My story

I‘m 46 and first saw a doctor for fatigue at 17. I’ll try to summarize my situation here and then give you the long version.

Executive summary: I lived fairly normally with adjustments (stopped drinking alcohol, eating sugar, carbs, etc) for declining capabilities until about 12 years ago when I went into a tailspin in 2007 after moving to South Florida (2001). I made an emergency move to Colorado in 2007 and started feeling better quickly, but when I abruptly stop taking Ambien, my nervous system just fell apart. After a visit to the Mayo Clinic and five subsequent years of avoiding doctors and improving slowly, I discovered heavy metal toxicity was likely a key source of my troubles. I spent a year and a half doing Frequent Dose Chelation and full-spectrum methylation support which left me healthier in some ways and sicker in others.

My liver and detoxification genetics were probably the weak links in my body that allowed heavy metals and other toxins to accumulate. If that’s true, chelation likely overwhelmed my liver. So, I’m working on addressing my SOD2 flaws and restoring my liver, kidneys and colon. After seeing the big, gnarly stones, sludge and crud that out of my liver in my fourth flush, and the plaque that came off my colon, there’s no doubt left in my mind that I’m on the right track.

Here is the long version:  In 2007, I reached a crisis point and went to see the famous Dr. Galland in New York who did around $3,500 worth of blood tests which turned up a high mercury number on a plasma test (three times the normal high end range).

At the time, I was thinking mold allergy was at the root of my issues and he thought it was reasonable to pursue that angle first. He mentioned that he had patients with much higher mercury numbers with no symptoms. So I moved to Colorado to test the mold theory. It hasn’t entirely panned out.  Five years later, I’m a lot healthier (I was in a desperate slide earlier) but still feel like there are 80-year-olds with more energy and vitality than I have.

That’s changing, though, because in 2013, I finally discovered the root of 30 years of declining health and I expect to be back up near 100% by 2016.

Then and now my issues were/are in order with the most disruptive symptoms at the top:

  • Metabolic disruption leading to constant hunger
  • Metabolic disruption leading to difficulty falling asleep and staying asleep
  • Fatigue
  • Cognitive impairment / brainfog
  • Muscle tightness leading to tendinitis and repetitive strain injury
  • Temperature related itching which disrupts sleep
  • Exercise intolerance
  • Low blood pressure
  • Heat intolerance
  • Cold intolerance
  • Edema
  • Alcohol intolerance
  • Positional sleep apnea
  • Osteoporosis
  • Mold allergy
  • Mild chemical sensitivity
  • Mild anxiety
  • Emotional sensitivity
  • Ears ring when it’s too loud in the room
  • Mild tinnitus
  • Low body temperature
  • Low cholesterol
  • Low vitamin D & migraines from supplementation or sunshine
  • Light sensitivity
  • Dimmed vision
  • Omega-3 intolerance

Here’s what happened after arriving in Colorado — I felt remarkably better, so much so that I neglected to refill a prescription of Ambien I had been using for three months. That night, I experienced a nervous breakdown (which took me the next 4 years to overcome). In a panic, my wife escorted me to the Mayo Clinic where I was diagnosed with Chronic Fatigue Syndrome which I considered nearly useless. I was really fed up with doctors and decided to just focus on diet and exercise.

For many years, I had been under the assumption that I had Adrenal Insufficiency in spite of the Mayo Clinic doctors refusal to diagnose me as such. My symptoms are nearly a perfect match. So, I thought that perhaps I just needed rest, a good diet, gentle exercise and clean air and water. I thought maybe if I stopped using cortisol for a few years and went on a high-fat Paleolithic diet to build my cholesterol back up (which had dropped down to 99),  my adrenal glands would heal and I would recover naturally.

After a couple years of gorging myself on steak, pulled pork, shrimp, and chicken liver, I realized that my adrenal glands were not recovering. I started using cortisol again and currently take about 20 mg a day.

