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My recovery story

Discussion in 'General Treatment' started by Ian, Dec 23, 2010.

  1. Marg

    Marg Senior Member

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    Wayne,

    Are you still earthing? I think it is great, really helps the pain and what else could be helping the OI? I got the pad first and have it under the computer desk...helps with EMF. I then ordered the half sheet which you put across the bed, so my husband gets the benefit as well. Really amazing, I would recommend it to anyone. It is also quite cheap compared to others things we do. I read that the sheet does wear out in 3-4 years. I wash it and dry it..okay for that. I am falling asleep faster and sleeping better as well.
  2. Ian

    Ian Senior Member

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  3. Whit

    Whit Senior Member

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    I have to say I don't think it's great PR to have people talking about "recovering from CFS" by discovering something like this. While I think it's great to educate people about possible causes of our symptoms, because there is no diagnostic test and so many of us may not have CFS. But I don't think it's good for the public to get the idea that the CFS patient population is a bunch of people with random undiagnosed illnesses. That makes it really easy to write off and not take seriously. And no researcher or doctor is going to spend their time on this illness if that's what they think. Nor will anyone invest in research. I do think that a large percentage of us have one illness that is yet to be discovered. And it's important to push for research into finding this illness. Even if there are a couple different ones.

    The idea that the causes of CFS are simply undiagnosed, rather than undiscovered is rather harmful to generating funding, awareness, and research.

    CFS isn't just a bunch of symptoms, as other people have said. If you have Lyme's disease, you may have all the same symptoms, but you have Lyme, not CFS. If you have MS, you don't have CFS, you have MS. If you have HIV, you have HIV, not CFS even if the symptoms are similar. And even if a doctor tells you that you have CFS. CFS is not a descriptor for a way of feeling that can be applied to anyone. Unless you discover some new cause that applies to a large percentage of people with these symptoms who were sick and properly diagnosed with CFS for years, it's simply a new illness with symptoms similar to CFS.

    I think it's dangerous for CFS to be defined as a "state" or set of symptoms like this.

    But thanks for coming here and offering all this info and trying to help others find a possible cause for their symptoms. I would love to find out that I didn't have CFS but some other undiagnosed illness. I'm worried about taking experimental drugs because of the possibility that I have something like this, and not CFS.
    penny likes this.
  4. Whit

    Whit Senior Member

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    Unless of course CFS is a state the body gets in caused by lingering infections, and you were lucky enough to find the cause of yours. Seems like a possibility, but not something I would jump to without a reason.
  5. Ian

    Ian Senior Member

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    I respectfully disagree. People need to be educated in the causes of disease. In my own case, jawbone cavitations exist in the medical literature, but doctors, surgeons and dentists are not taught they exist. So the problem lies outside of mainstream medicine. You can only get it treated privately. It shouldn't be like this. Raising awareness might change this catastrophe. No combination of drugs or other therapies could have helped me.
    Wayne and m1she11e like this.
  6. beaverfury

    beaverfury beaverfury

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    West Australia
    Criminy! What do you have to do to earn a guernsey?

    Ian's story is valuable. It makes me consider my own dental problems in the week leading up to 'my virus'.
    In the end, 100% of me/cfs has a cause.
    The Lipkin study might elucidate other factors, but its clear theres a wide range of triggers.

    It is an ME / CFS forum. There's no hierachy, and its not an argument over subsets.
    Wayne and m1she11e like this.
  7. xks201

    xks201 Senior Member

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    I would think that if you have a dental infection that same bacteria is infecting your intestines too.
  8. Whit

    Whit Senior Member

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    Yes, it's helpful for generating awareness about what you have, but it is harmful for generating awareness about CFS.

    I was very careful to say that your thread could help people here. But I don't think you should call it CFS. Because it's not.
  9. anna8

    anna8 Senior Member

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    Hi I'm new to this site or any site I've also have been suffering from jaw cavitation and agree with most of what Ian has been saying this illness has took my life away.. at the moment I'm looking for a dentist who can do the work I need. If anyone could recommend someone in the UK hopefully I would be grateful.
  10. anna8

    anna8 Senior Member

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  11. anna8

    anna8 Senior Member

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    I was just trying to say that when I read Ian's story it sounded just what I am going through, fortunately for Ian he seems to be better.as I'm still looking for help! There are very few dentist who will tackle this problem. I know I'm going through hell, so any help would be grateful...
  12. justy

    justy Senior Member

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    Hi anna8, i would suggest sending Ian a PM (on your profile its called 'start a conversation) i dont think he is around regularly, but i did see him post recently. I think also that he is form the UK? so he may be able to point you in the right direction. Best of luck with this.
    Justy
    Wayne likes this.
  13. beaverfury

    beaverfury beaverfury

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    Good thinking. I never considered that :rolleyes:. I wonder if thats possible ? It would explain a lot in my case.

    Either way, i'm about to take a course of metronidizole.
  14. Hip

    Hip Senior Member

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    Dr Graeme Munro-Hall and Dr Lilian Munro-Hall should be able to help you, Anna8. They are the only dentists that I am aware of in the UK that specialize in treating jaw bone infections.

    Their website: http://www.munro-hallclinic.com/

    Can I ask: how do you know you have a jaw bone cavitation?
    Wayne likes this.
  15. peggy-sue

    peggy-sue

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    CFS is just a set of symptoms - it is not a diagnosis. It is a syndrome. (just as the name suggests)
    It is a set of symtoms that can have many causes - including, I would imagine, bone necrosis.
    ME is another cause of the set of CFS symptoms. They are not the same thing at all and the terms are not interchangable.

    If anybody has been told they have CFS, they have something-as-yet-undiagnosed causing it.
  16. anna8

    anna8 Senior Member

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  17. justy

    justy Senior Member

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    Very interesting website - they look good for safe amalgam removal. Very expensive though. It looks like they have very effective diagnostics and treatment for cavitations.
  18. Whit

    Whit Senior Member

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    I disagree, and think this view is rather harmful. Saying that CFS is just a list of symptoms leads to a lot of dismissal from society and the medical community.

    And I don't see how ME is any different from CFS.
  19. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    For anybody who has an interest in this topic, I would recommend the following book. At this website, there's a link to the initial (sample) chapter, which has some very interesting perspectives.

    The Silent Saboteurs:
    Unmasking Our Own Oral Spirochetes As The Key To Saving TRILLIONS in Health Care Costs

    The gist is that oral infections generally spread throughout the body, and the spread is not necessarily confined to the intestinal tract. I have this book, and it describes how many of these spirochetes (including Lyme) are being found in the brain as well. It's a branch of science that is almost totally unexplored, and the book describes the indications that oral infections and/or spirochites may play a significant role in a large number of diseases of "unknown etiology".
    Little Bluestem and beaverfury like this.
  20. peggy-sue

    peggy-sue

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    Whit, perhaps our differences here aree more to do with nomenclature in the states and the uk. But Chronic Fatigue Syndrome is a syndrome. It even says so in its name.
    http://en.wikipedia.org/wiki/Syndrome
    I never, ever use the term CFS. (unless I'm explaining what a syndrome is)
    I have ME. Using CFS over here will get you labelled as lazy/tired all the time/yuppie'flu-er.
    And CFS is still not a diagnosis.

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