My Battle with Mercury Poisoning - A Cautionary Tale

Mercury poisoning has irrevocably changed my life course in many negative ways. I had it in my power to be a better self-advocate for my own health, but I failed to do so, and now I am paying a steep price. My hope is others will read this and avoid similar mistakes, whether it is mercury poisoning, or some other medical condition that is similarly obscure and lacks mindshare with mainstream medical professionals.

I have amassed a very high level of mercury in my body. My lead is also high, but it is the mercury that brought me to my knees, both physically and mentally. A month ago, I was at risk for both renal failure and mental failure. Indeed, I did suffer from a brief “break” in November that caused me to make some very bad life-altering decisions, hurting others in the process. Over the 2020 holidays and into the first couple of weeks of 2021, I wasn’t sure if I was going to get through it sane and/or alive.  I feel very fortunate to be writing this post in early February.

I hope that some of you reading this might recognize some of my experiences and symptoms and take steps to protect yourselves (or your loved ones) before you reach my level of damage. Also, I have provided links to resources at the bottom of this post. My understanding of mercury is certainly higher than most people, but nothing here should be considered medical advice or peer-reviewed science. This post reflects my understanding of the effects of mercury on the human body and mind, through the lens of my own experience and informed by medical professionals and scientific publications. Please note I am not going to expose the names of any of the people in my life who were party to this, whether personal relationships or medical practitioners. This post is meant to be about what mercury can do to you, how to recognize it, and how to self-advocate in the medical system.

It turns out I have been unknowingly building mercury up in my body for decades. While there was evidence, modern medical practitioners don’t see a lot of mercury poisoning, and my symptoms were misapplied to non-mercury causalities. I’ll share just how wrong modern medicine can be in this post, but to be fair, mercury is tricky. The symptoms can be hard to correlate and link to what is a relatively rare medical condition.

Unfortunately, because of my body chemistry, I had become a mercury bomb, and in early 2018 I set that bomb off, to disastrous effect. The disaster was compounded by a medical system that incorrectly diagnosed my symptoms several times before finally getting it right in the Fall of 2020. Here again, medicine failed me and put me in a precarious situation; while I had a proper diagnosis, my initial doctor’s recommended course of treatment was largely ineffective. Had I not switched doctors in December, I probably wouldn’t be writing this now.

Symptoms

For most of us, mercury and other heavy metals are rarely life threatening, although fetuses and children are at a significantly high risk from heavy metal exposure.  Our adult bodies can process reasonable amounts of heavy metals and pass them through our waste systems. According to the WHO, a mercury exposure of under 45 mcg/day is considered safe. Seafood deemed safe for human consumption has less the 1 mcg of mercury per serving. Thus, even a food like tuna sushi which can be fairly high in mercury, doesn’t pose a threat unless consumed in vast quantities every single day over a prolonged period of time. The other way for mercury to threaten our health is to get large doses of it in a concentrated period of time, typically in the workplace. However, with modern worker safety protocols in most countries, the incidence is very low. Unfortunately, I am not like most of you. My body doesn’t produce the chemicals needed to self-remove heavy metals, and thus the vast majority of mercury and lead I have inhaled and/or ingested my entire life remains in my body. I have not been able to find a definitive answer for what percentage of the population is like me, but it is not zero.

The symptoms of mercury poisoning can be innocuous at lower levels. In my case I had some mild balance issues and intermittent tremors in my hands. I also had “low energy” symptoms that mimicked hypoglycemia. The balance issues, which are not an inner ear problem, but a processing problem, are called ataxia. The ataxia caused me to alter my gait as I got older, walking slower with legs spread further apart. The tremors, when they were mild, were annoying, but did not impair any activities of life or work. The low energy came and went, but it was something I could always power through. I first noticed the tremors about ten years ago, though the ataxia goes back over fifteen years.

