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. Hi Eric,
    Great job consolodating all the info. Can the source naturals dibencozide be subdivided into 1/4s? I am starting the protocol.
    Thanks

    1. Hi Eric,
      Did you just sub the pure encals b complex with b right, since pure encaps has more methylb12. Do you still take 2 at first or one? What was the difference in effect between b right and pure encaps?
      Thanks
      Lefti

      1. I never used any B complex – I take individual B vitamins… Since I’m also following Cutler protocol, that was the easiest way to follow the recommended quantities. My wife and kids do use the pure encapsulation’s B complex however.

    2. Hi Eric
      I came across your website recently and can’t thank you enough for the insightful information that you have provided and can appreciate all your hours and hours of research and reading.  A little about myself.  I will try to be brief but it is difficult.  After about 8 years of suffering and depleted the medical industry I finally diagnosed myself with mercury toxicity due to my many, many symptoms.  I found a homeopathic practioner who listened to my history and got a hair text for heavy metals which  resulted in significant mercury toxicity.  The first thing I did was order AC’s AI book and read it thoroughly since I knew nothing about mercury toxicity.  It was very helpful in what to do and what not to do.  Unfortunately my practioner and I agreed in what Andy said and started out at 100 mg DMSA and 100 mg ALA.  Way too high a dosage which is what I am finding out reading everyone’s experience with their rounds.  While I was waiting for my order of 25 mg dmsa I started a round of 25 mg ala every 3 hours for 3 days and was tolerable. 

      I have been basically very healthy my whole life (am 61 yrs old and feel I have a late start on the chelation but realize it needs to be done to get better) and have been taking supplements most of my life so I feel that I have a head start on this protocol (milk thistle, magnesium, vit d, vit c, probiotics and digestive enzymes (have leaky gut).  I have read the entire post on methylation protocol and realized that several of the symptoms for B12 deficiency are very similar to the mercury poisoning symptoms so feel that the methylation protocol would help me.  I also understand that I can do both the chelation and methylation protocols at the same time.  I have ordered the B12 complex from Pure encapsulations which is a combination of the abd12 and mb12.  My question is I read that you should only start the abd12 first and then ad the mb12 later or can you take the combination formula?

      I have symptoms that I have not read about anyone else having due to the mg.  I have suffered from severe groin muscle pain for quite some time and nothing I take for it seems to go away.  Does anyone else suffering from mg poisoning have this issue.  I also have chronic pain in my hips and back.  I’m assuming that this will probably not go away until I get rid of the mg.  I am quite scared and concerned that this will not go away after the chelation process.  How do you know which symptoms are irreversible?  All the info is overwhelming as I’m sure it was for everyone just diving into this life with mg.  I am able to exercise and walk everyday and also try to go to the gym a few times a week. 
      I appreciate any help anyone can give me.  Thank you for listening.

      1. hi Marilyn, glad you have finally zeroed in on your diagnosis! yes you can do methylation and chelation at the same time. Everyone reacts differently so I will just tell you my personal experience is that while I am doing both at the same time, it can be difficult and complicated at times. And, last year I took two months off of chelation to work on methylation.

        I wouldn’t worry about the combination formula from pure encapsulations, it’s a reasonable place to start in the quantities are low. When you take mb12 orally, very little is absorbed anyway. Try one at breakfast for a couple days and if it goes well, add a second at lunch. Then wait a few more days before adding anything else…

        I also have muscle pain and tendinitis and dearly want it to go away. I have not heard of groin pain but I’m not the most knowledgeable either. The FDC forum would be the place to ask that question.

        Hope this helps…

  2. I stumbled onto your blog and the similarities between your story and mine are striking! I am 44 and have been sick since I was 17. Housebound for many of those years, and now bedfast after a bout with the flu last year. I have many amalgams and 2 are cracked. I am also on cortef. Horrible stuff but keeping me alive for now. Desperate for help, I found Fred’s methylation protocol. Would you answer a few questions? I thought ALA was bad if amalgams were still in place? Obviously I am in no position for removal. Is doing the methyl protocol worth it for you? 

    Also-has the higher potassium bothered your adrenal function? Dr. Lam told me to avoid it, and now I think low K is part of the problem. Did you do glutathione? He had me on it and I crashed badly. 

    Was 23andme worth it? 

    Who did you do the aldosterone urine test through? your doctor? My doctor (functional medicine specialist) of ten years has given up on me. Told me to preservere on high doses of cortef and said see you in 6 months. sigh….

    I have all the basics in place and was already taking jarrow b12 but Fred said to switch brands. (Missed that on the threads). Fred is a genius and I pray and hope he’s right. 
    There are thousands of blog entries and threads and I just don’t have the ability to assimilate all of it. I would really, really appreciate any input. I know you’re very busy. Please don’t feel pressured. Any help is greatly appreciated! Thank you.

    1. Very sorry to hear about your situation Dot! I think I’ve read that cracked amalgams are really bad news. I remember hearing from someone that she developed some paralysis after cracking an amalgam but didn’t make the connection until she had the amalgams removed and immediately could walk again. Seems to me that getting your amalgams out should be a top priority and I hope you’ll read this: http://howirecovered.wpengine.com/mechanisms-by-which-mercury-causes-over-30-chronic-health-conditions/#removal-of-amalgams

      Do not take ALA with amalgams still in. You need to remove them and wait three months before you try ALA.

      I think the methylation protocol is helping me a lot but have to say that I’m running on a lot of faith there. Every time I increase doses, it’s unpleasant. Then the startup effects fade away, but I’m still fatigued and fighting.

      I don’t think high potassium intake has bothered my adrenals, but couldn’t say for sure. I don’t do any glutathione or precursors because of Fred’s warning against it. I did the urine test through my MD and gave up on him when I got the results…

      Have you reacted at all to the B12?

      1. Thanks for the response, Eric. Unfortunately I too in unwell to get them removed. I have been bedbound a year now. I haven’t noticed anything yet with the b12. Is there anything  that can be done to mediate the mercury until I am well enough to have them removed? Thanks for your input. 
        Dot

        1. Sorry to hear that, I remember what that was like. What ailments would prevent you from getting them removed? I’m thinking that maybe you could find some workarounds that would get you through the procedure… Maybe with the help of family?

