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    A book that's food for thought
    bette_kaffitz posted:
    I just finished a book from the library that has me really thinking. It's


    In this book you hear that pretty much all "alternative medicine" is bad medicine. It is as helpful as a placebo. It has the beneficial effect of a placebo. As long as it is not too expensive, causes no harm, and does not keep you from using science-based medicine that could have helped you (as some of the "cancer treatments" cited in the book have done), there's nothing wrong with trying them. But you should know that any help you get could come from a 15 cent sugar pill.

    So many of us here have had no help from medicines we just cannot tolerate. We try accupuncture and find relief. The book calls THAT a placebo effect. We take vitamins and other supplements and find relief. The book says that's another placebo effect--and if the dosages are too high, a dangerous one.

    The scientist in me agrees with this position. The FMily member has a lot of doubts. Heat helps. Stress reduction helps. Is this supposed to be a placebo effect?

    The author says we should be finding out how to tap into the placebo effect and use it to treat disease. We should just do it knowing that what we are doing is just tricking the brain so it can trick the body. And, as long as we do this with our eyes wide open and don't charge patients for something they are not getting, that is completely ethical.
    It's a book to get from your library. And think about.

    An_249675 responded:
    Placebo effect or not, if it helps someone manage pain or whatever their issue may be, then they should continue doing it. Who's to say that a prescription medication does not have a placebo effect? Read a book about the side effects of prescription medications, the diseases they CAUSE, the over prescribing by drs. and the wealth of the pharmaceutical companies.
    Today there are 85,000 new chemicals in our environment. These are what contribute to so disease. Free radical damage to brain cells by all the preservatives and fillers, colors, pesticides, GMO's etc. lead to neurodegenerative diseases. You could have a perfectly good diet and still require supplements and vitamins to combat these excitotoxins. SUGAR - a drug? It is known to cause inflammation. MSG - a dangerous toxin. FLUORIDE - a poison.
    Fibromyalgia is like having a "perfect storm" inside your body. It's complex and can be difficult to treat with it's multitude of symptoms. Acupuncture dates back 3000 yrs. Is it just a gimmick made to make those who use it believe they feel better? I doubt it.
    Supplements and vits are costly too but most of what we feel is based upon what we believe. It has been shown that those with FM, have low Vit.D. There are certified products available online if you do some research. I tried many Vit.D products before I found one that didn't make me frightfully ill.
    Personally, I developed FMS shortly after I received the vaccine for Hep. B. No dr. or specialist will agree that the vaccine caused my disease but I was fine before I got it and now my life has completely changed.
    Do what helps, natural or prescribed or combination thereof. Legal drugs now kill nearly 38,000 Americans per year. There were NO deaths (in 2010) attributed to natural supplements.
    dollbug responded:
    Hello I was reading your post I was thinking about my P5P....I went to several *specialists* who could not find *anything* which was causing my pain. They did NOT tell me that it must be all in my head, but that's what I feel like they thought. Well, I continued to suffer for a long time....until I tried the P5P. And to be honest with you, I thought that it would NOT make any difference in my back pain as well. I was so very WRONG. I have been taking it now going on 8 months. On occasion I will forget to take it and soon my back *screams* at me, to remind me.

    I am still not sure exactly how the P5P works....but I know that it has helped my back pain....and to me....this is what counts.

    I will say this though. I think that we consume things all of the time that perhaps does not agree with us. I think we use cleaning products which are NOT good for us as well. Perhaps we breathe things also which are not good for us. I can only wish that one day someone will figure out what is causing all of our *health issues*. I know that I have tried a lot of *things* which did nothing to help the way I feel. I did not continue doing whatever it was I was trying.

    So I guess the doctor can call it whatever he wants to call it....but I say, IF IT WORKS, then do matter what someone cares to say about it.

    I wonder just how many people have read this book and what others have to say about it. I also wonder just how many patients he has. I think it would be quite interesting to know.

    Take care.



    bette_kaffitz replied to An_249675's response:

    That book just brings another slant to what is going on with many of us.

    I got much benefit from accupuncture, stress management, TENS, massage, heat, a calcium/magnesium/zinc supplement, and some of the prescription medications. Basically, anything that works is wonderful.

    It's just that we are all grasping at straws here. A treatment that worked last year no longer helps. A major flare up comes along. We cannot sleep. We wake up exhausted. Every single part of our bodies is apt to hurt at some time.

    And we want relief. Right now, some of us are in a good--or at least tolerable place. We tell each other about what worked. Others try something and it makes us deathly ill. So we're back to square one.

    Desperate people have always been preyed upon by those who promise a miracle cure. This book shows some of the most horrible things that can happen if we put our faith in those who are willing to make money on our pain. It also tells about some of the scientific trials that have been done on a few "alternative" treatments.

    I disagree with most of what is in this book. But it will make me a more careful consumer of alternative healthcare.


    P.S. Water soluble vitamins like C cannot hurt us. But fat soluble vitamins stay in our bodies, build up, and CAN hurt us if we take the megadoses suggested by some "experts."
    bette_kaffitz replied to dollbug's response:

    I think it all goes back to the fact that we--and our fibro woes--are all different. Obviously, your body needed your P5P. Someone else's body may not.

    Frankly, I think it would be very difficult to do a double blind study and be able to say that any drug helped fibro. We all have so many ups and downs. Is your good day because you took med X or your bad day because you forgot to take med Y? Who can tell.

    Remember when we were all told to take CoEnzyme Q 10? That stuff is expensive. Maybe it helped some people. Who knows. What we do know is that the people who manufacture CoQ10 made out like bandits. And that is a shame.

    We all have to find what works for us. It is trial and error. I just wish it were possible to say to someone with little money and no insurance, "Eighty percent of fibro patients felt 50% better after 6 weeks on this supplement. It costs less than $5 a month." And we can't say this. Until we can, we have to keep our eyes open, our wallets secure, and our minds alert.

    I just feel so bad for those of us with too few resources, too few choices, too many pains, and no way to know what will actually work for them.


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