My recovery story

[Ian]

Well,
I am new to this forum I guess (first post). But I wanted to share my recover story. There seem to be far too few of these ? About 5 years ago I developed CFS, it pretty much came out of the blue. But I got progressively worse, in fact I deterioated to the point where I was compeltely house bound, and then continued to get worse.

To cut a long story short, I found out through a lot of research and money spent that I had a chronic bone infeciton in my jaw. More specifically the bone marrow had died, and the necrosis was progressing along my jaw line. This type of nightmare is called a cavitation, or nico lesion, ratner bone lesion, or just simply osteocrenosis. Since there is no blood flow to the area, the body mounts no defense against the anerobic bacteria that live in the dead marrow. The toxins from these bacteria, leech out of the site and essentially poison your blood. And this is what I felt like especially when I had woken up, it felt like I had chronic poisining, every ounce of my being was affected by this. I just just fell so ill, even getting through the day doing absolutely nothing was a challenge. Anyway I sought out one of the few specialists in the world that actually acknowledges this kind of problem exists and can do the surgery. I actually had the surgery done twice because first time around it wasn't entirely successful, and now I am better, no more CFS, no more feeling of being chronically poisoned.

This is a picture of the kind of infection I had


If you have root canals or you've ever had teeth extracted (especially wisdom teeth) you could be affected by this.

I've made a website of my story, you can read it in much more detail here:
http://web.ukonline.co.uk/celia.curtis/

Whilst I am free now of CFS, i am not entirely free of problems. My main problem right now is my left tonsil, it's basically destroyed, and I might have it out next year. Anyway, i hope my story can help some of you.

- Ian

 

[aquariusgirl]

Ian, I left you a private message.
Thanks

 

[Ian]

cant reply, your inbox is full. But just search for "cavitat scanner uk". I went there. Not far from London ..

 

[jeffrez]

Thanks for the story, glad you're better. But since you had a known infection and toxicosis causing your symptoms, technically that's not really CFS. Believe me, I understand the fatigue and the feelings of ill health that would make a person conclude they had CFS, but if you got 100 percent better after removing the infection then you just had an infectious illness, not really CFS. CFS has no known cause, and can only be diagnosed after other illness has been ruled out. Once again, very glad you are better, I only wish the answer were as easy as that for most of us. Best regards.

 

[Ian]

I was diagnosed with CFS by the doctors, after being tested for everything. This is not a diagnosis I made myself. Just because you can't find the problem, doesn't mean there isn't one. CFS does have known causes, just doctors like to pretend they don't know any of them. Do a simple good search for women and breast implants. The silicone in the breast implants actives the immune system in some people, with devestating consequences to the health of that person. Many of these women get CFS, and upon removal the problem goes. This is hardly a secret, yet still doctors maintain breast implants are safe for all (lies) and there are known no causes of CFS.

 

[mojoey]

While I have heard of patients that had nearly complete resolution of symptoms from dental work, particularly cavitations and jaw alignment, from the interviews of these patients I've always gotten the impression that they did not have CFS. Being completely incapacitated does not automatically mean you have CFS. Also being diagnosed by a doctor doesn't automatically mean you have CFS either. Do you fulfill the CCC criteria? There are plenty of patients with idiopathic fatigue...the lax diagnosis standards espoused by the CDC enable multiple patients that don't meet CFS critieria to get lumped in with classic CCC CFS patients, to the detriment of both groups.

It's funny you mention about the breast implants--I just recently spoke with a patient with some CFS symptoms that had completely resolution by removing her implants. I don't think this rules out that she had CFS, as the immunosuppression can certainly be a precipitating factor to the CFS. Just something else to look into. I believe the more interference fields (cavitations, scars, injuries etc) we can rectify the better, as toxins tend to get lodged in those areas. However, I've done tons of expensive work clearing up these fields and I still have the same CCC symptoms.

 

[aquariusgirl]

are you talking about the place in bedfordshire?
oh, and i cleaned out my inbox.
thanks

 

[Wayne]

Diagnosis Unknown - Story of CFS Recovery

CFS does have known causes, just doctors like to pretend they don't know any of them.

Hi Ian,

Thanks for sharing your story. I will be looking over your website to see what else I can garner from your experiences, as dental issues of all kinds are very much on my mind these days. I'm going to guess you're familiar with the book Diagnosis Unknown, but in case you aren't, I'll leave a link to a thread I started a while back which contains a story very similar to your own.

Diagnosis Unknown - Story of CFS Recovery

As to whether you ever technically had CFS or not; I personally think that's a moot point. In my mind, CFS is a multi-system breakdown that appears to be caused by any number of factors, including some you mention.

