Wednesday, April 29, 2009

Drunk on Mercury

Drunk: "being in a temporary state in which one's physical and mental faculties are impaired by an excess..."

For years, I've been patting myself on the back for not having mercury show up on my hair and blood tests of toxic metals. I thoughtI had taken care of this adequately: a year of Modifilan (a brown algae product said to chelate metals), another of chlorella (a green algae particularly praised for its ability to grab mercury and other heavy metals), and to years of closely following the protocol of Patricia Kane for eliminating fat soluble toxins in the Detoxx book. I also went through a few bottles of PCA-Rx by Maxam, a great product with chlorella, took lots of ALA (alpha lipoic acid) by taking Poly-MVA, and (of course) got my two amalgam fillings removed.

It turns out that my efforts were not sufficient. For one thing, the dentist who removed my fillings didn't take any precautions to prevent breathing in and absorbing lots of mercury vapors. Mercury-free dentists today, like Dr. John Johnson in New Albany, OH, use a rubber dam to prevent absorption during the removal process. For another, mercury tends to be the last heavy metal excreted as the body cleans house, and I had barely begun to clean house when I relapsed in 2007. My detoxification pathways, from what I now know about the interlocking methylation/folate/transulfuration pathways, were not working efficiently enough to release metals. Consequently, whenever I tested, it looked as if my toxic metal load was low.

I recently read Hair Mineral Analysis: Finding Hidden Toxicities, by Andy Cutler, Ph.D. LINk This book cleared up questions I've harbored for years about how to read hair tests. YOU DON'T TAKE THEM LITERALLY. That is, if there is an unusual distribution pattern in the results of essential elements, like calcium, magnesium, potassium, sodium, sulfur, phosphorus, zinc and copper -- to name the most commonly tested -- then the levels of toxic metals don't accurately reflect the levels stored in body tissues. Cutler has devised five counting rules to identify unusual distribution patterns.

The first holistic doctor I saw in 1994 -- the year I had to leave work due to unbearable fatigue, emotional distress, and insomnia -- ordered a hair test, handed me the results, and said I looked fine. A second test about 4 years later confirmed my 'good' results. A few years later, in the midst of my study of naturopathic medicine, I saw a friend's report from ARL labs which had eight typed pages of analysis. I signed up for an account with them, ordered books and newsletters, took hair samples every 3-4 months, and diligently followed their advice. Mercury never showed on a single test, although I did have high levels of antimony, aluminum and nickel, which often are retained when there is hidden mercury.

After reading Cutler's book, I pulled out all my old tests, followed his counting rules, and discovered that on every single one, I had a pattern of "deranged mineral transport due to mercury toxicity." It felt oddly happy. It's always nice to find something that could be causing my problems, other than God or bad luck, especially if it is something as capable of being fixed as a body burden of mercury. Cutler has a section in which he describes the toxicity effects of various metals. His portrait of mercury toxicity read like my autobiography.

Did you know that mercury intoxication was common among hat-makers because the felt they used was treated with mercury. My first role in a play, at 9 years of age in summer camp, was as the Mad Hatter in Alice in Wonderland. I did cartwheels on entry. Someone up there has a strange sense of humor! :)

I stopped testing hair in 2006 and turned to coloring instead. Now, after reading Cutler and analyzing 12 years of hair tests, I wanted to see if anything had changed by supporting my methylation. So I did another test.

Here are the results:
BTW, If you are curious to see the test results, I posted them on Scribd at
www.scribd.com/doc/14826449/dd-hair-apr-2009


Among toxic metals, only Aluminum goes above the normal range. That's good -- it's higher than I had before which means (since I no longer use aluminum pots, aluminum foil, or aluminum-based deodorants) I'm getting rid of stored reserves. I have low levels of excretion of 12 other metals. Mercury is one of them. The total toxic burden appears to be fairly low.

Then I look at the essential minerals, and follow Cutler's counting rules. 20 of them, are in the middle range between white and green, 10 of them are above 50%, 11 below 50% and only 1 goes all the way into the red zone.

