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I think i put the puzzle together

Discussion in 'General ME/CFS News' started by Ian, Sep 4, 2011.

  1. Ian

    Ian Senior Member

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    At least in my case.
    Unlike probably most here, I was fortunate enough to find out what was making me sick. To make a long story v short, i had a bone abscess in my jaw around my last molar. The abscess burnt itself out, but my body didn't conquer the infection. The bone had actually died died. X-ray didn't show this, I found it a few years later with a special type of ultra sound. Scan here -> http://i126.photobucket.com/albums/p95/dukeeeey/dental stuff/Image-Copy.jpg

    I've had surgery twice now to rid myself of this. And it still seems I have a bone infection there because it showed up on MRI -> [​IMG]

    But this is diverging somewhat. I knew the anaerobic bacteria in the dead bone were making me sick. When doctors or dentists look for problems, they look for all the usual signs of infection, raised temperature, white blood cell count, inflammation. But with a dry gangrene infection, which is literally what this is, you get none of those things. So the problem gets missed. I never even got pain in the area.

    Anyway during my research on gangrene, I found this
    http://en.wikipedia.org/wiki/Hydrogen_sulfide#Toxicity

    I am thinking, wow that sounds very much like it could cause CFS. DrMyhill in some of her lectures went on about the fact CFS patients are severely deficient in energy. She actually has a test where you can measure how bad it is, and they can tell you how much CFS you have. Jawbone cavitations produce exactly this kind of problem, with the anaerobic bacteria produce hydrogen sulphide. So then i searched for hydrogen sulphide and CFS, and wow theres a tonne of articles and papers on it.

    http://chronicfatigue.about.com/b/2...ome-breakthrough-what-is-hydrogen-sulfide.htm
    http://www.cfids-cab.org/MESA/Lemle.pdf

    But what all of these papers totally fail to explain is, where on earth would CFS patients be getting hydrogen sulphide from, if not from a gangrene infection, and CFS patients have no obvious rotting fingers and toes like someone who was frostbitten or something. The answer is obvious, from dental infections in the jaw, or simply root canal teeth. Not to mention all the other damage the metabolic waste the anaerobic bacteria cause, plus the acidity from the infections, but that's another point entirely.

    The problem is, even though I have scans and pictures of my jawbone problem. Doctors and dentists aren't taught the condition exists. And because it rarely if ever shows up on x-ray it never gets found. Thus in my case I ended up in the wasteland which is the mysterious CFS. I wouldn't say this is the only cause of CFS, i know people get can sick from toxic heavy metals place in their mouths (amalgams), but to me this seems like the most plausible theory I've ever read :p

    Here is a scan from the leaflet that originally found my problem
    [​IMG]
    Sadly quackwatch bankrupted the company with bogus lawsuits and it no longer exists .. but all is not lost because you can find bone defects with the right settings on MRI. Anyone any better theories ? Or we still stuck with it's a virus and drugs are the answer.
  2. Ember

    Ember Senior Member

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    How did you come to have the ultra sound test?
  3. Nielk

    Nielk

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    How did you think of looking at the jawbone? Did you have particular pain there?
  4. Ian

    Ian Senior Member

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    I had lymph node pain in my neck, and constant sore throats. I knew lymph nodes only react locally to the site of the infection, so the jaw seemed like a logical place to look, and I remembered I had this abscess. I had the ultra sound because I travelled to one of the few dentists in the world with one :p
  5. Enid

    Enid Senior Member

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    It does sound very possible to me Ian and glad you can trace it through - hope you are finding aid now. (At one stage personally with oral problems - loss of crowns/teeth etc. - my dentist put me on high dose Amoxcillan and it seems to have had good repercussions all round).
  6. ukxmrv

    ukxmrv Senior Member

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    Ian, I'm really glad that you are making progess and may have found a cause for your CFS. A while back someone posted to the CFSFMexperimental group on her own experience with a tooth infection and how she throught it caused her CFS. There seem to be other people over the years. In their cases I don't think that they tied it up with the other hydrogen sulphite theory though.

    (BTW - how does Dr Myhill's test tie up with the HS theory?)

    Where do you go from here?
  7. richvank

    richvank Senior Member

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    Hi, Ian.

    I think this is very interesting, and I hope you will be able to find an oral surgeon who will be able to help you with this. There have been other people with ME/CFS who have had problems that originated with root canals or cavitations where teeth were removed, that got infected. The immune system is not able to knock these out, because it does not have good access to them via blood circulation, but the bacteria are able to diffuse toxins into the blood.

    Hydrogen sulfide may indeed be involved. It would be interesting to know how the urine hydrogen sulfide test from ProteaPharma in Belgium would come out on you. It is available via the internet, and it is a home do-it-yourself color change test.

    Dr. de Meirleir's view is that hydrogen sulfide is produced by dybiotic bacteria in the gut in ME/CFS. There are two categories of bacteria that can produce this. There are the sulfate-reducing bacteria, which convert sulfate to sulfide, and there are others that ferment sulfur-containing amino acids from the diet to form hydrogen sulfide. It seems reasonable to me to think that H2S forming bacteria of some type might be in this abscess, as you have suggested.

    Rich
  8. Lou

    Lou Senior Member

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    Hi Ian,

    Your quote: "Or we stuck with it's a virus and drugs are the answer?"

