'Bringing the Heat': the new Phoenix Rising Blog

Breakthrough? A New Trigger for ME/CFS? by Cort Johnson


April 1st. 7:00 a.m. Early in the morning, after another bad night of sleep, I head for Starbucks, try unsuccessfully to snatch some more sleep in the parking lot and then sit in the truck, very tired…. but the morning is bright, and the fog snaking through the valley reminds me of long ago in Santa Cruz, before I got sick. I realize that I AM seeing things differently and I feel relaxed, perhaps more relaxed than I have been in almost 30 years and so I just sit and just look at the scraggly grassy hillside and think how beautiful it is. My gaze drops down to the flowering trees outside the IHOP – beautiful! And I’m certain that something significant really has happened.

I’d been wanting to get rid of that gold crown for years. It was hard to look all the way back to the late seventies when I became ill but I knew it had been put in either just before or while I was getting sick. Years later looking back at that time when it over a period of six months or so it all went sour. it was the only ‘unusual’ thing I could remember happening to me. Except for that there were no outside events I could tie my problems to; no tick bites I remembered, no colds, nothing but a slow and steady slide into a morass of muscle pain and fatigue.

I remembered coming down from college, I even remembered what the dentist looked like and his cute assistant – enough detail to suggest I was pretty well when I visited.. Around 1992 I’d gotten my amalgams out but that hadn’t seemed to make any difference. Years after that Dr. Cheney alerted me to the dangers lurking in root canals. I’d checked out the root canal angle – that didn’t go anywhere - but I began to wonder about that gold crown. I found that some people believe that gold and amalgam fillings should not be in contact; that they can set up some sort of electromagnetic field or could increase the flow of mercury out of the filling.

Still it was a slim reed to build a hope on In fact it wasn’t a hope, it was just a curiosity. My dentist had recommended that crown come off several years earlier but rather than spend the money I convinced him to do a patch job. That patch job had lasted until about a month ago when the tooth had finally started aching.

A Trip to the Dentist - The instant he lifted that crown off I felt a feeling of relaxation come over me. I felt noticeably calmer and more lucid as I talked to him afterwards. Over the next five days I continued to improve. Several times I questioned almost in a panic whether it was disappearing only at some point later to be reassured that it was not.

Yesterday, after a difficult day characterized mostly by unremitting fatigue I stood on a hillside watching a spectacular sunset, my body, for once, at almost complete ease. I don’t think I’ve felt like that for decades. Most people probably don't ‘feel’ their bodies much. With CFS one feels and one is aware of one's body all the time; it’s weighing one down or it’s hurting or it’s just there – intruding into ones field of consciousness. For awhile, though, I didn’t seem aware of it at all; it wasn’t weighing me down, it wasn’t hurting, it wasn’t there. I felt great.

A Rough Patch – These feelings were remarkable given how rough it had been recently. That day I’d woken up at 5 am restless and out of sorts with the odor of treated wood seemingly permeating my system. I had tried, once again, to get off the brush of the hillside with its fragrant and flowering sage and back onto the pathway surrounding the house. It had worked for two days but that wood fence with its treated wood, installed a year or so earlier, had caught up with me.

The next night I moved to the front of the house – not an ideal situation – since having someone sleeping on the outside porch looks weird to say the least. But I really needed a good nights sleep so I dragged my stuff out there with an alarm clock set to wake me up while it was still dark so I could drag my stuff back to the backyard before it got light.

But there was no need for the alarm as again I’m up early tormented not by the wood but by something else. I throw some linen into the car and try to catch an hours more sleep there. I know that just an hour – that last hour - could make a huge difference but it doesn’t come. I trudge back into the house where I get some food ready for the day. I get the vegetables and barley ready, flick on the gas stove, turn on the vent fan, and escape to the living room away from the fumes.

About two weeks ago the latest in what has been a long series of home improvements appeared. The addition went in a few years ago, a year or so later the driveway, patio and pathway appeared, then the fences, and now its the dining room table. Not surprisingly since I seem to be an equal opportunity reactor each has been a trial. Now this nice new table is bringing back memories of the last job I held and those horrible several weeks every year or so when the staff revarnished the railings in the building.

