Dr. Kerr Research Study

Discussion in 'Fibromyalgia Main Forum' started by foxglove9922, Jan 27, 2007.

  1. foxglove9922

    foxglove9922 New Member

    Just curious if anyone else here has been part of the genetic research study for CFS that began late last year with Dr. Kerr-St. George Hospital, London, England.

    My daughter and I are a part of this project and to date haven't heard back. We were told we could write but it was my physician's understanding that the project was examining so many gene expressions, it may be some time out before formal findings can be released.

  2. cherylsue

    cherylsue Member

    Has your daughter made any improvement over the past few years? Dr. DeMeirleir syas, "If they're under 30, about 80% have acceptable results."

    I've noticed that the discussions among the scientists have leaned towards heavy metal toxicity, especially nickel and mercury. Dr. DeMeirleir and Dr. Cheney used herbal chelants such as chlorella, hawthorn leaf and flower or the element selenium. Dr. Cheney opposes the use of NAC as it chelates too quickly. Fast is not good.

    Do you think you and your daughter were exposed to something toxic? Even though some are somewhat predisposed to CFS, the environment plays an important factor. Dr. DEM. says," CFS patients also exhibit increased uptake of heavy metals with almost 60% of them having an allergy to nickel, an immune system inducer. De. DeMeirlier believes predisposing factors are present in CFS, but that the triggering factor is often an infectious agent."

    Hopefully, neither you or your daughter are exposed to cigarette smoke which contains a lot of heavy metals. Pollution? Digest fish from rivers?

    Just a thought.

  3. foxglove9922

    foxglove9922 New Member

    Hi CherylSue,

    Always good to hear from you, but, sad that I am because of your relapse. My sincere best wishes that you too will conquer this one.

    I have inquired a few times about the heavy metals which seemed to fall upon deaf ears. All docs I asked told me they initially incorporated it in their lab work but found so little that it was discontinued. I know that there are many here who will disagree with this and I'm on the fence, just don't know.

    For 15 years my daughter, husband, and I lived in the same home went to different work places and schools. Ate the same foods, visited and vacationed to together. Why isn't my ex-husband sick with CFS?

    My mother has symptoms of FM for the last several years. She's an incredibly strong woman and works here way around the pain and fatigue. But, again I don't think her symptoms are as debilitating as others here with severe FM.

    I think my mom, me, and my daughter have a defective gene that has allowed this to happen. I know for a fact a trigger was necessary to bring this on. For my mom it was the loss of her mom, followed by shingles and then my dad's heart attack. I had a viral "bug" Sunday, Monday, and Tuesday of the week I got seriously knocked down with CFS. I was having some marital problems and took on a massive project at work that was stressing as well as being a mom, attending soccor games.....basically burning the candle at both ends. My daugther's CFS was a result of a bout of mono,,,she just never seemed to fully come out of it. It was a push/crash cycle for her trying to attend school. That year she missed 48 days of school.

    My daughter is finally at age 19 seeing some improvement. It's baby steps but she is definitely better than she was a year ago or for the fact even 6 months ago. And to further complicate the matter, she's really not doing anything to improve her health. Her diet in my opinion is terrible (processed food, Taco Bell, McDonalds, chips, Hot Pockets, frozen pizza, french fries, and soda are her staples and she's an itsy bitsy 5'2", 95 pounds), she never exercises, pushes and crashes but the crashes are no longer as severe nor do they last as long. She has discontinued all protocols she was on except for 1 mg of Klonopin at night.

    I on the other hand practice yoga/pilates 3 to 5 times a week, pace myself, take supplements, Valtrex/Doxy/Hepapressin inejections, and make sure my diet is as healthy as possible.....go figure!

    I remember when we compared notes a long time ago, you were ill with CFS and achieved a remission. I too was very ill with CFS for a year and achieved a full remission for 8 years when I came down with this last one that has been going on for 5 1/2 years now. I wonder,,,,just a thought,,,,,that sometimes we are just "doing time", meaning there is NO cure, NO magic bullet, NO rhyme or reason why some are sick for decades and some recover after decades with no real protocol......just letting my brain wander here.

    You struck a chord with me on the cigarette thing. I smoke, my boyfriend smokes and now my daughter smokes. If smoking could be contributory, then why don't all smokers have CFS? I am not happy about myself with the smoking thing, I've tried many times to quit, and just picked up the quit smoking pill yesterday at the pharmacy. I don't want to set up for failure again especially since Valcyte will be part of my life real soon and I'm afraid of those long days in bed,,,,,,that was my downfall in the past. Flares/herxs and boredom were when I turned my back on the right thing,,,,,,,,remaining smoke free.

    Are you going to a FFC now? Have you been tested for mercury, nickel, etc.? What is your treatment protocol now?

    Again, many thanks for responding, my sincere best wishes to you and yours,

  4. cherylsue

    cherylsue Member

    I'm so glad to hear your daughter is improving and best wishes for her continued health.

    I'm sorry you haven't moved along further, but you do have some excellent doctors.

    I'm not with any FFC. Just a good sympathetic PCP and a CFS doc in Chicago who is on the CFS Avisory Board for the U.S. Dept of Health and Human Services. I research quite a bit, buy supplements by the handfuls, and rest a good part of the time.

    My doctor faxed a prescript to the pharmacy that makes the transdermal Nexavir cream. However, we are suffering a Siberian blast so I can't purchase the cream until the weather warms up. Freezing makes it inert. This cold spell is supposed to last 3 weeks. Just my luck. It was in the 40's last week.

    Do the best you can with the smoking thing. I know it's hard. Women have a harder time than men, I hear.

  5. foxglove9922

    foxglove9922 New Member


    Good to hear that you have finally found some knowledgeable docs. I was lucky enough in the beginning to work with a regualr PCP that would work with what I brought into him from books, internet, etc. Problem was he WAS NOT up to date on testing for CFS.

    I got lucky when I found Dr. Levine and Enlander.

    Best wishes and it sure have been cold here as well.


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