My first big mistake was not taking these symptoms seriously when they originally manifested. I am one of those people who comes from two lines of long-lived ancestors, and I went through life thinking I was invulnerable. I remember mentioning the tremors to my PCP a decade ago, and I was told I needed to take vitamins. Another bit of advice I got was to reduce my stress. I knew this advice did not explain the causality, but I figured I would let it go and deal with it later if the symptoms got worse. I should have been my own health advocate and pushed the medical establishment to give me a definitive diagnosis a decade ago, before I permanently damaged my body and put my life at risk.

From 2010 through 2017 my symptoms gradually got worse, but there was never a big step change, and as the symptoms weren’t impairing anything significantly, I continued to ignore them. Then, in 2018, I was motivated to lose a lot of weight – almost 40 pounds – between March and August. That weight loss should have made me feel much better, but it did the opposite, amplifying my symptoms 10X. The shakes and tremors became nearly constant and they were interfering with basic things like cutting my own fingernails and typing on my phone. The large muscle shakes and lack of energy were extreme at times. My balance became dangerously impaired. I had to be very careful traversing stairs, turning corners, and even standing in the shower.

In early 2019, I saw an endocrinologist thinking I had some sort of blood sugar or energy regulation issue, but testing revealed nothing out of the ordinary. After two months of daily blood testing, it was clear my blood sugar remained in the safe range, usually below 100 mg/dl, but never below 80 mg/dl. There was nothing wrong with my thyroid or any other system of energy regulation. My endocrinologist never suggested checking for heavy metals. After a few months, I abandoned that path of exploration, but I did notice something in that time frame. My symptoms got better if I didn’t drink alcohol.

At this point, I should explain for those who don’t know me, I was a whiskey enthusiast. If you ever did spend an evening with me, at work or in personal life, you knew me to be a prodigious consumer of fine whiskeys from around the world. You also know that I rarely drank at a pace that would cause my blood alcohol content to cross the line of defeating my frontal lobes (particularly at work), and thus I didn’t get inebriated and sloppy. However, I did drink for a long period of time each evening aided by a high body mass with which to absorb the alcohol, and I did that consistently, seven days a week, for over 20 years.

Every January I took either a week or a month off from alcohol as a “dry January” participant. It was in February 2019 when I discovered the alcohol made my symptoms worse when I resumed drinking after my January break. After failing to detect any problems with my endocrine system, I decided to give up alcohol for a much longer time to see if that cleared up the symptoms. Not drinking made the symptoms less extreme, but they were still bad. At one point late in 2019 I tried drinking intermittently at lower levels, but that didn’t really work well. 

Diagnosis

In early 2020 I went to a neurologist to see if there might be something other than alcohol causing my symptoms. His diagnosis was cerebellar ataxia, which is a condition (not a disease) that can be caused by many things, including alcohol. Effectively, something in your body causes the condition of your cerebellum to degrade, which in turn impairs balance and motor functions.

My second big mistake was “leading the witness” and pointing this neurologist at alcohol as the culprit. Alcohol clearly had an effect on my symptoms, but that didn’t mean it was the root cause. In my interview with him I went on and on about the amount I used to drink, the experimentation with not drinking, and my belief that the two were correlated. He looked at my MRI and concluded that I needed to stop drinking permanently so as not to do further damage to my cerebellum. In retrospect, the neurologist should not have been so easily lead, but MDs are human beings too, and you can inappropriately influence them if you go in with your own narrative.

By the spring of 2020, I was starting to fall apart. I was becoming increasingly dark and moody – a trend that had started in 2018 when the mercury levels first jumped up in my brain – and I was getting short with people, particularly in my personal life. I started to sleep less and less, lying in bed most nights staring at the ceiling in an endless loop of obsessive thinking. I also developed an uncharacteristic level of paranoia. I chalked it up to the perfect storm of COVID, a financial stress that I was experiencing, and the emotional stress of a serious undiagnosed medical condition that was continuing to get worse even though I wasn’t drinking.

That summer, I went to another neurologist, who presumptively diagnosed me as having an autoimmune disorder that was causing my immune system to attack my neurons / myelin. We started testing for the known disease types, like MS, but never got to a definitive diagnosis, and my condition continued to deteriorate. It was becoming apparent to me that I needed to get out of the world of neurology and look for another cause.

