My story

[I]’m 50 years old 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 including copper and iron metabolism were probably the weak links in my body that allowed, mold toxins, heavy metals and other toxins to accumulate. If that’s true, chelation likely overwhelmed my liver. I’ve worked on addressing my SOD2 flaws and restoring my liver, kidneys and gut health. 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, I felt sure I was on the right track. Now, I’m tackling Lyme Disease and co-infections, which I may have had for 30 years…

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. 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. I’m discovering that I probably was on the right track with the mold toxicity thing.

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 2018.

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.

3 year update: I’ve got Lyme disease
4 year update: making progress with mineral balance