Friday, November 27, 2009

More on metals

Very signficant news today!  My hair analysis results arrived and showed that I am dumping lots of metals -- more than I've ever done in 10 years of testing!  I have bars in the high end of green (e.g. the upper limit of 'normal) for Aluminum and Arsenic.  Mercury moves into the yellow area (the warning zone)  Titianium is pretty high, and I haven't even gotten my titanium dental implants yet!  Plus, several other metals are being eliminated in significant amounts, such as antimony, lead, nickel, silver, and tin.   

No wonder I've been feeling awful!  My doctor said early in my treatment that he wanted to shake things up.  Well,  he succeeded in getting me into the blender.

The pattern of nutritional minerals at the bottom of my hair analysis report is also significant.  Sodium and potassium are quite low, which is indicative of adrenal stress and emotional stress.  The two go hand in hand, in that when the adrenals are stressed, every little molehill is experienced as a mountain.  

On many post-chelation days when I would awaken at 4 am and be unable to return to sleep, my mind would start galloping down the path of despair, and although I tried to hold the reigns firmly, I could never get control of my wayward mind until sunlight streamed in through the windows.  

Perhaps emotional volatility has also been tweaked by a loss of lithium.  Lithium plays an important role in inhibiting the excitability of neurons.  Apparently it does this by inhibiting the conversion of phosphorylated inositol to free inositol.  Here's what I learned about inositol from the site, Bi-polar  
Inositol is a naturally occurring isomer of glucose It is classified as a member of the vitamin B complex. Sometimes people refer to it as B8, but it is not really a vitamin itself.

Inositol is a natural chemical compound present in the human body and in certain ordinay foods.It is direct precursor of phospholipids which are a major component of cellular membranes.
What does this mean?
Phospholipids are fat-soluble, naturally-occurring molecules that help make up our cellular structure. Both inositol and the phospholipids play a major role in signal transmission for many neurotransmitters and hormones. There is growing evidence that lithium and fish oil may also exert their beneficial effects by regulating these same signal transmissions.
Inositol is important for regulating serotonin and insulin, and breaking down fats and reducing blood cholesterol.

Lithium is widely known as a drug used to treat bipolar disorder, but small amounts of lithium in the form of lithium orotate are used by natural health practitioners to support mood proper lithium function.  I am thinking of adding it to the arsenal of supplements in my overstuffed pill box.

In the meantime, my huge metal dump got me thinking about all the years that I took hundreds of expensive oral chelators because I was fearful of taking DMPS.  I told my story in an October 2009 post, "Are Metals Making Us Sick?"    Here's the rest of the story.

After leaving Dr. M's office, and deciding that I wouldn't go back, I immersed myself in understanding the theory of how hair analysis reveals information about the health of the body. I had recently begun to work on my Naturopathic medicine degree, not because I longed to be a health practitioner, but because I didn't have a health practitioner in the area who I felt I could trust to offer solutions to the many abnormal test results that were turning up now that I had discovered saliva hormones, comprehensive digestive stool analysis, amino acids and hair mineral analysis. With a Ph.D. in hand, I was able to get accounts at many labs and supplement companies. All provided abundant educational information -- lectures on cassette tapes, informational pamphlets, newsletters, and books -- far more detailed than the standard information on herbs, homeopathy and colonics that characterize basic naturopathic medicine programs.

I started with Analytical Research Labs, a wonderful company in Arizona that provides detailed analytical reports for every hair analysis they perform. From these reports, as well as their pamphlets and tapes, I learned to pay attention to the pattern of nutritional minerals as indicators of endocrine health. I also learned that when individuals have the pattern of being a slow oxidizer, that is when metabolic energy is low, when adrenals and thyroid activity as low -- as it was for me -- then the body rarely dumps heavy metals. Consequently, the low test results don't indicate a lack of tissue stores of mercury, lead, arsenic, and so forth, but an inability of the body to excrete those metals.

ARL recommended taking high doses of nutritional minerals on the theory that many of these compete with toxic metals for receptor sites. For example, lead displaces calcium So by taking large doses of calcium, the reasoning is that some of this calcium may displace molecules of lead. I was a diligent student, but I am sorry to report that, in a body as weak and unbalanced as mine, I saw very little lead being dumped and almost no mercury.

