MercuryLife

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  • My Story
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Introduction

Hello, and welcome to the inaugural post of the MercuryLife weblog. What is this blog all about? Well, with any luck, it's going to be a useful source of oft-updated information on something that's of utmost importance to almost every one of us: mercury. Even if you don't realize it, trust me -- it is important to you. Because, right now, almost guaranteed, you are carrying around a certain amount of it in your brain, your kidneys, your lungs, your liver, your GI system, your thyroid, your hypothalamus, and on and on.... Sound preposterous? Check out this image of a sheep containing radiologically-tagged mercury (Hg203):

The fascinating part is that this picture of the sheep was taken only 29 days after radioactive mercury was mixed with standard dental mercury and placed in amalgams in the sheep's mouth. As you can see, 29 days later the mercury is distributed in the (a) sheep's gastrointestinal tract, (b) kidneys, and in the (c) gum and alveolar bone of the jaws. The (d) liver is obscured by the gut, but would show large concentrations of mercury since the liver is the major organ of detoxification in the body. The mercury was also found (in lower concentrations) in the the sheep's brain, cerebrospinal fluid, pituitary gland, thyroid, and adrenals. (Hahn, L.J.; Kloiber, R.; Vimy, M.J.; Takahashi, Y.; Lorscheider, F.L., "Dental 'Silver' Tooth Fillings: a Source of Mercury Exposure Revealed by Whole-Body Image Scan and Tissue Analysis," FASEB J. 3: 2641-2646; 1989).

In response to critics' claims that the sheep amalgam results were not applicable to humans because sheep chew more frequently, a similar study was undertaken on monkeys, which have chewing patterns more similar to humans. The results were pretty much identical to the sheep studies.

Note the one place I did not say you were carrying much mercury -- your blood. In fact, this might be the main reason the mercury epidemic has gone undetected for over 170 years (the first amalgam was placed in the United States in the 1830's). Mercury from acute exposure only remains in the blood for a few days after the exposure, then quickly is shuttled out to various tissues and organs, binding tightly to cell proteins. Thus, doctors and scientists who have investigated the presence of mercury poisoning through blood testing have come to the mistaken conclusion that mercury toxicity is not widespread.

Tooth_with_filling_4But, you're thinking, my dentist has told me that when mercury is mixed with other components of amalgam -- silver, tin, copper, zinc -- an inert, "biologically inactive substance" is created. Perhaps you've heard the argument that, while pure chlorine (Cl) gas could kill you if you saturated your steak with it, a little salt (sodium chloride, NaCl) makes it more tasty. But, this argument is inapplicable to mercury amalgam because sodium chloride is a compound bound by strong ionic bonds. Ionic bonds are formed by the electrostatic attraction between two oppositely charged atoms (ions). In contrast, amalgam is a mixture of metals that are not in an ionic state, and hence do not form an ionic bond, but instead form weak, uncharged metallic bonds. This is a problem because, by itself, metallic mercury has a very low evaporation temperature and readily turns into a vapor. Here's an interesting fact I learned recently: ever wonder why mercury is the only metal that is a liquid at room temperature? Because it has relatively weak bonds with itself (i.e., mercury molecule-to-mercury molecule), which is also why it vaporizes so readily. This process is not stopped by the weak bonds that mercury makes with the other metals in amalgam, which are continuously, naturally broken.  And, consider that approximately 80% of inhaled mercury is absorbed through the lungs by humans. Additional mercury from the breakdown of amalgam is also dissolved in saliva and swallowed, some of which is absorbed.

The point is, as I originally stated, like it or not, believe it or not, you are a walking mercury repository. The issues, then, are: (a) how readily does your body excrete the mercury naturally, as compared to your daily exposure (i.e., how much are you accumulating per day?); and (b) what effects does the mercury you are accumulating have on your immune system, neurological system (including brain), endocrine system (glands/hormones), cardiovascular system, reproductive system, and so on. I believe that each answer to these questions has a large genetic component, and a large environmental component (e.g., familial genes, source of mercury exposures, amount of prenatal exposure, etc.). For myself, the answers are: (a) apparently a lot of mercury accumulated, hitting the breaking point with the Hep B vaccines; and (b) destructive effects all over my body, which I hope to chronicle here. Without a doubt, I was (and still am) living the mercury life. My case is very clear. But the information I've learned through my own experiences leads me to believe that a whole lot of people are also living the mercury life, although to a much lesser degree.

Brain_cartoon_v2In particular, I've experienced unexpected changes in mental and emotional functioning since detoxing that I certainly couldn't have predicted, and even today have trouble exactly quantifying. Yet, these issues appear to be very common in people all around me. My suspicions have only been reinforced by two people close to me who have themselves experienced very similar mental and emotional changes since detoxing mercury, in a relatively consistent and predictable fashion. Given that mercury is first and foremost known as a potent neurotoxin, this makes a certain amount of sense. Many scientists and doctors believe that the nervous system (including the brain) is one of the most susceptible systems in the body to the toxic effects of mercury -- hence, the raging debate over the autism/vaccine link. Is it possible that a lot of people who fight internal demons might actually be fighting a very real neurotoxin that has hijacked their brain to some extent? I don't know for sure, but I can say, for at least for three biologically-unrelated people, this is definitely the case.

Mad_hatter_1Remember the Mad Hatter in Lewis Carroll's book, Alice's Adventures in Wonderland? The Mad Hatter often spoke in gibberish: "Twinkle, twinkle, little bat! How I wonder what you're at! Up above the world you fly, Like a tea-tray in the sky." Amusing today, but this was actually based on a bit of history. "Mad hatters" were hat makers in the 19th century who worked long hours with mercury-treated pelts, absorbing mercury through their skin and inhaling mercury vapor. Incoherent speech was actually a common trait among the mad hatters, along with shaking, unusual shyness, mood swings, depression, sluggishness, acute anxiety, irrational fears, and a dwindling intellect. People with Mad Hatter's disease blushed readily, were uncomfortable in social situations, and tried to avoid people. They were easily upset, had trouble with movement and coordination, and were prone to agitation, irritability, and aggression. When mercury was discovered as the cause of their illness, mercury was eliminated in the process and subsequent generations of hatters were no longer "mad." Is it possible today that a good number of us are the 21st-century version of the mad hatters?

Poison_earthI think the MercuryLife is a pretty fair description of life on Earth at the start of the 21st century. If you don't have amalgams (which is a pretty small percentage of us -- 200 million Americans are estimated to have fillings), have never received a vaccine, and don't eat fish, you are still receiving daily mercury exposure through air and water, as human activities may have doubled or tripled natural amounts of mercury in the atmosphere. These activities (such as coal-fired generators and medical-waste incinerators) are causing the mercury content of the atmosphere to rise by 1.5 percent a year. ("Our Preferred Poison", DISCOVER Vol. 26 No. 03 March 2005, p. 58-).

Just what all of this means has been, and will continue to be, subject to incredible debate. In fact, I've never seen a more controversial area of contemporary science. I don't have the answers. But I have a lot of first-hand experience in what these issues mean to me and others, and many thoughts of what it could mean to all of us, which I look forward to sharing on this site.

Wecome to MercuryLife!

May 08, 2005 in Introduction | Permalink

My Story

Here is my story, in chronological order:

Photo_old_book_2(1) The Beginning of My Story 

(2) How Could Things Continue to Get Worse? 

(3) You Don't Know Pain Until You've Had Back Pain 

(4) Welcome to the Fibromyalgia Club: You're the 10th Million Member! 

(5) A Smorgasbord of Other Problems 

(6) Finally...Light at the End of the Tunnel

(7) Chelating My Way Out of the Darkness

After reading my story, one of the questions you might have is: how do you remember all of those details from your medical history, or why should I believe you? Well, here is the explanation of where those details come from.

May 07, 2005 in My Story | Permalink

The Beginning of My Story

First, you can get a good overview of me and my story by going here.

Medical_recordsOn a side note, before I start my story -- I highly recommend writing to all of your old doctors as soon as possible and requesting your medical records. You have a federal right to your records under HIPAA (a federal medical privacy law), so you just need to make the request. You would be surprised how many of your old doctors might still have your records. And, it can be eye-opening to see what actually happened to you health-wise, as opposed to what you think happened (memories fade...). I obtained my medical records from college and from law school, as well as some of my childhood medical records. They were pretty interesting reading, at least to me. I started making links and (now) obvious associations that I would never have realized just a few years ago. And, probably the biggest thing I realized is: my health was starting to decline long before I realized it was. I never would have fully connected the dots without those records.

OK, so here's the beginning of my story:

I was a reasonably healthy, happy kid growing up. Health was not something I ever really thought about, because I could just take it for granted. (Ah, to have that luxury again!) It wasn't really until law school that things started wavering for me. (Although I did experience some very subtle, principally mental/emotional changes in college -- which I will elaborate on in a different post -- after getting 4 amalgam fillings placed Christmas break of my first year).

In law school, before I was really sick, I started having gastrointestinal (GI) problems, like stomach pain and discomfort (dyspepsia) without explanation, despite the fact that the usual tests (giardia, parasites) and drugs (antibiotics, motility drugs) didn't reveal anything remarkable. And, while it was uncomfortable, I just figured I was drinking too much coffee, and didn't really think about it. (I mention these GI problems as an example of the declining health I referenced earlier that I was unaware of). A couple of other strange things also happened in law school, which I didn't think much about at the time -- e.g., I got mononucleosis and strep simultaneously in my second year, without any obvious explanation.

Vaccine_photoAnd, then... BAM! Or, at least, that's how it looks in retrospect. In the spring of my final year at law school, in preparation for traveling to Mexico, I got my first Hep B vaccine, together with a Hep A and a Tetanus/Diphtheria vaccine injection. (I had previously been fully vaccinated as a child, and had had the necessary vaccines for entering college and law school, e.g., an MMR vaccine within the first six months of starting law school). Interestingly, when reviewing my law school medical records, one thing jumped out at me that I never thought of at the time. Exactly four days after this battery of shots, I returned to the student health center, where the doctor noted in my records that I had had "typical upper respiratory infection symptoms" for four days, and diagnosed me with a viral upper respiratory infection. Were the vaccines even considered as a suspect? Of course not, but the timing was dead on. (By the way, in case you don't know, prior to 1999, most vaccines contained thimerosal, a preservative that is 49.6 percent mercury. In 1999, the U.S. Public Health Service and the American Academy of Pediatrics requested that [i.e., didn't order] the vaccine manufacturers withdraw it from use, but it is estimated that mercury-containing vaccine stocks were still in use until roughly 2003).

Of course, if my only problem from the Hep B vaccine had been an upper respiratory infection, I would not be writing this story today. Rather, almost exactly one month later, I had the second booster of the three-vaccine Hep B sequence (the third is supposed to be given approximately one year after the second booster). This time, it was just the Hep B vaccine alone. I was a few months from graduation, and starting to think about the bar exam. Well, sometime shortly thereafter, some really strange things started to happen, which of course I in no way correlated to those vaccines. First, my eyesight really started fluctuating, particularly in my right eye. I'd be shopping for groceries, and suddenly realized I couldn't read the aisle signs. But it wasn't just a case of worsening eyesight (I've worn glasses since second grade), because my eyesight wasn't blurry all the time. Second, my hormones started fluctuating. In other words, for the first time in my life, my testosterone levels declined. Third, and most significantly, I developed a constant, 24-hour headache that came out of nowhere and became my constant companion. From my medical records, it appears that the headache started within 4-6 weeks of the second Hep B shot.

Man_on_phone_headache_1The headache was probably relatively mild to begin with, so I just assumed it was the "stress" of preparing for the bar exam (which, to be perfectly honest, was one of the most stress-free times I've had -- 3 hours studying a day, but *no* other responsibilities!) It was definitely worse in the morning on awakening. I was just hitting the over-the-counter analgesics (Tylenol, Advil) and kind of dealing with it. Then, I took the bar exam, and set off on a 2-month solo cruise around Europe. I'm not sure why, but it definitely was reduced while I was over there. (I'm not sure this can be explained away by a simple "reduction in stress" theory -- it's actually pretty stressful traveling by yourself!) Next, I came back and started life as an attorney in a corporate law firm. And, the 24-hour headache came roaring back. This time it was bad, and it meant business. So, I saw a doctor, who was perplexed because my blood pressure was also high, without any real explanation. And thus began a battery of tests: 24-hour heart monitoring, eye examinations, head C-T scan, and heavy-duty drugs like a beta-blocker that helps regulate heart rate. Nothing helped much, including the over-the-counter analgesics. But, from what I remember and what I can piece together from my records, it must have started fading about 2-3 months later. And I sort of forgot about it. But things were about to get worse....

About six months after the headache had first reappeared, and almost exactly one year after my initial Hep B vaccine, I got my third Hep B booster and my second Hep A booster, at the same time. No big deal (I thought), as I still was far from realizing what these vaccines were doing to me. Then, about one month after the vaccines, I was back at the doctor, this time for carpal tunnel syndrome ("bilateral wrist pain"). I thought it was probably just due to typing on a computer at work (even though I probably used a computer more in law school), but now in retrospect, I can see strong links to the vaccines. Yep, you read that right -- I think my carpal tunnel was related to getting the vaccine. Why? Well, in my personal experience, mercury settles in the forearms, and I have heard others say that as well. And, my carpal tunnel is mostly gone now since getting the mercury out.

But, the beginning of the change in my life as I knew it happened 4-6 weeks after that third vaccine. (Note the 4-6 week correlation between these out-of-the-blue problems and the vaccines). My stomach "blew up" on me. That is, it started KILLING me for no good reason. I mean, it was like someone had punched me in the stomach with all of their might. Again, I won't deny that I was under stress and that surely it added to the problem. But, humans were designed to be fairly resilient to stress, luckily -- it's amazing what the body can withstand -- so it just makes me cringe a little bit when doctors say "stress" is the "cause" of your problems. It is more likely to be an additive or partially causative factor, but not *the* cause. Anyway, I can't even describe how bad my stomach felt -- I could barely eat, couldn't sleep, couldn't do anything but feel miserable. And I was right in the middle of preparing for a trial, so it was the exact wrong time for things to fall apart.

