[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
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
- 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
- Alcohol intolerance
- Positional sleep apnea
- 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
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”
Hi friends, I’ve discovered that I have Lyme disease and co-infections and wrote about it here: http://howirecovered.com/lyme-disease-and-co-infections/
Wishing you good health,
I read your story and am sorry to hear about your troubles. I want to recommend something that I feel will help you tremendously, that being Hijamah (wet cupping therapy) I had mercury poisoning as well to the point that I was unable to move and Hijamah is one of the best remedies you can use as it will remove the toxins, poisons and bad blood out of your system and you will feel the results right after.
Another thing I urge you to take is Chlorella and Spirulina. Also amazing for detoxing the blood of metals and toxins.
But please look up hijamah, one of the best things you can do to truly heal and then just eat healthy and organic and get plenty of purified water. There are certain spots where hijamah is performed depending on your needs, spot (55) as its called is the best one i can recommend that worked for me best.
thanks Jasmin. For other readers, chlorella and spirulina are somewhat controversial. Dr. Cutler and Dr. L Wilson recommend to avoid them…
I forgot to mention that (at any rate), I’ve given up GMO foods. I saw in another comment where you gave up kale and avocado. Those two foods have always been pushed as awesome sauce foods. Why did you give them up and have you still given them up? Further, what foods are you on now? How are you handling your Mthfr gene? Are you off of sulfur? I also have the Mthfr gene though I’ve never been tested. Basically, I know things and then I test myself later to confirm.
I avoid kale and avocado for their copper content… basically eat lower copper vegetables and meat usually chicken or turkey with an occasional piece of liver thrown in. Stopped methylation support when I started mitosynergy’s copper as it became unnecessary.
Hi Eric!! I am reading your B12 protocol and methylation. Well, my troubles started when I was a 13, and now I am 31. I have been severely ill where I cannot work, complete my education, or have any type of social life. I have lost a lot of my life. Long story short, I have poor methylation and some mercury toxicity, and chemical exposures like DDT. I also have genetic mutation that requires my body need for extra b12 MTTR ++, and other some ugly genetic situations. I can’t tolerate any pharma medications and highly sensitive to most supplements, so i have to do them in very small doses – children dose plus i am a petite person. I have troubled tolerating sulphur foods, and supplements, which increase my liver enzymes. Anyways, I am following Dr. Yasko protocol and I started on mix of hydroxy and adenosyl-cobalamin supplement at 500mcg in one spray under tongue. Serving size is 5 spray, but to start up, i only do one spray , which provides 500mcg. I notice it gives me lot of energy and very positive happy mood. However, I experience insomnia from it. I can’t seem to cut one spray in 1/2. So, now i am trying it under the tongue very early in the morning to see if it makes any difference. My doctor told me that i have to bear the insomnia a bit because it will pass as my body adjusts to the dose. What is your intake? Why it causes insomnia and such a hyper feeling in my brain? If I don’t sleep, i am totally miserable and my nervous seem is super sensitive. I become very talkative, sociable, and happy on it to a point where i don’t recognize this new person, which is good, but it feels overwhelming and stimulating to my senses. I response very quickly to it. What can be done about insomnia?
Hi Pabu, glad to hear you are making some progress! The insomnia should pass in a week or two. The most effective treatment for insomnia is the restriction of time in bed method – it’s horrible but it works. get up at your regular time even if you don’t sleep well and don’t nap during the day. Your body can only take so much of that and you’ll start sleeping more normally after a few days. Try melatonin also if you haven’t already.
Eric are you in the Biochemcial Therapy Support Group on FB? They are mostly patients of Mensah Medical. Mensah is Walsh’s protégé. Everyone in there is mainly concerned with lowering copper levels in order to make it more bioavailable. But recently the Mito copper was introduced and several people have been on it, including myself, and have been reporting back. Charles Barker, Mitosynergy’s founder, is also in the group. I’m personally doing excellent. Dxs are EDS, CFS, mast cell and Sjogren’s, among others.
Hi Hope, yes I’m in the group and that’s how I found the proper copper too which I started about a week ago… Glad to hear you are doing well on it and thanks for writing! I will definitely blog about it if it goes well 🙂
I’m a little confused on why you are starting copper supplementation when I thought you had copper toxicity?
The basic idea is that there are two forms of copper, bioavailable and bio-unavailable. people that are copper toxic usually have high bio unavailable copper and low bioavailable. In the past, the only way for copper to be bioavailable was for it to be attached to known transporters like ceruloplasmin. Now Mitosynergy makes a Copper supplement that is attached to niacin which in theory means that it can enter cells through the niacin pathway without depending on ceruloplasmin. Many people believe that providing bioavailable copper to the cells restore it’s the health they need to detoxify the bio unavailable copper.
Hi , I have a question, would takinh Niacin separately help to turn bio-unavailable copper into the bioavailable one?
Nope, definitely not. Sorry.
