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

403 thoughts to “My story”

  1. Hey Chris have you ever done vitamin c enemas or have any information about how to properly do them? There is literally nothing online about it.

    I just did one and I think I used to much once I finished I instantly felt like throwing up. I don’t think it will damage the large intestine as long as you use ascorbic acid because the adic is buffed.

    I also got a instant head rush I’m guessing because vit c can act like glucose in the blood.

    As for your andrenal fatigue I suggest you buy a adrenal support supplement like adrenal fix. Helped me alot. It’s has natural herbs in it like

    Ashwagandha,schisandra,bacopa monniera,Siberian ginseng,rhodiola,reLora, bupleurum falcatum, Panax ginseng,Rehmannia, coleus forskohii

  2. Hello Eric, Love that I have found your site. Keep up the good work -as it takes studying and documenting to keep it all straighten our heads!
    Note to Lori’s post: Formaldehyde is is new furniture, particularly in particle board used in flooring etc as well. It is also in wallboard….So older (not moldy ) house are my goal! I prefer to have old wood furniture (was never treated) or old enough to have off-gassed.
    Get better soon, Cristina

  3. Hi Eric,

    Just found your website today after googling MTHFR..which I have recently been tested for and am positive for. Your journey is very informative 🙂

    I’m currently working with a Functional Doctor and a Naturopath who also uses Bioenergetic medicine…plus doing hours of my own research.

    My functional doctor diagnosed me with Adrenal Fatigue / Chronic Fatigue after doing saliva tests for DHEA and Cortisol. They put me on DHEA instead of Cortisol. Have you tried DHEA? I don’t like the idea of going on Cortisol.

    I’m full of heavy metals after hair analysis and Bioenergetic screening even though I had all mercury dentistry removed from my mouth 10 years ago. Apparently vegetarian diets make people susceptible to copper imbalances as well. I recently found out that MTHFR causes body to also retain oestrogen as liver can’t effectively remove it (particularly bad for us ladies).

    Am vegetarian mostly vegan and have been most of my life…I’m the healthiest unhealthy person I know! My naturopath has put me on a mostly vegan version of Bulletproof Diet (similar to paleo but no to most grains) whilst also on a protocol to heal gut health using probiotics. Am also on a battery of supplements. My energy levels are improving and I’m able to put more time into exercise without feeling washed out.

    Have you ever tried EDTA chelation? I heard it it a gentler form.

    All the best for your healing journey.

    Cheers
    Sim

    1. congratulations on finding your way through this! I do take DHEA. have not tried EDTA – you may want to look up Dr. Cutler’s comments about it. I think he believes it’s outdated and that all forms of IV chelation are risky.

      1. Eric, could you post a link to Dr. Cutler’s comments about EDTA? I can’t seem to find it. Thank you!

        1. http://onibasu.com/archives/am/215164.html

          “EDTA can and usually will cause zinc depletion and people with mercury problems are
          invariably low in zinc and don’t absorb it well.

          EDTA is well known to be of no clinical utility for the treatment of mercury toxicity, the old
          textbooks from before DMSA say this, it is what continues to be observed.

          EDTA DOES work fine for lead. DMSA works better for lead.”

  4. Hello Eric – thanks so much for this blog. I appreciate you spreading your knowledge! Just wanted to let you know I, too, had the bottom drop out from under me a few years ago. The root was the MTHFR and other gene mutations which didn’t allow me to detoxify. I am, after a year and half of detoxing every day – from 8 metals, systemic candida, a fungal infection, chronic Epstein Barr/ mono and several viruses, radiation, and a host of other things – nearly on the other side. It is a miracle to be able to work for a few hours a day and return to a more normal existence. I went through hell – days upon days in bed, suffering, but I say this to you and anyone reading – to keep going, don’t give up, it’s painful but if you keep going, you will get back to your vital self! Also, be your best advocate with doctors by doing research. I found integrative doctors finally able to help me – after too long with myopic Western docs. Good luck, and keep going!

  5. 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.