If XMRV eventually is associated with ME/CFS, then "technically', those testing positive never had CFS, they have a retrovirus that created a multi-system breakdown. I generally prefer not to get into these types of semantics. I just know many people on this board are very sick with very similar symptoms, but have likely reached their state of health by a variety of different avenues.

Thanks again for sharing your story. I know there are others on this board who have a lot of concerns about dental issues of all kinds, and will find your story quite valuable.

Best Regards, Wayne

 

[aquariusgirl]

i thought i read that stevie nicks (fleetwood mac) got cfs or some chronic immune illness from leaking breast implants.

 

[richvank]

I was diagnosed with CFS by the doctors, after being tested for everything. This is not a diagnosis I made myself. Just because you can't find the problem, doesn't mean there isn't one. CFS does have known causes, just doctors like to pretend they don't know any of them. Do a simple good search for women and breast implants. The silicone in the breast implants actives the immune system in some people, with devestating consequences to the health of that person. Many of these women get CFS, and upon removal the problem goes. This is hardly a secret, yet still doctors maintain breast implants are safe for all (lies) and there are known no causes of CFS.

Hi, Ian.

I'm glad to hear that you got to the "root" of the problem! I've heard from a couple of others who had this same issue in their jaws for a long time, and getting it cleared out helped them considerably with their CFS symptoms. I am willing to accept your CFS diagnosis, though I understand that if I were a purist using the current case definition for CFS, I would agree that if you have a known medical condition that is causing the symptoms, then it shouldn't be considered CFS. In my view, though, as we learn more, we are going to whittle away at the cases by revealing more medical conditions or adding to the list of known medical conditions, until no "CFS" cases will be left.

In my hypothesis for the pathogenesis of CFS (the Glutathione Depletion--Methylation Cycle Block hypothesis, info available at www.cfsresearch.org by clicking on CFS/M.E. and then on my name) the causes of CFS are a genetic predisposition, followed by exposure to some combination of a variety of stressors (physical, chemical, biological, and/or psychological/emotional), the particular combination varying from one case to another. Based on what you have reported, I would say that your entry into CFS involved what I call a "biological stressor," in your case an infection in the jaw. I believe that that is a legitimate port of entry into CFS. I agree with you that in many cases we have not identified the cause or causes, but this hypothesis allows for a wide variety of causes, eventually leading to glutathione depletion, a loss of protection for vitamin B12, a partial block in the methylation cycle, and draining of folates out of the cells. These features form a vicious cycle, which becomes chronic, accounting for the chronic nature of CFS. Essentially everything else in CFS flows from this chronic vicious cycle.

Again, I'm happy to hear that you have been able to break this cycle.

Best regards,

Rich

 

[jeffrez]

While I have heard of patients that had nearly complete resolution of symptoms from dental work, particularly cavitations and jaw alignment, from the interviews of these patients I've always gotten the impression that they did not have CFS. Being completely incapacitated does not automatically mean you have CFS. Also being diagnosed by a doctor doesn't automatically mean you have CFS either. Do you fulfill the CCC criteria? There are plenty of patients with idiopathic fatigue...the lax diagnosis standards espoused by the CDC enable multiple patients that don't meet CFS critieria to get lumped in with classic CCC CFS patients, to the detriment of both groups.

It's funny you mention about the breast implants--I just recently spoke with a patient with some CFS symptoms that had completely resolution by removing her implants. I don't think this rules out that she had CFS, as the immunosuppression can certainly be a precipitating factor to the CFS. Just something else to look into. I believe the more interference fields (cavitations, scars, injuries etc) we can rectify the better, as toxins tend to get lodged in those areas. However, I've done tons of expensive work clearing up these fields and I still have the same CCC symptoms.

Exactly. I was in bed for 3 or 4 months, sleeping 16-18 hours a day, until getting my amalgam fillings removed. The next day after having them out, I was 90 percent better, back to a normal 8 hour sleep schedule, allergies completely gone, energy returned, brain fog alleviated, etc. That's not "CFS" (which I acquired later), that's just toxicity.

CFS involves changes, some perhaps permanent, to the immune system and probably the brain. It's a complex multifactorial psycho-social, neuro-immuno-endocrinological and cellular energy metabolic disorder. Being poisoned by something, while it might mimic some or even all of the symptoms, still isn't ME/CFS. So if the docs diagnosed CFS, technically they were wrong, which is proved in retrospect from alleviation of the symptoms after removing the source of the toxicity.

Very glad you are better, but just saying.

