dose naltrexone?

    Also, I found this website on IC - I'm sure you may have tried everything on it, but if you haven't, maybe there's something new here: http://www.evenbetternow.com/interstitial-cystitis.php?s=gaw1&gclid=CMnF1Pjo6p4CFR9dagod-X0QJA

    Yes, they're selling supplements, but also seem to have a lot of good info as well.

    Maybe if you titled your post asking about IC, what has helped other people?

    All right, I'll stop now. Take care -

  6. mbofov

    mbofov Active Member

    The muscle testing can help with more than adrenals and digestion. I just gave those as examples of how I was helped. It's cheap compared to doctor visits, and can be pretty amazing.


    LISALOO New Member

    thanks for your thoughts,

    as long as I stay away from bad vitamins and foods (like coffee) I can usually keep my IC under control. I tried teh methalyation protocol, made it one week, then my IC went crazy. Before that it hadn't bothered me for 2 years.

    I spent hours researching last week, nothing out there I haven't tried (LDN included!)

    [This Message was Edited on 12/22/2009]

    LISALOO New Member

    Thanks for your thoughts, but I don't cycle up, it's like everytime I go down, I go down further permanently.

    I know what You're saying about things suddenly stopping. The first 3 years that happened to me with about 5 things, just quit after a couple of months. Interesting to know why.
  9. TeaBisqit

    TeaBisqit Member

    It's really hard to say, we're all so different and what works for one of us never seems to work the same for another. We can only tell you things that helped us over the years.

    Briefly, this is how it's been for me. First two years, bedridden. I took massive amounts and I mean massive of shittake mushroom extract. That is the only thing that got me out of bed. The next few years were alot of infections and gynecological problems. I had very brief periods of feeling alittle bit better at different times, but it never lasted. Then I went into a downswing and the thyroid problems came and the stomach problems and basically just never well. I'm barely functional now. I'm 98 percent housebound. I can just barely go shopping for food once or twice a month. Laundry kills me. And basically, I spend most of my time recovering from the shopping or the laundry. If I dare to do even one normal thing, I pay in spades for it for a long time.

    Things that helped over the years were the shittake, royal bee jelly. I took ginkgo for a long time, not sure it did much. Celtic grey salt, helps the NMH. Licorice, also for the NMH. Acidophilus for the yeast. Hops, Valarian, Skullcap for relaxing. Donnital for the stomach problems. And spirutein shakes for vitamins and amino acids. All these things made some of my suffering better, but they did not cure me. And right now, nothing is really helping me much at all. The NMH is better than it was, but I still get attacks of it. I'm in constant pain all over everyday. And the fatigue/no stamina, it never ever leaves.

    I wish I could give you happy news. But all I can say is, try things and see how you do. Like I said, what works for one of us, never seems to really work for another. It's all trial and error. And sometimes you get lucky and something helps alittle and sometimes you don't.
  10. ladybugmandy

    ladybugmandy Member

    lisa what about the xmrv test?
  11. FibroFay

    FibroFay New Member

    What about ther xmrv test? I believe there's new hope for nearly all of us. I hope for better health for you, and for all of us.


    LISALOO New Member

    I'm still skeptical. There seems to be something discovered every year or so that seems to be "the reason". Still nothing that really is.

    Plus I think I've been sick too long. It will take years before a med is out there that I think will work and I think if xmrv is my cause, that it will be too late for it to really be effective. I think it will help those that recently became sick. Like Aids, if you were too far gone, meds didn't really work.

    If XMRV is a cause, it will be years before a med is found. "A recently released study examined how effective 10 anti-HIV drugs were against XMRV. The bad news was that none of the drugs stopped XMRV activity; the good news was that AZT block XMRV from replicating and from infecting other cells. Thus none of the drugs touched XMRV while it was in the cell but AZT stopped it from spreading and doing its mischief once it emerged from the cell.This was a laboratory study which means the results may or may apply to the more complicated situation in the body."

    Everyone's talking about AZT, but "AZT does not kill retroviruses it can only delay progression of the disease" Not good enough!

    I hear what you all say about what works for one might work or not work for another. But seriously, I've tried about 15 doctors, 250 supplements, 40 meds, therapy (multiple kinds, physical and emotional), about 15 different treatment options. I've gone to osteopaths, homeopaths, naturopaths, accupuncture, massage therapy (lymph), I've had my amalgams replaced, did therapy afterwards. I've researched, there's nothing currently available that I haven't tried.

    I'm getting worse, there's nothing left I can do. I just have nothing left to give away or really stop doing, other than tv, the computer (1/2 hour per day) and read when I can. I don't want to watch these last few things being taken away. I'm tired of getting worse, and after 6 years, I know the getting worse isn't going to stop. I can't handle it.
    [This Message was Edited on 12/23/2009]
    [This Message was Edited on 12/23/2009]
  13. TeaBisqit

    TeaBisqit Member

    I agree with you about a treatment for XMRV. I don't think we'll have anything effective anytime soon. Although, the WP did say they have had success in reversing our condition using cancer drugs and immune modulators. We have yet to really hear of anyone who is truly well. I don't know. I believe that with the right drug, the condition really can be reversed, but only while you take it. As in, it will be lifetime. But sadly, I'm not sure if we will see it in our lifetime. Or if by some chance we do, we'll probably be too old to care.

    Maybe you just want to hear the truth. The truth is, once you get this, that's really it. This is your life. And it keeps you on a very short leash. Those of us who got it severe and chronic, we are stuck. There is no out. But sometimes, people do get released from prison, many years down the road. So there is always a glimmer of hope of that.