    1. 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.

      1. 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

  6. 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

    1. 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

  7. 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

    1. 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!

  8. 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.

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

  9. 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

    1. 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.

  10. Dear Eric,

    you´ve listed that now your issues are e.g.: Metabolic disruption leading to difficulty falling asleep and staying asleep and mild anxiety. I thought after chelation, that just these problems are solved. I´m confused

    1. it’s so complicated Zina! First I should have eliminated my copper toxicity before chelating heavy metals. Second, I did not complete chelation. I may have gotten a third or a quarter of the way through before stopping…

  11. I went through all of this with my father in the 70’s which put him in a wheelchair while he spent the rest of his life losing function of his entire body. He was completely undiagnosed and we went to all of the big guys to hear there was nothing that could be done. We went to one doctor who diagnosed my father with extreme lead poisoning as that was the only metal that could be tested in those days. He did a year of chelation and never felt better. I have spent my life doing much the same and recently got a Lyme diagnosis. Just this year I found out that I have three of the four MTHFR genes mutated and I am guessing my father had the same.

    I have huge issues and although I try to behave otherwise, I am disabled. But I can tell you that a few things have put me ahead of my father was a mostly clean diet. And now with the MTHFR info I know what I can and cannot consume. It was hard for me to do as I never liked eating our furry friends but switching to meats, veggies (lots), one cup of pumpkin or yam a day, coconut products in moderation, lots of coconut and olive oil, one piece of lower glycemic fruit (and no more!) with lots of lemon and lime in water and on food (I make a yummy salad dressing olive oil and lemon or lime juice, beat with fork to emulsion, Celtic sea salt and often a clove of garlic) makes me feel the best. I am addicted to nuts, seeds, beans, coffee but if you read anything about gut healing, they have to go. No night shades and that means salsa. But what I think is going to make a big difference is I have found out that if you eat meat that has eaten grain, in the world of cross sensitivities, it is gluten. And those eggs are gluten as well unless your chickens have been pastured which means they are eating the buggies and worms in the yard and nothing else. My elevated plan is to buy that big freezer, start buying whole grass fed animals and pastured poultry (I do eat fish but only from Vital Choice and infrequently as it is pricey) so I can have the bones for broth (this will cool your inflammation like nothing else. It is my fast food and I am never without a thermos full. To make a quick meal add meat, greens, avocado, thinly sliced veggies, yam cubes…I like to do all the prep for a week on a Sunday) like from US Wellness, I am going to buy a stainless steel dehydrator like Excalibur so I can make my own jerky, dry fruits and vegetables so I have food to travel and go out and make 24 hour coconut yogurt (filled with probiotic so is one less supplement to buy). I know all of his sounds daunting but once you clear the house of everything else, it does become workable. And as far as cost, the meats are expensive but my food bill has only gone up slightly. And you will find your self eating more meat in the beginning but as soon as your blood sugar stabilizes, you will need less. Mercola has a protein needs chart which lets you know how surprising little one really needs and eating too much protein is not good. Amy Meyers MD has some really good recipes as do others but she takes into consideration the need for gut healing before all else and her recipes reflect that.

    Meyers and others talk about keeping the detox pathways open before doing anything that is cleansing. I herz all the time with treatment and I realize that this piece is not being done for me so I had better do myself.

    Diet is not everything but I am one that has greatly benefitted and it is just not a huge focus of most doctors, even our good functional medicine ones.

    There is a book on food rotation called The Ultimate Food Allergy Cookbook and Survival Guide by Nicolette Dumke. I used it 10 years ago before I deleted so many foods radically from my diet and I felt good. The premise is that we eat from just several food families in most countries while there are about 38 families. If you rotate to different food families every 4 days (some need a longer cycle), the allergens do not build up and are eliminated. I might try this again at some point although will be harder with less to chose from. The author also talks about receiving LDA therapy and I have found a MD in Alaska that has adapted this therapy to work on Lyme with a 90% success rate. I am not raring to go to another long distance medical journey (went for 5 days to Dr Klinghardt’s Sophia Health Institute in July 2015…wonderful except you need to get colonics, massages, acupuncture, lymph pant treatment, foot bath, saunas, etc, to keep things moving with his remedies breaking things up and it was not possible for me in the rural area I live in and is very expensive besides…still, I felt better than I can ever remember). However, after your initial he will work with you via Skype. And if you read his bio (Ty Vincent) you will see why I am intrigued. Oh, and he is a heavy metal specialist as well which other LDA docs are not. I am considering. Takes awhile for results (6-12 months) but could be worth it.