What didn’t quite fit the Adrenal Insufficiency theory is that supplementing got me functional, but never resolved a lot of issues. It just moved me from 20% functional to 60 or 70% functional.  I’ve read Dr. Jeffries Safe Uses of Cortisol several times and everywhere he talks about patients living their lives out happily after they start supplementing.  I never got enough mileage from cortisol to feel well more than a couple hours a day.

Recently, after watching the documentary “Forks over Knives” I went vegan. Having eaten a strictly whole food diet for many many years, with no alcohol, no caffeine, no sugar, no fruit and almost no carbs, I’ve come to the conclusion that neither adrenal supplementation nor diet alone will cure me no matter how many people have recovered from cancer using vegetables.

Finally, I turned my attention to heavy metal toxicity. I asked my Doc for a test and he gave me a challenge test kit which involved taking the chelator DMSA. Twenty minutes after taking the first 75 mg dose at breakfast time, I had an extremely rare clearing of brain fog (which did not last more than 45 minutes unfortunately) and felt unusually energetic all day.  Then I received the results and was convinced at first sight.

Later, I confirmed them with a hair test. When I’m not despairing about the length of the treatment, I’ve become so hopeful that I want to document my detoxification using Andy Cutler’s frequent dosing protocol. I also encouraged my parents to get hair tests and they look toxic as well, so it seems to run in the family.

My possible sources of mercury/metals exposure include:

  • Playing with Mercury in the house at least once as a kid.
  • Extensive vaccinations at a very young age.
  •  9 allergy shots weekly  for at least a year as a teenager.
  • Lots of vaccinations including hepatitis B in my early 20s.
  • Melting lead a handful of times to make weights.
  • Lots of fishing with lead weights / using my teeth to open them.
  • Having two tiny mercury fillings which were removed when I was a teenager.
  • Eating fish from contaminated lakes in Canada during the summers.
  • Eating tuna fish almost daily for many years as a young adult.
  • Eating salmon sushi regularly for a couple years.
  • Contrast agents ingested at least three times for CT and nuclear bone scans.

More important than the source of mercury is the idea that people who get sick typically do so with exposures to heavy metals that don’t bother others.  The theory behind this is that the ones who get sick have deficient internal detoxification mechanisms.  Put simply, the unlucky ones don’t eliminate mercury the same way most of the population does.

For example, the MTHFR genetic mutation prevents folic acid from converting to its active form which has a cascading effect on your health when your store of glutathione is eventually depleted.  It can run in families also which might explain why my father’s chronic health problems are similar in some ways to mine. The failure of your detoxification system is not just genetic however. It’s a multi-factorial condition which may involve high stress or emotional trauma, use of antibiotics, infections, and toxic exposures (of which I’ve had quite a few not listed here).

I’m not sure exactly what got me started on heavy metal toxicity after having neglected the idea for five years.  Maybe, I just reached a point where I’d exhausted so many other possibilities, there was nothing credible left. Part of the problem too for anyone suffering from something like what I’ve got, is that the cognitive impairment (poor memory and brain fog) is a significant obstacle to healing yourself.

Finally, we are too close to our problems  and can’t always see what’s right under our nose. When you have experienced brain fog for 20 years, and when it increases gradually, you tend to assume incorrectly that everyone sort of has it and can become complacent.  It’s especially easy to become complacent when your experience with MD’s tells you that wherever you go,  you’ll get a blood test and the doctor will say “Everything looks good!”

No matter that, 15 minutes of gentle walking incapacitates me for the rest of the day, that 20 minutes of sunshine can give me three days of migraines, that I’m unable to carry on a social life or provide and care for my family in any normal way. None of these mysteries ever seem to trouble my MDs much.

To be fair, a couple had various theories which we tested, but unfortunately they were the wrong theories and some of the therapeutic trials were very harmful including powerful antibiotics and industrial strength antiparasitics.