Do these results meet Cutler's counting rules for hidden mercury intoxication? No. Cause for celebration? I can't decide. My symptoms, and my history, are very close to his portrait of chronic mercury intoxication, which I quote below, bolding everything that applies to me, past or present.

Cutler's description of mercury intoxication from www.noamalgam.com
In an overall lifestyle sense, the fact that symptoms come and go leads to the victim having periods of weeks to years of being highly functional and productive, interspersed with periods of being nonproductive and having a hard time getting anything done. Life seems to progress in fits and starts. Great progress is made on projects which later get shelved for long periods. As the disease continues, the productive periods become shorter, fewer, and farther between.

There are emotional changes in mercury poisoning. Depression slowly sets in. Victims feel fatigued and listless. They lack motivation - even for crucial tasks. They lose interest in their surroundings and in their own life. They do not enjoy life, or experience happiness or joy. They experience constant fear e. g. of losing their job. They may be very tense. They feel hopeless. They have a sense of impending doom. Every small problem is discouraging. Minor difficulties seem overwhelming and insurmountable.

The altered emotional state of a mercury intoxicated person leads to impaired interpersonal relationships. They become increasingly irritable and sensitive, reacting strongly to relatively innocent remarks. They may not be able to take orders, instructions, or suggestions without losing their temper. They resent criticism and may interpret innocent remarks critically. They may have an exaggerated response to stimulation and become fearful or anxious and nervous. They may project their fears and anxieties onto others, making inappropriate criticisms or attacks. They become shy and avoid dealing with strangers. While timid, they may unexpectedly lose self control with strangers. They may wish to visit with friends and family extensively, often wishing to engage in long, repetitive conversations, then withdraw for prolonged periods of time. They withdraw more and more from social contacts.

Intelligence gradually deteriorates. Previously bright persons become dull and slow in thinking. They suffer from a progressive decline specifically affecting short term memory as well as the faculties for logical reasoning. Thus their ability to do things like balance the checkbook, do math, or play chess suffers. They lose the ability to concentrate. Memory problems may be more from distractability and inability to concentrate and pay enough attention to get things INTO their memory than an actual failure to remember things (thus they may complain of memory problems but do well on memory tests). They cease being motivated towards their work or other tasks. Thoughts become heavy, repetitive and pedantic. Creative thinking becomes progressively more difficult, eventually becoming impossible. They become unable to select the right words to convey their meaning, and make stylistic and grammatical errors. Their ability to express themselves declines progressively.

There is a distinctive cognitive symptom of being unable to think clearly without great effort. The best description for people who have not experienced it is of a hangover without pain. People who have experienced it will recognize the term "brain fog" as entirely descriptive.

As the victim's level of intoxication waxes and wanes they go through periods of life when they do or do not dream. Dreaming may be in black and white.

Early physical symptoms include dizziness, tinnitus (ringing in the ears), insomnia, daytime drowsiness, loss of appetite, a tendency towards diarrhea - often alternating with constipation, cold hands and feet, a tendency towards sweating (some people have the opposite symptom and do not sweat at all), flushing or reddening of the skin - particularly on the face and neck. Some people blush frequently, but others do not blush at all. Asthma is a symptom of chronic mercury poisoning. Digestive disturbances are also common.

The skin becomes dry, athlete's foot and toenail fungus progress, and the insides of the ankles, particularly behind the ankle bone and a bit above it become dry, itchy, flaky and peel. This often becomes painful and annoying enough to keep the victim up at night. Even after fungus and yeast infection has been eliminated hyperkeratosis, often with papular erythema and itching are common.

The hair becomes thinner, dryer, duller, less strongly colored, slower growing, and more brittle.

The biological clock is disturbed. Waking up late and staying up late is more common than being an "early bird." Try as they might, the mercury poisoned person simply cannot control their circadian rhythm.

Victims may become photophobic and find bright light uncomfortable and unpleasant. There may be visual disturbances, including alterations in color perception leading to reduced sensitivity to the color red, or color blindness. The ability to focus on distant objects may be sporadically impaired. Peripheral vision may be reduced in the most severe cases.

The hands and feet often become distinctly cold. This can occur suddenly and is most distinctive when combined with sweating. Later in more severe poisoning they may also tingle or lose feeling.