    Finally for now, I love your quote from Chodron. We are being taught something we need to know. We are not being punished although it can feel that way. We are being asked to know our truth. And part of that truth for me was caring for self which is not promoted ever in a society that values production above all else. And I believe we sensitives “take on” more of these incongruities as they do not compute. My most powerful meditations about seeing all these things going through me leaving me unharmed. I actually see it as a wonderful opportunity. Not all the time. I cry when alone and with my husband but those tears are filled with cortisol so there is a darn good reason to get it out! I am working on all the time. Which I think is the point. I never worked on self and now how interesting how much time I HAVE to spend on it. And you are as well with this blog, your personal work,your honesty, and kind replies. Do you notice that you are attracting kind input in exchange? You are doing this. You are moving energy on a higher plane even though you are sick and your audience is as well.

    Thank you for all of this.

    1. Thanks for sharing your story and your kind message Deborah! I’m hoping to make a documentary about chronic illness and recovery one day. so I’m hoping the blog will help me organize material for it eventually…

      What is coconut yogurt?

      I also find diet is really important for me – I try not to eat any carbs or forms of sugar including fruit. Pretty much a whole foods paleo diet without grains except for some corn cakes. However, as for allergies I’ve never discovered any really. Seems that it’s all about sugar control for me.

      warmly,
      Eric

  12. Eric and Ally–thank you! I am part of your tribe and this information is so helpful. I too finally went with the Yasko protocol after so many other things, including detoxing heavy metals, failed. My 11 year old son is so much better and so am I. Still lots of work to do. Next up–sulfur. Best of luck to all of us!

  13. Hi Ally,

    don’t know if you’ll see this, but I’d also love to ask you some questions about the Shade protocol/products. I’ve looked into it quite a bit and hear sporadic good things, but it’s hard to find many concrete testimonials. My email is sicsmoo @ hotmail.com if you’d be so kind.

    Also just want to thank you, Eric, for your awesome blog. Been reading for weeks now.

  14. I saw your “Elevated Risk” chart on http://howirecovered.wpengine.com/my-genetics/ and tried to find a comparable chart for me based on my raw data DNA file downloaded from 23andMe. I created analysis files by uploading my DNA file to Premethease, Sterling App, Genetic Genie and LiveWello. I still cannot produce that “Elevated Risk” chart at the very top of http://howirecovered.wpengine.com/my-genetics/. Could you tell my how I could obtain that information in the same form?

    Thank you,

    Jerry Heath

    1. hi Jerry, I think you’re referring to some info that came from 23andme which they stopped offering after the FDA hassled them….

  15. Ally, I’m very interested in the information you posted regarding Dr. Heyman. Do you know how to get the RG3 supplement he talks about? Are you using it? You can message me at cookecc at gmail dot com. If you don’t mind!

  16. Thanks for sharing your story, results and protocol. Who would you trust for methylation issues? not just MTHFR but a whole host of others including CBS, DAO, MTRR (18 homo/32 hetero on panel). many of the protocols conflict when you have multiple issues and have very negative affects on methylation. IT’s a constant cycle of trial and error. thanks.

    1. I really don’t know who I would turn to for help with methylation. That’s one of the main reasons I stick with trial and error as my guide.

