You might not know this to look at me, but I'm in the fight of my life.
Even though I've learned to manage my lupus, Raynaud's, chilblains, migraines, allergies and debilitating fatigue - I've only recently discovered the probable root cause of my autoimmunity: heavy metal poisoning.
That's a BOLD statement, and while I'm cautiously optimistic, deep down I believe in it BOLDLY.
In April, I was diagnosed with mercury toxicity (also known as brain poisoning) for the second time in my life. That's right, the second time - but more on that in a minute.
If mercury toxicity wasn't enough, I was also tested for lead poisoning. My urine reflected toxic levels nearly 3 times higher than the average person (my result: 5.6, reference interval: <2).
Once again my world was shaken, and this time it felt like a toxic twister disheveling every aspect of my existence. The tumultuous metals literally left every stone and cell unturned, affecting my daily functioning right down to my gut (literally): relationships, work, food, digestion, my nutrition philosophy and how I view the world - check, check and check.<!
I've since learned that environmental toxins are the leading cause of autoimmune illnesses. Funny that I never heard that before. According to Dr. Mark Hyman (who also had chronic fatigue syndrome and mercury toxicity after years of working in a polluted China city, using contact lense solution and consuming tuna fish regularly), we are exposed to astounding amounts of pollution. He's written that over 80,000 chemicals have been introduced into our society since 1900, and only 550 have been tested for safety.
According to the US Environmental Protection Agency (EPA), about 2.5 billion pounds of toxic chemicals are released yearly by large industrial facilities. And 6 million pounds of mercury are poured into our air every year. Read more here.
The few times I've shared my toxic little secret, aka: heavy metal poisoning, I've witnessed an expression that would make you think I had five heads protruding from my neck. Next, I'm typically asked how and why I have acquired these toxicities. Afterall, isn't lead poisoning mainly present in children? These are valid and legitimate questions that I'll attempt to answer, bearing in mind that my research is still ongoing while considering that this likely manifested when I was young.
As Marie Forleo says (and I'm paraphrasing), "When you have knowledge, you have a responsibility to share it. Otherwise you're robbing others of that knowledge."
So here it goes...
Some of you may know the abbreviated version of my story, but it's complicated. I haven't shared the series of events that lead up to my diagnosis. One day I might reveal the details, but for now, here's what you need to you know.
In 2005 at age 23, I had just completed my dietetic internship and developed my first two cavities - one on each molar. The dentist placed amalgam fillings in my mouth, because I was told they would last longer than composite and no one would see them. Around that time, I began my first professional job as a clinical dietitian in a hospital 60-minutes from home.
Prior to that, I had developing health issues: environmental allergies (initially mis-treated as chronic sinus infections with antibiotics and steroid inhalers, then a slew of allergy meds, followed by weekly allergy shots from 2002-2008), regular headaches, mouth ulcers, pretty severe PMS, endometriosis, Raynaud's and chilblains in the cold months. What a man magnet I must have been in my early to mid twenties.
Within a month of having the amalgams placed, I developed daily debilitating headaches and associated them with the stress of a new job, the daily commute and studying for boards.
Soon I switched jobs to a location only 45 minutes from home and within a month of starting I acquired a nasty case of mononucleosis that resulted in hepatitis, elevated liver function tests and jaundiced eyes and skin. A month later, I returned to my second new job and pressed on in pain.
Meanwhile I saw several neurologists, tried every neuro medication imaginable, had CAT scans, MRIs and eventually was admitted to the hospital for intravenous treatments of DHE (dihydroergotamine) in an attempt to control my raging migraines. Preservatives used in this solution include thimerosal (an organomercury compound), chlorobutanol, methyl paraben, propyl paraben, phenylethyl alcohol, disodium edetate and more. So I was essentially receiving intravenous mercury, from the thimerosal, in an osmotic liquid solution to enhance absorption.