Hey Eric. Hope all is well with you. I was going to write you earlier this weekend, but wound up on several posts of yours that indicated you already knew what I was about to say. (but here goes anyway … 🙂 )
My doctor (I call him Dr. Woo Woo)… has been telling me for the last six months that what I have is a virus. I have sort of rolled my eyes, except he is the one who told me I had parasites… and even ‘saw’ which ones. He said, Lori, we had to get rid of the parasites to see what’s left. A virus is left. (and my parasite labs are all negative now)
A friend of mine posted this on FB: http://goop.com/the-mysteries-of-the-thyroid/ and I just happened to read it. I don’t know how to say this… it just clicked. It finally all made sense. I had a long spell of mono when I was 18. My EBV titres have never gone down. They are sky high. I am sure there are other contributing viruses. But it just makes sense now. I’ve never been able to explain the sudden thyroid issues at 20, and the chronic ‘auto immune’ problems that just mount with time… along with the fatigue, depression, etc.
What really makes sense is the constant strain of fighting off a deep virus. My iodine levels are still tanked. Everything is ‘off’. It just takes enormous work to stay well. And all the whacky labs… I think is just a body trying to maintain some kind of equillibrium.
Eric… for me, this is the next step. I plan to integrate what the author of this article said (I also bought his book)… along with Dr. Woo Woo. (God, I should just call him by name, Dr. Lumiere!) I will also be buying a far infra red sauna because it is one of the few things that actually made me feel better… but driving distances to get to it is just too much. And too costly. I think that doing a sauna daily during the next six months might be a great thing. I have some anti-viral herbs. Feels like it’s time to double down and get on top of this!
Just that update… I have enjoyed being able to share what I’m up to, and hear what you and your readers are up to. Blessings!
Good to hear from you Lori! Do you have Hashimoto’s? After reading the Root Cause book, I thought I would be able to help my wife recover easily but it didn’t work and the misstep was giving her zinc – she got much much worse. Which got me thinking about Morley Robbin’s claim that Hashimoto’s is caused by copper deficiency. Immune system won’t function properly without healthy copper metabolism. So I’m thinking that could be the root cause, even further upstream than EBV and other infections. She’s been on MitoSynergy copper for about a week and feeling better but still too early to jump for joy…
Slowly, slowly we are figuring this all out, aren’t we! I’m so proud of you for staying the course.
I do, supposedly, have Hashimoto’s. I have been on some form of thyroid meds since I was 25. And that amount has just been increased again to nearly 5 times what it was.
I’d like to address this for a moment. I think the link I gave you was to an article by a ‘medical intuitive’ who said, flatly, there is no such thing as ‘auto immune’ disease. It is always the body attacking something external. And man… that was spiritually, emotionally, and physically exactly what I needed to hear. The body does not attack itself in some kind of ‘mistake’. It is mounting a heroic effort to get rid of something persistent… could be a heavy metal lodged deeply in cell structures, or a pathogen, virus, bacteria. What an incredibly liberating idea! At this point I don’t even care if it’s true or not! I just got rid of a very negative and helpless view of my body.
Which makes the copper issue make sense too. (for me). I believe that these mineral imbalances are due to that fundamental premise that the body is acquiring certain minerals or letting go of others to mount its fight. I used to have very high levels of copper… and was always told it was due to being estrogen dominant. (Is your wife menopausal, or has she checked her estrogen?) As soon as I went into menopause, my zinc rose, my copper tanked, and then I became anemic.
I too have to be very careful with zinc. Very careful. And I make sure to get high dietary sources of copper, including 85% dark chocolate (organic) every day… sesame seeds, pulses, etc. And a chlorophyl supplement in water that has very high copper. But remember that zinc is to fight infection… copper antagonizes.. so I think that zinc/copper imbalance is mainly the body’s attempt to get what it needs to fight infection or other issues.
You can work like the devil to get your body to match the ideal mineral or other profiles… which may be counterproductive. Could we hope that it will fall into place once the real problems are resolved? (I think so! 🙂 )
Lori, I like that theory! You may want to join this Facebook group I’m in BIOCHEMICAL THERAPY SUPPORT GROUP where lots of people are experiencing crazy recoveries with the MitoSynergy copper…
I’m interested in your thoughts about copper. I have severe insomnia, and was once told I should take copper to help this. I thought this was crazy b/c it’s usually too high of copper that leads to insomnia. Do you think a copper deficiency could do the same thing? Wondering if I should try it…
Hi Cathy, I’m in a Facebook group called BIOCHEMICAL THERAPY SUPPORT GROUP where lots of people are taking MitoSynergy’s copper which is said to be unique and helpful with both copper toxicity and copper deficiency. Remarkably, many people seem to be experiencing unusual recoveries a week or two weeks after they begin taking it. Some have mentioned sleeping very well…
I feel like you are always pushing drugs or vitamins or something to buy. Why not focus on the foods? I mean..I haven’t got tested but I already know I will be high copper on my hair samples but low bioavailable copper. This is why I have no energy. High copper people with bioavailable copper have high energy.