You might be wondering why I’m creating this website before I’ve recovered. It’s a good question! The answer is — I want badly to heal — and also to help others with what I’ve learned on my journey. This site will help me organize all the information and will be useful in the event that I do recover.   It would be impossible to document after the fact. I want to show the process as it really is and feels in the moment and not through rose-colored glasses after the fact.

1 year update: I‘ve completed a year of chelation now with 23 rounds and 97 chelation days under my belt and it’s time to review my progress. Big picture: chelation is a bitch as Val from FDC explains perfectly:

Mercury toxicity is like someone who has been hit with an arrow.   It caused damage going in, it is causing damage while it’s lodged in your body, and it causes damage when it is “yanked” out, so to speak.  Not until it’s removed, can your body truly heal.  Can you imagine healing with a big arrow stuck in your flesh?

and from Patrik Askert:

Chelation in general is a fine art, a balancing of releasing chelated toxin molecules into the blood stream, over and above what you liver normally has to deal with (in terms of digestive functions and breaking down toxins), and not releasing too many ‘new’ toxins into the blood in one go that the liver is not able to process comfortably in one go. Chelation, depending on how well the chelation agent ‘masks’ the toxin, is akin to a form of very mild but controlled poisoning, occurring over a prolonged period. When one takes too much chelant, then one is effectively ‘poisoning’ the whole body and it certainly feels like this.

2 year update: coming soon!

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15 comments…

  • avatar

    Asha Kiran February 10, 2016, 11:20 am

    Hi Eric, what you think about Ch3enko testing? Thank you.

    Reply
    • avatar

      Eric February 11, 2016, 5:58 pm

      sorry – I don’t know anything about it..

      Reply
  • avatar

    Chris Pfeiffer February 7, 2016, 4:30 pm

    H Eric,

    I keep coming back and cheering you on as my journey keeps going backward. I have had CFS for 20 years, but this incarnation has many similarities to what you have been through, so I want to pick your brain a bit. My newest issue is constant hunger and losing weight like crazy, very low energy. I have amalgams, probably mold, hormones are out of whack. My house failed the ERMI and HERTSMI-2 tests and I live in miami. I mean my life is totally beyond crazy which you can relate too. I had been 80% functional unt, had formaldehyde in the furniture and I live in Miami. 3 years ago, I was 80% functional and then I exercised too much and my immune system collapsed leading EBV to attack my brain and nervous system which almost killed me and triggered some autoimmune issue. Through LDN, anti-virals and a few other supportive things, I got back to 70% after 2 years. I then tried to do some things to get me back higher which usually caused severe herxing and dropped my functionality. Then my kids caught viruses in December which I caught, and now I am back to struggling to survive with the constant hunger as a new issue. I had been losing weight all year anyway. My adrenals seem to be producing too much cortisol and my blood sugar is out of whack but H1C is at 5.7, but it used to be worse. So how do you know you need adrenal support with Hydrocortisone? I am on the fence about wanting to use it and would have to fight with my doctor to get it. Also, with everything you have learned, based on what I have told you, what would you address first and how? My family does not want to move, and I don’t feel like I have the energy to actually have my fillings out, but I prefer all of that to dying. I have CD and ordered Ozonated olive oil which seems to exacerbate my stress response. Did you have thyroid tests? or Adrenal tests? Also, did you ever have your ESR tested and what was it? This is part of my Dr Cheney CFS vs other illness quiz as he found all of his CFS patients had a Low Sed Rate

    Thanks for all you have done and all you do to help others who are suffering.

    Reply
    • avatar

      Eric February 7, 2016, 5:57 pm

      Hi Chris, very sorry to hear about your suffering and very difficult situation!

      I did have many adrenal and thyroid tests. The standard adrenal challenge test given by the MDs always came back normal. The saliva test showed my adrenal function was pitiful. My thyroid tests have been normal but “suboptimal” when looked at by holistic docs.