I also had an account with Viotron, a distributor of Biotics Research nutritional products. From their extensive lectures and books, I learned about Porphyra-Zyme, a chelator made from peas which reportedly helps with heavy metal detox. Since I often ate peas and never had a problem with them, I was willing to take a chance. I worked my way up to 12 tablets a day and did this for over six months. I never saw any heavy metal dumps on my hair tests.

Next I learned about Poly-MVA, a product developed for cancer which combines absorbable alpha lipoic acid (ALA) with palladium (Pd). The inventor assured me (in personal conversation) that the palladium was tightly bound to the ALA like the cobalt molecule is bound in B12. It improved my energy tremendously, for ALA supports mitochondrial activity. The first few days I felt euphoric. My energy improved slowly, but after a few months, I plateaued. Although I continued to take it for six months, I stopped because of the high expense. A year later I gave patient testimony at a conference on my experience with Poly-MVA, and having received several bottles as compensation, began taking it again, but failed to notice any difference in my energy levels. Nor did hair analysis reveal any detox of heavy metals. On the contrary, I found high levels of palladium in my hair two years after stopping the product, indicating that I had stored palladium in my tissues. These results spurred a more aggressive approach to oral chelation.

I started with Modifilan, a brown seaweed rich in minerals that helps to bind loose metals in the gut. I figures since seaweeds are eaten as food in the Orient, I could probably tolerate this. And I did.

Next I added in chlorella, something I had started with Dr. Cousens in 2000 when he put me on a raw juice fast and vegan raw foods diet that ruined all the gains I had made over the previous seven years. Still reeling from the crash after the fast -- a crash that brought with it severe POTS (postural orthostatic tachycardia syndrome) -- I sought out information on diets to support detox that were evidence based. Patricia Kane's work made sense to me after I read her book,
Detoxx. I resumed the practice of taking lots of nutritional minerals, using Kane's liquid ionic minerals (sold through E-Lyte), and I switched to the chlorella tablets she advocates as safe because they are raised in test tubes in Germany, free from ciguatera and other algal toxins.

About a year later, a friend visited me who was taking NDF Plus (an expensive product by Bioray in 1 oz dropper bottles). After years of minerals, seaweeds, and algaes, NDF amazed me: a few drops of this stuff on my tongue made my brain start to dance! For the first time ever, I felt as if something were happening. I ordered some and worked up to the point where I could tolerate a dropperful without symptoms.

In 2005, I learned about Eniva's cell ready minerals, and got good results taking their product known as Vibe. I would feel more energy, and less ravenously hungry if I took a second dose before dinner. I continued taking Vibe until I started the Simplified Five protocol, as Rich asked me to eliminate it due to its folic acid content (400 mcg).
I also tried a number of other detox products, including several with EDTA. But I never stuck with them; once I started to feel funny from them, I would stop taking them.

About five years into my various oral chelation protocols, I started to dump mercury and lead in low amounts. I increased my chelation protocols, and finally by 2007, my hair analyses and my urinary toxic elements showed very low levels of heavy metals and balanced mineral transport, which continued through testing in 2008 and 2009.  

When my new doctor wanted to do a metals challenge test, and promised to use a very low dose, I agreed thinking I no longer had any metals to excrete.  I would end up being quite surprised!

Even when my challenge test (with 150 mg EDTA rather than the 'normal' dose of 750 mg) showed a small amount of lead, mercury and antimony, I did not expect to discover hidden treasures.

When I started to have difficulties, as I described in some earlier posts in October and November, the doctor explained that what I was experiencing, 6 - 24 hours post chelation, was the body rearranging itself after dumping metals. He reassured me that everyone went through it, and that as I got healthier, it would become easier. I had a hard time trusting him. I kept imagining I was miserable because the EDTA was pulling out essential nutritional minerals and making me deficient. Now, except for my very low lithium, the hair analysis has put my worried mind to rest.

It is good to get confirmation. Now if only it could be a less tortuous process.... No wonder why people who can just take drugs to suppress symptoms! Natural healing is not an easy path.