  17. Hi Eric! thanks for putting yourself out here and providing valuable info to us all. I have a question about the fenben. I bought it and am procrastinating starting … scared to feel as sick as I did earlier this year before I started detoxing etc. I have been constipated for 20+ yrs. Chronic lyme diagnosis 2015.
    I think the parasite situation has caused my problems…as I eliminate them, I get better. I had 3 colonics over the last 3 weeks and seriously, felt FANTASTIC. Problem.. constipation which was getting so much better – there were days when I would go once a day with Beta Plus (ox bile) and digestive enzymes.
    I want to start the fen ben but am so worried because now I am not eliminating properly and am scared to trap the toxins in my intestines…. any suggestions would be helpful.
    PS – If another doctor tells me I need more fiber or drink more water, I may commit a crime. lol.What is coming and has been coming out of me is no joke and I just have to mentally separate myself from it to get through this. Thanks again for any help and feel good…you got this!

    1. Hi Ginger, finally, a problem I know how to solve!

      If you take enough magnesium, you’ll loosen up. Anyone with chronic illness or stress in their life needs more magnesium anyway so it could benefit you greatly in addition to loosening you up. Try to find magnesium glycinate or bisglycinate (same thing) but if you can’t find it try magnesium citrate which is everywhere.

      Divide it up during the day and take it in between meals. I take 200 mg an hour before breakfast, 400 mg an hour after breakfast, 400 mg an hour later, 400 mg two hours after lunch, 400 mg an hour later, and finally 200 mg two hours after dinner…

      But take the amounts that work for you.

      Thanks for sharing your story.

  18. Hi Ally! Thanks for you excellent comment! I have been a Cutler follower for the last 7 years. I tried the protocol after having 7 amalgams removed but grew more and more sensitive. I deal with mast cell activation and histamine intolerance. I have been hearing about the Shade protocol for a while and would love to discuss the differences in the two protocols with you off list. If you’d be so kind to email me at stetlaw77 @ aol.com (no spaces). Thanks so much and Happy Holidays!

  19. Hi Eric,

    Thanks for your blog. I’m 47 and my story parallel’s yours, almost exactly. The only difference is that I did not get better using Cutler. I’m currently using the full Yasko protocol coupled with Chris Shade’s QS mercury detox (you should ck out his presentation at AutismOne – hands down the most educated metals ligand chemist in the world! He understands cellular and systemic detox better than just about anyone). Anyway, I’m tolerating this protocol so much better than I ever did Cutler. And it’s so much more humane (no night dosing). Mercury (13 amalgam surfaces) and lead etc etc were the root of my problem. No doubt about it. I had my amalgams improperly drilled out in 1986 before anyone knew better, so…. Just like you, I became more and more retention toxic, likely because of genetic and epigenetic challenges, so much so that my whole professional and personal life just about ground to a halt, despite all my dietary modifications, healthy lifestyle habits, etc… Just like you. I am also VERY compromised from mold toxins (unfortunate exposure). Quicksilver Scientific’s liposomal DIM, more than anything else I’ve ever taken, actually lifts those toxins off the NRF2 and allows us to detox. It is absolutely amazing. Taking DIM I can also take lipo glutathione and C with R-lipoate with no problem! You should check on this. Brilliant finding. And I also was on Cortol Ace and Isocort for 10 years – using that for energy, until I recently saw the work of Dr. Andrew Heyman “Stress & the Brain” on youtube. He says the new thinking is that the body is intentionally trying to keep cortisol levels low — to protect the brain. Says that taking glandulars and cortisone is like throwing fuel on the fire. Yasko’s supplements (the basic ones) allowed me to transition away from my dependency on adrenal glandulars with no problem. Very interesting theory. Worth your time and consideration. And finally, sounds like you’re onto the importance of methylation and upregulating the whole detoxification protein repair super system — that figuring out where you get trapped or derailed is so important. After years of trying so many different things, I’m finally forking over for the kind of help that has completely recovered people much worse off than me. And I’m half-way there. : ) I think you’re on the right track. I would, however, talk to Chris Shade and/or look at his webinars and talks on youtube. Cutler is an OK protocol but my best friend was chelating her daughter (autistic) for 3 years with Cutler only to find that she hadn’t moved but a small amount of the mercury (10%) out of her daughter’s brain. And she was religiously dosing with DMSA and using ALA. Chris Shade’s stuff is smarter, in my opinion. Best of luck to you.