I already knew I was hypothyroid and probably adrenal deficient but I’ve recently met a lady that is taking vitamin supplements all day. I realized horribly, that we are not getting what we need from foods at ALL, not AT ALL and thus what good is it to eat when we can only get and use the break down processes that our bodies used to do?
Thus, I wish you would focus more on why our bodies are unable to break down foods to make the end product of energy or bioavailable vitamins and minerals that we need!! And also focus on the foods that we need. For example, I took Vitamin C 1000 mg and B complex together (that’s it thankfully) and I was up for 2 days. I could not sleep at all. Wasn’t tired in the least but because it was a scary feeling, I didn’t get up and do anything just spent a lot of time researching on computer. Well, the B complex has the Niacin which made the copper bioavailable in my body resulting in my awakeness.
The other day, I also ate pistachip nuts which are high copper. Again, I wait and see how my body feels. It felt energetic at least for one day.
Kris, that’s a very fair question – why don’t I write more about food? I certainly spend a lot of time preparing my food and I eat vvery very carefully. Mostly I don’t write about it much for two reasons.
First, I try to write about things that I think would be difficult to find in other places. I’m trying to think about and write about things that I think most people will miss if I don’t talk about them.. Food advice is everywhere.
Second, considering the money and time I invest into my diet, what’s really really remarkable is that I haven’t recovered using food as medicine. Why? No matter what I eat, (no sugar, ketogenic, etc) my gut has been like a swamp with gnarly infections of every type thriving in it.
I’m finally making good progress with Herculean efforts – sauna, fenben, garlic coffee and borax enemas etc…
When your gut is infected like mine, the food doesn’t even touch the wall of your intestines, sso how could you possibly absorb the nutrients properly? Instead you are absorbing the toxins produced by the fungal and bacterial biofilms.
I was born in south America where I believe it is was a cleane environment, eating fresh and trimonthly cleansing, was a routine, due to unsafe water. My grandmother was very into health food, never eating yesterday’s leftover and having a balanced diet. She also introduced me to vitamin B12 and I have to share that when I was in elementary school and couldn’t learn my lessons I will cry my eyes out and blame it on the fact that I had not take my vitamin B12. In Ecuador we couldnt afford a bottle of vitamins and the pharmacy in the corner sells them by the units (aspirins to percoset (sp)) are sold in that manner. Well I swear that as soon as my grand mother came from the pharmacy and I took my B12 (called FITINA)pill I zoom thru my lessons. Now in my 50’s too busy in the business world, I neglected my self and was diagnosed with fybro but one day I was telling my husband my story of my crying due to the fact that I couldn’t learn my lessons as a child and the B12 heal that I experienced, I decided to go back to my B12 regiment and I am noticing the change. Thank you for reassuring my believe on the wonders of Vitamin B12. Be well.
hey that’s great to hear Cecelia! my wife is Guatemalan and I have spent lots of time in Central and South America so I know how the pharmacies work 🙂 bravo for getting back on b12!
I just found out I have lymes and can honestly say it goes hand n hand w heavy metals big time…Doing restore vital plan n getting better. Dr shade is also heavy metals expert…U def have to have the pathways open for all this detoxing to run smoothly..Haritaki a major fav of mine i found to get so much crap out of body that is not even on label …if u buy powder and hold under your tongue before u swallow it sucks crap out of head as well as it does amazing stuff to gut…So why do u think allergy shots have merc..I looked at ingredients at my Dr and no merc just phenol as preservative.
hi Michelle, glad to hear you’re getting better! I had my allergy shots around 30 years ago and things of changed a lot.
Hi Eric! Have you tried MMS yet? If so, how did that work for you? I’ve been using it since 2008 to treat various things. I am interested to see if you have tried it out.
No yet, i purchased it but the smell was so strong i passed on it…
“Chromium is a bactericide, copper a fungicide, and arsenic an insecticide, and all arrest decay of some kind.”
You mentioned fungal infections. Sure enough, references pop up everywhere. The above was just a sentence about treating wood (with copper, arsenic and chromium). Maybe you have a fungal infection, Eric! 🙂
Just an fyi… I had to stop eating buckwheat because the high molybdenum content was driving down my copper and making me anemic. In every mineral test I’ve had in the last 6 years it’s been high molybdenum, low copper *(the reverse of what it was in years prior). You know… those minerals, zinc, iron, copper, manganese, molybdenum, all augment and oppose one another. I’m sure you’re working with this knowledge? (?)
yes, interesting stuff Lori, what makes it really complicated is that the minerals don’t show up evenly in the body in people with deranged mineral transport – so copper toxic people like me may have high concentrations of copper in the brain and liver but low copper in the intestines, which might explain the correlation with fungal infections… Interesting that your picture reversed!
So much for ‘deficiency’ thinking, since we probably eat mostly the same diet(s) and some people accumulate some minerals easily. It’s not about a deficient diet. Something else is going on.