          Dr. Cutler’s support supplements are all designed to counteract mercury – I’d suggest getting a copy of his book. I’m taking all of the core supplements and some more. Core supplements would be all the antioxidants, zinc, molybdenum, etc. How much B12 have you taken? What form and brand?

          1. I ordered Dr. Culters book on amazon. I can’t make it to the bathroom most days, a dentist is out of the realm of possibility for now. I just got the enzymatic therapy b12, had been using jarrow for a week before. Taking the core supplements as well. Heres hoping it works! (btw-I have 10 amalgams, most 20yrs or older. I’m screwed) 
            cheers!
            dot

    2. Since I am not under the care of a doctor, seeing my 23andme results was very impactful for me – built my confidence that I’m on the right track… have not made any changes to my protocols as a result, but feel more comfortable that I’m doing the right thing.

      Would suggest you join the frequent dose chelation group on Yahoo to get some feedback about your amalgams and where to go from here.

      1. Quick question…do you take CoQ10?
        If so, have you noticed bp rises like Fred did? 
        Thanks for all the info ansupport! 
         

        1. I take 60 mg of CoQ10 five times a day and have not noticed the rise in blood pressure – my blood pressure is still too low. It was rising at one point but I can’t figure out what caused that. I’m still trying to repeat it but haven’t figured it out.

  3. Eric,
    Congratulations on all of the hard work.  You have done an amazing job self-healing.  It takes a fighter to endure such a challenge.  I am hoping to add a piece of the puzzle that seems to be absent from your trials.  That piece is oxidative phosphorylation, or mitochondrial respiration.  In laymen’s terms, you are suffering from low metabolic energy.  This -in my opinion – is from either low mitochondrial function, low mitochondrial number, or the combination thereof.

    As backwards as this may sound, sugar and oxygen (in the presence of C02) can go a long way towards generating heat and thus ATP.  While many hear “sugar” and are worried about feeding candida or other pathogens, they are often not aware of the changes made to the terrain of the organism just by generating adequate thermogenesis.  Once the body is warm enough, the yeast will not be able to thrive in vivo.  In addition, as Otto Warburg demonstrated in his cancer theory, the presence of O2 is often enough to kill microorganisms, and frequently cancer as well; something many theorize is actually a manifestation of candida.  

    Low metabolic energy via low levels of cellular respiration often both mimic and/or cause presentation of subclinical hypothyroidism.  Hypogonadism may be a mimic as well, as the two are often interconnected.  This creates a state of estrogen dominance (and often low testosterone), thus causing the extra estrogen to limit thyroid function, hence the limitation(s) in metabolic functions such as those in the liver where the estrogen is actually broken down and detoxified.  As this happens, the body gets cold and the metabolic rate slows.  Enzymes change shape and thus function due to the lack of proper temperature, and energy is further impaired.  

    Now, with the introduction of sugar, salt, oxygen, carbon dioxide, B12, GSH, calcium, copper, magnesium, and adequate caloric content, cellular respiration begins to restore.  As it restores, metabolic rate increases, thyroid output is greater, estrogen dominance diminishes, and testosterone begins to rise – as does heat, positive mood, energy, and motivation.  

    Do not eat any foods that make you cold during this time.  Eat foods that do not overstress your personal metabolism or metabolic rate.  You need energy to be greater than stress at all times – this includes both internal metabolism and external environment.  The process of warming cold food takes energy.  This can only be afforded by those with proper thermoregulation, occuring within the confines of a working metabolism.  

    Please take note that it is imperative to restore mitochondrial function – COQ10, magnesium, ALC, and D-Ribose(a sugar) may be of great use.  As the existing mitochondria are being restored, mitochondrial biogenesis – or the creation of new mitochondria – will be a logical next step.  Supplements like PQQ and querceten, among others, are worth a try.  As new mitochondria are being made and old mitochondrial machinery restored, the cell membrane must be tended to.  It is crucial that this is neither too permeable, nor too flexible.  The goal is for nutrients to enter efficiently, while waste products may exit just the same.  

    Fish oils and B12 are a good start. To reduce the stress – which diminishes energy and thus the efficiency of cellular respiration – try GABA, meditation, or anything else that has a calming effect on the HPA.  Trapped emotions are better expressed too, as they are a waste; the brain uses most of our glucose and oxygen.  Finally, everytime you are stressed or low on energy, eat something calorically adequate that is both sweet and salty, while relaxing your mind and body.  

    Believe you will get well.  You are very close to solving the puzzle.  Each day a step closer.  Each day more miraculous.  Hang in there for the remainder of the journey and please keep this blog going so others know the real and often slow process of a true recovery.  Awesome job again, man.  You are going to win.

    1. Wow Adam, thanks so much for your kind words of encouragement and super interesting advice, I’m touched. I’m very interested especially in your mention of PQQ and quercetin. Mitochondrial function has been on my radar for a long time but I haven’t known what else I could do about it…

      The idea of taking flavonoids like quercetin showed up in my research into genetics after getting my 23andme results when looking at my ACE Del16 snp. That mutation may cause high aldosterone and magnesium and potassium wasting, so now I have two reasons to try quercetin!! A number of my mutations also favor estrogen which you also mentioned. I am already getting great use from the COQ10, magnesium, ALC, and D-Ribose that you mention so I think you are right on target.

      I’m very curious about your situation… Do you suffer from CFS too?