One day, I was so ill that my neurologist prescribed 4 mg of intravenous Dilaudid (waaay too much for my size) to dull the pain. Within moments, the room began to spin, I was hallucinating and vomiting. The longer I was admitted the sicker I became, and by the time they discharged me (because they'd run out of medications to administer) I was dazed for days. My pupils were almost completely dilated and eventually my mother gave me a tough love talk to snap out of it, thinking I was depressed from a fresh break up with a med student who couldn't handle my medical problems. This damsel in distress had pretty much hit rock bottom, except that things would still get MUCH worse...
But don't worry because when the physicians ran out of tests, they didn't hesitate to prescribe anti-depressant and anti-anxiety meds to generate more side effects and med interactions.
From that point on my health deteriorated with one infection after the next, and working in a hospital didn't help. I contracted a wretched case of norovirus that sent me to the ER for hydration and tachycardia, followed by a series of strep throat infections with recommendations from an ENT to remove my tonsils after a 10-minute exam. At that point I realized that most doctors I saw, were doing more harm than good. I still have my tonsils, because the sore throats stopped once I discontinued the allergy injections in 2008.
I spent most days jacked up on Excedrin, sweaty and anxious to simply make it through the work day. I'd lock myself in the bathroom and have a quick panick-stricken cry, no longer the "happy go lucky" girl I'd been called in high school. Before long, I was caught up in a vicious downward cycle of rebound headaches.
In 2006, my distraught mother was desperate to help and arranged for me to see a Doctor of Chiropractic (D.C.) recommended by my massage therapist. After multiple visits, he diagnosed me with mercury poisoning based on my history of allergy shots containing mercury, recent vaccinations, daily tuna salad wraps for lunch during my internship and the amalgam fillings in combination with my ever-accumulating symptoms. To this day symptom and toxin exposure coupled with chelation response is the best way to identify mercury toxicity. Ohhh you're a tricky, mean one Mr. Mercury.
It's important to note here that mercury poisoning is not easily detected in the body since it accumulates in the organs, particularly the brain. The most accurate measurement would be to have a brain biopsy, which is definitely NOT a viable option! The problem with urine testing is that mercury will only be detected in the urine or blood during acute or recent exposure. Hair tests also require rather recent exposure and are not known for their reliability, although you can learn how to read and interpret the results here. For all these reasons, I was not tested at the time.
Instead, the D.C. suggested the book Amalgam Illness by Andrew Cutler, PhD, PE - a doctorate in chemistry from Princeton with a bachelor's in physics and research experience in chemistry and engineering. Dr. Cutler used his extensive understanding of molecular biochemistry and medicine to cure his own Amalgam Illness (also, ironically, AI). Both the book and the D.C. advised removing the amalgams as soon as possible with careful precautions.
While this was well intentioned, key components were missed:
1) Improper amalgam removal - My dentist went above and beyond to accomodate a safe removal using a rubber dam, sterile air and a vacuum to avoid reabsorption of the mercury, yet I was on an incorrect supplemental regimen with a chelating agent (Alpha Lipoic Acid or ALA) at the time of removal, both fillings were removed at once despite recommendations to have amalgams removed on two separate occasions, and I did not us a "biologic" dentist which often takes additional precautions.
2) Improper supplementation - I've come to learn that proper chelating is a deal breaker. If it's done correctly, it will facilitate detox and healing. If it's done any other way, it makes you sicker. Since supplemental chelating agents have a 3-4 hour half-life, it's crucial to take the supplements every 3-4 hours to avoid recirculation and reabsorption. Instead, I was given one large dose of ALA to take all at once on a daily basis. This went on for months.
The literature is very clear, these errors lead to mercury redistribution to vital organs, especially the brain, rather than removal from the body.
Before long my symptoms progressed and soon the D.C. indicated that I might be developing an autoimmume illness. Headache, fatigue, sore throats, mouth ulcers, loss of appetite, weight loss, feeling feverish, miserable body aches, daily tears, and then... one morning I woke up, stepped out of bed and it felt as though my left ankle had been kicked. That day, I limped around an 8-story 900-bed hospital with deep concern. I knew something was off, and that was the straw that broke this camel's back.