Doc_checking_stomach_3Thus began an incredibly frustrating odyssey. I mean I had test after test after test: e.g., three 24-hour pH tests (where they stick a tube down your throat, through your nose, and attach it to a monitor that you wear for 24 hours), abdominal ultrasound, three endoscopies (each under anaesthetic in a hospital), esophageal biopsies, barium swallow, H. Pylori test, giardia/parasite tests, gastric emptying study, and a diagnostic course of every stomach drug out there (e.g., Zantac, Pepcid, Prilosec, Propulsid, Carafate, Librax, etc.). I was getting no relief and was miserable. And the doctors were just as frustrated as I was. They kept telling me I was in that "gray zone" where I didn't really fit any of the classic GI problems. They couldn't understand why I didn't get any relief from the drugs. I was desperate -- I learned quickly that when your stomach hurts and you can't eat normally, you lose a substantial part of your quality of life. I realized I could not continue in my job (or my life) like this. I decided to take a leave of absence from work and focus on trying to regain my mysteriously-disappearing health.

Angry_stomach_3My poor stomach. It hurt before eating (I got some relief from eating), and also about 1-2 hours after, consistent with gastroesophagial reflux disease (GERD). But, it also did strange things such as feel like I got "punched in the stomach" when awakening. "Punched in the stomach" is how I described the feeling to docs, for lack of a better description. This part of the problem was especially confusing to the doctors, as was my non-response to the traditional GERD drugs like Prilosec. Generally, the only surgical option available for GERD was a Nissan fundoplication, which is a fancy term for wrapping part of your stomach around your lower-esophageal sphincter (LES) to increase its pressure. (The LES sphincter tightens up after you swallow to prevent stomach contents from refluxing back up the esophagus, and thus low LES pressure is thought to cause GERD). However, that option seemed way too drastic and irreversible. Luckily, right around this time, a couple of new surgical treatments had been developed. One of these was the Stretta procedure, which applies radiofrequency energy to the LES via a catheter to cause tissue tightening and nerve ablation (i.e., removing painful nerves). I would end up fighting like crazy to get this procedure done -- I think I was one of the first 100 people to do it in the world -- mainly because I thought it was my only option since the fundoplication was too extreme, the drugs didn't work, and I was miserable. I underwent this procedure while on leave from work. It seemed to gradually help. However, little did I know that my health was not done declining, and that things were about to get a lot worse....

On a side note, around the time my stomach flipped out, a few other strange things started happening. I started losing hair and gaining weight. Now, previously, I had never, ever carried extra weight in my life (I have always been a runner and had a lean build). In retrospect, I understand that both of these issues had some tie to the total decline in my health. Part of this understanding stems from the fact that both issues have improved since detoxing. Now, the possible tie-in between weight/obesity and mercury/toxicity could be very important, given the current obesity epidemic (possible mercury-related causes: hypothalamus / leptin (an appetite-regulating hormone) connection and carbohydrate metabolism dysfunction, to be discussed in a future post).

Balding_cartoon_4And, while you might think that male (and female) hair-loss issues are purely vanity, did you know that a Harvard study showed that men with a balding spot on their crown have a 23-36% increased risk of a heart attack, depending upon the extent of the hair loss? (Lotufo PA, Chae CA, Ajani UA, Hennekens CH, Manson JE, "Male Pattern Baldness and Coronary Heart Disease: The Physicians' Health Study," Arch Intern Med. 2000 Jan 24;160(2):165-71). This phenomena was first recorded by Napoleon's field doctors who noticed that as they retreated from Russia during the cold, soldiers with hair loss were the first to succumb to the elements and die. Also, consider that men from countries that traditionally have little male-pattern baldness (MPB) like Japan, China, India, and Africa, see their males develop MPB once they settle in the western world.

Next up: How could things continue to get worse?

May 05, 2005 in Beginning of My Story | Permalink

How Could Things Continue to Get Worse?

Eye_chart_over_eye_1So, shortly before I was set to take my leave from work, to put everything down and figure out how to stop the damage, it got worse. This time it was my eyes (recall they had first started fluctuating after the Hep  B vaccine, when I was in law school). Suddenly, my eyesight (both eyes) was blurry. But it was the type of blurriness that seemed to have more to do with my contact lenses and tear film than it did with my actual eyesight, as it would fade in and out. So I saw an ophthalmologist, originally assuming the contacts themselves were defective. But, this turned out not to be the case -- the doctor checked the lenses individually and called the manufacturer for possible manufacturing defects (there were none). Also, my eyesight correction hadn't actually changed, either. But, she did find something else: after 16 years of wearing contacts without any problem, I had suddenly developed giant papillary conjunctivitis (GPC), a fancy way of saying my eyes had become allergic to my own contacts. So, I was out of my contacts. Which was particularly stressful given that I am extremely nearsighted -- in the top 1% of myopics (near-sighted people). In other words, you can imagine my glasses aren't exactly the thinnest ever... It would be over a year before I'd be able to wear my contacts again.

And then, within the next few weeks, it got worse. My left eye just started killing me, without explanation or cause (in medical jargon, this was "idiopathic" eye pain). And believe me, over the next six months or so, the doctors looked for explanations. I think I saw six different ophthalmologists in three different states, including a retinal specialist that I drove almost five hours to see! I had test after test, with nothing unusual enough to explain why my left eye hurt so darned much. I did multiple courses of powerful steroids that did absolutely no good.

Retina_with_blotchesAbout the same time my left eye flipped out, an even more ominous development occured. I developed huge fields of floaters in both eyes. For those of you lucky enough not to have them, floaters are debris in the clear jelly-like part of the eye (the vitreous) that are near to the retina. They look like strings, worms, dirt, or debris that "floats" in the visual field (i.e., when you turn your eye, they don't move one-to-one with your vision -- instead they move slowly, catching up to your visual point of reference and then settling there -- literally, floating). The scary part is that they generally don't go away once they appear. And I didn't get one or two annoying floaters. I got hundreds of them in both eyes. Suddenly it seemed like I was looking through *dirt*. You never know how much you take a clear field of vision for granted until it is suddenly, irreversibly gone. You quickly appreciate that your eyes (and brain) are merely tools to process your surrounding environment when there suddenly is a layer of crud between you and that environment. It's like you're suddenly living in a fishbowl, or at least one of those "snow globes" that you can shake and stir up the fake snow.

Eyeglasses_1So, suddenly, I was wearing glasses full time (last point I had done this: 7th grade), my left eye was killing me, my eyes generally hurt/were uncomfortable (from the GPC allergy reaction), and my visual field was full of dirt. Oh yeah, and my stomach pretty much felt full-time like I got punched there. So, perhaps it's not too surprising that I started to feel pretty depressed, too. But, in retrospect, I see that the depression was yet one more symptom of my whole declining health, probably a distinct neurotransmitter-mediated symptom, not a result of other things going wrong -- although, I'm sure those things were additive to the depression.

Operating_room_lightsWell, nonetheless, I focused on getting that Stretta procedure I previously described done. I guess I figured somehow my eyes would just get better, and the only way out of the stomach nightmare was through this procedure. And, I did have it done, although I had to fly halfway across the country to do so. Nothing like voluntarily having your esophagus burned (through controlled energy, of course) and trying to eat soup the same day. Ouch. And, I was pretty sore for a little while. To jump ahead a little bit in the story, I think the Stretta definitely helped, but it didn't fix the problem. Over about the next six months, it became easier to eat meals. I gained some amount of confidence in eating that I had previously lost, and that made my life significantly better in one key area -- enjoyment of food (try to imagine life not enjoying food). But I continued to have pain in my stomach, particularly the punched-in-the-stomach feeling. However, the reflux had definitely stopped, according to two subsequent 24-hour pH tests and a third endoscopy I had. So, it was a mixed blessing -- the reflux was better and eating was easier, but I was still in substantial pain, showing that GERD/reflux was not the whole explanation for my GI problems.

Interestingly, later, that punched-in-the-stomach pain finally did go away and my stomach became dramatically better, even before starting detox. Guess what fixed the problem? Based on my records, the pain went away within 1-2 days after starting a sleeping drug (I also had horrible sleeping problems). Yes, a sleeping drug stopped my horrible morning bouts of pain. One of my theories about the sleeping / stomach-pain link is that this sleeping drug -- a hypnotic -- stopped my bad bruxism (teeth-grinding), which was sending mercury vapor and particles into my stomach overnight, causing dysbiosis (i.e., killing of good bacteria) and other havoc down there. I thought of this possibility when a dentist told me he uses this sleeping drug to treat bruxism. This scenario is also consistent with the fact that I no longer had this pain after my amalgams were removed and yet I was not using the sleeping drug at the time -- perhaps because there were no amalgams left to grind on. Who knows?

Anyway, back to my story. At some point during my six-month leave, while I was still recovering from the Stretta procedure, I started a course of tetracycline-family antibiotics, to try to get the meibomian (oil-producing) glands on my eyelid to start working again, hopefully to ease the allergic reaction my eyes were experiencing. On retrospective analysis of my records, I see that my next, and biggest, problem started just about two weeks after starting these antibiotics. This alone is strangely coincidental, but when the problem doubled in size almost a year later, within two weeks of starting another course of tetracycline-family antibiotics, I once again realized that I had likely found a causative factor. The new problem I developed was substantial back, groin, and leg pain. The link to mercury: in a study of rats given high doses of oral antibiotics, the half-life for excretion of mercury (i.e., the amount of time required for one-half of the mercury to be excreted from a rat) increased from 10 days to greater than 100 days. (Rowland IR, Robinson RD, Doherty RA, "Effects of Diet on Mercury Metabolism and Excretion in Mice Given Methylmercury: Role of Gut Flora," Arch Environ Health, 1984:39(6); 401-408). In other words, antibiotics reduce the body's ability to excrete mercury, and tetracyclines in particular have been to shown to increase mercury toxicity (e.g., Prof. Boyd Haley of the University of Kentucky has found tetracycline increases thimerosal's toxicity to neurons).

Basically, I believe that my body had been pushed beyond its detoxing limits by the Hep B vaccine, as demonstrated by my flipped-out eyes and stomach, and was no longer effectively able to move mercury out or neutralize its toxicity. The mercury thus was slowly accumulating. I accelerated that accumulation by taking the tetracycline. And where did the mercury go? To some of the lower areas of my bigger body cavities -- low-back and groin. Why did the mercury move to these particular areas? Well, consider why mercury is called a "heavy" metal -- heavy metals are, by definition, at least five times heavier than water. Mercury is about 14 times heavier than water. Thus, it sinks readily, and settles at the bottom of body cavities. In fact, the prostate is highly susceptible to mercury accumulation, in part for this reason (another topic to be discussed in the future...).

Assuming mercury does settle in the groin and low-back, consider the implications. How many people are suffering from low-back pain? How about groin pain, fertility problems, or hormonal issues? By the way, for the medically-oriented, some of the current theories on why antibiotics might affect mercury excretion rates include: (1) antibiotics kill "good" bacteria in the gut, which is a problem because those bacteria de-methylate methylmercury (a good thing), and also help keep yeast (e.g., Candida albicans) in check, which is important because yeast methylate mercury (a bad thing); and (2) tetracyclines are broken down by the glutathione conjugation pathway in the liver, which also detoxifies mercury, so if already-reduced levels of glutathione are required to metabolize the antibiotic, less is available to handle the mercury. (Interestingly, Tylenol is also broken down through this same glutathione conjugation pathway).

Treadmill_1Anyway, this new development started about a month before I was preparing to return to work. I was running on the treadmill and noticed that my right leg was being strangely rotated out to the side by my hip muscles. Then, my groin started hurting, and I had pain shooting down my right leg. This was odd, as I'd never had groin pain before in my life, despite running on treadmills often. (You can see why, at various points, I totally lost confidence in my body, assuming that anything not yet broken was going to start falling apart at any moment...). Well, I saw a urologist, who initially diagnosed epididymitis, an inflammation in the groin area. I tried antibiotics and an analgesic (which was, I think, ... Vioxx. Great). I also had an ultrasound of the groin and a C-T scan of the groin/low-back region. Because there were no obvious problems in the groin, and the drugs hadn't helped, the urologist thought it might be nerve pain originating in the spine from spinal stenosis, or narrowing of the spinal canal. So he sent me to an orthopedic doctor. The orthopedic doc believed it might be a congenital defect (i.e., since birth), wherein the canal through some of the vertebrae of my spine might be too narrow, causing impingement or other mechanical pressure on the nerves.

At about this time, my six-month leave of absence from work was ending, and it was time to resume my job. I simply could not believe it -- I was actually worse off then when I first took the leave to try to improve my health. As if painful eyes, distorted vision, no contact lenses, and stomach pain weren't enough, now I had shooting pain down my right leg and groin pain. Oh, that was a fun way to start again, believe me.

Next up: You don't know pain until you've had back pain.

May 04, 2005 in How Could Things Get Worse | Permalink

You Don't Know Pain Until You've Had Back Pain

Back_pain_2So, at this point in the story, I have major GI and eye problems, and now back/groin/leg pain. I just started working again. Lucikly, I found an absolutely great doctor near where I work -- a physiatrist, which is like an orthopedic doctor, but with more emphasis on physical therapy and conservative treatements over surgery. So I started a very long process of trying various diagnostic and therapeutic options with him. I think from the start he was pretty sure this pain originated in my back (he ruled out spinal stenosis on the very first visit, though). However, an MRI of the lumbar spine didn't reveal any significant structural explanation. So, once again, I was in the gray zone, and we began trying one thing after another.

