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My recovery story

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

  1. m1she11e

    m1she11e Senior Member

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    This whole root canals, Mercury, dental infection has been a real issue for me. I know that it is very bad for our health, and most of us are very aware of it. The problem is the cost. The dentists that specialize in this sort of thing never take insurance and it is so expensive. I had 15 silver fillings put in my mouth about 6 months before I got sick. (We got dental insurance about that time. I dont know why I had so many cavities. There must have been a deficiency of some kind.) About 12 years ago I paid about 3,000.00 to have all of the Mercury replaced with composite. That is when my CFS symptoms went through the roof. I developed all kinds of neurological problems I had never had. I still suffer with numbness in the right side of my face and difficulty moving my right eye. That is also when Vertigo came on.

    I did Chelation orally and with IV's and my Mercury tests came back into normal range after all of that. Problem is, I am way worse off than I was before. Every composite feeling has failed and I probably have 5 teeth that need to be pulled and have already had about 3 pulled. I guess the composite fillings were too big and maybe the dentist didnt set them right. There are different theories with the neurological stuff. Maybe it was the Mercury that moved into my nerves and or brain. Lyme docs will say Lyme hides out in Mercury so when you dig into those fillings you open Pandora's box. God only knows. I do know that messing with them has caused these severe neurological problems I deal with today.

    At this point it would take about 20,000.00 to fix my mouth with a dentist that really knows what they are doing. I wish I had just left well enough alone 12 years ago. Im not saying this isnt an important aspect to health and if I had the money I would get my mouth fixed now. The problem is that if you cant afford to go to the best and have it done right, it really shouldnt be done at all. I personally dont see the finances coming my way any time soon so if my mouth is the source of my health issues, I guess I will have to remain sick.

    I am glad that this was your solution Ian. I just wish the resources were there for this to be an option for all!
     
  2. jenbooks

    jenbooks Guest

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    There are really no good options. I wish they'd left our teeth alone when we were younger--braces and all the cavities I got from them did me in. Every time you had a filling removed and refilled they drilled out more. Etc. Mercury is toxic but composites have endocrine disrupters and acrylic and so on. Crowns have lots of toxic stuff too. The glues are toxic. The best will be when we can pull a tooth, get stem cells from the root, grow a tooth bud, and insert it a few weeks later. Maybe 10 to 20 years from now, we can all just grow new teeth.
     
  3. Ian

    Ian Senior Member

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    Amalgam fillings quite often destroy teeth. The problem comes from the fact they don't bond to the tooth surface, and so in order to make them stay in the tooth they have to cut out a giant wedge shape. Then once the amalgam filling is in, they frequently crack teeth because they expand and contract at a different rate to the dentin. Really they are a disaster. I've spoken to many people who ended up having a root canal and crown because the top half of one of their molars ended up destroyed from amalgam. Had the dentist simply used a composite in the first place, all that could have been avoided. Composites are chemically bonded to the teeth and only require a small amount of the tooth to be removed. The reason dentists love amalgams is because they generate so much money in the long run.

    What kind of precautions (for you and himself) did the dentist take when he removed your fillings ? Drilling on amalgam releases massive amounts of mercury. I have read you could be exposed to a years worth of mercury vapour in a single day from drilling on teeth, but I don't have any reliable figures to quote really. If you wish to get amgalgams removed your dentist should follow this standard
    http://www.iaomt.org/articles/files/files288/Safe Removal of Amalgam Fillings.pdf

    I'd also be really careful with chelation. A lot of the chelation drugs really are for people that have had a high exposure in a short time to a metal. People with fillings have a very long but small exposure. When people are blood tested, mercury never shows up because it's not in the blood, it's in all your cells. For people with kind of exposure, chelation can rip the mercury out of the cells, potentially causing a lot of damage, but then worse still the mercury could be dumped in a new location in the body, to cause damage there.