That is not what’s keeping me from sleeping outside, however. As I step outside I catch it again a rawness in my throat, a catch in my breath, a dulling down of my senses, the beginning of a headache forming, that sense of alarm in my body. What could it be? I just placed bark mulch around the grape plants but this is much too intense for that and finally I get it, surprised that it’s taken me so long; of course, it’s the trampoline. The trampoline appeared on Christmas about three months ago. Every time the weather heats up it outgases a bit more and it’s been hot again. I can taste it in my mouth now - a strange kind of dull cinnamony taste.

That taste stays for most of the rest of the day. I leave, do some work on the computer, eat some food and then exhausted go to the park where I lie down and sleep for hours. I feel hammered, my body hurts, I’m too wiped out to read but every once in a while a bit anxiously I ask myself – Is it still there? Is that sense of calmness, that new feeling of peace still present? And every time beneath that tired aching body the answer seems to be yes.

My question of course is will it stay and will it grow? Could this little gold crown/amalgam filling have caused my ME/CFS over 25 years ago???

Eight Months Later – December, 2007 - Not much later those feelings of health and at-easeness disappeared completely. Whatever ‘lift’ that crown removal gave me – and there was a definite lift – it seemed like it was absorbed into the turbulence of my body.

In May I tried for my first job in five years. This resulted in a month of overwork on the computer interspersed with a trip to Washington, D.C. for Lobby day that left me exhausted. After that, both angered and inspired by my failed job attempt I decide to create a new website. As I buckle down to the job too much time on the computer ends up sensitizing me to it’s fumes.

The gold crown episode becomes an afterthought – a failure. But after I start to ease up on the website those feelings start to come back – never so vivid as those first couple of days – but more constant. I do feel more at ease. My muscles do feel more relaxed and I have less pain. I’m definitely more comfortable. I keep remarking to myself how much better I feel.

Then in September something rather dramatic happens. My sensitivities have always kept me from even sleeping outside of my fathers house in Las Vegas for more than a night at a time. This is a costly problem given how much driving I have to do to get into the desert. Now all of sudden I find myself sleeping comfortably there not just 2 or 3 nights in a row but for weeks in a row.

During this time I’m also able, for the first time, to make it through a 2-3 day juice fast. I’d never been able to get through the first afternoon before. Even with what has come to be an almost constant computer problem now my feelings of relaxation and at-easeness and better health appear to continue very slowly build. I also notice I can handle much more time in the sauna.

Ups and Downs. It hasn’t been all hunky-dory, however. After 2 months or so outside the house I became sensitized to something else there – and I began to wake up ‘whooping’ and unable to settle my breath down. I’m still unbelievable sensitive to chemicals. Rubber from throw rugs contaminated the dryer which got on my clothes and wiped me out for a week or so before I could figure out what was going on. Something that spilled in a box in the back of my truck contaminated the cab region and all my clothes. That took me two weeks to figure out. I’ve also become increasing sensitized to the odors from plants and large amounts of the desert are now impossible to camp in. I’ve also recently been plagued with the worst gastrointestinal pains I’ve ever had.

Sleep, sleep, sleep. My sleep actually had been improving – now more than ever I can attest to how important sleep really is. My sleep has never been terrible; I’ve usually woken up early (5-6:30) feeling unrefreshed and have trouble getting back to sleep but I probably get 6-7 hours of sleep a night. As my sleep gotten better and its been at times refreshing I’m surprised at how much my unrefreshing sleep has affected me.

Prognosis? I’m convinced that, as small and innocuous as that gold crown was, and as slow as my progress has been that it played a role in my health problems. How much is still unclear. Winter is difficult. I’m always beaten up during the winter and this one is no exception. The weather forces me inside too much and I don’t sleep as well. My energy level is not good right now. My progress has been in small steps that have at times disappeared. Overall I think I’m 10-20% better.

I got that gold crown put in decades ago; I would think it would take a good bit of time before any damage that was done would be redone. Will I continue to improve once things let up? How far will this go? Only time will tell.

Messing with dental work is expensive and the outcome uncertain but I think people with ME/CFS should consider if it could play a role in their ME/CFS. There is some outside evidence that it can.

On the other hand it’s entirely possible that it had nothing to do with my ME/CFS and that I became sensitized to that gold crown/amalgam combination later as my sensitivities grew.

Possible Indications Something Similar Is Happening to Other CFS Patients?

Gradual onset combined with dental work in the months or year preceding CFS – particularly involving new metals, perhaps a metallic crown placed over an amalgam filling.

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