    I don't know why we were meant to get this. I have no life from it, same as you. There is no enjoyment of life. Can't work, can't go to school, can't attend social functions. And if I dare to try to do a social thing, I pay in spades to the point where it was never worth it.

    I wish we knew the reason behind this. Maybe one day we will.

    All I can tell you is, you really aren't alone. There are so many of us all around the world who are stuck in the house because of it.

    I wish I could give you happy news.
  14. Slayadragon

    Slayadragon New Member

    Well, I don't think you've tried this.

    Go on vacation for two weeks. Take NOTHING with you from your home. I mean nothing. No clothes, no books, no stuff of any kind. Buy new stuff. Don't open it in your house.

    This won't work if you take any of your stuff with you. Leave it all behind!

    If you live in the Bay Area (do you?), travel elsewhere. Try to get somewhere sunny.

    Note how you feel when you're gone. if you feel DIFFERENT, that's important. You may not feel better. Different is the key.

    Then see how you feel when you return to your home. If you feel worse, or if you again feel different, that's another sign.

    If you feel worse when you get back, don't blame it on being depressed at being back at home or worn out from the trip.

    Then if you want, write to me and let me know how you did.

    I'm giving you this suggestion just because you say you are willing to try anything. At most, you've had a nice two-week vacation. Pick somewhere you want to go.

    Just leave your stuff behind.

    Best, Lisa

  15. ladybugmandy

    ladybugmandy Member

    lisaloo...first of all, the article you read about AZT "delaying progression of disease" was referring to HIV/AIDS....NOT XMRV. these are 2 very different viruses.

    if AZT works, it will take longer (maybe much longer) for XMRV to develop resistance because this virus simply does not replicate much and it does not keep mutating like HIV. it is a very very simple retrovirus.

    assuming AZT works (i know this is a big assumption right now), it will likely be a few years before you develop resistance - at which time, they will surely have new drugs for this.

    there is A LOT of public pressure to develop treatment for XMRV right now and things are moving quickly.

    this has not been published yet, but i think a medicine named "isentress" is also affective against XMRV......and a new drug that will be approved in 2010 - i cant remember the name, i think it starts with an "A" - is also supposed to work.

    furthemore, a prominent clinician has stated that likelihood of improvement depends more on age than on duration of illness.

    there have been plenty of people who came back from being at the brink of death with AIDS....it can happen to us too. the immune system can reconstitute itself to some degree.

    why not get tested for XMRV and see what happens? the test will be covered by insurance in a few months, i'm sure.

    hang in there..i am in the same boat ....almost 18 yrs.


    ps.....i expect my results in 2 weeks. if i am positive (which i really hope i am), i will go on 500 mg AZT immediately. maybe you can follow my posts and see how i do on it and then decide if you want to try it!

    [This Message was Edited on 12/24/2009]

    LISALOO New Member

    Actually the clip about delaying progression was from an article about Azt & XMRV


    AZT - AZT was originally developed in the 1960's as an anticancer drug. The first drug to be approved for the treatment of AIDS in the mid 1980s AZT inhibits retroviral replication by preventing the virus from transcribing it's RNA into DNA. Because AZT does not kill retroviruses it can only delay progression of the disease. HIV was eventually able to mutate and become AZT resistant and AZT is now used in combination with other classes of drugs.

    A recently released study examined how effective 10 anti-HIV drugs were against XMRV. The bad news was that none of the drugs stopped XMRV activity; the good news was that AZT block XMRV from replicating and from infecting other cells. Thus none of the drugs touched XMRV while it was in the cell but AZT stopped it from spreading and doing its mischief once it emerged from the cell.This was a laboratory study which means the results may or may apply to the more complicated situation in the body

    So it stops it from spreading but doesn't kill it.

    LISALOO New Member

    I just wanted to know if I will continue to get worse, after 6 years, I guess I will until I"m 100% bedridden. I don't want to live a life through that, it's not living, not worth it.
    [This Message was Edited on 12/24/2009]
  18. ladybugmandy

    ladybugmandy Member

    i know that article was about XMRV but when you said that AZT "delays progression" of the illness, they were talking about AIDS - not CFS. they do not know what happens in CFS yet. all they know is that AZT inhibits XMRV replication in the test tube.

    there are a few (maybe more than a few) doctors out there trying AZT on their patients but we won't know much until more information starts to trickle in.

    i think AZT will work and by the time it stops working, they will have other meds for us to take!

    you can never totally get rid of viruses that incorporate themselves in the DNA...its the same with herpes. people just take meds to try to stop it from replicating, for the rest of their lives. they will come up with better meds so it will be OK.

    in about 20 - 50 years, there is a chance that they will also come up with a way to eradicate viruses from our bodies altogether. they are testiing some pretty promising stuff now.

    this illness will not last much longer for you and you are only 6 years into it, which means you probably have not sustained too much damage to your organs, immune system, etc. you will have a life again....lets pray this XMRV thing pans out!!!

    hang in there!!!!!

    [This Message was Edited on 12/24/2009]
  19. italiano

    italiano New Member

    same story for me ....same time frame too. sorry to say...nothing has helped me ...i am worse than 5 years ago. i will keep you in my prayers....as i pray for strength myself.

    LISALOO New Member

    Thanks, But I'm sure mold is not my problem. I've lived in 3 places since I've beeen sick. I took a vacation, all my luggage got lost. So I was in a different area of the us with all new clothes and things, no change in my symptoms when I was gone or home.

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