    Dentists have a habbit of finding cavities, where none exist. My sister went to the dentist and he said she needed 4 fillings. The bill for this was going to be a lot. She didn't feel she had any problem with the teeth so went somewhere else, the dentist even x-rayed her teeth and told her, her teeth were fine. No fillings needed. But what you say about a deficiency. This is close to the truth. It has been scientifically proven that if you have a 25% imbalance of phosphorous and calcium in your blood you will get tooth decay. Your body will actually rob your teeth of essential minerals and they will fall apart from the inside. Sugar messes with this important blood balance. No surprise there I guess.

    So there you have it. I bet even your dentist doesn't know that one. If people were properly educated on these subjects, dentists would probably be out of their jobs !
     
  4. m1she11e

    m1she11e Senior Member

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    I hear you on growing new teeth Jen! :)) It is amazing to me how they are still sticking all this toxic crap in people's mouths. When I try to warn my friends they just think Im being crazy and they say everyone else does fine. "We've been doing it this way for years." I guess they all think I was the only unlucky one out there.

    Ian- The dentist who took out my Amalgams didnt believe or not believe in the Mercury theory. He did use a dental dam but he didnt not use the high power suction. I realized after the fact that when they drill, the Mercury vapors become Methyl Mercury which is a nerve gas so I am sure that is what did me in. I was sick and desperate and thought I just wanted them out. This is why I am making it clear that people really have to go to a biological dentist that knows what he is doing. They also have to know they are gonna pay big bucks or shouldnt do it at all.

    I wish my Calcium/Phosphorus ratio had been correct! Sounds like if it was I wouldnt be dealing with the teeth issues now.

    If I win the lottery I will get my teeth all fixed. There are alot of people that have done all that and had all the cavitations removed and spent their life savings and they dont feel one bit better though too. Its a tough decision for sure. Like everything with this illness... :-(
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    Ian
    where can I read more on this calcium/phosphorus equation and its connection to poor dental health. Is it all weston price stuff?

    I think I read recently on the cfs-dfw list that cheney doesn't recommend ppl getting their dental amalgams out any more.. seen too many horror stories.

    But how can you chelate mercury if you don't have yr mercury/silver fillings removed?
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    How about the present?: http://www.naturalnews.com/029112_teeth_regeneration.html

    I am going to try this soon, just need to find a place to purchase comfrey root aka knitbone.

    I had 4 mercuries removed in 2009, they were cracking. And had the last 2 removed less than a month ago.

    I had a cavity about 2 months ago, and had it taken care of about 1 month ago also, the filling fell out that day, so I am going to try to "regrow". I told my dentist this and he did not say much, he probably thinks I am crazy?! But after 7 years of this, maybe I am?

    GG
     
  7. Julia Rachel

    Julia Rachel

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    SO WHAT i AM HEARING IS THAT THE OPPORTUNISTIC INFECTION "mICOPLASMA" TOOK OVER AND I AM WONDERING IF YOIU COULD SHARE HOW THIS WAS TREATED, bEST, jULIA!
     
  8. Michael Dessin

    Michael Dessin Senior Member

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    Glad your better Ian, but your issues which most CFS patients have as secondary issues should not be confused with CFS. There is one type of CFS and only one, which has been in the history books for decades. Mr Kite described it very well earlier in this thread.

    Even those with true ME/CFS think there are different types, I disagree.
     
  9. Ian

    Ian Senior Member

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    Um, CFS is just a collection of symptoms for which officially there is no known cause. I had full blown CFS, i was totally housebound for 2 years. If this isn't CFS, I don't know what is. I am not sure how you can say there is one type and one type only. I am sure the problem I had effects a great number of people, and since these types of infections rarely cause any pain, and are mostly entirely invisible to x-ray they will go undetected and will forever poison the person. No amount of pills or drugs can ever possibly hope to fix this. If you think there is only 1 type of CFS, where does fibromyalgia fit into the equation ? Do you view that as something entirely different ?
     