The effects of mercury on the mouth are receding, sometimes spongy gums that bleed easily and teeth that are 'loose' in their sockets and can be wiggled very slightly. It also causes excessive salivation and unusually bad breath.

Mercury interferes with the sense of smell which becomes less acute, and later with hearing, in which perception of sounds does not diminish as notably as the patient's ability to understand and interpret them - e. g. to understand speech directed at them even though they hear it clearly.

Victims often experience discomfort that feels like a "tight band around their head." They may also experience sharp points of discomfort in their ear canals at bedtime.

Mercury also interferes with the body's ability to regulate temperature. Victims may alternate between being hot and cold when the temperature isn't changing, or have to wear more clothes than other people, or have more difficulty than other people in staying comfortable while the temperature changes. Temperature disregulation also leads to 'night sweats.'


Most practitioners try to draw out mercury with chelation -- products designed to attract mercury molecules and pull them out through urine and stool. I've always been afraid to try most of them. In the past I heard terrible stories from friends who had tried this -- a few who got permanently worse --and because I was sensitive to everything I had tried, prescription drugs and natural supplements, I declined a DMPS injection offered by a physician hoping to help. From Cutler's reports of problems with injected DMPS, I'm glad I refused. On my own, I tried a fairly safe chelator known as EDTA (not especially good for mercury, but useful for lead and calcium buildup), but was unable to tolerate the side effects.

Fortunately, Dr. Yasko offers a safe, gentle protocol. After supporting methylation and the related detoxification pathways, as discussed in earlier posts, Dr. Yasko treats her autistic kids with a group of homeopathic RNA's designed to facilitate metal excretion. She starts very slowly and measures with weekly urine tests the amount of heavy metals coming out. This way, she is able to adjust to slow or accelerate the process.

The test results and the reports of her patients (mostly parents observing their kids) indicate she is getting results. It is a slow, steady process that takes several years. You can check out the progress reports of her patients on her forum: wwww.ch3nutrigenomics.com. You will have to sign up for an account to read and to post.

Will old farts with CFS get good results too? I'm going to order Metals 1 today. Check back in a year or two for my answer. :)

If you've tried chelation or detox protocols to relieve symptoms of CFS, FM, ME, MCS, PTSD, OI, and related alphabet soup illnesses, leave a comment about your experience below.

Janis

Tuesday, April 14, 2009

IMPROVEMENT!

The results of my second methylation panel from Vitamin Diagnostics Lab came screeching through the fax this afternoon, announcing that I am making excellent progress.

All values are increased.
All but two values have come into the normal range. (Last October, before I started the nutritional protocol to support methylation, only two values were in the normal range.)

Until I figure out how to upload pictures of the files (I scanned them as .tif files and my upload attempts have failed), you can look at the spreadsheet with numbers crunched to show gains (losses) and percentage increases.
Compare VD Methyl Panels 1 and 2

Sometimes the ratio between two or more values is more important that the actual value on tests. This is the case for SAMe and SAH, listed on the test results as S-adenosylmethionine (RBC) and S-adenosylhomocysteine (RBC). SAMe acts as a methyl donor in the methylation cycle, giving its methyl group (CH3) to other molecules so they can function properly. SAH is what is left after SAMe gives away its methyl group, and too much SAH inhibits the production of SAMe in one of those nifty feedback cycles the body uses to maintain homeostasis. In the methylation cycle, SAH then gets converted to homocysteine, high levels of which have been associated with heart disease. Consequently, a ratio of SAMe to SAH above 4.5 is good.

On my first panel, my ratio was 5.72:1. Now, it has decreased to 5.67:1. This change took place before I started adding a small amount of SAMe (1/32 of a capsule) into my daily supplement regimen. Many questions arise: Is higher better, or is there an ideal ratio? Should I discontinue taking all supplemental SAMe or will taking a tiny amount support the optimization of the SAMe:SAH ratio?
Psst: If you know the answer, please write it in the comments section.