 

[aquariusgirl]

I'm with Rich on this.
I think that regardless of the triggers .. I think that what makes the illness chronic.. what perpetuates it.. is the methylation cycle block.
It seems like you have to treat that and everything else to get well.. but that's the best explanation I've ever heard for a root cause.
Plus, when I started addressing that, ie poor methylation, that's when I saw improvement on multiple fronts..:sleep quality, cognitive function (verrrrrrrrrrrrrrrrrry slowly), body temperature, menses, etc.
Ian: I have got to wonder if your mum has been ill so long if she didn't wind up with methylation issues.
Is she pretty much 100% now,, factoring in age and everything?
If it was my mum, I think I would want to run the Vitamin Diagnostics Methylations Pathway panel.
Actually, I did run for my mum & it paid off.
That being said, I do appreciate you bringing up the toxic dentistry angle, because it seems like you have to address the toxicities and infections directly also.
Just my 2 cents.

 

[L'engle]

Did you have any symptoms that were a clue to the cavitation problem? Glad you were able to get better! Nevermind, I read your website. What a series of ordeals!

 

[jeffrez]

I'm with Rich on this.
I think that regardless of the triggers .. I think that what makes the illness chronic.. what perpetuates it.. is the methylation cycle block.
It seems like you have to treat that and everything else to get well.. but that's the best explanation I've ever heard for a root cause.
Plus, when I started addressing that, ie poor methylation, that's when I saw improvement on multiple fronts..:sleep quality, cognitive function (verrrrrrrrrrrrrrrrrry slowly), body temperature, menses, etc.
Ian: I have got to wonder if your mum has been ill so long if she didn't wind up with methylation issues.
Is she pretty much 100% now,, factoring in age and everything?
If it was my mum, I think I would want to run the Vitamin Diagnostics Methylations Pathway panel.
Actually, I did run for my mum & it paid off.
That being said, I do appreciate you bringing up the toxic dentistry angle, because it seems like you have to address the toxicities and infections directly also.
Just my 2 cents.

Methylation blockage is likely in at least some of the cases, but it's not the whole story either, imo. There's also impaired sulfoxidation increasing toxic load, impaired immunity and NK function, HPAA changes and dysfunctions, cellular energy defects that are not due to methylation block, etc.

I have almost no serum folate, for example - almost completely deficient for years - and yet get extremely ill when I take even the smallest amount because of monoamine changes, COMT inhibition, etc. I also have relatively high GSH to phase-I enzymes, to the extent that the standard test advice said that raising GSH could further imbalance the system. All along with obvious HPAA dysfunction - which may or may not be related to a methylation defect, but if it is, it seems to me it would have to be many steps down the chain of cause->effect.

Can insufficient methylation explain everything? It doesn't seem like it from where I'm looking. If I could tolerate folates maybe I would see improvements that would cause me to change my mind, but I still think there would be pieces remaining that would not be fully addressed just by improving methylation.

 

[Ian]

Did you have any symptoms that were a clue to the cavitation problem? Glad you were able to get better! Nevermind, I read your website. What a series of ordeals!

Yeah, well sort of. I was getting chronic pain in the left side of my neck, which at it's worst got so bad my under arms started swelling up, then the skin would peal off. This started happening every 2-3 days. But I never had any tooth ache/jaw pain. Nothing like that. The symptoms were always away from the location. But it was basically just a process of elimination as to finding the problem. Virtually all my symptoms disappeared after I had the offending wisdom tooth removed first time around, but later returned some months later when the hole healed up. I was literally walking around for 2+ months with an open hole in my mouth after surgery, but I know now why that fixed me. It was because the anaerobic bacteria are killed by the oxygen in the air. The site healed over, it was x-rayed, I was given the all clear then my problems came back. The x-ray totally missed the massive cavitation I had.

I still get daily problems with my left tonsil, and pain in it, but most of my symptoms are totally gone. What really worries me about this whole episode is. After the doctors have reached the magic CFS diagnosis, they abandon any search for the cause of your problems, and if you have a jawbone cavitation like i had. You are on your own entirely because mainstream healthcare refuses to admit they even exist. Had I not stepped outside of mainstream healthcare, I am really not sure how long I would have lived for with such a serious chronic infection.

 

[richvank]

Methylation blockage is likely in at least some of the cases, but it's not the whole story either, imo. There's also impaired sulfoxidation increasing toxic load, impaired immunity and NK function, HPAA changes and dysfunctions, cellular energy defects that are not due to methylation block, etc.