  10. justy

    justy Senior Member

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    I have to say i agree that M.E/CFS is one condition. Many people with M.E/CFS have Fibro as well, but you can have it without M.E and it in itself is not M.E.
    Most of the literature would seem to agree that if a treatment works for M.E/CFS and you are completely cured then THAT was the illness you had. For example if you test positive for Coeliac disease after years of M.E, cut out gluten and COMPLETELY recover then you do not have M.E, but Coeliac disease.
    Of course it is quite possible that many people with M.E/CFS have been misdiagnosed and dont have M.E but some other illness.
    You may wish to describe CFS as just a collection of symptoms, but PWME/CFS have remarkably similar findings when looking in more detail at the workings of the body such as mitochondrial dysfunction etc. M.E whilst it has as yet no defined known cause is a distinct disease and not just a collection of symptoms.
     
  11. Mij

    Mij Senior Member

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    Ian, ME/CFS is not just a collection of symptoms with no known cause, it is a distinctive illness just as MS etc are. Unfortuneately most doctors don't have the expertise or experience to give proper diagnosis.

    I understand that CFS was given to you as a diagnosis and I'm glad you are sharing your experiences because it could help a lot of people reading these forums either way.

    ONE day we will have a definitive biomarker to distinguish who has it or not.

    Mij
     
    beaker likes this.
  12. Michael Dessin

    Michael Dessin Senior Member

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    Yikes, Ian, what the last few posters said is correct. As horrible as Fibro is, again this is a secondary condition many with ME have as well.
    ME is indistinguishable from anything else. Their is a very specific malaise feeling we get upon exertion, you have to have ME to understand that feeling. Nearly all of us have very similar immune markers that are distinct with this disease, including Rnase profile. Every system in our body is affected by this disease..that doesnt happen from a tooth infection.
     
  13. Ian

    Ian Senior Member

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    I've lived the nightmare. It used to take me weeks to recover sometimes from going out to see friends, if recover is even the right word. Perhaps return to the previous level. But that aside i really object to your statement, somehow insuinating I didn't have CFS. I didn't make this diagnosis myself. I am trying to spread awareness of an extremely serious issue, which no doubt effects a lot of people. This is one of the causes of CFS. Until people go after the causes of diseases, rathern than just focusing on ways to treat the symptoms, there will be no hope of recovery. Big pharma will never release a pill that will cure CFS.
     
  14. justy

    justy Senior Member

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    Hi Ian, i really dont want to get into a big who has M.E and who doesnt thing as i think that is hurtful and unproductive. If you feel the cavitation was causing your CFS and could cause others CFS then do you believe that there are many causes and that M.E is not A disease but just a misdiagnosis of another problem?
    As i said earlier i am happy that you are fully recovered. But i still feel that those who fully recover with a specific treatment had the disease they where being treated for, which is not going to fit everyone who has M.E. Many people als drive themselves mad trying to find the one thing that was missed by doctors, or by the latest theory. How do you propose that PWME go about discovering the thing that has "caused" their M.E and treating it? It cant all be down to cavitations surely. If thst where the case then M.E wouldnt exist but chronic cavitation infections would.
     
  15. Ian

    Ian Senior Member

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    Exactly. Just because doctors can't find a problem, doesn't mean there isn't one, and that it can't be treated. Cavitations have been documented for over 100 years now, but mainstream medicine refuses to admit they exist. Worse still they go after dentists that do this kind of surgery. The same applies to root canals, there was a 20 year research program that proved they cause chronic disease in the body. What happened ? Nothing, they just carried on giving people root canals. I have no problem with this, other than the fact the average joe has no idea they have the potential to make you very very ill. If the average joe knew this he might not want them.

    As for multiple causes, definitely. People with CFS suffer with a whole spectrum of disorders, besides chronic fatigue. Some people get severe brain fog with CFS, some don't. We would be foolish to just look for a single cause. As I mentioned earlier in this thread, it is well known that some women get CFS from breast implants, the reason being because the silicone leaks out into their bodies and their immune systems are activated by it, a very different cause from what I had.