  4. ADVICE FOR AMALGAM REMOVAL PREPARATION? Hello all, I will be getting my 2 amalgams removed mid January. I have severe adrenal exhaustion due to mold poisoning last year and a lifetime of adrenalizing due to an anxiety disorder from childhood. And the mercury hasnt helped Im sure! Can you all give me advice on which 2 supplements would be optimal for preparing for the removal and for continuing to de-tox aferwards? I can only afford 2 right now and am already taking Vit C., selenium/multi-minerals but not yet tried ALA, glutathione or NAC which are all recommended by the IOAMT dentist that is removing them. Im not doing the extensive Hal Huggins protocols because I cant afford them. I have previously done a 2 month de-tox last Summer with daily Zeolite and just finished taking a supplement 2x a day called Total Chelate for the last 2 months that has 200 mg EDTA, 15 mg inositol, 25 mg choline, 10mg betaine, 10 mg beta sitosterol, 15 mg Lipase, 15 mg, DL methionine, 50 mg pectin, 200 mg irish moss, 200 mg garlic,  10 mg niacin, 10 mg vit b6, 100mcg biotin, magnesium zinc and selenium. Any advice on this would be greatly  appreciated:) May this new year bring us renewed health and energy….Starla Dean, Santa Cruz, CA

    1. Hi Starla, don’t take any chelators before getting your amalgams removed – that’s dangerous! And don’t take advice from your dentist on detox and chelation!! Join the frequent dose chelation group on Yahoo, introduce yourself and let them guide you. You’ll get much better advice that I can possibly give…

  5. Hi Eric,
    just wondering, do you have any side effects from HC? also can you explain in more detail bow much more energy HC gave you? like before, were you bedridden and know you can walk a lot- how much more activity can you do? I have Adrenal exhaustion among other issues, pretty much bed/bedroom ridden past 3 years. I have avoided HC until now due to fear of side effects, but now am considering it. also, i was told men generally need around 30 mg per day on the NTH adrenals yahoo group, STTM says 25-30. have you tested aldosterone, electrolytes?
    Thanks so much for sharing your healing journey, it is so helpful!!! Best wishes on a complete healing to full vibrant energy and health!
    Ron

    1. No, I don’t believe I am currently experiencing any side effects from HC. In the past when I was using Isocort and taking larger quantities I ruined my stomach lining gained weight and had some insomnia from it. At 15 mg my current dose is pretty small and I want to keep it that way so I will be more sensitive to improvements or decreases in my energy level related to chelation and methylation.

      I have tested aldosterone and electrolytes and everything was fairly normal except for very low DHEA and high cortisol.

      If you are bedridden, there is probably little harm in trying out 15 to 20 mg of HC. Just make sure you always take it with food or a large amount of water and watch out for any signs your stomach is unhappy. Can’t hurt to take it with something that counters acid like magnesium. You should also split it up as best you can, for example taking 5 mg at breakfast lunch and dinner. I’m using this one.

      If you can avoid taking a full replacement dose which might be 25 to 30 mg, you probably should, because that’s when your adrenal glands can stop functioning…

    2. Ron, just noticed I forgot to answer your question about activity level. That’s a pretty hard thing to measure. I can sit at a computer and work in a quiet room for an eight hour workday and handle a few phone short phone calls. I can do about 90 seconds of exercise on top of that. And if I slept well the night before and I get a nap, I could probably squeeze in an hour long shopping trip also. Anything out of the ordinary would put me over my limits, that is any additional stress of any kind, physical or mental. On weekends, I always exceed my limits. I can exceed my limits for a couple days before I get really rundown and need to cut way back. When I need to conserve energy, I go into hibernation and try not to go anywhere or talk to anyone, lol.

      1. Hi Eric, just wondering, if you were not on HC, how much energy do you think you would have? you wrote in “my story” that you went from 20% to 60-70% functional but then said HC only gives a boost for a few hours. So just wanted to clarify.
        Thanks again for all your help. By the way, on the adrenal websites I mentioned, they said 15-20 is too low a dose bc when the body gets HC it turns off its own feedback system so when you take 15 mg the adrenals stop producing any cortisol and adrenaline pumps to make up for the missing cortisol. With a full replacement dose adrenaline does not pump. I read a lot of people have weaned of 25-30 mg, however they are also on thyroid hormones.

        1. “you wrote in “my story” that you went from 20% to 60-70% functional”

          That was five years ago when my cholesterol level was at 99 and I was extremely ill. I’ve come back a long way since then. I don’t know where I’d be without HC now. I’m hoping to taper off it as I heal through methylation and chelation.

          “they said 15-20 is too low a dose bc when the body gets HC it turns off its own feedback system so when you take 15 mg the adrenals stop producing any cortisol and adrenaline pumps”

          I know what it feels like when adrenaline pumps. It stops me from sleeping and I’m not currently experiencing that. I’m also not doing any significant physical activity and I am concerned that I may not be able to without a boost in HC. Not sure what I’ll do yet if that happens, but I’ll cross that bridge when I get there.

          About 18 months ago I did increase my isocort in order to handle more physical activity, but then I tapered down when a test showed me high on cortisol and I was feeling better through methylation and maybe iodine.

          Have you read “Safe Uses of Cortisol”?

          1. Hi Eric,
            I have not read Jefferies book but I read summaries of it. I think I remember reading that he allows 20-30 mg per day of HC, but for sure less is better if one feels good on it.
            Ron

  6. Hi Eric,
    I heard isocort has been discontinued for now. are you still taking it, or are you taking an alternative?
    Thanks,
    Ron

    1. hi Ron, I did switch to hydrocortisone – something I had been wanting to do for a long time, so was glad about being forced to do it. The switch went very well, no hiccups at all…

  7. Hi Eric,
    I’ve only just discovered your site. It is so extensive (in is great, but daunting) I don’t know where to begin really!
    I am 29 but less active than someone thrice my age. I have severe and rapidly worsening CFS, alongside autism, Hashimoto’s, and PCOS. After falling seriously ill last summer, what was moderate CFS now was elevated to severe and now has me utterly brainfogged 24-7, and too weak and stiff to perform even basic tasks without support. I have mercury and lead toxicity, ammonia toxicity, and everything that backs up a genetic and cause for CFS.

    To be honest, I think I would commit suicide if I had the energy; this isn’t a life. I have nothing any more and whatever I try to do to help myself, despite researching quite extensively over the last year, makes no difference. I am just so confused, because having so many SNPs, and so many other conditions, supplementing one thing contraindicates another. It makes me feel utterly hopeless.