    For me, the answer to that two part question is yes, for a great many patients with me/cfs a virus, at the very least, was causal, also probably remains involved in our ongoing illness, but no, at least for me, drugs are not the answer. It just seems the problems are too many and too pervasive to target by pill, that restoration of our immune system will be the answer.

    Hope you can finish off that jaw infection, good luck.
  9. K2 for Hope

    K2 for Hope ALways Hoping

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    Ian:

    Thanks for posting this. I have just started going to an Internist in the US, who has navigated away from mainstream western medical philosphy (although prescribes when necessary) and uses a whole body approach.

    One of the first things he asked me was if I had root canals (I thought it was strange). He seemed really concerned about the cavaties left behind and infection. Now, reading your article, I see why. He immediately put me on some "detox" solution and is going to add more as treatment has just begun.

    Hope I can get "some" improvement as I didn't realize how much this could be at least part of the issues I'm having. At least I've found a Dr who isn't only going to look at one organ - gut, brain, muscle, skin, etc.

    Article appreciated....
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ian,

    I am not sure what country you are in, but if you sign into chat (lower right corner) and open a chat with me by clicking on chat next to my name, I may be able to connect you with a doctor/dentist who works with just this sort of thing.

    He honed in on my root canals as a big problem too.

    Best wishes,
    Sushi
  11. Ian

    Ian Senior Member

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    It's alright, I got a really great surgeon. Without giving his name hes the European president of IAOMT. He got rid of my other 2 jawbone infections, just the most serious one has proved to be more of a challenge. When I had the problem originally, it was huge, and showed up nicely on the cavitat scanner. I had it done and a year later came back, and I knew the problem had returned but the cavitat showed nothing. But i got the MRI done a few months ago and it showed up nicely with that. It's quite long the infection, but it's not especially deep.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You might want to ask about using a laser that can bend around curves for getting at all the infection.

    Sushi
  13. Ian

    Ian Senior Member

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    The defect is actually inside the bone. Bone grew over the top of the infection, so it will be opened up, the infection scraped away, then he will cut away bone until he reaches good bone. Good bone bleeds, necrotic bone does not :p
  14. ukxmrv

    ukxmrv Senior Member

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    Ian, I'm so glad to hear that you have a great surgeon. Just wanted to wish you "good luck". Would you be happy to let us know how you get on?
  15. Ian

    Ian Senior Member

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    sure, I will try and get pics of the surgery also
  16. liquid sky

    liquid sky Senior Member

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    Did you get any improvement in symptoms after the first two surgeries? I sure hope this surgery will wipe the infection out for you.
  17. Ian

    Ian Senior Member

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    Yeah, about 2 weeks after I had the surgery first time, I noticed a huge change in my health. A month after I had almost forgotten what it was like to be sick. Previously I was basically house bound. It stayed like that for 6 months, but after that my health slowly went down hill again. Bone takes a surprisingly long time to heal. I had scans at 6 months after and a year after and you could see a visible change in the bone. Not like your leg when you break it, takes 6 weeks to knit back together.

    [​IMG]

    Here is the original x-ray I had, before I had any kind of work done. I was incredibly incredibly sick with this. I got to the point where my under arms started to swell up and the skin would peal off on a regular basis. I honestly didn't think I would survive that long. If you look at the lower left wisdom tooth, you can see heavy bone loss around the tooth. You need something like 50% bone destruction before you see it on x-ray. I had a situation where food could go down my back molar, and under my wisdom tooth, and just decay. Bone disease is this situation is inescapable. Incredibly the dentist that took that x-ray said as long as I had no puss or swelling it would be fine, and he gave me the all clear, which sent me to sleep for a year. But the only reason the abscess burnt out around my wisdom tooth was because the bone had died. I had the same problem with the other wisdom tooth, but never had any visible abscess. The infection was considerably smaller on that side. It seems dentists lack even fundamental basic knowledge when it comes to infection in the jaw, which is just frightening.
  18. mellster

    mellster Marco

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    I don't understand why this is so hard to detect. OK, so it's hard for the Xray to pick up, but could a well-targeted blood-test not have picked up a constant infection? Also, could you summarize your symptoms and how they changed over time (just on the off chance that anybody else here has something similar and undiagnosed)? Thanks & cheers.
  19. Ian

    Ian Senior Member

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    It's not hard to detect given the right tools, eg ultra sound or MRI, but none of these are available at your local dentist office. One way of finding these problems is simply to put pressure on the area. If it elicits pain, there is probably a problem there. You should be able to push down hard on your jawbone and feel no pain.

    If you read my first post, I said that the anaerobic bacteria in cavitations produce hydrogen sulphide. CFS patients have been shown to have abnormally elevated levels of this in their blood. And hydrogen sulphide has been known to damage the energy production in cells. I am sure with the right test, they could find this.

    Symptoms I've had ..
    Constant flu feeling
    Muscle pain
    Sore Throats
    Lymph node pain
    Extreme fatigue
    Poisoned feeling
    Chronic fungal infections
  20. ixchelkali

    ixchelkali Senior Member

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    I bet you're going to feel a whole lot better once that's all cleared up. Congratulations, and I hope all goes well.

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