    The real issue is, mainstream healthcare has absolutely no interest in curing anyone of anything. This is most wonderfully shown by Dr Sarah Myhill. She is quite famous in the UK as a CFS doctor. She was a conventional doctor then started to question things .. She was having REAL success in treating cfs patients. She also has an army of supports, or patients that were really helped by her. What happened ? This happened.

    http://www.meassociation.org.uk/?p=916

    We need to wake up, the system is broken. Relying on these people for a cure, is total madness.
     
  16. roma

    roma

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    i think that we are seeing here one of the biggest issues that is also acting against ME research, different doctors use different criteria to diagnosed ME/CFS mainly because they don't know what they are doing, they run a bunch of blood tests a few x rays and scans here and there and if they don't find anything they say you have CFS, clearly as we're reading Ian's case he found the problem, then one would label that as an infection, but i don't think you can just say you have CFS just because nobody has found your problem...

    i think real ME patients and i mean ME not any case of CFS, ME patients really have a viral infection, and all of those symptoms that ME patients suffer can only be explained by a retrovirus and future research will clear all these questions, really if you study a model of any retrovirus you will see that, a retrovirus infection really is the only thing that fits an ME patient.

    A retrovirus explains every and any symptom i am no expert but i know all of my symptoms every single one of them, came after a had a condom break on me when having sex with a girl who has atypical MS and all of her health problems i have now..

    There may be people that will say that there's too many symptoms and problems and that one virus wouldn't cause all these, but a retrovirus can cause these following symptoms and many more like IBS,brain problems,skin problems,fatigue,yeast infections, random pain all over the body and in different organs, inflammation,brain demyelination and/or lesions,enlarged spleen, tumor and weird cancers, white thrush, swollen tongue, having many active viruses due to a compromised immune system..

    Really nothing else fits, if you found the cause for your problem then you didn't have ME..

    in the future there will be a separation between virus+ and CFS cases and hopefully there will be a name change as well so there's no confusion..
     
  17. Wayne

    Wayne Senior Member

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    Hi All,

    Not that I want to get into a debate, but I have to say I'm with Ian on this one. I think there's a number of things (various viruses; vaccinations; chemical exposures; focal infections; heavy metal loads; parasites; etc.) that can either immediately or slowly but surely do a whammy on our immune system, methylation cycle system, and more.

    Once this happens, it seems we begin to suffer from a domino-like effect with various organs and endocrine glands breaking down, which I think eventually leads to a disruption in our gene expression. This to me, in a nutshell, is what I feel is the "current" hallmark of ME/CFS.

    I feel my ME/CFS started with some adverse vaccination reactions as a child. I then had a major head injury/whiplash when I was a teenager and began to experience what would likely be medically referred to as "post-concussion syndrome". I had a major chemical injury at age 30, followed by a sudden onset viral infection around age 32.

    Before age 32, I knew for years I was not well, but continued to function at a moderate level (was already experiencing PEM). I now consider this period (during which my cranial nerves were severely impinged by my whiplash) as a time when the stage was set for me becoming vulnerable to a virus that produced substantially worse ME/CFS.

    I guess it's hard for me to say whether a person does/did have ME/CFS or not, because we don't have good current definitions to define it. I think it will eventually be shown that there are numerous causes, and various distinctions can then be made. That likely won't happen for decades or longer however, so for now, I feel that if it walks like a duck, and quacks like a duck, it's pretty likely a duck.

    I have no idea if any of this made sense or not. :D

    Be well everybody!

    Wayne
     
  18. rlc

    rlc Senior Member

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    Hi Ian, 100% agree with you CFS is not a specific disease! It is the result of a large amount of misdiagnosis of numerous diseases caused by incompetent doctors who are not prepared to put the time, effort and money into investigating the true nature of their patient’s illness.