 

As an overview, here were some of the things we tried for my back/groin/leg pain before all was said and done: 4 lumbar epidurals (each of which involved a trip to a surgery center), 2 thoracic epidurals (two trips to the surgery center), 3 sacroiliac (SI) joint (a joint between your tailbone and pelvis) "blocks" (each a separate trip to the surgery center), acupuncture, chiropractic treatment, 74 physical therapy sessions (you can Mri_cartoon_9imagine how much time and effort it takes to drive to and undergo 74 PT sessions!), and trigger-point injections, among other things. Here are the diagnostic tests I underwent: a groin/abdomen C-T scan, a lumbar C-T scan, 2 lumbar MRIs, a thoracic MRI, and a lumbar discogram (fluid is injected directly into the discs to pressurize them and determine if the pain can be replicated). And here is the number of diagnoses I fit cleanly: zero.

Ultimately, I was diagnosed with internal disc damage (IDD). In other words, the best possible explanation was that I had an annular tear (the "annulus" of each disc is a strong ring of fibers that surround the soft, jelly-like center [nucleus] of the disc), probably in two discs (L5-S1) and (L5-L4), which was radiating pain to my groin and down my right leg. As I mentioned, the doctor did a discogram to try to nail down the disc-damage theory for my pain. This was one of the most painful experiences of my life. This procedure was done at the hospital, and they gave me anaesthetic and sedating drugs, but not too much because they needed me to feel the pain. Then, using X-ray guidance, they put a needle into each of three discs, injecting fluid (dye) into the discs, which are then later imaged on a C-T scan. The idea is to simulate the pressure that one creates on the discs by bending, moving around, sitting, etc. They also want to see if they can recreate the radicular pain (radiating leg pain). For my lowest disc, even though I was heavily sedated, I remember an explosion of pain in my low back (not my leg) that even the best drugs couldn't filter out. Owwww! The net result of the discogram was mixed -- they were able to generate definite back pain from pressurizing the lowest two discs (the lowest, L5-S1, was the most painful disc), but no leg or groin pain could be recreated.

Midback_musculature_2You'd think low-back (lumbar) pain would be enough pain for most people, but unfortunately not for me. I started developing worse and worse thoracic back pain. The thoracic vertebrae are between the cervical (neck) and lumbar (low-back) vertebrae -- i.e., the mid-back vertebrae. It's amazing how different thoracic pain and lumbar pain can feel. Sometimes the thoracic pain was worse because it was in the middle of my torso and I could feel it more acutely. However, for the most part, lumbar pain is far and away the worst type of pain of all types of pain one can experience. Anyway, for a long while, I tried my best to ignore the thoracic pain because I didn't want to bother my doctor with separate pain, as I figured he would become exasperated... But, as I said, this doctor was great and was very open to the concept of separate thoracic pain, and was willing to treat it separately. He thought it might even be related to my lumbar pain -- sort of a mechanical malfunction of the thoracic vertebrae (i.e., not disc pain) due to my lumbar problems throwing everything else out of whack. The thoracic vertebrae would just "splint up" -- become stuck and not rotate, which is bad because your ribs are attached to them, and it is very painful when a rib becomes immobilized.

Also, there was another strange thing -- the thoracic pain would often increase or decrease while eating. Perhaps this was, in part, because the affected thoracic vertebrae were centered around my LES (the connection of my esophagus to my stomach, where I had previously had the Stretta procedure applied), which was radiating pain outward from the reflux/GERD. The physiatrist couldn't explain this. Neither could the gastroenterologist I was seeing at the time, who happened to be one of the world's leading GI specialists. More of that frustrating "gray zone."

Mri_spineAfter the discogram test, my doctor felt more confident that disc damage was the cause of my pain, even though pressuring the discs did not cause groin and leg pain, which were really my principal symptoms at the time (although it did cause low-back pain). Still, this showed some correlation -- people with healthy spines should not have pain with a discogram. So, he deemed that the cause of the pain was ill-defined internal disc damage -- those annular tears I mentioned earlier. I say "ill-defined" because there was nothing clinically significant enough on any of my imaging studies that would explain the levels of pain I was experiencing. But, I was surprised to learn that diagnostic imaging for back pain is not always that helpful for anyone. For example, consider that in several studies, researchers have found that a majority of pain-free people who have spinal MRI's -- up to two-thirds in some studies -- have spinal abnormalities, including bulging or protruding discs, herniated discs, and degenerated discs. Thus, generally, there is probably little correlation between possible slight wear-and-tear damage (like in my discs) and pain. So, all we had to go on was that "positive" result in the discogram, and not much else. (The therapeutic epidurals -- shots of cortisone and anaesthetic into my lumbar region -- were only modestly helpful, if at all).

So what do you do if you have back pain, likely tied to discogenic pain, but not strongly correlated? Well, in the absence of a disc bulge or extrusion that can be surgically removed, the typical treatment for severe disc-caused back pain is a "fusion" surgery, which is as draconian as it sounds. In a fusion, vertebrae of your spine are fused together, much like they used to fuse or freeze a malfunctioning hip socket to try to relieve pain, as crazy as that sounds today in a world with artificial hip joints. And, for a case of less-than-clear internal disc damage like mine, my doctor said that no way would he recommend a fusion -- they don't even have a very good success rate for people with failing discs. (Plus, the immobilization of one vertebrae/disc level puts additional stress on the level above it, and often requires another fusion down the road). So, prior to 1997, I would have been stuck. But, it so happens that in that year, a new surgical procedure was introduced that aimed to address exactly my problem -- internal disc damage. The procedure is called an Intradiscal Electrothermal Annuloplasty (an "IDET"). Basically, the doctor, using X-ray guidance, inserts a hollow needle into the painful disc, then inserts a thin heating wire through the needle into the disc, and coils the wire around the outer edge of the nucleus. The wire is then slowly heated to a temperature of around 194 degrees Farenheit for about 15 minutes. The purpose is pretty much the same as the Stretta procedure -- to heat the disc wall and cause it to contract (in this case, hopefully to close up tears), and to ablate (remove) painful nerve endings in the disc.

Well, post-discogram, the IDET seemed like the obvious choice for me, but my doctor stilll wanted to continue to try to treat me conservatively. We tried a couple of those S-I joint blocks I mentioned, injecting cortisone into the S-I joints between the pelvis and the tailbone. (Before the disc-theory of low-back pain originated in 1932, diagnoses of S-I joint syndrome were commonly made, and have gained renewed interest starting in the 1980's). The first S-I joint block provided some brief moments of jaw-dropping relief in my right leg pain (I think because my pelvis was misaligned pretty badly), but the second did nothing. But, around this time, something else far more significant happened -- my low back "blew up" on me. I have no other way to describe what happened. It was like I reverted back to that excruciating pain from the discogram, when the doctor shot fluid into my disc. But, instead of lasting minutes, this pain simply wasn't going away. I could not believe that anything could be this painful. The thing about the lower back is that it forms the base/foundation for all of the leverage and movements of the body. Which is fine, if it doesn't hurt -- you will not have to think about this. But, you will never realize how much you rely on that support and stability until it starts failing or hurting. It is debilitating in ways you can't even imagine until you experience it.

(Side note: the start of this dramatic rise in pain occured two weeks after beginning a course of tetracycline-family drugs, as previously discussed in this section).

Painkillers_3The pain was so explosive that, without help, I would have been curled up in the fetal position, unable to function. But, thankfully, I had heavy-duty (narcotic) painkillers available, which I can honestly say allowed me to continue to function and carry on, although still with some pain. When people think about narcotics, they think about addiction and the "high" that narcotics can provide. But, those issues probably apply more to someone who is using them to achieve those ends. For someone like myself, battling debilitating pain, they really don't provide much of a euphoria. In fact, I was lucky if they just brought me up to somewhere near normal, so I could function. And, they could only keep me at "normal" temporarily, as they wore off after 4-6 hours. Thus, it wasn't consistent pain control, but more like a short-lived plateau of tolerability, followed by an increase in pain as each pill wore off, and then a slow decrease of that pain as the next one kicked in. Without the pain relief, I wouldn't have had a snowball's chance in hell of sleeping through a single night.

At this point, I was pretty desperate for the IDET. It was kind of like when I wanted the Stretta -- I was in a lot of pain, the conventional treatments didn't work, the existing surgical option was too drastic, and I didn't have a lot of other options. Thus, after a lot of negotiations back and forth with the insurance company (which originally denied coverage for the IDET because it was "experimental", despite 40,000 of the procedures having been performed), I finally got the procedure approved. At this point, the doctor was on board to do this, as we had exhausted every conservative treatment option available.

Surgery_with_docs_1The IDET was definitely the most serious surgery I have ever had -- it involved a hospital surgery suite, anaesthesiologist, X-ray technician, and 2-3 doctors/assistants. I think it lasted about an hour, but thankfully, unlike the discogram, this time they could pretty much knock me out. I spent the next two weeks hooked up to a machine that circulated icewater around my lower back, the next two months mostly lying on my back, and the next six months not sitting longer than about 30 minutes at a time. Also, for the next three months, I wore a back brace anytime I was on my feet. I also took a month off of work, and then ended up working part-time for the remaining time I stayed at my job (a little over a year post-IDET).

Recovery was incredibly, frustratingly slow. I don't think I met expectations for post-IDET recovery. I had many ups and downs and, at one point, had to have an emergency lumbar MRI to make sure that one of my IDET-treated discs didn't tear or extrude material, as I was having a huge, inexplicable flare-up in pain. Luckily, everything looked ok -- it was just the story of my illness -- unknown problems putting me squarely in the gray zone. Another example of a strange twist: during that pain flare-up I mentioned, I was given prednisone, a powerful steroid that can calm down almost any amount of inflammation. Yet, with me, it just sent me into a tailspin and made me feel twice as bad. And, here's another strange reaction: during my tumultuous IDET recovery, the doctor tried me on Paxil, not because I was depressed, but because he was trying to calm down hypersensitivity to the pain in my brain. But, the Paxil made my pain ten times worse and made me feel very, very chemically sick. To say I was a frustrating case to myself and my doctors is quite the understatement!

Slowly, my back got somewhat better. (Although, it was a little hard to tell what was improvement from the increased post-surgery pain, and what was true improvement). But, I was not getting better enough for the doctor to call my IDET a full success. In fact, the very quality and distribution of my pain was changing. It went from incredibly acute pain in my low-back, groin, and leg, to soft-tissue pain in my legs and buttocks. It went from pain primarily radiating down one leg and centered in my low back, to a more diffuse and amorphous pain. Still, it was definitely greater on my right side. One particular spot that seemed much worse after the IDET was my right anterior superior iliac spine ("ASIS") (although, it might have been there before, and I just didn't notice it with all of the other pain I was having). The ASIS part of your pelvis is the top bony knob in the front that you can feel -- you can't miss it. That area is the attachment point for a number of muscles and ligaments that come from your leg and hip. To this day, I struggle somewhat with this particular pain spot, but it was particularly bad at the time.

Eventually the doctor was convinced that the "fire" of my problem (discogenic pain) was reduced, and that the equally bothersome muscle pain I was experiencing was simply residual "smoke" from the disc pain and IDET. I couldn't be sure as I didn't feel much better, just... different. So, one day the doctor tried a soft-tissue injection, which is a locally-administered shot that usually combines a short-acting pain-reliever (e.g., lidocaine) and a longer-acting anti-inflammatory (e.g., corticosteroids). He injected it into a spot of incredible tenderness in my hip region that I would come to know as a "trigger point", or a small contraction knot in the muscles that could shoot out pain if pressure was applied to it. He was very excited when the injection provided some quick, mild pain relief in the area where it was administered, as well as radiating warmth and reduced pain into my leg and groin. Because of this result, I heard a new word for the first time from my doctor -- "fibromyalgia." But, this was something I would learn a LOT about going forward as I was ultimately diagnosed with this syndrome by my doctor's rheumatologist partner. And thus began yet another new chapter in my health.

Next up: Welcome to the Fibromyalgia Club: You're the 10th million member!

May 03, 2005 in You Don't Know Pain | Permalink

Welcome to the Fibromyalgia Club: You're the 10th Million Member!

Muscles_of_trunk_2OK, so now I've been diagnosed with fibromyalgia. Although my physiatrist was excited to finally have a diagnosis and, I guess, an explanation for my strange reactions and symptoms, the more I read about this syndrome the less I liked it. Basically, fibromyalgia is more of a "syndrome" than a "disease", in that it constitutes a bunch of problems that are lumped together under the term "fibromyalgia." In a nutshell, fibromyalgia is a chronic pain condition that causes widespread musculoskeletal aches, pain, and stiffness; soft-tissue tenderness; general fatigue; and sleep disturbances. The muscle pain, which is really the hallmark of the disease, is widespread in that it is found in muscles around the body, and most commonly as "trigger" or "tender" points -- those small contraction knots I mentioned earlier. And the fatigue is sometimes considered a part of fibromyalgia, and sometimes the key symptom of fibromyalgia's kissing cousin -- chronic fatigue syndrome.

Of course, no one knows exactly what causes fibromyalgia. It was previously a diagnosis of exclusion, meaning that when the doctor had ruled out more serious diseases like cancer or arthritis or what not, and the patient was left with idiopathic (unknown cause) widespread muscle pain, the diagnosis would be fibromyalgia. Then, in 1990, the American College of Rheumatology established the following two diagnostic criterion:

1) widespread pain in all four quadrants of the body for a minimum of three months duration; and
2) tenderness or pain in 11 of 18 tender points (shown in the diagram below) when
pressure is applied.

Fibro_trpsv3_1Note that the diagram is a woman. This is not surprising, considering women with fibromyalgia far outnumber men. But, consider that women also comprise the significant majority of all autoimmune diseases (e.g., lupus, rheumatoid arthritis, multiple sclerosis, scleroderma, Sjogren's syndrome, etc.), and you quickly realize something specific is going on. Clearly there is a gender-based explanation for autoimmune disease, which I do have some thoughts on based on experiences of some of my female friends during chelation (I'll elaborate in a future post). Current research is looking into hormonal differences, like the fact that testosterone seems to "damp down" the immune system and reduce inflammatory activity. Because women have lower levels of testosterone than men, and therefore less of this protective effect, they might be more prone to suffer autoimmune diseases for this reason. In any event, clearly men can have these autoimmune-type problems as well, as there are plenty of men with multiple sclerosis, fibromyalgia, etc.