    I would just appreciate it if anyone could advise me where to begin again. Metals first? But don’t chelators contribute to sulfur and methyl issues (both of which I have)? Methylb12? Adenosylb12? How do I know if I can tolerate those or if it’s too soon to start them? What about having lithium in place? What about olther key supplements such as b6 and glutathione, both of which contribute to various issues I have?

    People here are looking for positivity; they don’t want to hear misery, so I apologize for everything I’ve just said.  If anyone can offer anything in the way of advice it would be much appreciated.

    1. Your story is heartbreaking and I’d strongly encourage you to join this group before you do anything else. You’ll get very extensive help there if you introduce yourself and give lots of details so the moderators and old-timers can advise you well.

      You want to include information about your dental status, had your amalgams removed? checked for any possible hidden remaining amalgam? What tests did you do that showed you have metals? What have you tried in the past? What supplements are you using now? What is your diet like? etc

    2. Hi,
      First Happy Holidays and hopefully a healthier new year for all of us.   Second, thanks to Eric for providing a forum where many of us sufferers can go and learn – so thanks for keeping the hope alive.  For ifOnly and Sherri and Martine, you are not alone.  I know that does not make it easier, but there are people who have been there and gotten better and are willing to help.    Believe me I understand, there were days I did not even think I was going to live until the next day (not sleeping for 72 hours on top of severe depression and no energy).  Finally, I found some help with the sleep (so I recommend starting there).  For me, it was a combination of 150 mg of Trazodone, 20 mg Nortriptyline and 25-50mg of Klonopin.  My sleep isn’t perfect, but I can notice a huge difference between the days I sleep well and those I don’t.
      Good Luck and Keep Searching.

    3. Hey ifonly,
      just wanted to say that I read that autoimmune diseases like Hashimotos often involve leaky gut syndrome and celiac disease, and often respond well to the GAPS diet, paleo diet or raw food diet. Also one lady said Tong Ren therapy cured her Hashi in 5 months http://www.synergy-healing.com/tongren.html. Another great website is Stop the Thyroid Madness, which talks about Hashis and probably PCOS. Their Facebook forums are awesome, so many people share great info. GAPS diet  is also great for autism. 
      Wishing you all the best and immense courage and strength!
      Ron

      1. Keep up the good work. I am 26 years old and have come to the conclusion that I suffer from this as well.
        Waiting for a DNA test from 23andme.com. I am quite sure that I am undermethylated and that I have excess heavy metals in my body.

    4. Hi ifonly!
      i really understand your feelings! You sound like me a few months ago! I have had CFS for 8 years now that has progressed as yours has, I also likely have Asperger’s but am too sick to get the eval. (I have a child with autism, so I’m not just thinking that without reason, and as information came out on girls and women, what seemed like merely characteristics seem pretty clear I’d get a dx from a someone who knows how to dx women).

      I also suspect mercury and have several cracked amalgams and am in the same situation as another s commenter here: too sick to go to the holistic dentist, and lack the money…
      anyhow,this is long winded, but I think if I were you I’d click on Eric’s Methylation link on the sidebar and start with that. Using Fredd’s protocol.

      I started with Rich VK’s simplified methylation protocol a years ago or so, but it was not informative enough for me, and Eric’s excellent overview helped me because prior to that I couldn’t follow all of Fredd’s info. My brain was so bad! 

      I found this blog in, I think September this year. I was the closest I felt to actually dying than I ever had since I got this. I was very ill and sensitive to almost Everything: supplements, food, everything. And like you as hopeless as I’d ever been,
       
      In addition to reading this blog I have found others over on Phoenix Rising who are like me, very sensitive to supplements and have many troubles.

      So I have gone very low (dose) and slow. Adding each thing at a time  starting with the vitamins. Individually, not multis because inevitably any I bought would have something that made me horribly ill. (And not start up symptoms)

      I’d follow Fredd’s list of supplements and not Eric’s because the autism adds that extra sensitivity: sometimes lower rather than high doses are much better tolerated, and if things go well after time enough, you can always add supplements from Eric’s list or increase doses etc…

      You also might do the b vitamins individually like I have, (rather than the recommended b vitamins supplement) as some b vitamins still make me horribly sick. Re reading

      Eric’s methylation post gives me more ideas on why that might be and what to try next to help that, currently I take some every other day, and some once a week and another one once it twice a month!

      I am just now ready to start the methylation supplements, according to Fredd’s protocol, but had been on prescription mb12, m folate and p5p thru metanx but went off it, added went to adenosylb12 and l carnitine fumarate this last 6 or 7 weeks. I really like the adb12 and l carnitine fumarate. 

      I also added /got to the zinc (in the form of  zinc monomethionine) 30mg and my sleep has been restored so much! I’ve been on that now for a little over 3-4 weeks. I was so bad I had intractable day night reversal for over two years. I now yawn at night starting around 10 pm. And sleep by 2:30 am. i know that doesn’t sound great but what I had before, I could not fall asleep until 5-9 am! I tried everything. And when I wake up I feel much more like I have had sleep than I have in 8 years and I don’t need two to three hours to wake up-function (at what little functioning I have)

      Anyhow, by going low and slow I can more easily note the effects and work my body up. I currently have the oddest feeling of feeling better inside but still no energy and still can’t function well physically. But I feel much much more hopeful.

      I don’t do well with:
      inositol
      thiamine
      niacine/niacinamide
      riboflavin
      phosphatadyl Serine (switched to Phosphatidyl choline instead via Now brand sunflower lecithin which worked great for a year and a half: reduced brain fog tremendously as well as migraines)
      *selenium at the usual dose of 200 mcg. I seem to need it at 50 to 100)

      These are off the top of my head.
      i don’t do well with Sam-e or TMG but do well with d ribose and l carnitine fumarate. I know we are all different, but I just wanted to share What ones put me into non-healing hell, so you won’t feel bad if some recommended items don’t work and in following Fredd’s links in Eric’s article I found that some people do ok with one or two of the important co factors and not others…

      for my gut I can’t handle most remedies, just DGL licorice and the only dairy I eat greek yogurt. Everything else tears up my gut and is incredibly painful.
      if you have adrenal/thyroid  issues: I take Tri-iodine and Jarrow Adrenal Optimizer. These might be less harsh on the metabolism. Sort of a step below the hydrocortizone or cortif route and the Armour thyroid route. Kelp didn’t help me at all. Armour thyroid threw my adrenals into failure. I tried many things until I settled onto the combination i take above, and do feel they help me best.