One other thought: when my copper levels used to be extraordinarily high I was always told this was due to excess or predominance of estrogens. It is true that as estrogen levels increase, so does copper and my copper decreased precipitously after menopause (even with supplemental estradiol). Conversely, I’ve always learned that zinc and testosterone go together. That is ‘free T” and zinc. So, it might be a question of hormones, too… (I know we’ve discussed that before).
You mentioned seeing ‘plaque come off your colon’ and I saw the photos you took of it. I did a search in your search field (great site feature, BTW) and nowhere did I see any mention of what I think you have: Rope Worm. I would Google that immediately. Apparently, it was just discovered by a German a few years ago as the result of doing coffee enemas. He is a doctor and co-authored a couple of papers on the subject, complete with photos of all five development stages and mentions of DNA sequencing on the thing.
The reason you keep seeing ‘plaque’ and other various nasties keep coming out after many cleanses, is because the problem is not some static ‘plaque’, but a living parasitic infestation that reproduces on an hourly basis. The reason it’s taken so long to ‘discover’ this monster is because it doesn’t resemble any kind of ‘worm’ anyone has ever seen until it’s adult (fifth) stage, and even then, it doesn’t look like anything we would normally think of as a worm. It looks more like mucous, plaque, or intestinal lining and it generally is the color of our own fecal matter (the perfect camouflage, right?).
To this day (2016.07.12), this thing does not exist in the medical journals. Don’t bother asking any doctor about it; they’ll have never heard of it before. The two doctors who wrote the papers on it recommend coffee enemas with eucalyptus oil followed by a fresh-squeezed lemon juice enema. I started doing coffee enemas and saw the same things coming out of me that are in the photos in these papers of rope worm and also Candida Albicans. I have heard that candida is typically accompanied by parasites. One person even suspects the rope worm may ’cause’ Candida. At this point, there is no single authority on the subject. These two doctors are currently the closest thing we have to any kind of authority on it.
Alex A. Volinsky, Ph.D.
Nikolai V. Gubarev, Ph.D.
Human anaerobic intestinal “rope” parasites:
Development stages of the “rope” human intestinal parasite:
Full Genome Sequencing & Study of Homo Funis Vermis, “Human Rope Worms”:
thanks Eric, I am familiar with the theories and photos on Rope Worms and I’ve never passed anything that looks like those photos. Mine are not ropey. I do appreciate yourtime and thoughtfulness in researching this. I’m pretty confident that my issues are mostly fungal. One of the reasons is that I have a very textbook copper toxicity which seems to go hand-in-hand with fungal infection…
Hello. I am curious if you have looked into mitochondrial disease? It causes a lot of your symptoms and seems to show up several times on your gene report. I am new to learning about all of this for my son. Your report helped some. Thank you. His report and yours have a lot of overlap.
thanks Shelby, I have thought about it and tried some mitochondrial supplements but never saw any improvements. I think the simplest explanation is usually best and for me the simple explanations revolve around the things that I can see and measure and already know about like copper and heavy metal toxicity along with bio toxicity…
Hi Eric, I think I am suffering the same problems. I have mercury and lyme coinfections but when I did iv chelation it didnt do much for me. I truly believe my methylation cycle is messed up and I need that checked. I get bad head symptoms and crazy sensitivities/reactions all day long. It so bad I cant shower. They say thats a lyme symptom. Symptoms also seem to change and get better and worse at the same time. The deeper I get into The detox the worse my reactions. Im going to see a new dr to discuss mthfr testing, lyme, and detox. Once Im up to it I may start Cutlers. Can you elaborate on how you got better and worse at the same time?
hi Matt, that is contradictory, getting better and worse at the same time… It’s difficult because my memory is so bad. I think the issue is that I have so many symptoms, that’s what makes it possible. so my incessant hunger improved about 80% – it wasn’t just hunger, it was like I would tighten up and become incapacitated to some degree by my hunger which bordered on pain. I never never went anywhere without packing food. Now I sometimes get in the car and realize I don’t have any snacks with me and decide to go out anyway.
But while my hunger problem improved, my fatigue eventually worsened with chelation.
Did you supplement all the “good” minerals that were chelated out along with the toxic metals?
If you were tired at 17, you must have caught some kind of Virus or what seemed like the Flu or maybe didn’t notice anything at the time. Mono leaves a person with the Epstein-Barr Virus which hangs around for life.
Then there is Mycoplasma Pneumonia (airborne virus) and easily caught in an elevator. Also the Chlamydia Pneumonia Virus, not caught like you thought. I think this one is much worse.
I have all 3 of them but only was aware of the Mono, when I caught it but not the other two. And I believe they can all cause MAJOR FATIGUE.
Have you researched those viruses? Since Iodine is Anti-Viral, it might help lessen the hold it could have on a person.
yes, I had EBV and believe I had Mono too… there’s no doubt in my mind these are factors in my fatigue! I got a little of everything happening.
You seem to have the money for treatment. I say go nuts on ozone iv. Do it for like 2-3 times a week for 6 months.
actually, I don’t have that much disposable money!