I had read that 70% of lupus patients are diagnosed following sudden pain to a particular joint, such as the ankle or wrist. I quickly made an appointment with a rheumatologist and requested lupus testing with a list of logical reasons. The rheumatologist cooperated and a few weeks later, I was diagnosed with undifferentiated connective tissue disorder and probable "mild lupus" based on my cumulative symptoms, an elevated ANA, SS-DNA and SSA(Ro).
I was given essentially no education and placed on plaquenil and prednisone. With the new diagnosis, all of my symptoms seemed to fall into line. Soon this single white female supporting herself and a new home needed to replace an automobile, so I stopped seeing the D.C. and finished up the expensive supplements. That was it.
This is where my abbreviated story kicks in: I used the conventional treatment for a year (2008-2009) and felt more miserable than ever. Somewhere in there I snuck in a marriage to an amazing man who chose to love me in spite of my disease. Then, I discovered nutrient rich, or plant-based eating, and fasting for health (early 2009) from Dr. Joel Furhman.
After cleaning up my act, going vegan for nearly four years and revamping my diet, three of my four laboratory markers normalized - despite discontinuing nearly all medication. I began feeling better and reclaiming my life. I created eaturveggies.com and witnessed impressive results with my clients. By 2010, I was running again for the first time in 8 years. Life was looking up!
But the probable root cause (mercury) was never fully addressed and I gradually became more sensitive to food, chemicals and surroundings - I'm now like a canary in the coal mine. What most people wouldn't bat an eye at brings me exhaustion, overwhelm and disillusion. Light, sound and crowds regularly result in me taking refuge in my couch.
By 2011, my health ever so slowly began to deteriorate for the second time. Initially, Joe and I associated it with a stressful non-profit position I had accepted and essentially ran. I consulted with my doc and upon his recommendations, I begrudgingly began adding longer fasts to reduce inflammation in anticipation of the winter months (chilblain season). Yet daily headaches, severe allergies, skin rashes, muscle pain and fatigue crept back into my life. Meanwhile new issues developed: multiple food sensitivities, gluten intolerance and irritable bowel syndrome. My energy levels worsened, brain fog took over, emotions ran high, and social interaction drained me to the point of debilitation.
I was absolutely stumped and so were my docs. Knowing that I had many environmental allergies (grass, trees, ragweed, dust mites, mold, pollon, cats, dogs), I decided that I must be missing untested food allergies. Maybe that was the underlying factor. So I had IgA and IgE/IgG testing done. Each time I incorporated the results, and while my food supply became leaner and leaner - so did I.
Any improvements that followed from those tests, were temporary at best. So my search continued. Next I realized that yeast and candida could be an issue from years of chronic antibiotics, antifungals, birth control, steroids and more. I removed yeast, vinegars and sweets from my diet.
I examined my home environment for potential toxins, but I had lived in over ten locations in the past twelve years. I was told to be patient and to give it time, but deep down I knew that there was a missing link. Hadn't I waited long enough?
One day as I was cleaning off my bookshelf in preparation for a cross-country move to AZ (in order to avoid chilblain season), I stumbled upon Dr. Cutler's book Amalgam Illness. I paged through, assessing whether to keep it or not, and found a new section (page 108) that resonated with me on every level. It said, "Mercury poisoning can cause autoimmunity. If you have autoimmunity from mercury poisoning it will probably go away when you get detoxed. Some physicians will think you have autoimmunity INSTEAD of being mercury poisoned, but they don't think autoimmunity is curable. It is up to you to decide whether you have autoimmune disease as a symptom of mercury poisoning."
All these years, I was certain that I could reverse my disease, because my lupus was never as severe as fellow patients. I did everything possible diet-wise, but new symptoms progressed. I fasted as much as was feasible, but my pain and hunger never subsided as described - even after 75+ days of water, juice and liquid fasts. I later learned that people who fast with heavy metals have a lot of pain, this is an understatement. Deep down I knew something was missing, because I didn't recover like many autoimmune patients had after incorporating a fraction of the interventions I taught. Little did I know, the answer had been resting on my book shelf for years. A bittersweet thought where I didn't allow my mind to linger.
I pressed forward and reflected on my past...