Another significant ratio is between oxidized and reduced glutathione. Reduced glutathione is available as an antioxidant. Oxidized glutathione has already been used. Since reduced glutathione binds toxic metals and protects B12, a high level of reduced to oxidized glutathione indicates improved B12 metabolism and lowering of toxic load. My first test was 11.78 to 1; my second test was 13.0 to 1.

Hurray :)

So how does this translate into real life? Do I feel any better?

I've noticed over the past few weeks that a few issues have started to resolve. My blood sugar control is better. I can go longer between meals and no longer get that "I'm-going-to-die-if-I-don't-get-food-right-now" feeling (Okay, I did have it a little on Wednesday and Sunday this week after substitute teaching two yoga classes and using up a lot more energy than I am used to putting out).

The second area in which I've improved is electrolyte balance. For more than a year, on the advice of James Wilson, N.D. in Adrenal Fatigue , I've started my days with a quart of salt water. Like many PWC's, I've had frequent and prolific urination, which has led to dehydration, and contributed to orthostatic intolerance (also called dysautonomia) and waking at night. About a month ago, the water started to taste unpleasantly salty; consequently, I eliminated it from my protocol. I rarely have dry mouth and excessive urination now.

Rich Van Konynenberg addresses these issues in his 2007 IACFS paper "Glutathione Depletion-Methylation Cycle Block: A Hypothesis for the Pathogenesis of Chronic Fatigue Syndrome"

Diabetes insipidus (excessive urination, thirst, decrease in blood volume): According to this Hypothesis, glutathione depletion inhibits production of arginine vasopressin (141), which has one disulfide bond (142), by the same biochemical mechanism by which it inhibits perforin and ACTH synthesis (102).

Low cardiac output (145): According to this Hypothesis, this occurs because depletion of reduced glutathione in the heart muscle cells lowers the rate of production of ATP, as in the skeletal muscle cells. This produces diastolic dysfunction as observed by Cheney (146, 147). Both low blood volume (see Diabetes insipidus, above), which produces low venous return, and diastolic dysfunction, which decreases filling of the left ventricle, produce low cardiac output. In addition, in some cases, as observed by Lerner et al., viral infections produce cardiomyopathy (148). According to the GD-MCB Hypothesis, this is a result of depletion of reduced glutathione and suppression of cell-mediated immunity. This is another factor that can decrease cardiac output in CFS.

Orthostatic hypotension and orthostatic tachycardia
(149): According to this Hypothesis, these occur because of low blood volume, low cardiac output and HPA axis blunting (See Diabetes insipidus, Low cardiac output, and HPA axis blunting, above.)


Notice that my reduced gluathione is just about the low normal. If I can raise it to the mid range, will more symptoms diminish? Will some completely disappear?

I hope so. I have just ordered Life-Wave glutathione and carnosine patches which are supposed to raise glutathione naturally by working on the acupuncture meridians of the body according to some kind of mysterious principle (voodoo? prayer?) that is not explained in their literature. But I'm a sucker for non-toxic remedies.

Desire: The symptoms I would like to change most are the production of energy and the ability to stand for lengths of time. I would like to be able to take walks and bike ride, to go someplace for a full day without needing a nap, to attend a party in the evening and even, someday, to travel and visit museums. David would like me to have the energy to wash the dinner dishes! The prospect is not exciting...

The second unanswered question: Why is folic acid higher when I am avoiding all supplements with folic acid?

Here are the pics, thanks to my new Spanish friend Sergio, who made them into jpgs.





As always, I welcome comments. Please click on the word comments below and let me know what you think!
Janis

Saturday, April 4, 2009

Dosing Do's and Don'ts

There has been a lot of discussion about how much or how little of a particular supplement to take. In the field of natural healing, one often hears that people don’t take enough of natural products to experience benefits. As a result, many people give up,concluding that supplements are ineffective for their condition and turn to pharmaceuticals.

But in the field of CFS/ME, things are different. This group of individuals tends to be extremely sensitive, so that amounts of food supplements large enough to have a drug effect will often imbalance and aggravate their condition. Such sensitivity frustrates practitioners, feeding into stereotype that we are malingerers or difficult patients.