      I wrote all this since being on the autism spectrum often throws monkey wrenches into how the body metabolizes vs how neurotypical s do…
      for diet I do best on on a more paleo (lots of meat) diet (organic, no hormones, local etc) netflix has the documentary opposite of ‘forks over knives,” that might be helpful. I forgot the name but it’s about eating paleo diet. I get sick on most vegetables except organic root vegetable, cooked.
      I have a small glass of salt water a day. Or every other day. It helps with dizziness, orthostatic intolerance, and the firget the name: blood thickening condition with my MEcfs, Etc  

      not sure if any if this helps, but I feel much better going low and slow and one at a time building up first the regular vitamins and minerals on Fred’s list and then starting the methylation supplements as he advises. (I go 3 days to a week, or up to 3 weeks on a each new item)

      i highly recommend the adb12. It does seem to be easier on my body than the mb12. So if you have to start with just one, you might start with that for a week then add the mb12…

      anyway, you asked for ideas on where/how to start, with all this information and conflicting needs. And based on my experiences and metabolism, this is my suggestion. I do feel stronger, though, not strong enough or functioning enough  yet to tackle removing the amalgams and then starting with chelation. But I feel like I can do  that in the future and feel much less hopeless than I did in September. I do feel progress though I’m not yet out of bed/out of the house more than I am in it yet.
      but, I have had a few hours here and there where I felt like myself again-the self I was before I got sick. 

      And I have had  nights of real sleep! And reading Fred’s story makes me realize my bad days now are healing days rather than going further into sickness days.
      i wish you very well!
       
      sorry this is so long! I can clarify anything that I might have written confusingly.
       
       
       
       
       

      1. Glad to hear about your progress Delia! By the way, I also started low with most of my supplements and titrated them up. I’ve been working at this for a year now…

        1. Oh I do realize you start low and titrate up! But even your lows were way too high for me, so I just wanted to encourage Ifonly, that if they have to go even lower and slower it doesn’t mean things aren’t or won’t work for them.

          In September I started some of mine at, I think,  at close to following yours. It didn’t work out well, for me. At all. Having that autism gene might be the reason.
          I also can’t do both the Chelation protocol and methylation at the same time even if I had the money and functioning. I have found my metabolism that fragile. And my child with autism has always been very fragile with MEDS or supplements.

          So I just wanted to encourage Ifonly. you have provided such great help here, and I think it could help them, and since they asked where to start, I thought your compilation on Fredd’s protocol first, might be the best Place to start.

          And build themself up before tackling the methylation, just based on my experience with the autism.
          thank you again for this blog and all your help! 
           
           
           

          1. That was very kind of you Delia to write at such length for IfOnly. I’m glad you found better doses for you and I should say too, that I started these protocols five years after hitting my low point. For five years, I did nothing but try to eat well and exercise as much as I could.

            Had I started the supplements back then, I’m sure my tolerances would have been very low for everything. To give you an example, five years ago my doctor suggested I take phosphatidylcholine. I tried, but at the time, I could not tolerate any amount of choline and now I’m taking close to 3 g a day…

  8. Wow! Great site! You really have a good handle on all this. (methylation, chelation, high & low thiol foods, etc.) If only my formerly-Mensa brain was still working and I could process and retain all this great info! I am new to all this and feel like I’m never going to get through it. (45 y.o. female, hair test showed elevated Hg, exposed as a child with 6 amalgam fillings, played with a broken thermometer, tons of vaccines and allergy shots, had amalgams removed over several years but not done properly, basically about as Hg toxic as a person can be) But I am inspired by people like yourself and all the others on the FDC Yahoo group. I hope I can hang in there and get strong enough to start chelation soon. I had a failed attempt at my first round two days ago (ALA 1mg every 2hrs for only 12 hours) and am feeling hideously bad now. But I am glad I found your site, and maybe tomorrow I’ll feel better enough to digest everything. I know I am thiol-sensitive, but it’s worse some times than others. Today I ate a small amount of goat milk yogurt. Felt indescribably bad after that. So I will go through your lists of foods to eat and to avoid and hopefully never feel this bad again. I feel very hopeless right now, but I don’t want to die. I want to do whatever I need to do to get through this. I just feel so alone even though the FDC folks are very supportive and helpful if that makes any sense. This is such a nightmare and the only people who can understand are those who have been through it or are going through it. 

    1. Hi Sherri, thanks for writing and for the compliments:) I know what you mean about feeling alone, even when we have people helping us. It’s hard not to feel that way when the people around you on a daily basis are healthy or appear to be healthy! And when you’ve been sick for years day in and day out, well it’s just punishing and has a cumulative effect on your psyche.

      But, hang in there, it sounds like you are at a turning point even if you can’t feel it yet, knowing the cause of your problems and what to do is a gift.

      Not sure what advice you got from others but you may want to try a three-hour schedule at first. I find the two-hour is more intense.

  9. Eric, I just found your site. It’s like holding a mirror up to myself, truly. I am at that desperate stage. I have “gotten” the fact that I have genetic/detox/methylation issues (all the classic snp’s)…my brother is Autistic, which also proves out my theory (and yours) and that there is a correlation between CFS and Autism and that Methylation and metal (and other) toxicity, coupled with decreasing Methylation factors and co-factors are the root cause. I’m so encouraged to read your story, and see that you are having success with your current protocol. The missing link for me is that I haven’t ever tried the metal detox (Cutler) protocol, even after testing years back showed very high metals especially Mercury (in the blood). This was before I had my 2 fillings safely removed and more recently my metal bridge.

    I now want to get the hair test and see what my metals load is currently.