Sleep dysfunction is thought to be central to fibromyalgia. Basically, a person with fibromyalgia has "disregulated" sleep, meaning they do not obtain much Stage IV sleep (a deep sleep), during which the brain helps repair the daily wear and tear of the body. During sleep, persons with fibromyalgia are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep. From personal experience, sleep is shallow, interrupted, and not refreshing. You wake up in the morning and feel like you were run over by a truck. A big truck. It's hard to imagine going to bed and feeling worse in the morning than you did the night before, but for fibromyalgia sufferers, this is exactly what happens. In fact, I always felt very stiff and painful in the mornings -- my muscle pain tends to be the highest right when I wake up. Is it any surprise than that sleep isn't peaceful and restful?

A couple of years ago I read an article in Newsweek that basically traced the history of fibromyalgia (May 19, 2003). For a long time, most physicians did not believe that fibromyalgia was a true illness, and thought that the symptoms were mainly psychological. However, the physiological reality of fibromyalgia has since been confirmed in MRI scans of the brain -- there is clear, observable dysfunction of the pain centers in the brain. (Actually, I've had those centers scanned in my own brain in real time, and in a future post, will describe my experiences with this new pain-management research that was recently featured in Time magazine). In other words, fibromyalgia is a physiological, biochemical disease. And, current estimates put the number of Americans suffering from fibromyalgia at about ten million. Ten million people with a disease that was only given diagnostic criterion in 1990? What is going on here?

How would I describe fibromyalgia? Well, I think the term "achiness" is a good one. Your muscles just ache and hurt in this dull, diffuse way that drives you out of your mind. I quickly discovered that the pain had local "anchors" -- points from which the pain emanated outward -- the trigger points. Then, I found two very useful books on trigger points: (1) The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, by Clair Davies; and a related book, (2) Fibromyalgia & Chronic Myofascial Pain: A Survival Guide, by Devin Starlanyl and Mary Ellen Copeland. These books have diagrams that show trigger points in various muscles of the body, and the associated radiating pain patterns they cause. You see, it turns out that muscles form trigger points in roughly the same areas in different people, as originally discovered by Drs. Travell and Simons, first published in 1983 in the seminal work, Myofascial Pain and Dysfunction: The Trigger Point Manual. It is amazing how you can use these diagrams, together with your pain pattern, as a map that allows you to pinpoint the originating point (trigger point) of that pain. And, uncannily, the diagrams are almost always accurate. You know when you've found the right location, because you can: (1) push on it and radiate pain as mapped out by the diagram, and (2) make the radiating pain and the trigger point better by hard-pressure massage right on the point itself.

On an interesting historical sidenote, Dr. Janet Travell (who wrote the seminal work, above) was the White House Physician during the Kennedy and Johnson administrations. President Kennedy awarded her that position in gratitude for her treatment of his own debilitating myofascial pain and certain other ailments that threatened to prematurely end his political career around 1955, before he was President. Dr. Travell administered trigger-point injections to Kennedy.

I also discovered a really helpful tool called the Theracane, which is a plastic cane-shaped tool with knob-like ends that allow a person to reach trigger points on their body and massage them. Because of its hooked end, a person can reach trigger points on their own back and apply leverage to massage them. It is amazing how much this type of massage/treatment provides relief, where nothing else can. I think that Theracane saved my sanity many times when the mind-numbing pain arrived at times when the painkillers were wearing or had worn off.

Nervous_system_4One interesting theory of fibromyalgia is that it involves dysfunction of the hypothalamus, a small gland in the brain that controls many functions in the body, e.g., sleeping, eating, drinking, sexual urges, response to stress, organ functioning, and emotional response. Through the nearby "master control" pituitary gland, the hypothalamus controls the other endocrine glands in the body. It also regulates the function of the autonomic nervous system, which controls the involuntary functions of the body, like blood pressure, heartrate, breathing, digestion, sweating, etc. (i.e., the "automatic" functions of the body). The autonomic nervous system is made up of two major components -- the sympathetic and parasympathetic nervous systems. The sympathetic nervous system operates the "fight-or-flight" function in response to stressful stimuli, by causing an increase in heartrate, breathing, blood pressure, rate of blood flow to muscles of the arms and legs, and sugar levels. The parasympathetic nervous system acts as the counterbalance to the sympathetic system, a "calming effect" when the stressful stimuli has ended, slowing down the heartrate and breathing rate, reducing blood pressure, and promoting digestion and elimination. 

So, the gist of the hypothalamus/fibromyalgia theory is that our lives these days are filled with a thousand little stresses, instead of the occasional big stress of our ancestors (e.g., a saber-tooth tiger). Examples of little stresses include fighting traffic, stressful work environment, taking care of children, spousal interactions, threats of terrorism, etc. -- and consequently, we spend more time in the sympathetic mode than is probably good for us. In persons with fibromyalgia, for some reason the body seems to becomes "stuck" in the sympathetic / fight-or-flight mode, causing numerous problems like adrenal gland exhaustion, impaired and weaker responses to psychological and physical stresses (e.g., infection or exercise), sleep problems, digestion problems, etc. The dysfunction of the hypothalamus can then be self-perpetuating, because the body reacts to physiological stress from inside the body (e.g., pain, infections, etc.) the same as external physical or emotional stresses, causing further breakdown and damage, leading to even further stress, and so on.

Brain_cartoon_1The part about the hypothalamus theory of fibromyalgia that I find particularly ironic is that it is well-documented in the scientific literature, from autopsies and other studies, that mercury is known to accumulate in the hypothalamus and pituitary gland specifically. For example, the pituitary glands of a group of dentists in Sweden had mercury levels almost 800 times greater than controls. (M. Nylander et al., "Mercury Accumulation in Tissues From Dental Staff and Controls," Swedish Dental Journal, 13:235-243, 1989; M. Nylander, "Mercury in Pituitary Glands of Dentists," Lancet, 442, Feb. 26, 1986). The affinity of mercury for the hypothalamus and pituitary glands is almost never mentioned in the literature on fibromyalgia.

Other possible causes/effects of fibromyalgia include low serotonin levels, higher levels of substance P (a neurotransmitter associated with increased pain perception), abnormalities of cytokine function (a class of immune system hormones), decreased blood flow to the thalamus region of the brain (a relay center for sensory impulses), and low growth hormone. Fibromyalgia often seems to be triggered in susceptible people by an acute stress, like a physical injury such as whiplash trauma, a viral infection (e.g., Epstein-Barr virus), surgery, or emotional trauma. Remember, my fibromyalgia followed low-back surgery.

Besides the widespread muscle pain, there are a myriad of other conditions that often occur with fibromyalgia. (I've denoted symptoms I've experienced with exclamation (!) marks). These include the aforementioned chronic fatigue (!), irritable bowel syndrome (IBS), esophageal reflux (!), irritable bladder, interstitial cystitis (IC), osteoarthritis, allergies (!), headaches (!) and migraines, restless legs syndrome (RLS) (!), multiple chemical sensitivity (MCS), impaired memory and concentration ("brain fog" or "fibrofog") (!), skin sensitivities and rashes (!), dry eyes and mouth (e.g., Sjogren's syndrome) (!), anxiety (!), depression (!), ringing in the ears (!), dizziness (!), vision problems (!), Raynaud's syndrome, neurally-mediated hypotension (being dizzy when you stand up after lying down) (!), reduced sex drive (!), hypothyroidism (!), temporomandibular joint disorders (TMJ) (!), yeast overgrowth problems (!), neurological symptoms, and impaired coordination. So, you can see that these conditions really do occur in conjunction with each other, and with fibromyalgia. All of these conditions are pretty diverse and affect a variety of systems in the body. What in the world could even theoretically affect so many different parts and functions of the body? Not too many things, really, but mercury, as the most toxic substance on earth that isn't radioactive, has been scientifically linked to every one of these symptoms.

Most of the fibromyalgia literature says that fibromyalgia is not an autoimmune disease. Still, the literature notes the lopsided female-to-male ratio that is so characteristic of autoimmune diseases; notes the similarity of key symptoms between fibromyalgia and autoimmune diseases like fatigue and pain; and notes the fact that fibromyalgia, lupus, and multiple sclerosis are commonly mistaken for each other. In my experience, I believe that fibromyalgia is an autoimmune disease. Why? Because, after years of closely monitoring my fibromyalgia, I can say that the pain usually flared up when my immune system was challenged, such as when eating certain foods (food allergies) or taking pharmaceuticals (allergies). In fact, I often would have the least amount of pain when I didn't eat or take anything by mouth. It seems like whenever my immune system was tweaked, it more or less amplified the pain in my muscles, perhaps by mounting an immune attack on these areas, or perhaps through another type of immune hypersensitivity reaction. While fibromyalgia doesn't seem to be as degenerative as other types of autoimmune diseases, that may be a result of a weaker immune response, or of the resiliency of the type of tissue being attacked (muscle tissue, as opposed to, e.g., attacks on the more vulnerable nervous system in multiple sclerosis).

I know I've spent a while in this posting explaining what fibromyalgia is. In part, that's because while many people have heard of it, not many know exactly what fibromyalgia is. And, to understand why I had the symptoms I did, you need to understand a little bit about the nature of the illness. When I told a few select people that I had fibromyalgia, I was caught off-guard when they acted as if I'd been struck down by a devastating, crippling, debilitating disease. I never felt like that, because I'd had the symptoms long before the diagnosis, and I knew there had to be correlations between the symptoms. Whatever the doctors wanted to call it, I didn't care. And, probably the biggest reason why it didn't overwhelm me is because I never, ever bought into it as a mystery disease of unknown cause that was striking down all of these people in the prime of their lives. I just knew there had to be an explanation. Although, that is not to say that there weren't a lot of moments of quiet desperation. Having that level of pain, and that many simultaneous things going wrong in your body, will make anyone question everything they believe, and wonder if things will ever get better.

Skeleton_with_painThe cover story of the Feb. 28, 2005 issue of Time magazine was on chronic pain. Even though I was at times in excruciating pain with my low-back pain and fibromyalgia, and even though I used narcotic pain killers daily just to get by, I felt incredibly sorry for the people they profiled in that story. Why? Because most of those people had similar levels of pain, and were told to accept that there was no cure, and that they would have to live with the pain for the rest of their lives. And maybe for many of them that really is the case. I have immeasurable respect for people who have the ability to accept those levels of pain as permanent parts of their life. It's honestly hard to imagine if I could have done that or not. But luckily, I never did have to face such a horrendous reality, because just like my gut told me, there was an explanation and treatment for my problems. I noted that many of the people in the Time story had fibromyalgia and other autoimmune diseases.

Next up: A smorgasbord of other problems.

May 02, 2005 in Fibromyalgia Club | Permalink

A Smorgasbord of Other Problems

Eye_with_pain_2A few months after I started having back problems, and after returning to work from my leave of absence, I started suffering tremendous nasal/eye pain. Now recall that I had already been forced out of contacts due to my eyes becoming allergic to them (giant papillary conjuctivitis, or GPC), and my eyes were extremely dry, so there were already significant problems in these areas. (In fact, in addition to using steroid drops to try to calm down the inflammation in my eyelids, I had "punctum plugs" [small silicone plugs] inserted into the drainholes in the corners of my eyes to try to retain moisture). But this was something different, a distinct and severe pain that radiated from my nasal passages outward to my eye sockets (in medical parlance, the "orbits") and along my cheekbones. The pain made my orbits, as opposed to the eyeballs themselves, feel "achy"; caused an exquisitely painful sensation to radiate outward from the corners of my eyes and bridge of my nose; and made my nasal passages swollen and painful (not the typical runny-nose, painless, allergic-type feeling).

Drawing_nasal_passageI'm sure this pain sensation was not helped by the allergic response to my contacts (GPC), but it was not caused by this -- the GPC preceded this nasal/eye pain by almost nine months. So, over the next 2.5 years, I looked far and wide for answers to, and relief from, this pain. During this time, I saw three ear-nose-throat (ENT) specialists; had a C-T scan of the skull; a MRI of the brain and eye orbits; and tried every possible type of drug treatment including: prednisone (oral steroid), lidocaine (nasal-spray anaesthetic), Imitrex (oral migraine medication), Nasonex (nasal-spray steroid), Nasacort (nasal-spray steroid), Astelin (nasal-spray anti-histamine), Allegra (oral anti-histamine), Claritin (oral anti-histamine), Clarinex (oral anti-histamine), Flonase (nasal-spray steroid), and Atrovent (nasal spray that blocks acetylcholine to help runny nose symptoms). Nothing helped.

The ENT that I ultimately sought treatment from (and who had been practicing 35 years) was very puzzled by my symptoms. He could see "dusky" diffuse inflammation at the top portion of my larynx (voice box), and where my nasal passages drained into my pharynx (back of my throat), but he couldn't find an explanation. None of the scans provided any clinically-significant clues, although the MRI did show bilateral thickening at the back of both maxillary sinuses -- but this was more of a curiousity, and not the cause of my pain.

Tmj_pain_xray_1At one point, my ENT doctor referred me to a dentist for a TMJ evaluation. The temporomadibular joint, or TMJ, is the joint that hinges your lower jawbone to your skull, allowing your jaw to open and close. It is located just forward of your ears. TMJ problems are one of the most common, and most frustrating, orofacial conditions to treat. TMJ pain can radiate outward as facial pain, headaches, and neck pain, and can cause pain when talking, chewing, yawning, etc. Because a TMJ joint is the most complex joint in the body (it has both a rotating and a sliding motion, with a small disc that cushions these movements), it can be one of the most difficult to treat. Also, because stress can be a precipitating or aggravating factor for TMJ problems, many dentists feel there are too many complicating psychological factors to be able to effectively treat TMJ disease.

