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My recovery story

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

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am trying to be more aware of dental health. I have found that the time I am reading this forum is also a good time to floss my teeth.
     
    Kati and Wayne like this.
  2. snowathlete

    snowathlete

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    Thats
    That's all well and good in theory, and i dislike the unhelpful syndrome label, but a lot of people have the diagnosis (yes, diagnosis) of ME/CFS, and regardless of the wishes of members of the ME community they are lumped together as one illness, which likely is more than one illness in reality. I'm in the UK and have a diagnosis like this, and I am treated the same whether I say ME or CFS - badly.

    This isn't going to change until there is an easy test to differentiate members of this mixed group. Better to focus on other advocacy (such as getting people treated better no matter their label) rather than try and get a splitting of the labels, in my opinion, as it won't happen until there is an easy test to make that (which may be many) distinction.
     
    Wayne, Little Bluestem and justy like this.
  3. peggy-sue

    peggy-sue

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    I've told my gp to call it WIG. (Whatever I've Got)
    I don't really care what it's called as long as it is not CFS!
    I object, strongly, to the CFS label. I do not want it on my medical records. I do not use it.
    I do not have "fatigue". I have never had "fatigue". My body simply doesn't produce enough energy to operate itself.
    I have trouble getting to sleep, I have trouble staying asleep. It's not "fatigue" or "tiredness.

    Is the ME/CFS label not exclusively an English/Nice guidelines one? (I'm in Scotland)
     
  4. Wayne

    Wayne Senior Member

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    Hi Peggy-Sue,

    I have a good friend who by all indications has "what we've got". When she could still work, she was a well-respected RN, with excellent health insurance benefits. When she became ill, she was able to tap into a wide variety of health tests, and had some of the most respected health care practitioners and researchers work with her and/or review her case.

    Eventually an infectious disease specialist apparently diagnosed her as "likely" having an unidentified pathogenic disease. Another specialist diagnosed her as "likely" having an as yet unidentified autoimmune illness. With these medical reports from highly respected sources, in which ME and/or CFS were NEVER mentioned, she was able to very easily access disability benefits. ME and/or CFS are terms she's almost totally unfamiliar with, and I don't think she could ever imagine herself participating in a forum such as PR. She just couldn't or wouldn't relate.
     
    GcMAF Australia likes this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Are these specialist making any attempt to treat her "likely" unidentified pathogenic disease or "likely" unidentified autoimmune illness?
     
  6. peggy-sue

    peggy-sue

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    Interesting, Wayne!
    So, if the terms "ME" or "CFS" are not used - then there is belief in an illness and access to help.
    Unfortunately, ME is the correct medical term for the thing I've got, even if my gp doesn't know about it. (WHO ICD 10 G.93.3)
    I don't like it either, I am of the opinion that WIG is a mitochondrial disorder (which my well have retroviral origins) and an accurate name still needs to be coined.
    "CFS" is an invention of the psychos and needs binned.
     
  7. Hip

    Hip Senior Member

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    How does the above CFS and ME nomenclature discussion relate to this thread, which is about chronic jaw bone infections, and the ME/CFS-type symptoms that can be produced by a jaw bone infection?
     
    anna8 and justy like this.
  8. anna8

    anna8 Senior Member

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    I am so glad I came to this site and found helpful stories like ian's chronic bone infection, which I thought straight away that sounds like what I am going through. And since then he has given me some good advice, which has made me feel not so aloneI will share my story one day to maybe help someone but a the moment I am so ill to concerntrate that much...l have read some of the discussion on me and CFS and the symptoms sound the same as me but I do have facial pain as well, I think that every one should just try and concentrate on ways to get better and if that is the dentist route then please try it!
     
  9. peggy-sue

    peggy-sue

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    Hip, it was simply because the infection produced CFS symptoms.
    Not ME symptoms, but the sufferer got labelled with "ME/CFS".
    Which could have been a disaster if the true cause of their "CFS" hadn't been found.
    Much as it was for my friend who lost 10 years of his life to the "CFS" label. He simply needed a pacemaker.
    He had heart failure. But when you get labelled with CFS, you can wave goodbye to any proper tests or medical help.
     
    Wayne likes this.
  10. Ian

    Ian Senior Member

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    Yeah this exactly describes what happened to me. But even when I got an MRI of my jaw done, and the problem was clearly visible, I still couldn't get help because maxillofacial surgeons and dentists don't do cavitation surgery. In fact most have never even heard of the problem, let alone have any idea how to treat it.

    Treatment is easy though, they simply need to open up the area and remove everything that is bad.

    The problem is, dentists don't want to look at the idea of bone infections in the jaw. Because if they did they would have to wave goodbye to implants and root canals (which are extremely profitable), or at the very least make patients sign disclaimers saying if you keep these dead teeth you could become sick and die.
     
    anna8 and Wayne like this.
  11. triffid113

    triffid113 Day of the Square Peg

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  12. Whit

    Whit Senior Member

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    So patients with MS have CFS because they have similar symptoms?
     
  13. peggy-sue

    peggy-sue

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    CFS symptoms can be caused by ME.
    CFS symptoms can also be caused by chemotherapy.
    I have ME, but I do not have "fatigue", I do not really have all the "normal" CFS symptons at all.
    I'm hyposommniac, not hyper. My body simply does not DO anything aerobic, that's NOT fatigue.

    A syndrome is a collection of symptoms. No more.

    Vomiting and diarrhoea are two symptoms which often occur together.
    They could be considered to be a syndrome.
    But the cause could be anything from food poisining to norovirus to a bad hangover.
     
  14. Whit

    Whit Senior Member

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    I said MS, not ME. :)
     
  15. Ian

    Ian Senior Member

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  16. peggy-sue

    peggy-sue

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    Quote Whit
    "I said MS, not ME. :)"

    Doh! :oops:

    But yes. :)
     
  17. Wayne

    Wayne Senior Member

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    Ian

    Ian, I tried linking to your website [on the link you provided in your first post on this thread], but wasn't able to. I was wondering if it's still available. --- Thanks again for all the valuable information you've shared on this thread.
     
  18. Ian

    Ian Senior Member

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    It was hosted on free ISP webspace. But the ISP cancelled the service, so it needs a new home :p I just have been so busy not got around to it. I will try and find it a new home :)
     
    Wayne likes this.
  19. bootsydan

    bootsydan

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    @Ian

    Do you know if it is possible to get this condition without previously having had any dental work done?

    I have had no dental work done ever, but have pain/throbbing/tingling/numbness in the jaw/ear/cheek/neck region, and am keen to look into anything that may be causing the problem.

    I have also previously had a bone scan which showed nothing, but that was for my back, and am not sure if my jaw was included in that or not.

    Thanks for sharing your story!
     
  20. Helen

    Helen Senior Member

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    @bootsydan
    Did you compare your symptoms with Lyme? It can affect facial nerves as you maybe already know.
    I would try to find a good neurologist that can make a good examination.
     
    Last edited: Mar 25, 2014
    Wayne likes this.

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