Wow! Eric!! so glad I found this site- You sound just like me! I’ve been on Prozac for 15 years, have extremely high levels of mercury, and parasites.
For the last 6 years I’ve basically done nothing more than force feed myself meat, Sometimes 2 pounds in a sitting, and yet my hunger doesn’t abate. It’s accompanied by extreme hunger pangs, shaking, heart pals, dizziness, anxiety, blurred vision, the feeling of bugs crawling on my skin. My days mostly consist of eating and sleeping and I had to carry a supply of meat with me everywhere I went.
Treating the parasites helped, as well as cutting out all dairy, wheat and gluten.
The problem is I am bottomed out on all vitamins and minerals but can’t even handle the slightest dusting of a vitamin without it triggering the extreme hunger. Is it my liver? It’s a such baffling riddle, why someone would eat 2000 calories and still feel as though they were going to pass out from hunger.
I can’t even leave the house sometimes because I have to be around food. Any time I try to add a supplement; potassium, lysine, adrenal supplements, multi vitamins, anything, my blood sugar crashes again, and it’s very odd, because some times it won’t even respond to food. Like the other day I had to eat 5 jumbo sausages, have a container of ham, 2 bowls of cereal, 2 granola bars and a yogurt before the symptoms began to abate.
It’s much worse at night.
My diet now consists of only organic turkey, chicken, beef, vegetables, berries, apples, yams and rice.
I am 5’4 128 lbs thankfully, because the condition is not constant. It intensifies when I take vitamins. I derive no pleasure from eating, so I don;t think I’m like your typical patient.
I’m also an LA based journalist so I can help promote your cause, or pay you, whatever is preferable!
Thank you so much! I will be eternally grateful to whoever to solve this agonizing riddle!
hi Suzy, I did come across one other person who had insatiable hunger which disappeared after she chelated for a year or year and a half… My hunger also reduced quite a bit after several months of chelation. Having said that, are you sure you’ve completely eliminated your parasites? It’s often much harder than people expect.
How are guys finding out you have parasites? I have done flushes and had the runs for 24 hours and I whent to the washroom at least 20 times in 12 hours and I have never passed a parasite.
I passed ONE parasite after my second colonic. And I have done paragone and never passed any thing.
Suzy, I think you might have dysautonomia. I was recently diagnosed with it by an integrative/ functional doctor after complaining of all the symptoms you have – after getting that blank “huh?” look from many doctors. Dsyautonomia is an imbalance between the parasympathetic and sympathetic components of your autonomic nervous system. The autonomic nervous system maintains your body temp, heart rate, digestion, and everything that is not under your conscious control. Dysautonomia explains your symptoms, but it is a symptom itself, not an actual disease. It is the result of insults to your nervous system. I have a complex stew of ailments – many of which the author of this blog has – which include lifelong undiagnosed celiac disease, MTHFR and many related snps which cause hugely impaired methylation, a lifetime of toxic mercury exposures (I’m in my 60’s and yeah, we played with mercury) plus a huge mouthful of mercury fillings, toxic exposures to lead, chlordane, DDT, mitchondrial damage from fluoroquinolone antibiotics, vaccinations, and more. I’m also on 20 mg of cortisol and like Eric, not finding a huge amount of relief. I did discover something that helps abate worst of the dysautonomic symptoms, though, and maybe it will help you. Do you have any stomach irritation? I have suffered from gastritis and esophagitis for years, and despite eating a grain-free, dairy free severely restricted Paleo diet, nothing would heal it up. I discontinued all coffee, on the theory that “molecular mimicry” might be at work – my body thinking that coffee has gluten in it. Gluten is a neurotoxin if you have celiac. I also discontinued anything in a package that could possibly have been contaminated with gluten, such as dried fruit (look for any label saying “shared equipment”). I also don’t buy anything in a box that says “gluten free”, since the allowed levels are too high, and a shocking percentage is contaminated. This has helped enormously. I’m not suggesting you have celiac, although you might, but I am suggesting that an irritated digestive system is communicating trouble to the vagus nerve, which goes right to the brain, and voila, misery. Anything you can do to help your digestive health – probiotics, avoidance of allergenic or highly acidic foods, etc. will likely help you. Good luck.
Im 21 and we have identical problems. Im housebound.
Im about to start andy cutlers regime.
Its abit sad seeing you didn’t recover on it or fredds protocal.
How do you think you will recover now?
well I’ve come a long way and making big progress now! I’m starting sauna to eliminate copper (and it helps with lead and other toxins also), will start cholestryamine soon and eventually will go back to chelation…
I’m so glad your seeing progress now!
I will be starting my 6th round of 2.5 mg of DMPS next week. ..
Can you share your menu and supplement list and amounts with me?
Your blog is a great help!
Thanks so much!
thanks Angie… here you go: http://howirecovered.wpengine.com/the-supplements/
Wow… I’ve recently discovered our family has the MTHFR alterations. So I stumbled on your site doing some searches on methylation. What a wealth of information you are sharing. We’ve also had issues with mold in our house, so I need to check into HLA-DR.