Here are the test results for anyone curious:

Tuesday, November 24, 2009

Emotional roller coaster of chelation

I used to love roller coasters.  The slow chug up the hill, packed with anticipation, the teetering pause at the top, the rapid plunge down.  I loved them until my daughter was 3 years old, when we rode a little roller coaster that had been set up in the parking lot in front of the local supermarket.  I'd gotten in the habit of riding with a seat belt and shoulder strap and buckling my toddler into a car seat; these precautions made me feel safe.  But in the open roller coaster, with only a steel restraining bar, I struggled to keep myself from falling sideways while keeping her from slipping under the bar.  Still, with legs too short to touch the floor, she slid forward.  With mental flashes of my darling lying comatose and bleeding on the ground, I screamed in utter terror for the operator to stop the ride.  I scooped her in my arms and, with wobbly legs, descended from the rickety platform onto solid ground.

My daughter grew up to love roller coasters.  But only once did I oblige her request to join the fun.  That was at Cedar Point's new Magnum, a 70 mph ride with, you guessed it, a seat belt and a shoulder strap.  By that time I'd read too many newspaper accounts of amusement park accidents to believe that anyone was completely safe.  But I survived with the help of vigorous screams which, blessedly, released many other tensions of caring for a tween with PDD (on the autism spectrum.)

My journey through neural therapy and chelation feels like a roller coaster ride.

I have heightened anticipation  whenever I notice that I've done some little thing that I hadn't done for awhile.  For example, Oct 30 in NYC I talked with a friend for four hours while we sipped tea in Central Park, road the bus, wandered around and ate dinner.  Two months ago I didn't have enough energy to talk to a friend for an hour without getting a sore throat.   Last week I had the energy to bake two quiches and a few hours later, make an apple cobbler.  A few nights ago, I spent over 50 minutes cleaning up in the kitchen before I felt the first tiny sign of orthostatic intolerance (I usually get a sensation of fullness and ache in my feet).  In my vague memory, even 15 minutes on my feet was previously too much.

But after teetering at my edge, using up whatever energy I have to use, I begin to feel symptomatic.  That's when I fall into the pit of doubt.  During these periods I am just as tired and just as symptomatic as ever before.  I feel like I'm a stationery bike going nowhere.  That's when I begin to think that all the time and money I'm spending to heal myself is pointless, because waah waah waah, I'll never get well, I'm a hopeless case, the doctor doesn't understand what's happening in my body, yaddah yaddah.

Not a pleasant place to be.  But is it any less real than the pleasant optimism of recovery?

I've been asking myself recently if my improvements are just a placebo effect to justify the complete transformation of my life.  I miss the time I used to spend writing, but with so much time spent in the car or at home hooked to i.v.'s, and with the unpredictable symptoms and side effects of treatments, I haven't been able to motivate myself.  It seems as if the time spent at home is just filler until I have to go back to the doctor's office and wait to see what new surprises will unfold.

My reaction to the chelating agents had been most unpredictable.  The EDTA which I was taking 2x a week was giving me severe reactions.  I wrote, on Amy Yasko's forum: (
I need guidance on controlling the symptoms I'm getting from EDTA chelation which are: iinability to sleep, and now (this time only) headache, constipation, anxiety, sore throat.) I'm frightened that, in the process of pulling out the undesirable things, it's messing up my healthy nutritional mineral balance. 
I got lots of good answers, ranging from adrenal stress to supporting gaba/glutamate balance.  I realized that the panic I was experiencing was typical of kidney meridian stress, for the emotion associated with the kidneys is fear.  My doctor said my reactions were fairly typical -- that people tend to do alright with the actual chelation, but then 6 to 12 hours afterwards, the body is rearranging everything to replace the missing metals with healthy minerals and to clean up oxidative damage.  That rearranging is what causes such terrible stress.

I felt calm and reassured in his office, but the next chelation still pushed me into panic, so he's allowed me to take a break from the calcium EDTA.  In the meantime, I've continued on DMPS, and had nothing but a bit of brainfog for the next day, until my treatment last Friday.

