CFS: brain tumor

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Aug 5, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i was just reading about a toronto doctor, Dr. Jeff Sherkey, who died of a brain tumor. He had had CFS for over a decade.

    Nancy Kaiser was also in a coma before her death.

    I understand brain tumors are more likely for CFS patients.

    I often wonder...why do some of us live for decades with the disease while some get cancer and die so early?

    I read about one man who died of lymphoma just 4 years after contracting CFS (EBV?) from his daughter.

    It is all so sad and makes me so depressed. I feel like I have no control over my health now. It's just a fluke that I am still around.
  2. dragon06

    dragon06 New Member

    As far as I have heard, read, asked my doctor about and so on, CFS isn't contagious. How did a man contract CFS from his daughter if it is not contagious?
  3. ladybugmandy

    ladybugmandy Member

    the post on the CFS memorial site implied that he may have contacted EBV from his daughter. it said his EBV titres were "very high". i do not know why they used the term "contracted CFS".

  4. waltz

    waltz New Member

    It's like how most doctors don't believe CFS exists. Some people have a contagious version and many people have reported contagion. My mom got it from me about a month after I moved back home. Both my sisters had very unusual symptoms within a month or two also.

    It's very easy for a doctor to say it's not contagious just because that's what they believe so the other person must have something else, like depression... anxiety... stress... perceived pain not real pain... etc. Sound familiar? They never record cases of people passing it to each other because "CFS is not contagious". It's a circular reasoning since they don't record it, then there's never any evidence that it is.

    You have to remember that this is a belief that came about when they defined CFS during a time when nobody believed in CFS and they did not believe it had anything to do with infectious diseases. Now there is renewed interest in infectious diseases, and we even had an entire conference on "Viruses in Chronic Fatigue Syndrome" which included many speakers not only Dr. Montoya, on several different viruses including enterovirus, Borna virus, and probably others.

    Basically they still don't know what exactly the causes of CFS are, so how can anyone say it's not contagious when they don't know what it is, and several of the main virus category suspects in research today are known to be contagious?

    I would say that by anecdotal evidence, the contagiousness of CFS is slightly higher than AIDS but less than a cold, and it very much depends on which person who has it. It seems like some people are rather contagious while maybe most are not.
  5. jasminetee

    jasminetee Member

    It seems to me that the majority of people with CFS that I know about live maybe not long lives but at least decades long. Cancer is more prevalent in PWCs as are other health probs, of course because our immune systems and all of our body systems and organs are affected adversely by this DD. All we can do is our best to live as healthy as possible. In my case, I find solace in letting go and letting God.

    Personally, I don't want to live 30 or so more years with this torture. There are many PWCs who die in their sleep so that's what I pray for.

  6. ladybugmandy

    ladybugmandy Member


    had to hug you after that post!

    i keep meaning to start praying seriously. i know it would help me cope. it has in the past. now that my brain fog is 10% better, i can pray somewhat.

    i wish i had a stronger faith. i am glad you have that.

  7. lucky

    lucky New Member

    I saw Dr. Sherkey many times before he died. After I realized that he was too sick to see patients because I saw him suffering too much, I quit seeing him only finding out later that indeed he died of a brain tumor. He really suffered badly and, I am sure, did not even know up to the last minute that he had a tumor.

    He followed Dr. Jay Goldstein's protocol and was a firm believer in it.

    Best wishes, Lucky
  8. ladybugmandy

    ladybugmandy Member

    Thanks for that info. I am surprised I hadn't heard of Dr. Sherkey and his interest in treating CFS. I have had CFS for over 15 yrs and live in Toronto. I have searched high and low for a doctor here and could never find one. you also live in Toronto? If so, do you see a doctor here?

    Thank you
  9. jasminetee

    jasminetee Member

    Hugs back to you!

    I believe God hears all of our prayers no matter how they are said. Just the thought towards God of saying, "Please help me through this" is a powerful prayer.

  10. glenpr

    glenpr New Member

    The brain tumor could be the reasons for the symptoms, not the other way around?

    I know of a lady with CFS/FM symptoms, including the migraines, was operated on for bulging disks, with no affect, until a doctor found a tumor, when removed all of her symptoms were gone.

    love glen