      You will hear frequently that the problem with supplementing cortisol is that your adrenal glands will never start back up again. However I have been told by a number of people online that they were eventually able to get off cortisol as their health improved. So my take away is that the reason people say the adrenals never recover is that they are not taking into consideration whether the person’s root cause of illness has resolved or not.

      Personally, I’m counting on tapering off cortisol someday!

      The way I knew I needed hydrocortisone – I just came back to life after taking some! My energy was so low without it I could not perform my responsibilities. Have you read Dr. Jeffrie’s book?

      Not sure if I ever had ESR tested.

      Where would I start first? I can tell you that I have read many cases of people whose health was dramatically improved after removing amalgams. Of course, if it goes badly you could get worse in the short run too.

      Sounds to me like you have your eye on some of the right things, amalgams / moving to a dry climate, but I know that both are difficult. Maybe the amalgams a bit easier. I might try CD first, that could be the easiest of all, come to think of it…

      Eventually, I think you may need to do all of those things, but right now you probably just need a win of any size.

      Reply
      • avatar

        Lori February 7, 2016, 6:11 pm

        Hi Chris, I’d like to respond, too. I can really relate to a situation in which you are so worn out from chronic unwellness that you can’t really function. And, it’s at that low point when you feel you have to make some risky decisions. I’ve been there, too. Please don’t give up!

        Many years ago (30 now) I wound up in a psychiatric hospital for 3 months, shortly after having 15 amalgam fillings removed and replaced with brand new shiny amalgams. Within days I was in really bad shape, losing weight, balance, vision… and it only got worse. Fortunately, a kindly dentist and physician helped identify the problem, literally pinned me down and drilled out all the amalgams. That was the beginning of my recovery… but quite a long one. Today there are better methods for removing amalgams.

        However, that put me on notice that heavy metal poisoning is the top priority when dealing with any ongoing health issue. You may experience a setback when having amalgams removed (or you may not)… but metals like mercury and arsenic and others disrupt nearly every body system. I would vote that you get those gone… whatever it takes, so you can begin the detox process. I have also found that far infra red saunas help a lot… AFTER you get rid of the ongoing sources.

        This is truly a ‘peeling the onion’ situation… as you do the first thing first, and the next right step will present itself. Best of luck to you. Keep on keepin’ on!

        Lori

        Reply
        • avatar

          Chris Pfeiffer February 8, 2016, 4:16 pm

          Thanks Lori and Eric for the advice and encourgement.

          Reply
    • avatar

      Eric February 7, 2016, 5:58 pm

      If you haven’t joined this Facebook group, you might find it very helpful: https://www.facebook.com/groups/mojoother/

      Reply
  • avatar

    Lori February 4, 2016, 2:57 pm

    Hey Eric! I felt inspired to check in on you this morning, and update you on my health journey.

    I wanted to mention to the person(s) who wrote about formaldehyde, that was in fact the first piece of my own puzzle. I was SO SICK, (7 years ago) and nothing was helping. Eventually, I found an Industrial Hygienist who was convinced that my home would have high levels of formaldehyde… even though it was a relatively new home. I was desperate, and begged her to come do some testing. She spent a full 6 hours testing every conceivable nook and cranny of my home, and gave me a 12 page OSHA-quality report. My house exceeded all standards for formaldehyde, and my bedroom especially, was so high she said “I wouldn’t spend more than an hour in your home without a gas mask.”

    The main culprit was my bedroom furniture. Each piece was off-gassing, even the tiny jewelry chest I had. And of course, the sicker I was, the more time I was spending in my bedroom. Your writer was right… it took at least a year to get it out of my system and start to feel better. There are meters that will measure formaldehyde wherever you go (I have one)… hotel rooms turn out to be the worst. Any place with wood furniture, unpainted wood surfaces, and many others. The only answer is to stay away from it, and get it out of your home. I got rid of every piece of offending furniture the day after I got the test results.
    ————————

    But that’s not why I’m writing. Eric, I’m feeling better. Way better! The strongy’s test finally came back negative–but I may have mentioned that a local vet explained to me the lifecycle and cyst formation process… so my plan is to take a dose of Ivermectin every 3 months, probably for life. And do other anti-parasitic measures, just as a course of daily living.