Anyway, in my case, the dentist did an examination, and determined that I did indeed have TMJ problems, particularly in my right TMJ joint, where he felt inflammation in the joint. He was surprised because I was currently taking Celebrex (an anti-inflammatory), which should have suppressed the inflammation. He recommended applying ice to the joint and to the muscle extending along the jawbone. He also made me an occlusal guard (i.e., an acrylic nightguard) that I would wear in my mouth over my top teeth at night while I was sleeping. The idea was that the guard would "balance" my bite -- by having indentations for the bottom teeth, my bite would be kept in a "neutral" position while I was sleeping, and this would hopefully reduce bruxism (grinding) too. Ultimately, I couldn't tolerate the nightguard, nor two others guards I tried. I apparently reacted to the acrylic and/or the nighttime interference with my bite, which aggravated my fibromyalgia and worsened my sleep. Notably, my TMJ pain was one of the first things to get better when I had my amalgams removed down the road.

Unfortunately, despite all of these drug and dental treatments, I never really achieved  any great relief from my nasal/eye pain. It seemed to wax and wane, however. When it was at its worst, it was nearly unbearable. Who would have thought pain spanning a few inches across your eyes and the bridge of your nose could make you so miserable? Luckily, however, this is yet another problem that has predominantly disappeared since my mercury detox. A couple of mercury-related notes: first, I took those tetracycline-family antibiotics I've mentioned exactly three times. The first preceded my groin/leg/back pain by 12 days. The third preceded my back-pain explosion/start of narcotic pain-killers by 12 days. And the second course preceded the appearance of this eye/nasal pain by a few weeks as well, so the timing is particularly suspect.

Second, note this interesting description of "micromercurialism" (chronic intoxication from long-term exposure to low levels of mercury vapor) from the German professor A. Stock, who coined the term in the 1920's:

First degree micromercurialism results in lowered working capacity, increased fatigue, light nervous excitability ... in the second degree there is swelling of the nasal membranes, progressive weakening of memory, feelings of fear and loss of self-confidence, irritability, and headaches. Simultaneously there may be catarrhal symptoms and upper respiratory discomfort, changes in the mucous membranes of the mouth, bleeding gums. Sometimes there are feelings of coronary insufficiency, shivering, quickening pulse, and a tendency towards diarrhea. The third degree micromercurialism is characterized by symptoms approaching those of regular mercurialism ... headaches, general weakness, sleeplessness, decline in intellectual capacity, depression. Among other signs are tears, diarrhea, frequent urination, a feeling of pressure in the cardiac region and shivering.

Xray_skull_from_side_3I like this quote because so many of the symptoms described 80 years ago seem so familiar, like the reference to swollen nasal passages I highlighted. This symptom is not surprising if you think about it, as mercury vapor from dental amalgams only has to travel a few inches upward to reach the mucosa of the upper nasal cavity, and from there a few inches backward through spongy tissue to reach the hypothalamus and pituitary gland, the brain stem, and the brain in general.

Another related problem I had was a chronic sore throat. Recall that the ENT doctor saw inflammation in my pharynx, which is the general region at the back of the throat, and at the top of my larynx, which is the voice box. The ENT doctor more or less blamed my reflux as the likely cause, but the GI doctor said that, after my Stretta procedure and tests confirming no reflux, this was impossible. The GI doctor thought maybe the nasal issues I was having might be contributing to the sore throat, which the ENT doctor disputed. Nothing like your doctors disagreeing with each other to build your confidence! In any event, I would even raise my bed and sleep at an incline to try to minimize any potential reflux effects (i.e., using gravity to make it harder for stomach contents to go up the esophagus), but I would still get that sore throat. At times it was so bad my voice would be croaky in the morning for days on end. I sucked on a lot of lozenges, that's for sure.
                                           
Yet another strange problem that plagued me while I was sick was a plantar wart from hell. A planter wart is a benign viral growth that occurs on the ball, heel, or sole (plantar surface) of the foot. They hurt because they are on the sensitive area of the foot, and because you are always applying pressure to them while you are standing. Risk factors for plantar warts include repeated exposure to the virus (e.g., walking barefoot in public gym areas), and/or a weakened immune system. To finally kill this wart took over 2.5 years of treatment -- 29 separate office visits, mostly to a dermatologist. I'm pretty sure I set some kind of record at this dermatologist's office for the most-resistant plantar wart ever. Amongst the types of treatments applied were: 8 liquid nitrogen freezing treatments, 6 pulsed-dye laser treatments, and 15 injections of Bleomycin. As I understand it, Bleomycin is like the "nuclear bomb" of wart treatments -- it is a chemotherapy drug that is actually used to treat cancer. When injected directly into the wart, it is very effective at killing the wart tissue. But, as it is injected, it hurts in a way that can't really be described. I mean, getting a shot into the ball of your foot is bad enough, but then factor in that the shot is into very painful wart tissue, and include a painful, burning substance, and you can see why it was tough not to scream (but being a good patient and a "man", I bit my tongue). At least I didn't need coffee to wake up on those mornings I started by going to the dermatologist's office!

Restless_legs_syndrome_1Here's a strange, occasional problem I experienced: restless legs syndrome (RLS). According to Time magazine, "it's the most common sleep disorder you've probably never heard of." (Aug. 9, 2004). Apparently, RLS affects up to 10% of the population (roughly 30 million people), and causes nagging pain and discomfort along with an uncontrollable urge to move one's legs during periods of physical inactivity. I can tell you, although I only had it occasionally, it was pretty rough when I did experience it. It's a really unpleasant feeling, and can pretty much stop any chance you have of getting decent sleep. Also, sometimes when I woke up I would feel like every muscle in my legs had been "pulled", like a sports injury or something. The latest treatment for RLS being studied is Requip, a drug for Parkinson's disease that works by increasing dopamine. Interestingly, this same drug is being studied for fibromyalgia patients, and I first heard of it when it was recommended to me by the rheumatologist who diagnosed me with fibromyalgia. I never tried Requip, but I never experienced RLS again after detoxing, either.

Man_on_stairs_head_down_5A huge problem I have dealt with has been chronic fatigue, although it showed up late in the game, so thankfully I didn't have to contend with it as much while I was working.  Still, I dealt with it for years, starting from a time when I was taking some supplements that increased the toxicity of the mercury in my body (more on this in a separate posting). This wasn't the type of tiredness you get when you stay out too late and don't get enough sleep -- this was a bone-weary, drop-dead exhaustion that tends to sneak up on you, quickly wash over you, and consume you. It wouldn't matter if I was talking to the President when I was experiencing one of these attacks -- I would still pretty much shut down and "pass out". Also, there was an underlying weariness that was constant. And because my adrenal glands weren't working correctly, when I needed energy the most (e.g., in a very stressful situation), I couldn't get it -- like my "fuel line" was clogged. Actually, I even usually experienced what is known as a "paradoxical stress reaction" -- when I was in a stressful situation I would suddenly become even more tired. That was the worst -- a little stress and suddenly I was yawning and mentally whipped, right when I needed focus. Without a doubt the hardest part of chronic fatigue isn't the fatigue -- it's the absolutely intolerable levels of anxiety and stress from not having the energy necessary to deal with social or challenging situations.

By the way, one thing that seemed to often prompt huge waves of fatigue was a hot shower. About thirty minutes after a shower, I would just get more and more tired. Often, I was lucky just to crawl into bed in order to pass out for an hour or so, after which I felt ten times better. This phenomena happened with amazing consistency. A chlorine filter helped a little, but didn't prevent the fatigue attacks. I no longer get tired after showering, but even today I can still feel twinges of symptom flare-up occasionally after a shower.

I have read some doctors' claim that the number one medical problem plaguing Americans is fatigue. I'm sure there are many reasons for this, including not enough time for sleep, insomnia, hectic schedules, etc., but it also seems extremely likely that toxicity issues contribute to this social trend. Chronic fatigue syndrome may just be one Driving_while_asleep_1endpoint of a continuum of fatigue problems. The good news is that elimination of the fatigue has been one of my clearest and greatest successes. During chelation, every week the fatigue would diminish just a little bit more. So, for example, one day after having been chelating for a while it suddenly dawned on me that I could drive down the highway and not have to fight overwhelming (and scary) tiredness. What a relief! And today, it's pretty much entirely gone. It took a while, but wow, what a difference this makes in experiencing and enjoying life.

Heavy_fog_3Probably equally debilitating as the chronic fatigue is the "brain fog" I've suffered until recently. Actually, it often seemed to coincide with the fatigue attacks. I would describe brain fog as a rapid slow-down in reflexes and thinking ability, often with very quick onset, and often in stressful situations. The worst is trying to socialize with brain fog. Or work for that matter. At times, I felt like more of an actor than a thinking, contributing member of society, because I was just trying to "hang on" -- basically, to fake like I was fully present, cognizant, and alert. It felt like I had a 10-ton weight weighing down my thinking ability, so it was awfully hard to mentally track and respond to what other unaffected people were saying. Like with fatigue, the worst thing about brain fog is the inordinate stress created by being in this state and trying to interact with people (while usually being completely fatigued at the same time). A simple conversation required ten times as much effort as what normal people take for granted.

Other stuff --

Diagram_neck_swallowing_1Dysphagia: This involves difficultry and/or pain with swallowing. This is an unpleasant problem, and makes eating and swallowing pills difficult and painful. Based on my informal surveys, it also is apparently quite common, especially among mercury toxic people and possibly more so among women. It is definitely a symptom that got much better when I started chelation. On my chelation "dips", when other symptoms would flare up, this problem would sometimes return.

Cold hands and feet: I'm not sure how this relates, but I have a chronically cold right foot and left hand. The coldness kicks in when my other pain symptoms flare up, or when I have a drink of alcohol or anything else that challenges my immune system.

Skin problems: I definitely have lots of things going on here. First and foremost, I've fought seborrheic dermatitis for at least 15 years. Seborrheic dermatitis is a chronic inflammatory skin condition that causes redness, dryness, and flaking, generally in areas where sebaceous (oil) glands are most numerous and on the scalp (dandruff). I get it around the sides of my nose mainly and on the scalp. Men have this problem more than women, presumably because sebaceous glands are under the control of androgens (male hormones), and men have more androgens. In case you didn't notice this pattern with my problems, seborrheic dermatitis is yet one more condition for which the cause is not known. It is thought to affect 3% of the population or so. The prevailing theory is that yeast overgrowth in these areas may trigger an inflammatory response, although this has not been proven. Treatment is often with an antifungal cream and/or shampoo (e.g., Nizoral, Selsun Blue, Neutrogena T/Gel, etc.) or corticosteroid preparations.

Another skin problem I've had -- a more recent development -- is dermatitis on the hands, especially between the fingers. Dermatitis is an inflammation of the skin that occurs because the skin has lost its natural barrier ability, and thus irritants can provoke an inflammatory response. For me, it results in flaking, red, and cracking skin, although it's pretty minor overall. It comes and goes since I've been chelating (it first appeared after I started chelating).

Muscles_of_kneeKnee problems: These developed during the course of my back problems, but still plague me occasionally today. Actually, when I was at the height of my back problems, I almost certainly developed patellofemoral syndrome (PFS) (as diagnosed by my physical therapist), which is when the kneecap (patello) doesn't track in its groove over the thighbone (femur) correctly, causing inflammation and pain underneath the kneecap. You can't mistake it, believe me -- it can just kill when you are bending your knee. This was likely a result of the inflexibility/tightness in the muscles of my thighs, hamstrings, calves, or lower back from the surgery. But that knee pain is almost entirely gone today. I actually still have occasional knee pain today in my right knee, but it is a different, more diffuse knee pain, with no obvious physical abnormality like with the PFS. Again, in my informal survey of mercury-toxic people, knee problems are common, probably more so in women.

Insomnia: I've already discussed this in the context of my fibromyalgia a bit, but I thought I'd mention it again as a separate problem because, well, it is such a major problem. This has been one of the longest-running problems I've experienced, and seems to be the most resistant to treatment, including mercury detox. Undoubtedly, there are brain / neurotransmitter issues at work here. The pineal gland, which produces melatonin Cartoon_insomniac_2and provides the body's internal clock, is under control of the hypothalamus gland (recall the fibromyalgia-hypothalamus-mercury link). Interestingly, when I supplement melatonin, it makes me very sick, although I have no idea why. Currently, I take a prescription sleep drug, which has helped to an amazing degree. As my doctor says, if you can't sleep, nothing else really matters. My ability to sleep waxes and wanes with my other symptoms, so I know it is related to everything else.

Chronic sinusitis: This has plagued me since the time of that mysterious eye/nasal pain. I think it is a pretty standard symptom with mercury toxicity. Many mornings when I wake up I have congestion and stuffiness in my nasal passages. Also, at other times during the day this symptom can flare up, usually when my other symptoms flare up simultaneously (e.g., fibromyalgia pain). A Mayo Clinic study in 1999 determined that 96% of study subjects with chronic sinusitis had positive fungal (yeast) cultures from their sinuses. However, additional studies have shown that people who do not suffer from chronic sinusitis actually have similar levels of yeast in their sinuses, but that the sinusitis sufferers have an exaggerated immune response to the yeast. (Note the immune system connection again). Health care experts estimate that 37 million Americans are affected by sinusitis every year. And, as noted by the Mayo Clinic, the normal treatment for sinusitis -- antibiotics -- is often ineffective because they target bacteria, which is not the cause of chronic sinusitis according to their study.

Pre-diabetes: Yep, this is a strange one. As I mentioned elsewhere, I have a lean build, so the last thing in the world I thought I would have was any diabetic tendencies. Pre-diabetes is measured by a glucose-challenge test (i.e., you drink a sugar drink, and then have blood drawn every half-hour for a couple of hours). A person with pre-diabetes has blood sugar levels that are higher than normal, but not high enough to be considered diabetes. It causes no symptoms, but if changes aren't made to diet or lifestyle, most people with pre-diabetes will go on to develop diabetes. While 17 million Americans have diabetes, another 16 million are thought to have pre-diabetes, most of whom don't even know it. It's been over two years since I did the initial glucose-challenge test, and I haven't done another since to see if it has changed. It would be an interesting thing to check someday, however.

