PSPInformation considers the following message originally posted on the PSPInformation Yahoo group to be of such sufficient importance that we choose to also post it on this website.
The laboratory processing the tests was Genova Diagnostic in Asheville, NC. Their contact information is as follows:
Genova Diagnostics
63 Zillicoa St.
Asheville NC 28801
(828) 253-0621
Sales and client services
8:00AM - 6:30 pm EST M-F
(800) 522-4722
(828) 252-9303
http://www.gdx.net/home/
Feb. 2008 — I don't want to give anyone false hopes, bit I do want to point out that heavy metal poisoning (lead, mercury, cadmium, etc.) produces a lot of quite varied neurological symptoms, and it is not expensive to test for, and there is a treatment available for it.
In the summer of 2001, I started experiencing symptoms that seemed similar, though not exactly, to my motherinlaw's PSP — handwriting unmanageable (but not tiny) with extra and misplaced letters, frequent 'catch' in my throat causing me to cough a lot, instability, bumping into door jambs, weakness, not being able to keep my car straight on the road and veering to the shoulder, bad driving decisions, terrible memory, bad arithmetic, and a strong metal taste in my mouth, especially after eating vinaigrette-type foods. After an awful summer (my job is most hectic in summer), I was able to do some research online, and with the help of a book titled "Why Can't I Remember?" by Pavel Yutsis MD (several currently available at http://www.half.com for $2-$3 plus $4 shipping), I determined that mercury poisoning was a prime suspect.
If you read up on mercury, you will see that a certain amount of it is eliminated by the body naturally, but it all depends on how much you get, and how much damage it does before your system can't handle it. As contaminated fish becomes more common, you'll probably see a lot more in the news about mercury poisoning. But there are other metals that can also cause neurological problems — lead, of course, and others used in industry.
Long story short, I was incredibly lucky to find a local doctor (osteopath) who does intravenous chelation. They are not easy to find in the northeast, but things are improving. I started treatments, had my dental fillings replaced, had more treatments, and now I feel I am 95% back to normal. Apparently I had just gotten a large amount of mercury circulating in my body due to grinding my mercury-filled teeth, eating too much tuna, eating the tomalley when I had lobster (we live in Maine!). I do take about 20 various supplements, stiill trying to keep my mental function sharp and bring back my short term memory.
My doctor and I started the investigation by taking a hair element test. A hair test is just what it sounds like — you cut a little bit of hair and send it to a lab. They tell you how much hair and where to cut it from. They return an analysis of toxic elements. It's non-invasive, not that expensive ($100?). The testing lab I used has expanded its website. You can read about their hair test at https://www.gdx.net/home/assessments/elemental/exposure/index.html. A doctor has to order the kit. Your hair needs to be natural -- not dyed, permed, etc. — so you may have to wait for it to grow out.
Back to the story: About 3 years later, a usually very energetic and productive friend of mine was experiencing similar symptoms. I eventually managed to convince him to get a hair test. Turned out he has cadmium poisoning from working as a welder for many years, then in an automobile painting shop. He started treatment and is now feeling much better.
Recently, he passed his good news onto two friends who have been diagnosed with ALS — one recently and one long-term. He tells me they have both started chelation treatment, and the one with recent dx is improving significantly, especially in his speech. The other is progressing somewhat, but more slowly.
As with PSP, it takes a long, constant effort to get doctors to routinely consider the possibility of heavy metal poisoning. It isn't something they think about in the general course of their day, and they tend to try to fix each symptom with a different drug, instead of looking for the underlying cause. My friend and I were lucky in that we also shared a gp doctor, so his experience with us has made him generally more aware of this possibility when patients have a lot of neurological symptoms.
Chelation is not a difficult treatment. You sit in a chair and chat or read for 3-4 hours while you have an IV. The IV contains a chemical that bonds to the heavy metal in your body and helps you eliminate it. You don't feel great the next day, but no big deal. A nurse can set up an IV, so it can possibly be done at home.
I was having two treatments a week, one with the chemical — at first EDTA (yes, like they use to preserve cereals and crackers — it's also used to clear the arteries of plaque, to avoid having a bypass operation) and later, after my fillings were removed, DMPS), and then a follow-up IV of vitamins the next day, to replace the ones that got removed along with the mercury.
My treatments were about $125 each, and my health insurance coverered half of it. In my opinion, it is worth looking into, and any amount of poison that can be cleared from the body has to improve one's function, even if there is still an underlying condition such as PSP that doesn't have a cure.
There is an oral chelation medication available, and naturally it costs less than IV's. I don't know anything about it. Ask a doctor who knows about chelation in general.
Hope this is helpful to someone! Don't get over-optimistic, but just consider it as a possibility.
Throughout the last century, advances in industrialization, manufacturing, and technology have resulted in ever-increasing amounts of toxic elements being released into the environment. From air pollution, tooth fillings, skin creams, and paint dyes, to batteries, seafood, vegetables, tap water, and dietary supplements, toxic exposure now commonly occurs through a multitude of diverse vectors. Most of these elements remain in the environment long after the original exposure source is gone.
Over a lifetime, these toxic elements may accumulate inside the human body in tissue such as fat and bone, being broken down and eliminated very slowly. Eventually, this increasing toxic burden can trigger a variety of physical and cognitive disorders, including depression, anxiety, memory loss, and fatigue. Even at relatively low levels, toxic elements have the destructive capability to damage nerves and tissue; strong clinical evidence points to their potential role in early neurodevelopment disorders, such as Attention-Deficit Hyperactivity Disorder, as well as in neurodegenerative conditions of aging such as Parkinson's and Alzheimer's disease. Heart disease, impaired kidney function, respiratory illness, weakened immune function, gastrointestinal dysfunction, and increased cancer risk have also been linked to chronic toxic element exposure.
The Toxic Element Exposure Profile assesses levels of 22 potentially damaging elements using a hair sample. A substantial body of scientific literature supports hair analysis as an accurate, reliable gauge of long-term toxic exposure. Because hair follicles are exposed to the blood supply during growth, element concentrations in hair reflect concentration in other body tissues. Should levels be elevated, a variety of clinical and lifestyle interventions can be implemented to reduce toxic burden; follow-up hair testing provides a good indication of long-term treatment effectiveness (after 3-4 months).
Although everyone is potentially exposed to toxic elements, this comprehensive profile is particularly relevant for individuals employed in high risk occupations, including welding, metal working, mining, battery production, aerospace work, optical fiber and lighting manufacturing, and various other high technology and metal manufacturing industries. Because of their unique physiologies, children and other adults (especially post-menopausal women) are also much more vulnerable to the negative health effects of toxic element exposure.
