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Re: Dr. Nancy Klimas, A BAD EXPERIENCE
Posted by Helen Rinde on 6/28/09

    This is a very disturbing post. I have to contradict you, but CFS IS a real illness. It was recognized by the NIH and the CDC
    only after CFS patients made a stink though the CFIDS Association of America because we were being told it was all in our heads.
    My health insurance company has NO ONE who treats chronic fatigue and.
    Do not confuse Dr. Klimas' shoddy treatment with whether CFS is real or not. I am sorry to hear that she misdiagnosed so many
    people. Perhaps her strength is in research and medical politics.
    The origin of Lyme is clear.
    It is in a tick bite that transmits the borrelia burgdorferi bacteria. That is the first thing my doctor tested me for.
    When someone complains of fatigue they should be tested to rule out Lyme disease, Lupus, inflammations, cardiac and respiratory
    disease, MS, etc. By the way, it took quite a while for the medical community to identify MS as a real disease. It was, for a
    long time, thought to be a psychosomatic disorder in women, until men began to exhibit the same symptoms.
    People with Lyme disease need antibiotic treatment. For those of us with CFS it is not that clear cut. We need to take
    supplements that boost out energy, enhance our immune system, and manage our sleep. I have reactivated EBV and HHV6. There is no
    cure for this. The best we can do is to boost our immune system to force these viruses back into a dormant state. Some doctors
    are using Valcyte, but I think the cure may be worse than the disease.

    Please, if you are tired all time, ask a physician to run blood work to rule out everything that might cause fatigue. If all
    other diseases are ruled out, then you want to start looking at ways to treat your fatigue and find a doctor who can help. More
    importantly, you have to educate yourself. Don't count on a doctor to do that.

    A good place to start is www.endfatigue.com which is the website of Dr. Jacob Teitelbaum. And read his book "From Fatigued to
    Fantastic". You will find treatment protocols as well as recommendations for additional blood work. Sometimes you need thyroid
    or cortisol supplementation even though a family doctor may tell you that your results are in the "normal" range.
    Be responsible for your own care and well-being, and be responsible for your finances. You have to decide where and how you want
    to spend your money. Most doctors are expensive, but some doctors just charge way too much. I was treated at the Fibromyalgia &
    Fatigue Centers. I was given supplements and took IV supplement treatments that were very helpful. They have their own line of
    supplements that were much costlier than equivalents that I could find online for example. I passed up on a doctor who wanted to
    give me expensive IV's for chelation therapy. If your PCP thinks it's all in your head, and/or tells you to see a psychiatrist,
    find another doctor. I spent more than 2 years trying to get my doctor to treat me until I came upon Jacob Teitelbaum's book. I
    found someone in my health plan who had taken Dr. Teitelbaum's course and he began to put me on supplements and Armour Thyroid -
    treatments that most doctors would call quackery (see www.endfatigue.com/practitioner-list/)
    Other links are www.cfids.org & www.iacfsme.org , and for some MD referrals go to www.co-cure.org and click on Good Doctors on the
    left hand side. But keep in mind that a doctor who someone else loves may NOT work for you. Doctors who have websites -
    www.painandfatigue.com , www.cfids.com , www.fibroandfatigue.com ,and also Dr. Derek Enlander who treats CFS and Lyme at
    www.enlander.com/main.html.


    On 10/31/08, Mass Lyme wrote:
    > CFS is not a real illness, it's manufactured by the government and insurance companies to create a patient catagory. What
    > makes you sick didn't make me sick, we are all individuals with different illnesses. Many of these so-called CFS patients have
    > Lyme like me. I know someone who brain and nervous system was damaged from tear gas, I know others with hypothylamic hormonal
    > deficiencies,mould, and many, many, many, with Lyme. The worst things a doctor can do is hang the CFS diagnosis around your
    > neck. I have seen too much, these CFS doctors like Klimas, Bell, Levine have allowed so many patients untreated for Lyme. May
    > the "Lymelight" shine shame on them.Damn them.
    >
    >


     
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