Best of luck in your healing journey and thank you for putting it out here where others can learn from it as well…
thanks Teala, good luck to you!
So eric, have you ever looked into how acidic your body is? I just watched this video a naturopath dr made on youtube. Dr Robert morse. He says you won’t cure candida if your body is acidic.
Candida thrive in acid. Your body has to be alkaline to get rid of the fungus. He says dite of berries and melons are the only way to do it. Because it’s what get the lymthic system working so your body can detox it self and become alkaline.
If your toxic wicth we are we will never cure our self because toxins make us acidic.
Get this, he says the best way to detox is eat nothing but fruits all day. And a salad at night I’m guessing that’s so you can sleep.
He is really busy has a long wait list. Says that diet will cure everything.
I have tryed ozonated water to detox. It works but really works way to well. You get very ill from it. It detoxes you way to much to fast for your body to handle.
Look on youtube detoxification the art & science.
It has five parts.
He has alot of video on youtube and he tells people how to cure then self how to do the dite.
He is not trying to sell products besides his god herbs. But he says you don’t need them and even says they are costly.
He even answers people’s questions.
You really should look into it. Because you are really toxic and acidic.
Ps my plan to drink a ton of milk kifier worked. My digestion is better now. I’m actually digesting the food now.
I do check my urine pH from time to time and it looks like I’m just about right – it should cross over from acidic to basic in the afternoon according to Dr. hnmm I can’t remember his name lol.
Hello, I just ordered IMD Thiol drops by Quicksilver to detox, which arrived today. (Dr. Suspects methylation defect, and in process of having testing by “23 and Me.” ). However, I had also recently started on MSM, Biotin, and was taking Epsom Salt solution to treat constipation, and had been bathrooms no in Epsom salts. All of these are high in sulfur. Yesterday morning, I had a sudden onset of deep facial and body flushing, with slightly itchy skin, with facial swelling, which all responded well to Benadryl. Also, it then occurred to me that I had an allergic reaction a,most 30 years ago to a sulfa antibiotic. So, would the IMD Thiol be contraindicated? Sounds like a simple “yes”, but I read that it is made of large molecules that aren’t supposed to enter the main system, but if I have leaky gut? Could they still be small enough to leak through? I can’t find any information when I search for I D Thiol and sulfur sensitivity. Thanks.
Sorry for typo, meant to say I was bathing in Epsom Salts….
Sorry Tom, I can’t really help you with those questions – sounds like you might be on the right track. Always a good idea to fix your gut first in my opinion..
Hey Eric! I haven’t checked in in awhile, but felt an update is in order. Strange how things go full circle! After working through strongys, EMF’s and everything else, I still had one thing on my bucket list–my carpets. I had heard a 100 times that carpets are full of toxins, and my doctors told me to get rid of mine. I was feeling better but still not right… so, I finally just had some guys tear out all the carpet in my 2 story home, expecting that I would vacuum up the dust, and feel HAPPY.
It didn’t quite go down that way. 🙂 I have felt MUCH worse over the last 8 weeks since the carpet was removed, and my house is now almost like a war zone. I had no idea the amount of dirt, dust, dander were living under my carpets… piles of it… everywhere, nor how it would cover all my house in dust and soot once the carpets were removed. The stuff is STILL in the air, and I have had outright allergy symptoms, and great fatigue.
So… that was stupid. But my next plan was to totally clean all my flooring surfaces and wash them down, and then seal and paint my floors with no-VOC paint–which I was set to do this last weekend. Except, while I was really inspecting the bare wood floors I noticed dark spots, big patches… everywhere. For some reason I just thought they were ‘stains’. Wrong. It turns out that the stains on my wood floors are mold, pretty much everywhere. I do not yet know if it is ‘black mold’… but several carpenters have told me it is. So, if I understand this right, I have been living in a house full of black mold. And not feeling well. And now I’ve exposed it all and tossed alot of it up in the air and been breathing it full force for weeks.
You know, Eric, I just want to say that if we stay at a problem long enough, and don’t give up, eventually all things will come to Light. So, I’m not complaining here… just grateful that I stopped to ask what those stains were on the floors, before painting over them.
I guess I should mention one last thing: I haven’t heard you talk about hormones. But whether it’s aging, or illness, my own native hormones are very low… and I could not be soldiering on if I wasn’t replacing them with something bioidentical. I have been taking a little testosterone (along with estradial of course) which makes a huge difference in my strength and mood, but now I’m adding HGH. Loss of muscle, loss of energy, sleeplessness, and so much else come from a reduction in HGH and other hormones. So, I finally decided… this is worth it. Will be doing a daily shot of HGH. I hope you’ve checked that piece of it out.
thanks for the update Lori and bravo for getting your carpets out and finding the mold! I think you will find my next blog post on CIRS very relevant and interesting… good to hear from you:)
Lori, check out http://howirecovered.wpengine.com/mold-toxicity/
I was under the impression that HGH could be raised through supplementing with DHEA and a lot cheaper.