I have almost no serum folate, for example - almost completely deficient for years - and yet get extremely ill when I take even the smallest amount because of monoamine changes, COMT inhibition, etc. I also have relatively high GSH to phase-I enzymes, to the extent that the standard test advice said that raising GSH could further imbalance the system. All along with obvious HPAA dysfunction - which may or may not be related to a methylation defect, but if it is, it seems to me it would have to be many steps down the chain of cause->effect.

Can insufficient methylation explain everything? It doesn't seem like it from where I'm looking. If I could tolerate folates maybe I would see improvements that would cause me to change my mind, but I still think there would be pieces remaining that would not be fully addressed just by improving methylation.

Hi, Mr. Kite.

I'm sorry that your serum folate is low and attempts to raise it cause problems.

Normally, the dominant form of folate in the blood serum is 5-methyl tetrahydrofolate, which is the form needed by methionine synthase in the methylation cycle, so with a low serum level of folate, I think it is very likely that you do have a partial methylation cycle block.

I would suggest running the Health Diagnostics and Research Institute methylation pathways panel to find out what the statuses of your methylation cycle, folate metabolism, and glutathione actually are. I understand that you have data indicating a high ratio of glutathionation to Phase I detox, but I think it would be better to get an absolute measurement of the plasma glutathione level before concluding that glutathione is high, since the high ratio could be caused by low Phase I activity.

Some people have had to take very small dosages of the folates at first, such as by crushing the tablets and picking up a small amount of the powder with a wet toothpick. It may be that when you take folate, your detox system comes to life and mobilizes stored toxins into your bloodstream, producing symptoms and making it intolerable.

I have suggested the following link between glutathione depletion (which you may actually have, even though the glutathionation to Phase I detox ratio came out high on a comprehensive detox panel) and HPA axis dysfunction:

Both CRH (secreted by the hypothalamus) and ACTH (secreted by the pituitary) are in the category of secretory proteins that contain cystine disulfide bonds in their molecular structures. In the synthesis of such proteins, it is necessary to maintain the cysteine residues in their chemically reduced state within the cytosol of the cells where the chain of amino acids is assembled. This is normally done by having a sufficient level of glutathione, and a proper ratio of reduced to oxidized glutathione. If glutathione is depleted, and this is therefore not done, the partially synthesized molecule will either not pass quality control in the endoplasmic reticulum, and will then be routed to the proteosome to be disassembled and recycled, or in the case of ACTH in the pituitary, the molecule may be routed to the constitutive secretory system in the cell, rather than the regulated secretory system. This routing depends on a "hook" on the end of the molecule that is normally formed by two cystine double bonds. If this hook is not properly formed, the molecule will not be routed to the regulated secretory system. I think this is probably the reason why people with CFS can have a diurnal cortisol level that is either too low, or is not properly synchronized with the daily biological clock rhythm. This mechanism is documented in published research papers. Thus, I think that glutathione depletion can explain the HPA axis dysfunction in CFS in a very straightforward manner.

I have studied a wide variety of the features of CFS in the context of the GD-MCB hypothesis, including the myriad symptoms as well as the abnormalities found in various types of lab testing. For all the features for which I have been able to track down the biochemical mechanisms in detail, I have found that this hypothesis does in fact explain these features in a straightforward manner. Much of this was discussed in my 2007 IACFS pathogenesis poster paper, which can be found at www.cfsresearch.org by clicking on CFS/M.E. and then on my name.

I hope this is helpful.

Best regards,

Rich

 

[jeffrez]

I still get daily problems with my left tonsil, and pain in it, but most of my symptoms are totally gone. What really worries me about this whole episode is. After the doctors have reached the magic CFS diagnosis, they abandon any search for the cause of your problems, and if you have a jawbone cavitation like i had. You are on your own entirely because mainstream healthcare refuses to admit they even exist. Had I not stepped outside of mainstream healthcare, I am really not sure how long I would have lived for with such a serious chronic infection.

Right, it sounds like you got really lucky, and were very smart to get away from the mainstream doctors (90+ percent of whom are complete idiots, in my completely non-scientific estimation). Misdiagnosis obviously can have serious consequences regardless of the disease. And like you said, when it causes people to stop looking for the real answers about what's really going on, it can be deadly! How ironic though, to be written off about having a real illness because they want to say you have CFS. Most of us deal with the opposite problem (or inverse, or whatever it would be - written off from having CFS because they want to say we have an unreal illness ).

Left tonsil could have bacterial or even fungal infection. Mainstream people might be able to help with that. With chronic tonsil infection, micro spaces in the tonsil ("crypts") can develop surrounded by necrotic tissue, pus, fungus, etc. where bacteria can hide out and not even be touched by antibiotics. In that case, surgery unfortunately is the only reasonable option. With all the jaw infection, I would be surprised if it weren't bacterial - but who really knows until it's checked out.