Next Up: Finally ... light at the end of the tunnel.

May 01, 2005 in Smorgasbord of Other Problems | Permalink

Finally...Light at the End of the Tunnel

Light_at_end_of_tunnel_12So now you've read a cataloging of my various strange symptoms, conditions, and experiences that I went through for about five years without any real explanation. I tried to list as much stuff as I could so that: (1) you can see the breadth of how much can go wrong in a previously perfectly-healthy person from mercury toxicity; (2) you can perhaps see shades of your own problems; and (3) you can maybe even make some connections between your own problems that perhaps you hadn't considered before. But now, I get to tell the best part of the story -- the happy part where I finally start getting some answers and improvement.

So, after years and years of continuing downturns, backslides, and deterioration, I was pretty unsure of what to do. But I just kept trying theory after theory to determine what could be causing me these problems. For example, some of the things I suspected and sought treatment for include: too little serotonin (a neurotransmitter), too much serotonin, yeast/candida overgrowth, Wilson's syndrome (too little T4-to-T3 thyroid-hormone conversion), magnesium deficiency, hypothyroidism (underactive thyroid), hypoadrenalism (underactive adrenal glands), carbohydrate metabolism problems, reactive hypoglycemia, as well as many other assorted theories and treatments for my GERD and sudden-onset back problems. Unfortunately, nothing really worked, and most everything I tried, particularly if it was a drug, made me worse. Plus, I was really bothered by the fact that none of these contemporary alternative medical diagnoses could be a unifying theory for all of my problems. For example, I'm sure I was hypothyroid, and/or had problems utilizing thyroid hormones peripherally in my tissues, but why? What would cause this? I see sweeping statements that some great percent of people show clinical signs of hypothyroidism, but why would that be? Is it a weakening genetic pool? Hypothyroidism, like most all endocrine dysfunction, seems more like a symptom of a disease then an actual cause.

Still, there wouldn't be people out championing these various syndromes if practitioners weren't seeing real world improvement in treating them. Thus, I don't really think any of them are "wrong" -- I just think people have stopped a little short of the original, "master" cause of the cascade of these diseases. Thus, I think mercury toxicity causes yeast/candida overgrowth, causes hypothyroidism, causes sertonin imbalances, etc. In fact, mercury is the only substance that has been scientifically proven to be capable of causiSkull_crossbones_blueng all of these imbalances and system breakdowns, because it is so highly toxic. Thus, the concept of widespread mercury toxicity provides the only true possibility of a unifying theory. And, in a non-coincidence, it is sitting in nearly 200 million people's mouths (or more -- by some counts, 90% of people have fillings), and has been injected into nearly every single person via vaccines. I can't imagine that there are many people out there who have never had a single filling nor had a single vaccine.

Anyway, at this point in my story, it had been about five years since I got that first Hep B vaccine and my eyesight started fluctuating, the headaches developed, etc. I'd been working for most of this period under these conditions, with an already-stressful corporate law job becoming about ten times harder with the pain, fatigue, and stress of these strange symptoms. So, I decided it was do-or-die time, that I had to quit my job and focus on getting better or it was never going to happen. I still didn't have an explanation, though, and was just hoping that by being able to devote my full energies to the problem, I could identify it and start turning it around. The scary part is that I know if I didn't happen to identify the actual (true) particular cause, I could still be chasing various theories and probably becoming pretty despondent by now. Knowledge is by the far the most important tool I ever had.

Vitamin_c_cartoon_1Before I quit my job, I decided to try one more alternative practitioner. This particular doctor happened to be a very big believer in vitamin C as a sort of cure-all, and that candida (yeast) really was the cause of many inexplicable problems like my own. So I started on a really heavy and varied vitamin and supplement regimen to address these issues, which was the first time I'd really tried this route. Inexplicably, I had sort of a dual reaction -- in some ways I got better, and in some ways I got worse. Among other things, I was taking several anti-candida supplements -- e.g., caprylic acid, garlic, pau d'arco tea, and Nystatin (oral prescription antifungal powder that tastes pretty much like soil, which is where it is grown). Because I was having problems with some of these (e.g., the pau d'arco tea gave me a sore throat whenever I drank it -- strange for a soothing tea!), we decided to try a more potent oral systemic antifungal drug -- Diflucan.

I give you this history of my anti-candida treatment because, when I started Diflucan, I was hit with fatigue the likes of which I had never experienced before. In fact, as I alluded to elsewhere, my fatigue really started when I began this general vitamin and supplement program. But, with the Diflucan -- whoa! I happened to be in Mexico on vacation, and I remember I barely had the strength to drag myself down to the beautiful Carribean beach, only to pass out on a beach chair once there. What a waste of a vacation! I was so down and depressed during this time it wasn't even funny. Of course now, in retrospect, I know what was happening to me. I was experiencing what alternative practitioners call a "die-off", or Herxheimer, reaction (named after the German physician who first observed this reaction). Basically, the theory says that "you have to get worse before you get better" -- that as you kill yeast organisms, they die and release toxins (referred to as "endotoxins" or toxins internal to the yeast cells), which then cause your already overstimulated immune system to overreact. Some Herxheimer-reaction symptoms include chills, headache, flu-like symptoms, itching and rashes, fever, night sweats, muscle aches, joint pains, mental fog, and extreme fatigue. Sound familiar? (hint: these are also, curiously, the exact symptoms of mercury toxicity).

I don't fully agree with the Herxheimer/die-off theory per se. It's not that I don't agree with the concept of getting much, much worse as you kill off the candida (or other bacteria or organisms, depending on the disease). And I can assuredly say from many, many experiences with this phenomena, it definitely happens. It's just that it's extremely unlikely that unknown endotoxins from fungi or bacteria happen to cause the exact same symptoms as raw mercury exposure. And, in fact, it's not a coincidence, when you consider that yeast cells can bind up a quantity of mercury equivalent to approximately their own weight. (Murray, S.D., and D. K. Kirby, "Sub-cellular Localization of Mercury in Yeast Grown in the Presence of Mercuric Chloride," J. Gen Microbiol., 86:66-74, 1975). The yeast in your body sequester the mercury coming from your teeth and other sources, so killing the yeast cells will re-release the mercury right back into your body, causing in effect a re-poisoning.

Yeast_cellsIn our bodies, the uptake and binding of mercury appears to be a survival mechanism for the yeast cells, which are microorganisms, i.e., they are alive and independent from us. Because daily doses of mercury are delivered to the gut from a person's fillings (and which can be methylated by these same yeast cells -- more on that later), these yeast cells bind the mercury to their cell walls so as not to be killed by it. Remember: mercury is antibiotic, antiviral, antifungal, cytotoxic -- it kills almost everything -- hence why it's used as a preservative in vaccines. And, one leading theory states that the immune system permits the yeast to overgrow in a sort of "deal-with-the-devil": although letting the yeast overgrow requires providing nutrition for the microorganisms (and hence depriving our own body of nutrients), and having to deal with their metabolic byproducts (toxins), it also saves the cells of our bodies from being suffocated and killed by direct exposure to the mercury. The problem is, with the balance of yeast to other assorted "good" bacteria close to the tipping point because of this compromise, the yeast can easily get out of control, as is the case with antibiotic use, sugar overconsumption, steroid use, birth control and other hormonal treatment, etc.

I have much more to say on the mercury-yeast connection. But this is just an introduction so you can understand why I was getting sicker while on this anti-candida treatment due to the Herxheimer reaction -- I was being re-poisoned through the equivalent of an acute mercury exposure. On an interesting sidenote, the details of Dr. Herxheimer's study (in 1902) when he noted this phenomena are rarely discussed. He was actually studying the treatment of syphiliatic lesions (i.e., from syphilis) with mercury. Yep, you read that right -- they used to treat syphilis with mercury -- because, remember, mercury kills viruses, including presumably the syphilis virus. The only problem is, this solution happens to be worse than the original disease. In facShakespearet, it is theorized that advanced (or tertiary) syphilis, generally considered to cause madness, might have been an effect of the mercury treatment, and not a result of the disease. Point-in-fact, in William Shakespeare's time, syphilis was treated with inhaled mercury vapor. Some doctors believe that Shakespeare's tremulous signature on his will, his social withdrawal in later years, and even his baldness might all be due to a mild degree of mercury vapor poisoning.

But, I diverge... back to my own story. Luckily I wasn't breathing mercury vapors to treat syphilis, but I was taking supplements and powerful prescription anti-fungals that were re-releasing mercury into my system. (Other supplements I was taking that were problematic, as I would later discover, included zinc and alpha lipoic acid). So I was fatigued -- really, really fatigued -- and also having lots of other symptoms, including difficulty getting along with people, anxiety, and frequent headaches. Also, strangely, I started getting some metallic taste from my lower right teeth for the first time ever. "Metallic" is probably the best way to describe the taste -- maybe like what you'd taste if you bit down on a sheet of aluminum foil.

Test_tubes_multicolor_2Well, about this time, the doctor who had started me on the anti-fungals and supplements suggested I take a "hair test". A hair test is easy -- they snip off an inch of hair at the nape of your neck where it has most recently grown. It turns out that hair is a good marker for potential toxins and minerals. While minerals and toxins are transported in very dilute concentrations in the blood, they are also incorporated in the structure of the hair's protein because blood bathes the growing hair follicles. In fact, toxic minerals can concentrate in the hair at several hundred times higher than blood levels. Hair tests are frequently used by scientific and government researchers to determine things like lead and mercury levels. Because hair tests are really an indirect means to measure body stores of various elements, they are often used as a sort of screening test for the body burden of toxic elements. However, I think my doctor just wanted to make sure my minerals were not out of balance. But, these results would change my life. (Hopefully soon I will post my initial results, as well as a subsequent hair test I had done roughly 1.5 years later, so you can see the dramatic comparison between the two, demonstrating the effectiveness of chelation).

For each toxic element and mineral, the test gives a result value, a reference range, and a percentile value. The reference range is what range a "normal" test subject would fall within. The percentile value is how you compare to other test subjects that the lab has processed and/or the general population. Thus, for example, my aluminum concentration was 9.1 parts per million (ppm), while the reference range was less than 7.0 ppm. This put me at about the 75th percentile, meaning I have more aluminum in my hair than 75% of people. Aluminum was my third-highest toxic element, and bismuth was my second (too much Pepto-Bismol? -- active ingredient bismuth). My first? Mercury. The reference range is less than 1.1 ppm, and I had 3.3 ppm, which was enough to be higher than 95% of people. When I pointed out this high result to my doctor, he suggested it was not a big deal, that it just showed that I was successfully excreting mercury. But, I countered, don't I have to have a lot of mercury in me to excrete a lot? Of course this is true.

Tooth_with_filling_2Well, this result and the metal taste coming from my teeth was enough for me to schedule an appointment to have my amalgams removed. At this point, I wasn't sure if this was my problem at all, but it seemed like a logical enough proposition, so I thought I would move forward with it, like any number of other medical theories I had pursued. So, two months later, I had my four amalgam fillings removed (you can see a picture of them here). There are many theories on how to remove fillings and in what order, but the most important precautions that any amalgam-removal specialist must follow are: (1) a dental dam (i.e., a sheet of rubber that prevents mercury chunks from going down your throat); (2) a separate source of oxygen for the patient (i.e., a respirator for you so you don't have to suck in those mercury vapors created by the drilling); and (3) high-speed suction to remove as much of the mercury vapor as possible. Other niceties include anaesthesia like nitrous oxide (i.e., laughing gas), and mercury-scavenging systems to collect mercury vapor in the dentist's office that escapes the high-speed suction. Some mercury-free dentists recommend removing amalgam fillings in a quadrant-by-quadrant fashion, and not crossing the midline of the mouth during a session. In general, with less fillings or through the use of anaesthesia, these rules are apparently less important.

Dentist_1While I don't have a clear memory of the removal process (but it sure was funny on that laughing gas -- ha ha, just kidding, laughing gas doesn't make you laugh), I do remember one thing very vividly. When she was examining me, the dentist commented that my back right filling was "leaking" (i.e., failing and disintegrating). Then, when the dentist was removing the fillings on my right side, I remember this distinct sudden surge of relief -- a relaxation on the right side of my body and the sense that a giant weight had been lifted. Also, the nitrous oxide suddenly felt more potent and I felt more relaxed. I believe this was because, upon final removal of the filings, the electrical currents flowing in my mouth caused by electrogalvinism ceased, once and for all. Electrogalvinism is a battery effect where dissimilar metals and saliva in contact with each other give rise to electrical currents. Those currents, as they've been measured by scientists (or anyone with a sensitive voltmeter), are orders of magnitude greater than the electrical current that the brain operates on, so you can see the potential for interfering effects. I had no idea I would feel this sudden relaxation of my body, so it was a complete "shock" (if you'll pardon the pun), and a very distinct feeling.

Over the next month or so, I started immediately noticing some mental changes -- I felt clearer, more focused, more relaxed, and had an easier time socializing right away. Also, my right TMJ pain eased immediately and my hair started becoming thicker and fuller. However, I also had increased body pain, canker sores, a bad sore throat, and increasing stomach pain, and felt more tired. This decline is understandable in light of a Swedish study showing that plasma mercury levels rose three- to four-fold immediately after removing amalgam fillings in study participants, then declined to the pre-removal levels at about one month, and finally were reduced to 50% of the initial value at about a year. (Molin M., Bergman B., Marklund S.L., Schutz A., and Skerfving S., "Mercury Selenium, and Glutathione Peroxidase Before and After Amalgam Removal in Man," Acta Odtontol Scand., 48(3):189-202, 1990 June). I don't think that all of the additional mercury absorbed from amalgam removal in this study necessarily made it out of the participants' bodies after a month, but it did leave their vascular systems, and surely a lot of it was naturally excreted. Similar to the study results, I had clearly aggravated symptoms for about a month after my removal. Yet, other symptoms, primarily mental, improved quickly.