    1. wow Ally, what an amazing parallel! I am going to try talking to Chris Shade next year when I’m ready to go back to chelation, thanks for sharing and please post updates for me 🙂 thanks and kind regards, eric

    2. Ally, I’d like to hear who helped you figure out how much to take on Dr Shade’s protocol. I just watched the utube and I’m very interested.

  20. Eric just wanted to share with you how helpful your website has been for me in my own journey in trying to recover from chronic fatigue syndrome. I read somewhere that people who have unlimited financial resources have the greatest chance of healing and although I think there’s some truth in that i think you also need to have a certain amount of brain power to figure all this out due to the complex nature of our illness. I’ve often thought that the worst thing about this illness is how self absorbed it’s made me. But how could that possibly be any different? I have no life so of course I’m going to be consumed with trying to find a way to change that. It’s the proper use of the energy i have. Thanks for everything you’ve done for the rest of us who struggle with this.

    1. thanks Susan, you are very kind and it’s great to hear my website has been helpful! I do believe unlimited financial resources would be very helpful!

      My financial picture has changed a lot during the 13 years of my illness – there have been long periods of times when I did not spend money that I thought I should spend for lack of it. And other times when I have spent loads of money that just went down the drain.

      Now, I’m kind of in a middle ground where I can afford moderately expensive things like the ozone equipment, but financial stress keeps me working hard which makes it impossible for me to go full blast with the detox. I have to drip it out slowly…

      The financial one is quite an interesting question! The thing is, you need money to experiment to get through all the things that are a waste of your time and money in order to eventually find the things that work and are important to spend money on (which might not cost so much).

      warmly,
      Eric

  21. I’m interested too, Nathalie! A good friend of mine has Gillbert’s and can’t tolerate anything for detoxing. Would you be so kind as to email me at stetlaw77 @ aol.com?

  22. B-12 deficeincy is commonly associated with parasitic infestations-roundworms, hookworms, whipworms, liver flukes, etc. They feed on B12 and iron which would be a true reason for being low. B12 deficiency is not a diagmosis-it’s just a symptom of a greater issue. Parasites are not a 3rd world country thing. They are right here in the US.

  23. Nathalie I would like to know how you cured yourself of mercury poisoning. Can you post here?

  24. May I also draw your attention to geopathic stress? This is radiation from underground streams, ie non man made. It especially affects people when they are asleep. The body drops its waves during sleep, making it vulnerable to higher frequency radiation. Dousing the building can remove geopathic stress 90% of the time. The Germans discovered it. They couldn’t understand why entire streets had so much cancer. The radiation from fast running Underground streams was responsible. Just wanted to highlight the issue because people who are sensitive to EMF are often affected by GS as well. Dr Jacobs practices German Biological medicine and he can detect the presence of GS in your body using his machines! But he’s based in the UK. Let me know if you want his contact details. Hope you continue to make steady progress.

  25. Thanks Eric, I’ll do that.
    By the way, if you are interested Id be happy to share how I cured myself of Gilbert’s syndrome, mercury poisoning, and bipolar. I’m completely symptom free. I have zero toxicity in my body. The practitioner who helped me is based in the UK. I tested positive for methylation problems, but I think this has been corrected along the way via the treatment I was given.
    Nathalie

  26. Hi Eric,
    I don’t suppose you could tell me how I could get in touch with Brad who recovered from Bipolar Disorder.
    Thank you.
    Nathalie

  27. Hi Eric,

    We have so much in common, it’s pretty scary exactly haha!
    I start next month with Andy’s Cutler protocol. I wonder how many rounds you did and if your health is improved?

    Thanks again for such an informative website!

    Jason

    1. I completed 28 rounds and my health did improve! I still have a long way to go however and hope to start chelating again next year…

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