 

[PoetInSF]

CFS is not a technicality

I don't understand this position that CFS diagnosis is only technical. CFS is not just being chronically being tired. It has specific criteria that the diagnosis must meet, and one of the requirement is that there should be no medical explanation for it. If Ian has bone infection that doctors didn't know about, then his CFS diagnosis *WAS* a misdiagnosis. (If they knew about it within 6 months, then they wouldn't have called it CFS, would they?) I'm glad though that they finally found the real cause and he is free of fatigue. Too bad it took 5 years. This case only highlights the importance of thorough testing and examination before handing out a CFS diagnosis. Not just for the sake of the diagnosis, but because it can lead to treatment rather than giving up and suffering for 5 years thinking it is an untreatable CFS.

 

[dannybex]

I have almost no serum folate, for example - almost completely deficient for years - and yet get extremely ill when I take even the smallest amount because of monoamine changes, COMT inhibition, etc. I also have relatively high GSH to phase-I enzymes, to the extent that the standard test advice said that raising GSH could further imbalance the system. All along with obvious HPAA dysfunction - which may or may not be related to a methylation defect, but if it is, it seems to me it would have to be many steps down the chain of cause->effect.

Can insufficient methylation explain everything? It doesn't seem like it from where I'm looking. If I could tolerate folates maybe I would see improvements that would cause me to change my mind, but I still think there would be pieces remaining that would not be fully addressed just by improving methylation.

Hi Mr. Kite,

I had very low folates as well (determined by the methylation panel) and was prescribed all three different 'active' forms of folate. Two of them were entire tablets, the third (actifolate?) I was told to take 1/4 of the tablet. Plus two forms of b12.

I had SEVERE reactions, but took about 2-3 weeks before I realized that they were the culprit. Doc said I was 'dumping metals', so in hindsight I was taking waaay too much for my system to handle. Severe, extreme anxiety, plus cramping, muscle twitching, extra cold extremities -- all of which are just beginning to die down (I stopped the methylation supps about 3 weeks ago). I mention this only because I had my fillings out 20 years ago (8 years before developing ME/CFS), but back then they didn't know all there is to know about proper detoxification and chelation -- so there's a large chance that the mercury was redistributed (in my case) and stayed stored or 'stuck' in my liver (among other places) until the methylation supps caused a sudden release -- so, just wondering -- perhaps this is may be similar in your situation and may -- may explain why you can only tolerate small doses?

Dan

 

[jeffrez]

Hi Rich and Dan,

Dan, I actually tolerate *no* dose of folate anymore.

A few years ago I had a severe stress event that triggered bad anxiety and panic attacks, like being in a constant panic attack for weeks, which would be alleviated completely 2-3 hours after taking folate, like a miracle - completely gone. Then it would creep back over the next day or so back to 'status panicus' again (to coin a phrase).

The problem with taking the folate was that it triggered massive reflux. A few months before that I had to do a course of medrol for an allergic reaction, and that apparently messed up my neurohormones/thyroid function, resulting among other things in severe GERD/reflux, and ever since then folate now also triggers it. That first episode caused some ulcers, which took about a year to heal.

At least I thought they were healed. But when I took the folate again a few weeks ago (folacal and then tried folapro), the reflux kicked in again so severely that at first I literally thought my lungs were inflamed. After about a week of trying to get the reaction down, the ulcers were exacerbated again, and one in particular got hit to the point where who knows if or when it's going to start bleeding or get ripped or perforated, or if it's necrotic by now or what. Plus severe depression now from the folate instead of the almost anti-depressant relief from anxiety attacks like before.

So the issue doesn't appear (to me at least) to be toxin release, especially not at these sub-micro doses. In improving the methylation, the folate obviously as a result is dysregulating whatever fragile neurobiological homeostasis exists, probably through cranking up COMT for one mechanism is my guess (downing NA/DA and causing the depression), or cranking up SAMe, etc. and then somehow either directly or indirectly because of that instigating the reflux again.

To give you an idea of the dysregulation involved (from the Hg and then the iatrogenic neurosteroid effects from the medrol), klonopin now also massively and paradoxically triggers the reflux, while alpraz. and loraz. don't. So who really knows what is going on gaba-ergically, or if there are benzo sub-receptors involved, HPAA, D3 or maybe D1 receptors, NA, etc. Very, very complicated, and I doubt anyone would know how to fix it. The methylation panel might be useful in showing some of the problems, but then what to do about it would be the question. I am so insensitive to so many things now, for reasons like this or others equally as bad, that I'm not sure what options would be available.