    I’ve been ’round the block and back with various doctors (haven’t seen Galland, who I know is supposedly very good…too expensive) here in NY for years and years and years. Some of “the best”, and none of them properly address the Methylation or detox issues.
    I have responded well to MB12, IV’s, SAMe, and a more “paleo” diet, but brain fog is persistent and totally debilitating (you know what I mean) effecting my work, social life, life at all, really. I’m super sensitive to noise, smells, etc. My sleep is horrid despite the meds, and my energy level and mood is lower than low.

    I’m close to giving up. I’ like you and many of us, rush to try 10 things at a time in a desperate attempt to “feel better” and think clearly, and one does forget what it was like to do so. It’s terrifying to know that little by little is worsens year to year.

    Like you, I’ve focused on everything (diet, gut, environment, sleep, supps, etc. etc.) and realize that something is holding me back. I wonder if the chelation is the thing? You know, I’ve been asking doctors to test for an address this for years, and they always start somewhere else and we never get there.

    Anyway, thanks you for this site, it’s an intelligent, articulate, real-life account from someone with very , very similar issues to my own and by someone who has done his homework.

    Be well, Martine

    1. Hi Martine, thanks for writing and sharing all that. I can identify so so closely. But don’t give up and know that the vast majority of the people healing themselves through chelation and methylation support are doing it without the help of a doctor. For the last three months I’ve been tempted over and over to write about doctors. Chronic fatigue and heavy metal toxicity is just not their thing. What I would encourage you to do is to buy Cutler’s books and join the frequent dose chelation group on Yahoo. That’s your ticket!

      Warm regards,
      Eric

  10. Hi,
     
    This is a comment for Starla Dean.  I think you need to slow down.  Before you start worrying about the Amalgams, have your metal testing done.  Also, if you are jogging 90 minutes at a time, you have plenty of energy.  In fact, you are probably depleting your energy through that much exercise.  I would recommend simplifying, stop running and walk.  The wired feeling you are talking about sounds like anxiety.   I don’t know your history but I would suggest you look into the guptaprogramme.  I think there is a real mind body connection where you need to quiet the mind and believe that you will get better to help break the cycle.  There is a program at http://www.guptaprogamme.com that uses DVDs and training to help in that process.  I only just started the program, but I am a believer that the mind plays an important role in ones recovery.  If you want to discuss more, you can email me at cpmisc@yahoo.com.  I haven’t yet found a cure for my CFS, but I have learned alot through the years.

  11. Hi all — I keep putting off getting my amalgams out because im very scared im going to get worse (permanently) and that my body wont be able to handle the detox:( im sleeping good but i adrenalize so easily and have been told my adrenals are severely exhausted. i have to nap 3x a day and go to bed by 9pm, because my energy runs out and my adrenals kick in if i dont rest for an hour at each nap at noon 3p and 6p. i dont get tired i only get wired and adrenalize. im doing lots of supps mentioned here, from my holistic dr., the paleo diet for almost a year, deep breathing, chinese herbs for my adrenals, yoga, get bi weekly massage, and i jog 4x a week for 90 minutes. ive been tested for everything and do have low cholesterol, low blood pressure. im running out of extra money and thinking i need major down time for 3 months for my adrenals to regenerate? ive been told that chelation could be really bad for me because my body may not be able to handle it. and as i said above, im terrified of getting my (only 2 amalgams out with possibly another one underneath a crown) and that the results will hurt me rather than help me because my body isnt strong enough to handle getting them out? i would love feedback from anyone? thanks so much…starla from santa cruz, ca

    1. hi Starla, I think you need support from lots of people who have been in your shoes. Have you joined the FDC forum yet? Have you tried taking ACE? I think that’s usually the first step…

  12. I am 43 and at the point you described in your bio…I am desperate, I want answers, and I am not finding them in the realm of Western medicine. Have already started many of the supplements that you describe after my own research, but now I am in a tailspin and no longer sure what works and what doesn’t. Hoping following in your footsteps will lead me to the road to recovery as well. 

    1. Hi Gayl,
      I think all of us who are suffering from a chronic illness go through this desperation.  I would recommend that you pick a plan and stick with it with the  belief that it will get you better.  I think there is a real mind body connection where you need to quiet the mind and believe that you will get better to help break the cycle.  There is a program at http://www.guptaprogamme.com that uses DVDs and training to help in that process.  I only just started the program, but I am a believer that the mind plays an important role in ones recovery.
       
      Chris

  13. I’m loving this site! So much info! But what’s this about going vegan? I’m skeptical about that, but want to hear more. Has it helped? And why the pic of your breakfast with chicken? And how about some more meal examples?

    1. Thanks Janet. Going Vegan did not work out for me – it increased my fatigue a lot. I need a lot of animal fat and protein… I later learned that this is true of most people with heavy metal toxicity.

      1. This is a great website, Eric – good for you! I’m finding it really useful in my own journey to recovery. One quick question: I have always craved and needed a high protein/fat diet (but now can’t tolerate protein without getting brain fog/fatigue — think it’s ammonia related). What leads you to link this dietary need to heavy metal toxicity? I used to eat tuna, cheese and mayo for breakfast each day, and wonder if this not only compounded my heavy metal toxicity but was also a consequence of it!

        1. Thank you Leon, I appreciate you taking the time to say hello and glad to hear you are on a similar journey!

          Your question is a pretty difficult one for me – I’m sure there are some very technical answers but I can’t give them as I always skim over them when reading. What I remember most is that so many of the FDC subscribers say the same thing and are on the same high-protein high-fat diet as we are.

          Some possible reasons – many of us have low-cholesterol, amino acid deficiencies and b12 deficiency which would naturally create the itch for steak and chicken etc…

  14. “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.”

    I’m glad you mentioned this; I think of it often.  People wouldn’t believe me if I said cancer is easier to cure than mercury poisoning, but I believe it fully.  The thing is, if I had cancer, and knew what I did now, I would chelate as well.  I suspect that mercury may also make someone predisposed to developing cancer, just as it does the many other conditions listed on the covers of AI and HTI. 

  15. How do you do it?  What is a typical day like for you?  What are you energy levels like currently?   I feel like everyday is survival with the odd exception.

