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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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My recovery story

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
Clinton Ober Almost Died From A Root Canal

Clinton Ober, the man who discovered "earthing", had the life changing experience of developing a systemic infection in his body following a botched root canal. His liver was especially impacted, and he ended up having about 80% of it removed, and was given a low likelihood of survival.

He did survive, and began to search for a "life mission". It eventually led him to discovering earthing, which helped him further improve his health. When I read this yesterday, I thought I would share it here as just one more example of the extraordinary dangers oral infections can pose, especially to PWCs or other people with a compromised immune system.

Wayne

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.
 

Whit

Senior Member
Messages
399
Location
Bay Area
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.
 

Whit

Senior Member
Messages
399
Location
Bay Area
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.
 

Ian

Senior Member
Messages
282
The idea that the causes of CFS are simply undiagnosed, rather than undiscovered is rather harmful to generating funding, awareness, and research.

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.
 

beaverfury

beaverfury
Messages
503
Location
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.
 

xks201

Senior Member
Messages
740
I would think that if you have a dental infection that same bacteria is infecting your intestines too.
 

Whit

Senior Member
Messages
399
Location
Bay Area
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.

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.
 

anna8

Senior Member
Messages
122
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.
 

anna8

Senior Member
Messages
122
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.
 

anna8

Senior Member
Messages
122
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...
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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...
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
 

beaverfury

beaverfury
Messages
503
Location
West Australia
I would think that if you have a dental infection that same bacteria is infecting your intestines too.

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.
 

Hip

Senior Member
Messages
17,824
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?
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
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.
 

anna8

Senior Member
Messages
122
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

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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 jaw bone cavitation?
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.
 

Whit

Senior Member
Messages
399
Location
Bay Area
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.

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.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I would think that if you have a dental infection that same bacteria is infecting your intestines too.

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".
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
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.