    The Doctors who came up with the term chronic fatigue syndrome made it quite clear that they were not trying to define a new diseases, they were renaming Chronic Epstein Barr Syndrome, mainly because they were finding that the test for EBV was extremely unreliable and there was a large amount of concern in the medical community that major diseases where being missed because doctors where relying on these EBV tests.

    Because of this they included a vast number of diseases that had to be ruled out first and tests for these diseases that had to be done before anyone could get this diagnosis. If this paper hadn't been written CFS would not exist! Link http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf

    Unfortunately the press, incompetent doctors and patients have failed to understand this and think it's a specific disease and nobody will listen to the doctors who originally came up with the name when they say it's not, and now people all round the world are being given this bogus diagnosis!

    To say that people with symptoms listed in the likes of the Canadian Criteria proves that they have CFS is just laughable. Let’s have a look at these; you have to have all four of these
    1 fatigue (found in hundreds of conditions)
    2 Post exertion malaise and/ or fatigue (again found in hundreds of conditions, it's why doctors prescribe bed rest, if sick people exert themselves they get fatigue and malaise)
    3Sleep dysfunction (found in lots of conditions and hundreds of millions of people who aren't sick!)
    4 Pain, muscles, joints, headaches etc (again found in hundreds of conditions.)
    Then it says you only have to have 4 of about 40 other none specific symptoms that are found in large numbers of different conditions.

    You could diagnoses just about everybody who had a serious illness with CFS using this criteria. Diseases just don't present like this, some people have Pots some don't, some people have low body temperatures some don't, the reason you all have different symptoms is you all have different diseases.

    The only way to diagnose a disease, which all doctors are taught at med school is to do a 100% full differential diagnoses which means to make a complete list of every possible diseases that could cause the symptoms, and this could be hundreds and then systematically test for every one until the answer has been found!

    The list of testing recommended by the Canadian criteria is so small you wouldn't even be able to rule out a quarter of the diseases that could cause these symptoms ( their actually instructing doctors not to do a complete differential diagnosis) and the truth is most people are being diagnosed without even these being done.

    The Blatantly false information that things like NK cell dysfunction and mitochondria dysfunction prove that someone has CFS, is also a joke! These things are caused by numerous diseases; all they prove is your sick with god knows what!

    This false information seems to be coming from the so called expert CFS doctors, the ones who make large amounts of money out of CFS patients and don't cure them, and don't find large amounts of misdiagnosed patients despite the fact that other doctors do. Anyone can easily find that this information is false by looking it up on the internet and yet these so called experts can't!! People need to realise that there are billions of dollars being made out of them.

    People also need to remember that to qualify for this false diagnosis you're not supposed to fail any blood tests and yet the vast majority of people who post here have failed test results and often a lot of them, this proves that you're not only misdiagnosed but you're doctors are useless and not doing their jobs properly.

    I know I've been guilty of this in the past, but I do find it odd how people with a CFS diagnosis almost universally think their doctors are idiots, yet they put so much faith in the diagnosis that they give them. I think it's because for so long the only option people have been getting is that they can either have a diagnosis of CFS or be told that their depressed, nuts or a malingerer, but there is the true option that their misdiagnosed, but the belief in CFS stops patients and doctors investigating this.

    Sorry if what I’m saying is ruffling a few feathers here, but until people realise that nobody ever said that CFS was a specific disease in the first place, and therefore a diagnosis of it can only ever be a misdiagnosis, they have no chance of getting their symptoms and failed blood tests properly investigated and find out what's actually wrong with them and have a chance of getting their lives back.

    It was only by realising these things and then sacking any doctor who got in my way and learning everything I could about the real diseases that can cause these symptoms, that I found that my illness was caused by Hemochromatosis, if I hadn't done that my life would of ended up being decades shorter then it has the potential to be know, it's fatal if untreated.