    1. hey Chris, I’ve been there – bedridden in 2007. my energy levels vary a lot during the day. highest in the morning, very low before every meal and getting worse as the day goes on…

  16. Who is Expat Viking?  Your wife?  Have you ever done immune function testing?  Also, with your metabolic issues, did you have blood glucose issues?  Also, I saw at one point where you listed a website where people with amalgam fillings can have them removed in a more user friendly manner.  Also, where would you recommend I go for hair testing?

    1. Who is Expat Viking? –> Someone living in Europe who is just finishing up chelation who also used methylation support and iodine, and who likes to help others…

      I had around $3000 worth of blood tests which included immune function back in 2007. Didn’t turn up anything exciting. Yes I have blood glucose issues but they are not standard. I have strong hypoglycemia symptoms but test only show mild blood sugar problems. your doctor or chiropractor can order the DDI hair test or you can do it yourself online: http://howirecovered.wpengine.com/frequently-asked-questions-about-heavy-metal-toxicity/#best-test

      This is a good place to search for a dentist: http://iaomt.org

  17. Wow Eric, we are living parallel lives.  My story is pretty much the same with a few different symptoms.  I first started falling asleep in class when I was 12.   I could manage it all until 10 years ago when I did a ‘cleanse’.  It was the Fat Flush Plan, a very popular book for cleansing.  That’s when all hell broke loose and my symptoms became unbearable.  Sadly I didn’t correlate the cleanse with my symptoms, and I kept doing them.  I tried all the ‘healthiest’ diets possible, only to get worse and worse. 

    My mercury test was so high, it literally could not fit on the graph on the page.  I did chelation for over a year, but did not notice a thing.  I didn’t fell better, I didn’t feel worse, nothing.   I spent nearly $10,000 getting all of my fillings removed and replaced.  I have tried nearly every possible supplement, herb, tapping, energy medicine, shamans, meditation, positive thinking etc, etc. etc.  I have seen countless doctors and spent tens of thousands of dollars just trying to get better.   A year ago my naturopath insisted that I do the GAPS diet- essentially low carb paleo with ZERO starches.  The last 9 months have been the most miserable, horrible and down right absurd I could imagine.  Everything got dramatically worse on paleo to the point I couldn’t walk up a flight of stairs.  Yikes!

    Two months ago I began to see an MD who specializes in kinesiology.  (Where they use you bodies energy fields to test you for problems and prescribe the appropriate supplements).  I am now  on Dr. Wilson’s adrenal fatigue protocol, along with several supplements that all contain iodine.  Strangely, I am feeling better than I have in years.  It’s quite amazing.  I am proceeding cautiously, I know this improvement could tank at any second, but I’m going two weeks strong in feeling dramatically better.  I can’t imagine it could be this simple, but we will see.
    Thanks for all your insights, and best of luck in your quest!

    1. hi Cathy, sorry to hear you’ve had such a hard ride. I do think it’s hard to make any progress without supporting your adrenal glands so I don’t think it’s likely that your progress will tank…

      What kind of chelation did you do? It is odd that you didn’t experience any effects at all.

      1. I agree Eric.  I have used adrenals for years in the past, and never had any results, so I’m not sure what’s different this time.  Maybe it’s the specific formula, who knows.  And I’m not so sure my progress won’t tank- it’s happened many many times before!  A lot of times I make a change, things get better for a day, a week, or even a month, then it all reverts to the status quo.
        I used DMPS and DMSA for the chelation.  Both orally and intravenously.  The fact that I didn’t notice anything makes me think there are a few reasons:
        1. the damage has already been done
        2. mercury was the not the main issue causing my problems.  (there is some evidence that if you have sufficient selenium levels, you don’t need to worry about mercury b/c the selenium is protective)
        3. even though my levels are now normal, the mercury is hiding deep in tissues and releases small amounts now and then.  I have ‘mercury tattoos’ in my mouth from my fillings, so I know it’s not all gone.
        There could be endless reasons, who knows.  The body is extremely complicated!

        1. Cathy, have you read Dr. Cutler’s book Amalgam Illness?

          I would highly recommend it because based on your comments, it sounds like you are missing some crucial information. For example, neither DMPS nor DMSA penetrate the blood brain barrier so you have not done anything to reduce the mercury burden in your brain. The adrenal glands are highly affected by brain function too, so this is really key…

  18. Hi Eric and all…. Im so excited to find you! Im struggling with my health re. adrenal exhaustion and had a very toxic mold exposure a year ago (for 4 months living in a very saturated black mold zone) which i think pushed my symptoms into overload? Ive been trying numerous healing modalities, doctor and naturopath visits and more and not making progress with my symptoms. Did you ever do mold testing? Do you know where I can do a lab test to see if I still have mold in my body or is that not the issue? Is the issue just being allergic and needing to get away from moldy places to live such as on the coast etc? Im about to get my amalgams out and afraid its going to make my symptoms worse while doing it and that Im not strong enough to do it. On the other hand the heavy metals may be causing some of my problems in the first place? Hope to hear from any of you and will write more later about my symptoms/history to see if I can get some sound advice. Blessings, Starla Dean from Santa Cruz, California

    1. hi Starla, very sorry to hear about your troubles. I never did anything more than the standard allergist skin tests… Recently however I did do the visual contrast sensitivity test you can find on this site: http://www.survivingmold.com/store1/online-screening-test – You’ll probably find lots of other good info on that site if you haven’t read it already.

      Would also recommend you join http://health.groups.yahoo.com/group/frequent-dose-chelation/messages if you’re not a member, you’ll get all the help you need with your amalgam issues. It is common for people to feel better right away after getting them removed. Sometimes it goes the other way also…

  19. hi eric
    only just stumbled across your postings. great resource and insights.
    i’m new to all of this. ten years plus of wandering in the dark. i can see that you are ahead of me.
    just started cutler protocol (5th round dmsa/ala) after three months wait following removal of amalgam fillings.
    was tested for metals . mercury high predictably but lead at ten times “normal”. no idea why.
    currently thinking about regular saunas
    following own research and instincts after being financially crippled and time wasted by the “professionals”
    thanks for taking the time and trouble to set this down
     
     

    1. hi Joe, thanks for writing, sounds like we’ve had some similar experiences. Congratulations on getting started with the Cutler protocol!