    Last week I pulled all the carpet out of my home. I think that makes me officially “whack” as my kids say. I realize it’s off the rails, but it was the next important step because nearly every physician these days will say… first get the carpet out of your house.. Very interesting, the underside of that carpet… let’s just say… ewwwww. Mold. Animal urine. It had to go. I don’t know what I’ll replace it with. Right now, it’s kinda scary hollow… but at least it’s clean.

    The heavy metals in my body are greatly diminished, especially the arsenic. That was huge. I just had to nearly eliminate rice and grape juice.

    And it helped enormously to get rid of EMF’s to as great a degree as I could without moving to a desert island.

    But, I have been aware that something is still not right. Still fatigue, depression, lack of mental sharpness… etc. I bumped into some newer articles on iodine, and at first, said “no”. Years ago my endocrinologist warned me against ANY iodine products. Over and over she nearly shouted STAY AWAY FROM IODINE. In fact, if I should slip and eat any seafood, I was instructed to double my thyroid medication for a few days. And she was always right, so for forty years I believed she was right about iodine, too.

    But it’s haunted me, this new science. What exactly does iodine do? Iodine runs everything. Not only thyroid, but every other endocrine gland… as well as just mental functioning. I bought two books on iodine, including one called Iodine Why You Need It by David Brownstein, MD. I talked to some true believers… and, you know me, I tested myself first. In fact, I did several tests. Serum levels of iodine were “low” on three separate tests (over 4 months) and urine levels of iodine were ‘very low”. Then I did a 24 hour “Iodine Loading Test”… that was very low.

    It’s about ‘halides’… bromide, chlorine, flouride. They shove iodine out of the body. That may be at least part of the problem. It may be why I would be so exhausted after any exposure to any halide, say… chlorine bleach, or even chlorinated shower water. So, I also tested for halides… which were high. Flouride and bromide were high in me.

    In a severe and chronic iodine insufficiency, none of the other minerals work right (say, your copper/zinc). The thing is, I have discovered, you cannot just dive in and dose up with loads of iodine. This has been a slow dance. For me, I’ve taken too much at the start… and then quit because I didn’t like how I felt. But I now understand that my body has been without iodine for so long, that to resaturate, it will take at least 6 months of slow and steady. I have kind of found my groove now…

    150 mcg is what’s in iodized salt–but even with this my blood tests were that low. It’s also important to get both forms of iodine… iodide and iodine… and some people take Iodoral at 50 grams. I’m taking it transdermally now… (Lugol’s)… slowly… I found the brand where arsenic/mercury are not an issue… and I can now feel the difference. In fact, it’s a huge difference. I guess I’m finally all in. I’ve seen enough blood tests, and understand the impact of not having adequate tissue supply.

    So… I wanted to share that. It’s kind of useless to trot out the shopping list of symptoms of low iodine, because by now we all know that the same shopping list is used by the Lyme folks, heavy metal folks, EMF folks… etc. Just know that iodine is a player here….

    BTW… after some months of supplementing iodine, I took a serum test for all minerals. For the first time, ever, all minerals except selenium were exactly perfect. My iron rose (that’s been a chronic issue). Zinc/copper, perfect. Magnesium, just a tad low. This is really unexpected!

    Cheers!

    Lori

    Reply
    • avatar

      Eric February 6, 2016, 9:00 pm

      Great to hear Lori!! so glad for your surge of progress and healing :)

      I’ll be getting my ivermectin prescription on Wednesday so hopefully I will follow in your footsteps. I also live in a house with almost no carpeting for the same reasons…

      I only take 6 mg daily of iodine and would like to get a test to show me whether that’s enough… I used to take between 25 and 50 mg.