    There are doctors in the world who find the true diagnosis of almost all their patients with a CFS diagnosis and have the case notes to prove it, and have written to the medical community explaining how they do it, in an attempt to get this madness stopped, like Dr Mirza in these two articles The myth of chronic fatigue syndrome and NICE and CDC miss the boat found here http://www.bmj.com/content/334/7605/1221.extract/reply and here http://www.bmj.com/content/335/7617/446/reply and they are being ignored just as much as the original doctors who came up with the name Chronic Fatigue syndrome are, when they tell everyone that it was never meant to be a specific disease in the first place.

    All the best
     
  19. Hip

    Hip Senior Member

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    No, in fact technically Ian DID have CFS, just by the very odd way that CFS is defined. At first there was no medical explanation for his fatigue and other symptoms. So it must have been CFS!

    Chronic fatigue syndrome has a very bizarre and paradoxical definition.

    This requirement that CFS symptoms should have no medical explanation is logically flawed.

    For example, does that mean that, in future, if viruses like XMRV or HHV-6A etc, are shown to be a cause CFS, then those people suffering with such viruses will no longer be classified as having CFS? They have CFS now, because there is as yet no conclusive proof that these viruses cause CFS, but as soon as there is proof, then the goal posts are moved, and they no longer have CFS! Instead they will be told that they have the symptoms of XMRV or HHV-6A infection. This is an odd game of language.

    Similarly, in the past, before we had antibiotics and the ability accurate diagnose bacterial infections, we could say that people with mysterious CFS symptoms from what we know now to be Coxiella burnetii bacterial infection would then have CFS (had the CFS definition existed then), but now because we know the symptoms are caused by Coxiella burnetii, we do not consider this CFS.

    If we are going follow this CFS definition to the letter, then technically Ian did have CFS for a while, because at first there was no medical explanation for his fatigue and other symptoms. Once Ian found out what was causing his symptoms, then from that moment on (though his symptoms did not change at that point), technically Ian no longer had CFS!

    I am just laboring on all this to illustrate how the CFS definition is logically flawed.

    The "no medical explanation" aspect of the CFS definition has nothing to do with the nature of CFS, but is a definition that is based around whether we know the cause or not. As soon as we know the cause, it is no longer CFS - irrespective of symptoms!

    Taking this definition to its logical conclusion: initially Ian did have CFS, but once Ian found out that a bone infection was causing his CFS symptoms, then from that moment on, his condition was stripped of its CFS title. However, if for some reason Ian and his doctor say developed amnesia, and thereby forgot what was causing his symptoms, then technically, he would have CFS once again!

    Really, the definition of CFS is somewhat absurd.

    By this CFS definition, is logically impossible for any scientist to find a cause of CFS, because as soon as you find a cause, then by definition, it cannot be CFS!
     
  20. justy

    justy Senior Member

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    The Holmes criteria (1988) linkrd to above do not describe the illness of M.E/CFS. This is just back to the old argument of wether CFS and M/E are the same thing or not.The Holmes criteria may have been the first to describe CFS, but you cant say that M.E didnt exist before this time. Me was classified as a distinct neurological disease in 1969.
    There are many diseases tht for years nobody knew what caused them or what they really where, but we dont now say that MS or Parkinsons are not real illnesses.
    Many other diseases also have subtly different presentations and progressions, again this doesnt mean they do not have the disease as you seem to be implying that we ared all just misdiagnosed because we dont have EXACTLY the same symptoms.
    I agree with HIP that currently in the U.S especially CFS is all about semantics. Iand did have a CFS diagnosis, but can no longer consider that he had CFS as he actually had a bone infection now resolved which happily has restored his health.
    I would say one of the hallmarks of M.E is tht you can never seem to get better. On another thread i discuss my remission for 10 years, but now also have an understanding that i wasnt recovered but had just improved my functioning before losing that improvement again.
    Yes Wayne i also think that perhaps many factors come together to cause the ill health, but this would fit well with a viral or retroviral cause with some genetic factors as well perhaps. It doesnt to my mind mean that all those different factors "cause" M.E seperately or independantly.
    I hope this makes some sense, i struggle to explain myself sometimes due to having a neurological disease - not Holmes' CFS.
     
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