In late August, I was referred to a local DO who was highly recommended by people I trust. He was a terrific doctor, and he invested a lot of time interviewing me, testing my balance and tremors, and getting familiar with my medical history. He ordered 19 blood tests, and he personally called me on a Sunday after reviewing my lab report to tell me that I needed to immediately come in for a consultation. That’s when I first heard the words “mercury poisoning”. The amount of mercury in my blood was 21 ng/ml, which is double the level deemed indicative of a toxic exposure. Not a lot of people get mercury poisoning, relatively speaking, and a reading double the indicative level for toxicity was alarming.

Treatment

He referred me to a local holistic practice that specializes in chelation (pronounced ‘key lay shun’) therapy – the means by which heavy metals are removed from the body. But they were not taking patients, so I used a search engine to find a doctor more than an hour away from my home, which was the closest I could get. There aren’t a lot of options for those seeking chelation therapy. It is typically administered by the relatively few DOs, not MDs. The whole thing felt very disconcerting because mercury can be a very serious toxin, yet it really is very difficult to find treatment options.

This is where I made my third big mistake. Once I realized that mercury poisoning was outside of the mainstream, I should have done my own research (something I have since done). Had I done so, I would have interviewed this doctor and moved on to another one. I want to be clear; I don’t believe this doctor did anything wrong per se. His approach to treatment of mercury (400 mg of EDTA plus 5 g vitamin C by IV once a week, and 400 mg of EDTA orally the other six days) has efficacy, as EDTA has been used in a variety of heavy metal chelation treatments for decades. But it is not the treatment I would have self-advocated had I made myself informed, and I can tell you for certain the treatments were not effective for me. My symptoms continued to get worse from September 2020 through early November 2020 even though the indicative level in my blood fell to 12 ng/ml.

What I didn’t realize at the time was that it wasn’t just my physical symptoms getting much worse, it was also my mental state. What I now know, but didn’t know then, was that I was suffering from a condition called erethism, which some may know by its other name – Mad Hatter’s disease. Erethism is the result of prolonged exposure to large quantities of mercury in the brain. The symptoms include mood swings, agitation, insomnia, psychosis, and ultimately death. I was well down that progression.

Erethism is nasty business once it gets a hold of you, and for me it had the unfortunate consequence of bringing on a true manic-borderline-psychotic break which turned my life upside down. There was a convergence of pressures and events that resulted in my snapping into a manic state, losing three weeks of my life in that manic state, much of which I cannot remember, all of which fundamentally changed the trajectory of my life. But when the manic state subsided the Sunday after Thanksgiving, I knew I was in real trouble, and I got myself new doctors, both medical and psychiatric.

I also did a lot of research to get myself smart on mercury poisoning treatments to make sure that I was making informed choices. I found a doctor who specializes in these treatments. He uses the chelating agents that work for me (DMPS and DMSA, the latter more for the lead and its ability to cross the blood-brain barrier), and he uses provocation urine testing to measure the amount of mercury coming out of my body. Without doubt, the type of mercury in my system was predominantly methyl mercury [CH3Hg](+) from consuming a lot of sushi and seafood rich in methyl mercury. My symptoms all aligned with methyl mercury as well. But I also recall working in an electronics lab in my college days where I suspected I was exposed to inorganic mercury Hg(2+), so I also had a GFR test to check kidney function. That test came back with an eGFR of 39, which is indicative of severely decreased kidney function, which made it even more important that I get the mercury out of my body quickly.

By the end of this December my world was closing in on me, and I was in a very difficult spot. I had just started the new treatments, so I had no relief from any of the symptoms, and I also had the additional stress of potential renal failure. The erethism was fueling paranoia, insomnia, and dark thoughts. I wasn’t sure I was going to pull through. At no point in my life have I been anywhere near that low. It was frightening and humbling.

Thankfully two weeks ago, after four weeks of the new treatments, my head started to clear, and I could feel the erethism starting to lift. I also had evidence that the mercury was coming out of my body in great quantities with the urine testing. To be clear, I am not out of the woods yet, but for the first time since early 2018, I don’t feel like I have the weight of the world on my shoulders and I’m starting to feel like “myself”.