Another interesting thing that happened to me during this time was that six days after the amalgam removal, I tried my first dose of a chemical chelator -- 2,3-dimercaptosuccinic acid, or DMSA. I didn't take much, only two 100mg capsules, but its effects were unbelievable: (1) my right TMJ pain increased substantially; (2) I had huge mental and coordination effects, becoming very slow, fuzzy, and disoriented; (3) I had some mild depression; and (4) I had a very difficult time speaking. In a sense, it was like a sudden case of "brain-lock". It was a really scary and unpleasant feeling. In retrospect, I probably had too much "loose" mercury floating around in my system to use this chelator. DMSA is thought to cross the blood-brain barrier and is hypothesized to redistribute mercury to the brain, so given that I was overflowing with mercury at this time, it was probably not the best point to try this chelator. However, the fact the chelator could cause these surprising effects definitely was a message: mercury is at the core of your problems.

Next up: Chelating my way out of the darkness.

April 30, 2005 in Light at End of the Tunnel | Permalink

Chelating My Way Out of the Darkness

Miner_darkness1_3About a month after I had my amalgams removed, I started making some serious gains. Namely, for the first time since I had started taking narcotic painkillers nearly two years earlier, I was finally able to start reducing my use of them. I always knew that when the pain decreased, I would be able to quit using them. I never liked them -- they didn't provide steady pain relief, and they caused side effects. Believe it or not, the Tylenol portion of the pain-killer actually increased my pain before the narcotic part (hydrocodone) would kick in and take away the pain, roughly 30 minutes after taking it. I react to many, many medications, even at extremely low doses, which is fairly common for people with fibromyalgia.

Well, this was a very exciting development, as it was a clear marker of change -- I would not be able to reduce my use of the painkillers if the pain I was using them to control wasn't decreasing. Then, within about a month of starting chelation, I was able to stop using painkillers altogether. Yep, after two years of daily narcotic painkiller use, I was done. And I never went back. It was great not to have to go through each day with my thinking ability affected by a drug -- I felt more "alive", more aware of the little details of day-in day-out life, and more like my old self. While I wasn't pain-free, my pain was reduced to a level I could tolerate and deal with without the drugs.

Circulatory_system_2There are many theories and opinions on how to chelate properly. The theories that always made the most sense to me involve a dosing schedule that keeps blood levels of the chemical chelator as steady as possible around-the-clock. Otherwise, without steady levels of chelator available, when the "half-life" of the chelator has passed (i.e., the time required for half the amount of the chelator to be eliminated from the body or to be converted to another substance), the portion of the toxic metal that didn't make it out of the body would begin to be re-released back into the blood stream and body. This phenomena is known as "resettling", and it is akin to being re-poisoned in a way, because your tissues are being exposed to mercury (and other metals) in a new toxic event. And, unfortunately, there is no way to avoid it. First of all, there is no way to keep the chelator at exactly even levels throughout a chelation cycle, and second, you would not want to chelate every day continuously. Because chelators remove the toxic metals out the body's liver/bowel or kidney/bladder routes, this toxic outpouring is extremely hard on those organs and they need time to repair and recover. Thus, it is important to take rest periods between chelation cycles. Second, in a way that will be described in further detail in an additional post (because it is so important), a large part of the chelation process occurs not when actually taking the chelators, but when on rest periods, when the body shifts stores of mercury in deeper tissues and organs to more superficial tissues due to concentration gradient differences.

When you chelate, you stir up, or "mobilize", mercury and other toxic metals from the various places it is stored in your body. Because the chemical chelators have a stronger affinity for the mercury than do the proteins in your body, the chelators can bind to the mercury and pull it away from its tight bonds with your organs and other tissues (recall that the word "chelation" originated from the Greek word for "claw"). But, unfortunately, only a portion of the mobilized mercury will then actually be excreted by your body, through the aforementioned routes. This probably reflects, in part, the extreme toxicity of these substances to your excretory organs. The rest of the mercury will be redistributed among the tissues of your body as the chelator begins to be used up. In the words of mercury-detox authority Detriech K. Klinghardt, MD, PhD:

There is a difference between mobilizing and detoxing. Mobilization means stirring [mercury] up in its hiding place. Mobilization may lead to excretion. It also may lead to redistribution. The body had done the best it could by storing [mercury] wherever it stored it. By mobilizing, we tell the body that we know better where to put it. We don't.

Detoxifying or detoxing means mobilizing and moving it out of the body. There are not true detoxifying agents. All we have is mobilizing agents. The body has to do the excreting with the help of the proper agents. The body is not always able to do this! Often perpetuating factors are present that disable the body's mechanisms to detox. (D. Klinghardt, "Mercury Detoxification Perpetuating Factors, Problems, and Obstacles").

So, as you can see, chelation is a difficult, challenging process fraught with ups and downs. Maybe someday we'll have super-detox drugs or other mechanisms that can not only strip the mercury away from our own tissues, but also assure that nearly 100% of that mobilized mercury then gets out. When those drugs are invented, chelation will be an easy straightforward proposition that will lead directly to improved health. This is not how it works today.

While using the DMSA, I kept improving: reduced muscle pain, increased mental clarity, less anxiety, improved eyesight, increased energy, less allergy-type problems, improved sense of well-being, etc. I was doing cycles of 3 days "on" (taking small amounts of the DMSA every 4 hours or so, around the clock, for those 3 days), and then taking 4 to 11 days "off" of the DMSA. But, about a month after starting the DMSA, I started developing some troubling side effects. For example, the front of my neck started feeling uncomfortable and hurting. When I wore any T-shirt that contacted the front of my neck, it became very bothersome and I would keep adjusting it so it wasn't resting on the front of my neck. I went and saw an internist, who did basic bloodwork and X-rays to rule out any more serious causes (e.g., lymphoma, thyroid disease). Once he ruled  out those possibilities, he basically said that he didn't really know, but we could run more sophisticated diagnostic tests if I wanted. However, he had a strong suspicion that it was more likely related to my fibromyalgia than anything else. We didn't discuss the chelation.

Muscles_of_neckUnfortunately, this problem wasn't going away. And, to say it was annoying or uncomfortable would be a big understatement. Who knew that the front of one's neck, which probably 99% of people are never even aware of, could be such a continuous source of pain and discomfort? I mean, it hardly seems like the most sensitive part of the body. I knew the problem was likely from mercury since it developed while mobilizing mercury with DMSA, and that the doctor was right, it probably was a fibromyalgia-type reaction in the muscles of my neck to that mercury. But, as I continued to try to chelate it out with the DMSA, it just kept getting worse. I was quickly becoming very discouraged by this turn of events. I'm not sure why my neck was a resettling point for the mobilized mercury -- perhaps because it was draining from my head where I have a ton of it because of the fillings? -- or why it wasn't clearing out from my neck. I was very, very dispirited by the fact that, after finally finding something that could make me feel better, it also simultaneously seemed to be hurting me.

I tried to soldier on like this for 4-5 months. The DMSA chelation went from being helpful, to plateauing, to causing me to regress and go downhill. Chelation became so painful and problematic that I was forced to admit to myself that I was not going to be able to continue. I also think that the redistribution effects of the mercury were causing some mental depressive-type effects, as I was seriously down during this period.

Luckily, I had a friend who was highly mercury toxic, and who was also chelating at the same time. She suggested a different type of mercury chelator, 2,3-dimercaptopropane-1- sulfonate (DMPS). I had heard of DMPS, which is commonly administered by intravenous (IV) injection. There is a certain amount of anti-DMPS lore on the Internet, like the infamous site DMPSbackfire.com, which had always scared me away from DMPS. But, at this point, I didn't care and didn't have anything to lose, so I located a practitioner (naturopathic physician) who administered DMPS IV's. I queried him about side effects or problems with DMPS, but he had never had any. I also did a lot of research. It turns out that DMPS is a more potent mercury chelator than DMSA -- in fact, it is the most potent mercury chelator we have today. For example, in one study on rabbits acutely poisoned with mercury and then treated with various chelating agents, "DMPS was the most efficient chelator, removing 86 percent of the mercury in three hours, with DMSA being the next-most efficient, removing 65 percent of the mercury." (Patrick L., "Mercury Toxicity and Antioxidants: Part 1: Role of Glutathione and Alpha-Lipoic Acid in the Treatment of Mercury Toxicity," Altern Med Rev., 7(6):456-471, Dec. 2002). (I italicized acutely because, believe me, DMPS cannot remove 86% of mercury from chronic exposure in three hours!)

Actually, I think that it is DMPS' effectiveness that leads to the supposed increased side effects seen with this drug. I have obtained the original DMPS manufacturer's (Heyl of Berlin, Germany) "scientific monograph" on DMPS, and I can definitely say that it is a well-studied and well-researched drug, particularly in Europe. DMPS was originally developed in the former Soviet Union in 1958, where it was used for industrial workers injured by exposure to heavy metals, but it was not available outside that country until 1978. This was because DMPS had potential use as an antidote to the chemical weapon Lewisite (ah, the good ol' Cold War). In 1978, Heyl announced its synthesis and distribution to the western world. Since then, DMPS has been widely used as a chelating agent for both diagnostic and treatment purposes, and it is used extensively in Europe and on a more limited basis in North America as a treatment for mercury, arsenic, and lead toxicity. It is a registered drug in Germany where, due to its long record of safety, it is available without a prescription.

Overall, I think DMPS has several advantages over DMSA, the principal advantage being that it is a much more effective mercury chelator -- it has made all the difference in the world in my own recovery. Actually, many doctors believe that, when used properly, DMPS actually has less side effects than DMSA, and from my 1.5 years of experience with both types of chelators, I would definitely agree with this. Other advantages include the fact that DMPS appears to remain in the body for a longer period of time than DMSA. Also, DMPS acts more quickly than DMSA, probably because its distribution is both extracellular (outside of cells) and intracellular (within cells), where DMSA appears to be distributed only extracellularly. And, DMPS is available for intravenous and Drawing_intestinesintramuscular use, as well as in oral form, where DMSA is only available in oral form. Furthermore, DMSA appears to cause more yeast problems than DMPS, possibly in part because more DMSA remains in the gut than DMPS (only about 20% of an oral dose of DMSA is absorbed from the GI tract -- the other 80% travels through the GI system unabsorbed -- versus about 50% for oral DMPS). This may draw more mercury into the gut, and thus increase the presence of yeast (causing a yeast "flare-up") due to the sequestering effects of yeast described previously. Also, a higher percentage of DMPS appears to be excreted through the kidneys than with DMSA, which presents certain advantages over the liver/bowel route, such as avoiding the "enterohepatic reuptake loop."

(The enterohepatic reuptake loop refers to the fact that while large amounts of bile acids are secreted into the small intestine every day, only relatively small quantities are lost from the body. Bile, containing bile acids, is a thick, yellowish digestive fluid produced in the liver and stored in the gallbladder that helps eliminate cholesterol from the body, helps the body digest fats, and transports many waste products and toxins (including mercury). Approximately 95% of the bile acids delivered to the upper part of the small intestine are absorbed back into the blood stream in the lower part of the small intestine, so not too much of the mercury that is attached to glutathione or cysteine (detoxification) molecules in bile actually makes it out of the body).

And finally, DMSA appears to deplete cysteine. This is bad because cysteine is a sulfur amino acid that is a precursor to glutathione, the body's cells' main antioxidant and detoxification mechanism. Thus, DMSA may lead to further depletion of cysteine and glutathione stores, which are often already low in metal toxic patients. I think this may be part of the reason why I actually started going downhill while using DMSA.

Anyway, while it may sound like I'm completely against DMSA, this is not the case. Because everyone is biochemically different from each other, I am sure there are many people who can tolerate DMSA just fine, and for whom it will be effective. It was definitely somewhat effective for me, but, simply put, there was a night-and-day difference in my recovery between DMSA and DMPS. More specifically, if it weren't for DMPS (over the DMSA), I would not be writing this blog today because I would not have made the recovery that I did. And, I think that DMPS is the closest thing we have to a "silver bullet" for treating mercury toxicity (although, it is actually far from a panacea). If you get beyond the lore, DMPS should be able to make substantial waves in the world by legitimizing mercury toxicity as a cause of illness, because these illnesses can now be cured or substantially improved.

Vaccine_syringe_cartoonThus, I was not surprised at all in the past year when I started hearing that the biggest gains ever recorded in treating autism were being made by the use of DMPS. (I've got a lot to say about autism, which I predict will soon be proven to be largely caused by the mercury preservative in vaccines, thimerosal. In addition to the efforts of the indefatigable parents of autistic children who have pushed this issue despite fierce political, legal, and medical resistance, I think NY Times writer David Kirby's new book, Evidence of Harm  (released April 1, 2005), will ultimately be the proverbial crack in the dam that unleashes the flood on this issue).

The leading research group looking at nutritional, genetic, and chemical factors involved in autism -- DAN! (Defeat Autism Now!) -- has long held the view that DMSA is the appropriate chelator of choice for autistic kids. But, Dr. Rashid Buttar of North Carolina was not having any luck treating his own autistic son with DMSA. Yet, he had successfully treated numerous adult patients with intravenous DMPS -- but, giving an IV wasn't a viable option for small children. And, according to Dr. Buttar, the oral form of DMPS causes gut problems in autistic children, such as absorption difficulties and yeast issues. So, Dr. Buttar formulated the DMPS for transdermal delivery -- a cream that seeps through the skin and is absorbed directly into the body, skipping the GI system. He calls this formulation TD-DMPS. Apparently, unlike DMSA, this treatment protocol worked -- five months after initiating treatment with the TD-DMPS, Dr. Buttar's son started to speak with such rapid progression that his speech therapist commented she had never seen such rapid progress. Apparently, today, Dr. Buttar's son is even ahead of his normal peers in math and verbal skills, etc.