As a child I was rashy, quiet or "shy", and didn't tolerate vaccines well. My older sister recalls getting the same vaccine as me in the thigh. She was fine, but I limped for a full day following the shot. When weekly allergy injections (containing thimerisol) in both arms were used to treat my allergy headaches, I began having sore throats each time I received a shot. When I was required to get the flu shot in the hospital, I would undoubtedly feel ill afterward. When I had several vaccines in preparation for a trip to China - all around the time of my health crisis, my body felt stressed to the max. When the mercury containing amalgams were placed on each molar - my headaches elevated to a new level. It all began to make sense.
Next, I researched online, listened to webinars such as this and joined the frequent dose chelation list serve. Soon I contacted Dr. Pompa, a D.C. who overcame mercury toxicity by using Dr. Andrew Cutler's chelation protocol. I had a conversation with Dr. Pompa and after working with over a thousand heavy metal patients in his practice, he was certain I was dealing with heavy metal toxicity. I hired him and he helped to re-vamp my diet, once again, in order to enhance the methylation process so closely linked with the Kreb's cycle - which is crucial for detox and cellular function.
A DMSA urine challenge identified the lead, which further explained my symptoms. Wiki defines lead poisoning as the following:
"Lead poisoning (also known as plumbism, colica Pictonum, saturnism, Devon colic, or painter's colic) is a medical condition in humans and other vertebrates caused by increased levels of the heavy metal lead in the body. Lead interferes with a variety of body processes and is toxic to many organs and tissues including the heart, bones, intestines, kidneys, and reproductive and nervous systems. It interferes with the development of the nervous system and is therefore particularly toxic to children, causing potentially permanent learning and behavior disorders. Symptoms include abdominal pain, confusion, headache, anemia, irritability, and in severe cases seizures, coma, and death."
Metals form covalent bonds with other metals in order to stabilize their outer electrons. Covalent bonding results in a very strong connection, especially between two metals, so they're hard to break apart. Therefore, metals attract metals, and once I had accumulated mercury in my system I was more likely to pick up lead or vica versa.
Potential lead sources include:
Mothers may pass metals onto their off-spring
Contaminated drinking water
Lead-based paint and industrial materials, used prior to the lead paint ban in 1978, which have polluted East coast cities
Residual lead in soil from polluted urban areas (even chickens' eggs in urban areas have been shown to have high amounts of lead)
Lead-containing products from the Middle East, South Asia and parts of Africa
Toys, mini blinds, herbal remedies, fishing lures, ceramic glazed (painted) dishes, solder in canned foods, animals hunted with lead bullets and more
I'm still determining my lead sources, but I know I'm susceptible based on mercury exposure, genetic makeup, an inability to detox effectively (due to genetics and/or blocked pathways), a vulnerable and inflamed system. I look forward to learning more personalized information through genetic mapping.
What am I doing now?
I'm using supplemental (not IV) chelation therapy to detoxify my body from the metals. You can view more details from this chelation protocol. If my experience resonates with you, I highly recommend hiring a skilled professional who has chelated themselves, or at the very least has helped patients to recover successfully.
I began chelating in September with DMSA (Dimercaptosuccinic Acid) every 7-10 days for AT LEAST 3 full days, and no longer than 7 days at a time to avoid adrenal fatigue. I take the DMSA around the clock every 3 hours through the night, and I recently finished round 13. Each round presents a new set of symptoms and challenges, as I re-live the heavy metal symptoms detoxing from my body. Therefore, supplemental support is essential to keep detox channels open, and to ensure I'm receiving adequate nutrients that could otherwise bind to the metals and chelates without being absorbed.
DMSA aids in removing the metals from my body, but soon I'll begin ALA to remove the metals from my brain. I'm told I'll need to maintain this regimen for the next three years, at least - based on my response to the chelation thus far, my history and symptoms. This means no pregnancy during that time, to prevent having a child that's susceptible or sick from heavy metal poisoning. Women in their childbearing years should be made aware of this information, in order to avoid childhood diseases such as autism spectrum disorders.
My understanding is that a metal-free person would not respond to chelation, but I quickly developed every symptom under the sun. As a former oncology dietitian, I've nick-named my weekly chelation therapy "chelo" to capture the severity of the experience, the frequent rounds and ever changing doses. This is not to undermine a cancer patients experience in any sense, but to convey the chelation escapade in a way that other people might understand. Heavy metal poisoning can be deadly and the treatment is life altering.