The figure above is the result of my most recent toxic metal test using 1750mg of DMSA and 250mg of DMPS as the provoking agents. Despite four months of EDTA treatments (which were not particularly effective), and six weeks of very aggressive DMSA and DMPS treatments, the mercury is still registering well above the level considered the safe reference level. The good news is these chelation agents are very effective at pulling the mercury and lead out of me, as this test indicates. The bad news is there has been no slow-down in six weeks, indicating I still have plenty left in me.

Earlier in this post I referred to myself as a mercury bomb. In the last 30 years I have slowly traded 40 pounds of muscle mass for 60 pounds of body fat. Mercury in your body binds to lipids. In effect, as I was adding body fat, I was creating an ever-expanding storage shed for the mercury, which is why my symptoms never really got bad through 2017. But in 2018 when I dropped 40 of the 60 pounds in six months, all of that stored up mercury had to find a new home, and much of it attached to the lipids in my brain and nerves. And that is why I took a giant step change in the severity of my symptoms that summer.

Here’s an important lesson for all of us. If you get sick when you lose a lot of weight, and it isn’t blood sugar regulation-related, look for evidence of toxins that naturally store in fat cells. I really wish I had known that one simple rule-of-thumb back in 2018. I’d have worked through doctor after doctor until I found the mercury, thus catching it before if decimated my nervous system and caused me to fall prey to erethism.

I am very fortunate. Had I not gone to the doctor in August 2020 who found the mercury, or had I not switched to a new doctor and treatment regime in December 2020, I’m pretty sure I’d be in a very bad place right now. And to be clear, I am not out of the woods yet. The amount of mercury coming out of me indicates there is still plenty more left. The erethism should fully clear up with the complete removal of the mercury and some therapy. However, the nerve damage is pretty extensive, and it is not clear how much of the mercury can be pulled out of my nerves / myelin, nor is it clear how much regeneration my body can perform on my nerves and my cerebellum. It is likely I have permanent impairments. And let’s not forget, it is unlikely I will ever enjoy a drink of whiskey again, a minor loss in the grand scheme, but it all adds up.

Lessons Learned

If you’ve read this far, I hope you have taken some lessons away. We must all advocate for our health and force a definitive diagnosis and efficacious treatment regime for any condition we identify. We must do our own research when we have conditions that are not well understood by mainstream medicine, and we must use our research to force informed discussions with our chosen medical practitioners. Finally, if you have symptoms like mine, get yourself tested for metals. Start with blood tests, and if anything at all is indicated (even slightly elevated amounts), get a provocation urine test to get a much more accurate indication of the level of metal in your body – blood indicates a problem, but not necessarily the true severity of metal loading in your tissues.

I really hope someone out there reads this and takes action to spare themselves the absolutely unnecessary trauma I have put myself through and the permanent impairment I will carry forward. Don’t act invulnerable, even if genetically you like your odds. It’s not a game any of us can afford to lose. And don’t make this about matching my symptoms or about heavy metal poisoning. If you have a condition without a definitive diagnosis or a treatment regime that is not efficacious, do your own research and advocate for your health and keep pushing the medical profession to get it right.

In closing, I have no doubt I will overcome this, albeit with some diminished quality of life. As the mercury levels come down, I feel my strength, both mental and physical, returning rapidly. But there are some things I cannot undo that will haunt me for the remainder of my life. This has been a tough and very dangerous lesson learned.

Finally, I have found the following publicly available articles to be very helpful in piecing together the “puzzle” that has been mercury poisoning for those of you who might think you have been affected:

Mercury Toxicity and Treatment: A Review of the Literature (nih.gov)

Mad hatter's disease: Definition, causes, and symptoms (medicalnewstoday.com)

IV Chelation Therapy: Finding a Doctor Who Will Test for and Treat Heavy Metal Toxicity - American College for Advancement in Medicine (ACAM)

DMSA Therapy for Heavy Metal Detox - Harbor Compounding

Microsoft Word - WHO_LeadChelation

HG - Clinical: Mercury, Blood (mayocliniclabs.com)