I'd been feeling like I had a mild cold, and probably should have put off the treatment, but we had weekend plans I didn't want to change.  During the i.v. drip, I had more problems than usual and had to slow down the pace.  Instead of finishing at 9:30 pm, I was still sitting in bed with fluid in the I.V. bag at 1 am.  I rushed to end because I was incredibly tired, made up for the late start by sleeping until 10 am.  But I was dizzy and brain-fogged the next morning.  To clear up my symptoms, I did a coffee enema and took a triple dose of ALA (as Andrew Cutler suggests, one pill every three hours).  These interventions made me feel terrific all day.  But they turned out to be a lousy solution because....

I was too charged up at night to sleep soundly.  The next day we had concert tickets and dinner plans.  Somehow I barreled through without collapsing.  I even managed to sleep without pills for a solid 11 1/2 hours!-- another sure sign I am getting better.  Still, I was dragging and exhausted nearly all day yesterday and slept poorly again last night (only 4 hours).

I'm ready for the boring predictability of the stationery bike!  I'm ready to sit home and write, read, and do yoga.  I'm ready to get my life back.

Mike, my cheerleader, says to hang in.  That the error he made, that most of us make, is stopping in the middle of detox, instead of persisting until our cells are clean enough to function normally.  I hope he's right!

I have promised myself that next time, even if I am miserable the day after an i.v., I will not do anything or take anything like ALA or coffee.  I will try to see how long the brain fog and spaciness lasts, and indulge myself reading novels and watching films if I can't do anything else.

Doc feels certain I am making good progress and doesn't know an easier way.    He says he's explored all kinds of oral chelation, but when he 'tests' someone with i.v. EDTA or DMPS, they always expel a bunch of metals.

Dr. Amy Yasko's methylation protocol has produced amazing detox in autistic kids, as their parents have documented with weekly or biweekly urine tests. (Read the reports on her forum,  But even this detox isn't painless.  From reading what parents report, detox always leads to an exacerbation of symptoms.

I was never willing to spend $50 every week for spot urinary toxic metal tests to see if I was getting anywhere.  And I reason now, that if I were to continue with Yasko's program alone, it could easily take me 20 or 30 years to detox fully, considering that it takes 5- 8 year old kids 2-3 years.

It feels good to realize that I'm not being impatient, just realistic.  I've lost two decades and hope to restore my health to a point where I can become active enough to travel and exercise.  At my age, I don't have unlimited time.  I hope I can remember this next time a post-chelation panic sets in.

Happy Thanksgiving to all!  

Monday, November 9, 2009

XMRV after CSFAC, and pearls of wisdom.

The CSFAC (Chronic fatigue syndrome adivsory committee) meeting was fun!  I met people whose pictures I'd seen and some new people too.  I was pleased that Dan Peterson came to speak about the new finding of the Whittemore-Peterson Institute:  they are finding a new retrovirus called XMRV in over 95% of people with CFS and Fibromyalgia.   Very little is known about this retrovirus as it was only discovered about 2 years ago, where it was associated with certain advanced prostate cancers.  The strain in people with ME/CFS seems to be slightly different genetically from the prostate cancer strain.  The working hypothesis is that the virus infects various immune system cells such as B cells, T cells, and NK cells, weakening their ability to mount an effective response to infections.  Consequently, people with ME/CFS end up with multiple chronic infections such as HHV6, Coksackie virus, Epstein Barr Virus, Lyme, Enteroviruses, and so forth.  

Although retroviruses are contagious (one of their patients got it from a blood transfusion -- they have before and after samples to prove it), no one knows how this one is transmitted.  The researchers did, however, extract plasma from blood and use it to infect cells in vitro indicating that virus particles (Peterson called them virions) are definitely infectious when they get into blood.  

The Whittemore-Peterson Institute has recently partnered with VIP Diagnostics to offer XMRV testing.  I contacted the lab and learned that two tests are offered:  one checks for the presence of the virus by PCR.  The other cultures the blood to see if there is a latent or an active viral infection.  I spoke with the lab and learned that it's best to get both tests done.  If you test positive for XMRV and have symptoms of ME/CFS, you'll be able to say you have XAND:  XMRV Associated Neuro-immune Disease.

I have a test kit on order. 

David is terrified every time he feels tired that he's catching it from me, poor guy.  According to the research study published in Science, 3.7% of the population carries the retrovirus without symptoms of disease.