I have never heard DHEA raising HGH, but I do know that arginine is an amino acid that might help. Also, lifting weights works (not cardio but actual weight lifting), and that’s mainly what I have been doing over the past few years to get those levels up. Sleep is also the HGH partner… it is mainly produced by the pituitary during the first four hours of deep sleep. So, get your rest!
From what I understand about what DHEA can do, it raises HGH THROUGH IGF-1, if that makes sense. I can’t put it into words but DHEA does the same things to raise HGH as it does to raise IGF-1
And this was mentioned if I remember correctly in Stephen Cherniske’s 2004 DHEA book.
I didn’t see you methion that chelation removes the good minerals too. Did anyone explain that to you? I was on oral EDTA for 2 months- surprisingly my hair test was negative for mercury but off tthe chart for barium. Never having a barium gut test and only being exposed to it breifly as a CNA caring for one patient who pooped it out after her barium xray test in te 1980’s, tere was not a godd reason for this …..unless you watch the video What in the World Are They spraying? About Geoengineering who openly admit they are releasing aluminum and barium …..BARIUM!…. into the atmosphere via airplane. Aluminum, my agronomist tells me, in a solid form is the most abundant mineral in the soil, and the plants basically ignore it and it’s not easily absorbed through the gut anyway (it’s the injections that kill us, flu and pnuemonia shots), but the barium, why would they even think to use that? (they say they are reflecting the sun’s rays back into space).
Ok back to the point, I have been holding steady not havng had to take EDTA again, but I regularly take spirulina and chlorella which are known detox algae, and C (4-8 grams a day) and I hope you will try TMG trimethylglycine. It’s cheap and easy to get online. Also, replace the good minerals- I use kelp meal and feed it to the goats and sheep.
My hair test also showed off the chart antimony- not being around reloading materials, but reusing PET plastic water bottles, I found that those pretty clear plastic bottles have antimony in them and when using them for storing liquids, it contaminates you. I stopped doing that. Antimony was one of the minerals spouses used in Victorian times to poison one another.
have been using TMG for a long time and just recently increased my dose from 1 g to 3 g daily.. So far so good
I got the same problem as you. Systematic fungus infection. I have tried everything under the sun.
Nothing has helped EXCEPT for luqid iodine. You should research it, apparently almost everyone is defincine
With iodine because of our diets.
Hi Matt, I do supplement iodine and have gone as high as 50 mg per day… I’ve reduced that down to 6 mg I think but have been thinking I might want to increase. How much do you take? I use Iodoral – see http://howirecovered.wpengine.com/the-iodine-crisis/
I noted what you had to say about Iodine and here is my experience and what it did for me. Around 2009 (after 8 years of feeling crappy and not knowing why) I finally zeroed in on my digestion and noticed that it took about 13 hours to fully digest a small meal. I didn’t have a clue what to do about it and didn’t know what caused it either.
Finally someone on my Health Group suggested I needed a Thyroid pill, well that did it for my digestion which soon became normalized but I still felt yucky.
Someone suggested I join the Iodine Group at Yahoo, run by Stephanie Buist and thereafter a smaller group was formed called the Iodine Off-Topic Group, both of which have collapsed. Stephanie was a patient of Dr. David Brownstein which wrote the Iodine book. She had Thyroid Cancer and Dr. Brownstein saved her life by working with her and they cured it.
Anyway I was scared to try Iodine and thought about it for a year. Then told the list I was going to get started on it at one drop per day for one week and that each Friday I would increase by another drop and report to them my findings.
Now by this time I had done a Stool Test and found out my Gut was overloaded with Pathogenic Bacteria (about 5 different ones), an Amoeba and Candida and more, not to mention a GLUTEN problem.
Since 70% of your Immune System is in your Gut, it is important to have it BALANCED with good bacteria.
The first two weeks nothing happened, then starting on 3 drops per day, WOW that did it. I had that Yucky feeling leave, so I think the majority of the bugs had died.
This was Lugol’s Solution 5% and the one most widely used. I think you can buy it online.
By week 8 (at 8 drops per day) 50 mg, still feeling good.
During this time, my doctor (after seeing my Uterine Ultrasound) said that I would have to have a Hysterectomy as the thickness could indicate Cancer and it had been that way for 12 years.
It was then (after reading Dr. Derry’s book and Dr. Brownstein’s book) that I decided to double my dose
and go to 16 drops per day – 100 mg. and stayed there for 6 weeks. Had a follow-up Ultrasound which was now at normal limits. Even the technician remarked at her surprise.
Dr. Brownstein says that Iodine is Antibacterial, Antiparasitic, Antiviral and among other things he has used it to treat ADD, Atherosclerosis, Breast Disease, Liver Disease, Prostate Disorders, Thyroid Disorders etc. It will likely raise your TSH but will not stay there for very long.