      Warmly,
      Eric

      Reply
  • avatar

    Django February 3, 2016, 7:41 pm

    My partner and I have MCS from an exposure to formaldehyde 6 years ago. It’s been a very rough time. I can definitely relate to what I have read on your site so far.

    About 4 years ago we found the research done by Rich van Konynenburg and that was one of the few things that helped us. A great guy too, we were able to correspond with him before he passed.

    However, we seemed to plateau after that and when we moved to Santa Fe a few years ago our outdoor allergies started getting alot worse.

    I just wanted to share that we do a ton of research and reading each week, we want to get better and the one thing in the last 6 months that has given us some hope is focusing on zinc and copper. Though I’d recommend the serum and plasma measurements rather than hair tests (I’m still not sure those are accurate/possible to interpret).

    The research that has helped us the most since Rich’s is the work done by William Walsh. We just finished reading his book about working with mental health cases (schizophrenia, OCD, depression, etc.) through balancing methylation, zinc, copper, etc.

    We’re not interested in any woo-woo stuff and his work is very grounded and scientific. Anyways, I just wanted to drop you a line about that. I think you might enjoy his book and as a fellow researcher/searcher I come across alot of crap and dead ends, but I think his work comes closest to complementing Rich van K’s in a helpful way.

    Good luck!

    Django

    Reply
    • avatar

      Eric February 3, 2016, 8:28 pm

      thanks Django, I’ve also had those serum/plasma copper tests and working on it. Looking forward to digging into the copper issue more after I eliminate parasites and bacterial/fungal infection – good luck to you also!

      Reply
  • avatar

    Suzy Mccoppin January 22, 2016, 8:12 am

    Did you say you have constant hunger? I have to eat 2 lbs of meat a day and am constantly having torturous low blood sugar attacks, despite having normal blood sugar readings. I’m SOOOOOOOOOO sick of eating. It’s all I’ve been doing for 6 years. Sometimes I can’t even leave the house because I need to be by food.

    Reply
    • avatar

      Eric January 24, 2016, 9:54 pm

      my constant hunger is getting better but still have a ways to go… have you done any digestive cleansing?

      Reply
  • avatar

    Lisa January 12, 2016, 2:11 pm

    Did you ever try Dr. Brownstein’s Protocol with Lugol’s iodine?

    I started November 19, 2015 and have gained 20 lbs. So frustrated. I am taking all of the companion nutrients to rid myself of bromide but they are just sitting there in the fat cells.

    Any advice or suggestions would be greatly appreciated.
    I am desperate for a solution.
    Lisa
    Missouri

    Reply
    • avatar

      Eric January 13, 2016, 9:55 pm

      no I never used Lugol’s and one of my blog readers recently said that it was very high in arsenic if I remember correctly… Worth looking into. I use Iodoral tablets.

      Reply

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"...nothing ever goes away
until it has taught us
what we need to know.
"
-Pema Chodron

"God, whose law it is that all who learn must suffer. And even in our sleep pain that cannot forget, falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God."
-Aeschylus

About


My name is Eric - I‘m 46 and saw a doctor for fatigue at 17. I lived fairly normally if a little subdued by lack of endurance at times. But then, 12 years ago I fell into a nosedive after moving to South Florida. Now, I know heavy metal toxicity is a significant source of my troubles along with genetic methylation cycle dysfunction. I spent 18 months chelating the metals out and starting up methylation but stopped when I felt myself circling the drain. Currently doing liver, colon, kidney and parasite cleanses. More about me here.

Timeline and current dosing:

Rounds completed: 28
Total chelation days: 113
Dose: 25 mg DMSA and 25 mg ALA every 3 hrs

* supplements
* hair test
* genetics
* lessons learned

"Battles are won in their darkest hours. Wars are won by learning something from each battle."
-Eric

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