The Yasko protocol, as well as the simplified version of five supplements, takes seriously the maxim of Mies Van der Rohe: “Less is more.” (Van der Rohe was an architect whose aesthetic of sleek lines and lack of decorative embellishments such as columns, volutes, cornices, led to the development of modern architecture in the twentieth century.) Through her work with autistic children, Amy Yasko came to the conclusion that very small amounts of many supplements are a better, safer way to support natural processes in the body than normal to large amounts of a few chosen supplements. And those of us with CFS exploring the methylation protocol have found her advice most apt.

The most common mistake newcomers make is to be overly enthusiastic. We plunge in with hope and gusto, taking the full amount of recommended doses or even more, convinced that, from what we've heard, we will finally resurrect the good life we used to live.

I was one of those enthusiasts who disregarded the warnings. I received my genetic testing results at the end of 2006, and after a few weeks of doing Phase 1 to lower the drain through the transulfuration pathway, I plunged into Phase 2, the methylation protocol. I ordered six bottles each of Folapro and Intrinsi B-12 so I could get my practitioners discount from Metagenics! I tried to divide the hard tablets into quarters with my pill cutter, and finding that at least half of each pill would crumble into powder, soon decided to take ½ of each pill instead of ¼. A few months later, I talked to Holly, a friend of mine whose doctor put her on a simplified version of the simplified five and learned she was taking a whole pill of each. Out went the bothersine pill cutter; into my daily supplement tray I plopped one whole Folapro and one whole Intrinsi B-12.

Some of us will reason that if a vitamin company makes xxx mcg as a standard dose then that ought to be right dose to take. Otherwise why would they recommend it? A skeptic might argue they just want to sell more pills. But much of the time, higher doses than listed on the bottle were used in research studies. The FDA makes it hard for us consumers by gagging supplement companies’ freedom to publish information on appropriate dosing for any medical condition. So while someone with a genetic inability to convert folic acid to 5 MTHF might need one Folapro a day, autistic kids and people with CFS/ME who have partial methylation blocks need only ¼ of this amount a day. Taking more than needed pushes one step in these complex interwoven cycles too fast, creating backlogs that flood or jam other steps.

My friend Holly had the experience of intense detox with such intolerable moods that she had to stop the protocol after two months. I bumbled along feeling great for months, until I crashed in October 2007 with the Worst Relapse Ever. I don’t know if my high doses of these products played any role in that crash, but I do know that every week, someone comes onto a CFS discussion groups complaining of intolerable symptoms, and has to cut back.

Many sensitive individuals work their way up to the recommended doses over a period of 1 to 2 years. They start with the tiniest amount they can pick up -- what sticks on the end of a toothpick. Or they dissolve liquid drops in a large glass of water and take a teaspoon.

I’ve been gradually able to increase my tolerance for B-12 and am now pleased to report that I am taking 3 sublingual Hydroxy B-12 tablets a day. I also introduced a tiny amount of SAMe into my protocol. Here’s how:

Using a Braun coffee grinder, I powder a 16 day supply of Folapro and Intrinsi B-12 (4 of each.) Then, having calculated that 1/8 tsp of phosphatidyl serine complex is my daily dose, I multiply 1/8 tsp x 16 days which gives me 2 tsp of this powder. I add this to the mix. (Oops, I just realized I had initially miscalcuated and was adding twice as much; the recommendation is 100 mg of PS together with the naturally occurring amounts of PC and PE. Good, I will save some money!) Four weeks ago I started adding a tiny amount of SAMe to this mix. The first time I opened a capsule, took a large pinch, and mixed it with the powder. The second time, I poured in a half capsule. And just a few days ago, when I mixed up a new batch, I added 1 ½ capsules. Two weeks from now I’ll double that amount, as long as I seem to be tolerating it well. Then I add enough of another filler (salt, sugar, peanut butter – it doesn’t matter but I prefer something granular) so that each day’s dose fills a small plastic taster spoon and the bitter taste of the supplements is masked.


I have heard of people reducing doses by pricking gel capsules in order to squeeze out a partial dose, and by freezing capsules so that can be cut in half.

What else do people do to divide the recommended supplements? What has worked for you? And what have you found unworkable? Add your comments below. Don't be shy.

Janis