Despite this battle I'm exercising, seeking daily sun therapy, sweating regularly (warm baths, a steamy sauna or hot yoga encourage toxin removal), reducing environmental toxins in my life and eating cleaner (organic as able) than ever. I eat as many plants as my sensitive stomach allows and supplement with organic, grass fed animal products as needed while incorporating my LEAP test results (which excludes reactive foods and chemicals from my lifestyle).
Including select animal sources has been important for me to ensure that I'm properly fueling the methylation cycle with well absorbed sources of B12, and even some sources of saturated fatty acids (like capric acid and lauric acid) to help stimulate methylation.
I consume cultured and fermented beverages and foods (rich in probiotics) daily, and I've begun drinking bone broth and using it in soups and stews to help restore my leaky gut with its collagen rich content. I also use intermittent fasting (500-800 calories from cultured liquids) for 24 hours once a week to foster healing, expedite detox and keep inflammation at bay.
And of course, I avoid gluten and anything that makes me feel sick.
I found a "biologic" dentist who did an extensive exam to ensure that no metals remain in my mouth, while teaching me new techniques to reduce gum inflammation.
I continue to educate myself, aim to keep stress at bay, and work with a therapist to develop coping mechanisms to deal with unpredictable anger, relentless symptoms and chronic pain that accompany chelation. Mental health is critical depending on where the metals settle in the brain each round.
Ever hear of Mad Hatter Syndrome or the saying, "mad as a hatter?" This phrase likely evolved because mercury was used in the making of hats back in the 19th century. This was known to affect the nervous systems of hatters, causing them to tremble and appear insane. A neurotoxicologist reported that, "Mercury exposure can cause aggressiveness, mood swings, and anti-social behavior."
While we only have anecdotal evidence to support these associations, as someone dealing with this disease I can tell you that it's very real and very unusual behavior. Feeling "mad as a hatter" is by far the worst side effect compared to all symptoms combined. Many patients lose the ability to look others in the eyes and become socially awkward. While I maintain eye contact like a champ, I tend to avoid people like the plague. After years of living with chronic pain I can fake it till I make it, but once I'm alone I'm drained for days. This is one of many unexplainable challenges that presents uniquely to each metal patient.
According to Dr. Andrew Cutler, symptoms related to mercury poisoning include:
Schizophrenia spectrum disorders
Borderline personality disorder
Attention Deficit Hyperactivity Disorder
Manic depressive disorder
Multiple chemical sensitivities
Irritable Bowel Syndrome
Not to say that anyone with the above conditions has heavy metal toxicity, but it is important to note how many of the above connections are related to autoimmune and mental illnesses. For me, this helped to connect the dots because at some time throughout the past 8 years, I've experienced 12 of the above conditions.
Obviously not everyone is heavy metal poisoned, and there are no guarantees. Only time will tell, but when I chelate those symptoms which presented during the mercury exposure either worsen or temporarily improve - to a degree. Each round is unique and presents new challenges, which is why Dr. Pompa calls it "the dance."
What I call "metal head" (heavy debilitating headaches, brain fog and confusion) which began in the weeks following amalgam placement, now comes and goes with chelation. For me the metals (specifically lead) explain why severe GI symptoms have developed in recent years, and it provides a strong indication that I'm on the right track. Fortunately the ankle pain has improved with chelation. While these are small steps in the scheme of things, I believe that removing the heavy metals from my body is the missing link to my recovery.
Like myself, more and more people are discovering toxicities and the repercussions of the industrial era. This could help explain why so many of the above conditions are on the rise. If you have a perplexing myriad of symptoms, I encourage you to learn more about environmental toxins. Sometimes it requires repetition to make the connection. Check out these resources for more information (as well as those linked previously):
Doctor's Data Heavy Metal Testing
Generation ToXic DVD - Surviving and Thriving in a Toxic World
The Autoimmune Epidemic
Tired or Toxic? A Blueprint for Health