Dr. Buttar also has conducted a study on 31 autistic children using the TD-DMPS protocol, and has reported that, currently, 22 of those children have been completely "cured" of autism (i.e., no more autistic symptoms). This is remarkable in that no other treatment protocol has used the c-word as even a possible outcome of treatment. Dr. Buttar presented this information to Congress in a presentation on May 6, 2004. This outcome also was part of a story on chelation in the Feb. 15, 2005 edition of the Wall Street Journal: "A Radical Approach to Autism: Some Physicians, Families Tout Metal-Stripping Drugs, But Benefits Are Unproved." Dr. Buttar has stated that, in his son's case, the DMPS was 10 times more effective than DMSA at removing mercury.

Brain_on_fire_1One of the DMSA proponents' main arguments for using DMSA over DMPS is that DMSA is thought to cross the blood-brain barrier, where DMPS is generally believed not to do so. (The blood-brain barrier is a barrier that protects the brain from harmful substances in the blood stream, while still supplying the brain with the required nutrients for proper function). Thus, it is thought, DMSA can chelate mercury out of the brain, where so much of the mercury goes and causes problems, while DMPS cannot. Of course, this has a flip-side problem: when the body levels of mercury are high, there is some possibility that the DMSA will transport mercury into, not out of, the brain. (Recall my "brain-lock" when I took the DMSA shortly after amalgam removal). Anyhow, based on my own experience, I want to set the record straight: there is no question that DMPS helps pull mercury from the brain, and, for me anyway, much more effectively than DMSA. How do I know? Well, some of the mental symptoms I've been dealing with got much worse -- "flared up" -- after my second DMPS IV, and then, over the course of my treatment, have gotten much, much better and even largely disappeared. In fact, the improvement of these symptoms (e.g., anxiety, irritability, compulsiveness, irrational fear, depression, etc.) has been far and away the best thing to come from this whole saga. This improvement despite DMPS' inability to cross the blood-brain barrier is easily explained through the law of osmosis. If the connective tissue and vascular system (i.e., the portions of the body accessible to the DMPS) are free of heavy metals, but the brain and nervous system have a high heavy metal burden, then given enough time, the heavy metals will shift from the brain into the other tissues where the body can excrete them.

OK, that's my tour of the basics of the chemical chelators for mercury. But, who cares about the science and statistics of it all if it doesn't work... luckily, I can say the use of DMPS has turned my life around. I have been using DMPS for about a year, both orally and intravenously, and from the first dose, I knew this was going to make a big difference. Within two IV's, that nagging neck pain started getting better. And there was no looking back from there. Here are some of the improvements I have experienced:

(1) my muscles are working a lot better -- they're stronger and more flexible;
(2) I'm not as cold, both in my core and in my hands and feet -- my thyroid seems to be working better;
(3) my short-term memory and cognitive ability are hugely improved;
(4) my joints work much better -- far less popping and "loose" feelings;
(5) my hair is thicker, stronger, and growing back (slowly) in some of the places I lost it;
(6) I have far less allergies / pain from allergies;
(7) my low back feels so very much better than it used to -- it's not pain-free, but, generally, it rarely hurts;
(8) my fatigue is almost entirely gone now -- it's been a slow process, but I'm back to basically full energy;
(9) I'm much more calm / less anxious;
(10) my heartbeat is "steadier";
(11) my outlook / sense of optimism is way up;
(12) my sense of well-being is way up;
(13) my blurry vision is gone;
(14) my fibromyalgia / whole-body pain is probably 85-90% gone;
(15) my body feels much, much more relaxed than it did before;
(16) my nasal / eye pain is gone;
(17) my appetite has stabilized -- no more hypoglycemia, huge hunger attacks, etc.;
(18) I have excellent exercise capability -- amazing strength and endurance, and I can get my heart rate up way higher than I could previously;
(19) my chronic sinusitis is substantially better;
(20) my seborrheic dermatitis is nearly gone after over 15 years;
(21) my skin is more "supple" -- it has more color, tans much easier (while I was sick, it would burn quickly), and looks more moist;
(22) I have an easier time swallowing;
(23) I tolerate alcohol much better;
(24) my cravings for sugar are down, although this increases or decreases depending on when I am chelating;
(25) I have more self-confidence and self-esteem;
(26) I enjoy socializing with other people more;
(27) I no longer get eye pain while looking at a computer screen (from ultraviolet light?);
(28) I tolerate all types of foods better (i.e., less food allergies);
(29) I am able to wear contacts much more comfortably, presumably because my eyes are much less dry;
(30) I have more motivation to get things done;
(31) my carpal tunnel symptoms are gone;
(32) while not gone, my floaters are much lighter and, somehow, much more mentally tolerable;
(33) I no longer have an eye twitch in my left eyelid;
(34) I no longer get headaches -- at all;
(35) I rarely ever have a sore throat;
(36) I no longer have reflux at all;
(37) I no longer have restless legs syndrome (RLS);
(38) my blood pressure is totally normal again; and
(39) my TMJ problems are gone.

So, to say I've made a miraculous recovery would almost be, well... an understatement. Basically, I've either recovered or hugely improved from numerous incurable chronic diseases that are plaguing our world today. I want to get the message out there: there is hope, and maybe a cure. Since I had no idea what to expect when chelating, it is hard to believe that these improvements are merely due to the placebo effect, as I had no preconception that many of these things could be caused by mercury poisoning and therefore could be improved.

Light_bulb_in_brain_2Hands down, the most significant change I've experienced is the improved mental / emotional functioning that I've mentioned. What's particularly interesting is that I've rolled back not only all of the mental anxiety, irritability, and depression (not to mention cognitive dysfunction) I've experienced over the past seven years, but actually from long before that time. And I had no idea that could happen, or that I was suffering neurotoxicity-induced anxiety before I was officially sick. I'm referring to the time when I had my first fillings placed, when I was 18. My years in college were difficult in many ways, which I had just attributed to the stress of a new environment and my personality. Well, it turns out that some of that worry, perfectionism, compulsive tendencies, fear, irritability, etc. were not just my personality, but rather symptoms of a disease -- and now, mostly gone. If I had written down what changes I expected to occur from chelating before I started, there's no way I could have predicted I would feel as calm, relaxed, healthy, happy, sharp, and resilient as I do today.

Tragedy_comedy_masks_1Since mercury is a neurotoxin, it seems fairly plausible that micromercurialism is ramping up people's anxieties and irritability, or driving certain vulnerable people to depressive states. This seems especially likely based on what I have personally experienced, and what others I know have experienced, after removing mercury. A psychologist I know once told me that, "if the cure to anxiety and depression are ever discovered, 99% of us [psychologists] will be out of business." (We weren't discussing mercury or toxicity issues). First of all, that's a very eye-opening statement on life in contemporary America, but second, the huge implications are obvious.

I cannot say that I'm a-ok today. My recovery is still in process, and I'm still struggling with the up-down process that is chelation. I'm not sure if there are things that will never fully recover because permanent damage has occurred, although, to be honest, I really don't worry about this that much. Also, I swear I'm learning new stuff every day. For example, chelation had recently plateaued for me again, and I had been struggling to understand why. Finally, after a few months, I think I got it and I'm now making huge gains again. I will post my information on this soon, but I have to say it once again flies in the face of what 95% of the alternative practitioners are saying, or failing to say. This is why getting better through detoxing today is a lot like frontier medicine in the Wild West, and everyone is on their own. (I think a lot of the advice out there is actually making people worse and hurting them).

So, I hope that this catalog of my seven year odyssey -- from good, normal health, through the depths of disease and dysfunction, and now back again (and then some) -- has been helpful to you, or at least interesting. Looking back over what I've written, I'm amazed myself at what I've been through. But when you're trying to deal with the daily grind of coping and survival, it's just one foot in front of the other, so you don't really get a chance to see the forest for the trees. However, if you happen to be able to find a mountain, you can climb it and see the whole forest for what it really is. Here's to adding a little bit of altitude!

April 29, 2005 in Chelating Out of the Darkness | Permalink

Where the Details Come From

If you've read my story, you probably realize there are a lot of details about my symptoms, conditions, experiences, doctor visits, treatments, timing, medical history, etc. You might wonder how I can remember all of this information, or at least how I keep it all straight. Also, since one of the most important things I've done for myself is make correlations -- e.g., correlations between my various symptoms, or between changes in those symptoms, or between a treatment and its effects -- you can appreciate how important it has been to have a good historical record. This is especially true because many of the "eureka" moments where I make links and associations come long after the events occurred. So, what information do I have to rely on?

Well, luckily, I'm pretty good at documentation. Here's what I work with:

Photo_diary_pen_at_tilt_2(1) A daily medical journal going back four years. I started this when things were looking really bleak, shortly after my leg/groin/back pain started and my eyes and stomach were "flipped out". Basically, it was a coping mechanism. Things were changing so fast (for the worst) and in such an unpredictable fashion that I knew I needed to write it all down, or I would forget what happened and when. While I often thought I could just remember when something significant happened, especially at the time it happened, I quickly learned that this was simply not the case, and what is fresh in memory one week may fade fairly quickly in another few weeks. So, perhaps not surprisingly, the journal has been the single biggest help in deciphering what has happened to me, and in finding ways to get better. I think so many of the things that happened to me would simply be lost forever if I hadn't memorialized them. I try to record any noticeable change in my symptoms: energy level, mental state, sleep problems, eating habits, pain levels, etc. A side benefit of doing this is that it has made me extremely aware of how I'm feeling at any given moment, which has helped me to experiment with different treatments. Also, when I first started keeping this journal, at a time when it didn't seem like there was any hope and new problems seemed to be cropping up everyday, the journal proved to be extremely therapeutic. I guess it was a way of legitimizing everything that happened to me, to sum it all up for each day and see it as a process that, even if it couldn't be controlled or predicted yet, could at least be recorded.

Medical_records_horizontal_4(2) Medical records and test results. These records, which I obtained from nearly every one of my doctors, have proven extremely valuable in seeing what was going on with my health, and when. They are particularly useful and interesting because a third-party (the doctor) wrote up not only my symptoms and story (as they framed it by asking specific questions), but also their thoughts on what I was experiencing and/or differential diagnoses. The lab test results show changes in blood chemistry, diagnostic results for scans, and outcomes of important tests like the discogram, etc.

(3) Write-ups from my doctor visits. Much like my realization that if I didn't record my daily health changes, the information would be lost forever, I also realized that the extensive information I obtained from my doctor visits needed to be recorded. I saw a lot of doctors, a lot of times (as I noted in the "about" section, my total medical expenses exceeded $100k), and I was constantly getting new results from tests, new strategies for treatment, new thoughts on what might be wrong with me. Also, to determine what questions I should ask at my next visit with a particular doctor, I needed to understand the information that had been exchanged at the previous visit and see where holes existed, what factors had changed since that time, etc. Again, right after a visit, you just sort of assume you'll remember the important points of that visit, but when you're dealing with such a complex medical picture as my own, this simply isn't possible. Thus, while it was a huge pain-in-the-butt, after every important doctor visit I would force myself to sit down and type up a summary of what had transpired. In the end, I was so thankful that I forced myself to do this! Because I could type a lot more for these occasional "write-ups" than I could write day-to-day in my medical journal, these write-ups are great snapshots into what I was experiencing at various points in my progression. Plus, I have a great record of what my doctors told me, asked me, and recommended, at almost all of my appointments. These write-ups have proven to be invaluable.

(4) Medical insurance summaries. An important part of understanding the timing of when I was being treated, and for what, is documentation of every single doctor's appointment, diagnostic test, and therapeutic treatment that I have had. Not to mention, when you deal with as many health providers as I have, you'd better follow insurance payments to those providers, because there are going to be mistakes -- a lot of them. I can't even estimate how many hours I've spent, as patiently as possible, trying to sort out billing and payment errors -- often two, three, or four times over the same issue. I certainly sympathize with anyone receiving medical care in this country, because you've got to know how to play the game, or it will bite you. Anyway, I have good spreadsheet data and insurance paperwork on all medical treatment I received, when, and for what (as well as the payments I made). I have just under 350 medical entries for the past four years, substantially decreasing in quantity over the years (thankfully), many of which I paid for completely out-of-pocket because insurance would not cover the charges. In other words, I have paid a not-insignificant portion of that $100k in medical costs.

(5) Prescription drug records. Given all of the drug therapies I've tried, it has been very important to be able to see what I tried and when. I have found one of the easiest ways to keep an historical record of the drug therapies is from the prescribing information you get from the pharmacy with a prescription -- e.g., the "For Your Information, Questions? Ask Your Pharmacist" flyer. It usually lists the drug, the date, the directions, and the basic prescribing information. It is a great way to memorialize prescription drug history, and a good source of information about those drugs.

Documents_cartoon_1(6) Miscellaneous observations. I type up lists of particular changes or things I've noticed. For example, I created lists such as "Things That Have Gone Wrong Since the Start of the Illness", "Things Improved Since Start of First Chelation (DMSA)", "Improvements Since DMPS", at the time these events occurred. This is an easy way to see quick summaries of symptom changes.

(7) Research. While I haven't worked for nearly two years, I have spent every day thinking about my health, designing therapeutic experiments, postulating various theories, monitoring other friends' results with chelation, keeping close tabs on my own symptoms, and, perhaps most of all, researching. I've read books, articles, scientific papers, websites, etc. I keep files full of these documents. The Internet, in particular, has been very helpful as there is a lot of information (way, way too much information) available on these issues. Also, databases like the U.S. National Library of Medicine's "PubMed" database, a searchable, free database that includes abstracts from scientific papers in over 4,800 journals published in the United States and more than 70 other countries (primarily from 1966 to the present), have been invaluable. How amazing it is that we have access today to such a wealth of information that really fulfills one of the key missions of science -- to be widely disseminated so as to be a building block for additional scientific advances. I feel very fortunate to be alive at this point in history. In any event, one of the most important sources of information to me by far has been other peoples' experiences, although there are not that many good sources of this information. This was really one of the only ways I could check to see if symptoms or effects I was experiencing from a treatment were consistent with what others had experienced. Recognizing the importance of this information really was the genesis of the MercuryLife project.

April 28, 2005 in The Details | Permalink

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