The most amazing thing that I have read about Iodine is that it will change Cancer cells (which keep on growing) back into Apoptotic Cells, which have a life and which die over time.
I stayed at 100 mg for a year and then back to 3 drops per day. I got rid of breast fibroids, uterine fibroids, no more bladder infections, no more sinus infections,
I have since learned of my MTHFR Mutation C677T and now trying to learn how to deal with that.
Thanks for sharing your story Bonnie, I just showed it to my daughter who has been struggling with digestive problems for a long time… Very motivational 🙂
I had antimony, too, in alarmingly high levels. This was present in both my hair and feces, over several repeat tests, for well over a year. It had me totally baffled. I also eventually concluded that the antimony was coming from the plastic water bottles l was drinking from. The State of California has several lengthy article on the hazards of antimony in water bottles, especially those that sit on hot shelves, or in hot cars. But I kept thinking… my Evian is CLEAN! My Fuji Water is the best!
Finally, I switched to spring bottled water in glass only (seems to be a huge environmental waste, but then, so is plastic) and RO water at home. Antimony GONE. (in both hair and feces). How nice to solve at least one problem.
I feel compelled to comment that all of the sulfur-based supps can make things worse for people with CBS genetic mutations. BioRay’s NDF (micronized chlorella and cilantro) is expensive but has clinical trials that show it’s very effective in removing heavy metals without harm. You may be able to get similar effect with other forms of cilantro and chlorella.
According to Dr. Cutler chlorella has harmed many also…
Can you finish the thought as to why Cutler say chlorella has harmed many.
here’s a starting point: http://onibasu.com/archives/fdc/74558.html
i believe there are many documented cases of bad reactions
Liposomal glutathione and liposomal vitamin c are what removed my heavy metals
If you’re not already familiar with MMS (which is said to rid the body of mercury safely), then you might care to take a look at the following links:
thanks K, I am familiar with MMS and purchased some. Haven’t taken it yet as I opted for ozone in the end. I don’t believe MMS could have any direct chelation effect, but certainly if you restore the bodies ability to naturally detoxify, it could happen indirectly.
I would be really careful with ozone. I drank ozonated water and it made my fungus infection 10 times worse. Ozone make your keto levels go right through the roof.
Fungus feeds off of both sugar and ketos. What really helped me was olive leaf extract with 20% of that stuff in it.
Has to be 20%
Well that’s really interesting Matt! I’m guessing my ketos are really high already without Ozone. I’ve been debating what to hit next and maybe I will postpone the ozone and go back to Fenben now that i’ve got through ivermectin and LDN titration. thanks:)
I have been using ozone therapy (IV push) for about two months. For the first 6 weeks the “ozone itch” was almost intolerable. I was itching all over the trunk of my body and other places besides. But I stayed with it because the chronic candida was actually coming out through my skin. Also, I was taking h202 baths nightly which also was causing candida to dump through the skin. Since starting the ozone therapy, I have been sweating profusely whereas I couldn’t sweat before so I am also dumping mercury through the skin via the sweating route and will sometimes shower mid day to get the sweat laden mercury off my skin.. I say, start cautiously but don’t be afraid of ozone because you will only get better. It is one of the safest modalities out there. I am recovering from colon cancer, Lyme disease and systemic candida and I suspect it all started with mercury poisoning and poor methylation. I am finally starting to feel better after two months on the ozone protocol (2 I|V push injections weekly–give your body time to detox each injection before taking the next one.) Three injections a week is too much for a weakened immune system and will cause you to be miserably sick all the time.
congratulations on your progress Nancy – I just restarted ozone yesterday with my first RI and it went very well:)
Have you ever tried hydrogen peroxide treatment?
yes and I’ve blogged about it – I ended up getting very nauseous and switching to ozone…
Hi ! I have CFS after a very violent mononucleosis at 24 (i’m 41 now) . I also had amalgams but the DMSA test was no mercury intoxication . i’m writing to you , after having read your supplement page , to suggest you to try MSM . It’s a very cheap supplementation. Let me know . For me , it made the difference (while Sam-e and many other supplements , as listed in your page) failed. Hope this may be useful !
thanks Fabio, MSM is another thing that’s been on my list to try. I do take DMSO occasionally and know that 15% of DMSO is converted to MSM, so indirectly I’ve experimented a bit.
Hi, your illness sounds exactly like my own and I also have mthfr. I too am looking at mercury detox. Are you still chelating, any improvement. I’m still working on removing amalgams but fear detox will make me sicker. I react strongly to everything I’ve tried so far. Also I’ve been on norco pain med for 5 years and just found out it depletes glutathione. Should I try and get off the Norco before chelating? Would you recommend anything else before starting? Thank you for sharing your story.
I’m not chelating now but hope to get back to it in six months to a year… I would read a book about frequent dose chelation first. good luck to you Valerie!
I have unbound high plasma zinc with normal copper so please advise me for this. Your website is full of information and keep it up for the best work.
sorry I don’t know anything about high plasma zinc Nina…
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