    2. Hi Eric,
      I am a 47 year old mail in Miami with 2 children who had CFS for 16 years but only recently learned what that means 7 months ago.  Now I am trying to pick up the pieces.
       
      Where in South Florida are you?

      1. hi Chris, I moved out of Florida about five years ago to get away from the mold in the air…

          1. The air you breathe always has mold particles in it. Where I live, it is theoretically around 500 ppm, whereas in Florida it’s 5,000 ppm. The entire East Coast is not a lot better than Florida although Florida’s problem is all year round whereas there is some seasonality in the Northeast.

            1. I can vouch for the mold in FL: the cement building materials make it worse. Most structures- schools, hotels, hospitals, malls, homes, etc. feel like moldy basements. There is no relief anywhere from it except maybe in new buildings. The mold gets in respiratory tract and constant humidity feeds it resulting in constant inflammation and sickness. My ears were clogged year round except when we had the occasional cold front. And then there’s the candida… nightmare!

              1. When my relatives visit from Guatemala, I can smell them (the mold) 10 feet away and it takes three weeks for the odor to dial down to what I consider moderate. Takes three weeks for chronic sinus problems they have to start dissipating. Clothes and other belongings like suitcases cannot be restored with any amount of washing….

  20. Awesome blog-I wish you endless good wishes in your recovery.  I have heard wonderful things about the AC Protocol.  What a shame that doctors just diagnose one of our symptoms and don’t really help the cause.  I will keep following….
    Sydney

  21. I stumbled upon your site looking for high thiol food lists (you know why…) so glad to have found it.  My story is so similar to yours.  I’m in my 40’s, but had CFS in my early 20’s.  Now been sick for nearly 3 years, gone downhill.  Just started frequent low dose chelation this last month, on round 4 of DMPS.  It’s so great to hear other people’s stories.  So helpful.  (I too thought my problems were all from mold at one time…)
    Anyway, good luck and glad to see you’re out there.

    1. hi Dee, congratulations on getting started with low-dose chelation! That’s quite a coincidence that you also thought mold was the source of your problems as well. Looking forward to hearing about your experience…

  22. Hi E:
    I’ve been at this for 13 years without much success, trying everything as well.  It suddenly dawned on me that metals, deranged minerals and methylation issues may be to blame.  I also had allergy immunization injections weekly for YEARS and am wondering if this was the culprit.  I got low dose oral DMPS to start with Cutler protocol but haven’t started yet.  I’m not starting with DMSA due to lots of gut problems.  I’ll be watching here.
    KB

    1. Hi KB, there are so many possibilities as to how our problems developed… the good news is we can only improve our health with methylation support and by getting the metals out!

      -E

  23. Found your blog today – I’ve not read the rest yet (looks very interesting), but just thought I would mention something that helped me massively with adrenal symptoms that were just wrecking my life and very frightening. I read Paul Robinson’s ‘Recovering with T3’ and followed his circadian protocol. It has made all the difference to the adrenal sweats, panicky feelings, palpitations etc.The key is to take the T3 (thyroid support) at the time of day when the body needs it to make cortisol for that day. It hasn’t made that much a huge difference to the ‘hypothyroidism’ identified by a private doctor, but it has stopped all the adrenal problems with hydrocortisone etc.
    Like you I have had many difficult symptoms for years (more than 20 years now) and I have had some success with the Cutler protocol, but not much with methylation – now I have my genetic results the CBS mutations explain why that was. Can’t wait to read the rest of your blog – thanks for posting – the Idiot’s guide to methylation is great! Good luck with your progress.

    1. Thanks for your kind comments Rosie! I’m wondering what your T-3 dosage schedule is? I’ve been tracking my temperatures which are low as you would guess and may try supplementing sometime in the next couple months… The naturopath I saw recently is a Wilson’s Thyroid Syndrome/cycling fan.

  24. I’m not cured either but banished my stomach pain as a side effect. I had a food allergy test done, had to pay for it outside of healthcare, and the day I stopped having an egg for breakfast was the day my stomach pain went away. if your gut is inflamed or has other reactions to what you eat, how can you properly absorb nutrients?

    The fat diet you were on might not have been working because of gut allergy leading to malabsorption of fat and other nutrients. I still suspect i have low stomach acid which especially hinders absorption of minerals.

    1. glad you discovered the egg thing! I also have to be careful with eggs because they fatigue me tremendously. the phosphatidylcholine in the yolk is an adrenal stimulant that I don’t tolerate well.

  25. Love this blog. Can’t wait to read the whole lot… now I’ve started blogging, finally tapping in to all the resources out there of others going through the same. Feels very heartening! Keep up the good work (lovely coherent writing by the way – you’re not at the dementia stage quite yet!)

  26. Wow – what a wild ride you are on, Eric! It’s a Tilt-o-World!
    Glad you seem to have found a solution though…if you are right, it should be a matter of fixing it now, balancing out the improprieties. But a bunch of suffering to get there. Some might say, “What doesn’t kill you makes you stronger” but I’ll say, “Keep short-sheeting your death bed. At least that is funny when life isn’t.”
    But for God’s sake, don’t, not even for a minute, suggest fishing caused it. I will hunt you down. Maybe just to fish, and prove my point with my own robust healthiness, as I chew lead weights light a ghetto kid eating paint chips. 🙂

    1. Hey Marty, you would think the joy of fishing would detoxify all the Mercury and Lead instantly so you have my blessing to keep munching the weights.

      And you’ll be relieved to know that I think the allergy shots were probably the most significant source! In one year I would have received 468 injections…

      Thanks for stopping by, I appreciate you!

    1. thanks Martha! I’m pretty happy to feel like I do have a destination in sight now. not the first time I thought I was going somewhere, but this time, I’m much more confident in my compass.

  27. Good luck. I hope you are using the Cutler Protocol for chelation. It’s helping with my cognitive decline and brainfog, but ts a slow go.

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