After Peterson answered questions, John Coffin, a retrovirologist from Tufts University, spoke to the committee, to [put the WPI findings into the broader context of retrovirology.  He seemed to emphasize how much we don't know, and he seemed skeptical that the XMRV-CFS connection would turn out to be causative.   Still, I was pleased to hear  that retrovirologists all over the world are interested now in studying XMRV because it is one of only 3 retroviruses that infect humans.  Although we've lost nearly 20 years (since government research funding closed the door down on viral CFS etiology studies in 1993), so much research in the last two decades on HIV will make it easier for retrovirologists to make rapid progress in discovering how XMRV spreads and causes disease.

There was much excitement about XMRV.  Many patients wore lime-green tee shirts stating FUND WPI.  Every speaker lauded their accomplishment.  Everyone criticize the government for spending sums 20 times higher than WPI without accomplishing anything useful in 20 years.  Not a single person spoke up in favor of the two 'therapies' the CDC currently recommended for CFS:  graded exercise and cognitive behavioral therapy.  

Anne Whittemore, the philanthropist funding the WPI research, who is the mother of a young adult with ME/CFS, got a standing ovation after testifying.  Many questions for Peterson and Coffin revealed a high level of excitement that the WPI findings will prove to be the major breakthrough we've all been waiting for.

Mercifully, the villain in our story, Bill Reeves, was physically absent.  He was criticized hundreds of times for every aspect of his leadership.  People railed into him for publicly criticizing the WPI study in an article in the NY Times.  Hostility was great towards his 2005 redefinition of CFS as a 'fatigue syndrome' without any physical markers.  Several speakers suggested we christen it "Reeves syndrome" and go back to the name "myalgic encephalomyelitis" (ME) which was used for the neuro-endocrine-immune disease before the CDC ever went out to Lake Tahoe to investigate. Patients unabashedly called for his dismissal.  The physicians and researchers who spoke were more polite, but their dislike of his leadership was palpable.

I left feeling that CSFAC was on our side (the side of patients, that is) and that their recommendations were not being implemented by the Department of Health and Human Services or the CDC.     

During the afternoon session, I had a wonderful nap at my mother's house, which ended my self-pity at being unable to stay for the entire day.  

I came home with a huge pile of papers -- the printed testimonies of everyone who spoke and many who were unable to speak for lack of time.  Here are some of the gems of public testimony:

\Basically, they created a new, unveritifed definition which definied a new, much larger data set, but they still used the name, CFS... This is outrageous!  This isn't science -- it's a shell game."                     [Joan Grobstein, MD]

"I have treated more than 2,000 AIDS and CFS patients in my career, and the CFS patients are more sick and more disabled every single day than my AIDS patients are, except for the last two months of life!"
                                                                                                            [Mark Loveless, MD] 

"My fellow practitioners are frustrated by an illness that is complicated, has no visible signs, no diagnostic marker....At the 2009 IACFS Meetings in Reno, at least six new potential markers were suggested [for ME/CFS], none of which are being explored by the CDC....And while the CDC is busy with epidemiology and sociological studies that have little potential for improving the lifestyle of CFS patients, there are a half dozen reasonable theories that could be tested including the RNaseL Theory, the Nitrous Oxide Theory, the Hydrogen Sulfide Theory, and Glutathione Depletion."                                                           [Charles Lapp, MD] 

"...a simple internet search reveals that for 2009, NIH was allocated $681 million for obesity, $412 million for depression, $252 million for asthma, $62 million for Attention Deficit Disorcer, $40 million for West Nile virus - compared to a mere $4 million for CFS, with a reduction to $3 million estimated for 2010.  It is a cause for despair that psoriasis ($8 million) and hay fever ($6 million) received double the funding made available for CFS research."
                                                                                                            [Anonymous ME/CFS patient] 

"How could our government and the governments of other nations dismiss and then ignore millions who suffered from "an infectious disease of the brain, as Hilary Koprowski of the Wistar Institute called [ME/CFS] publicly in 1992.  Koprowski was an expert in neurological diseases -- he knew one when he saw one."       [quoted by a patient from Hillary Johnson's blog, Inside the Labyrinth]                                                    

"The fact that the CDC recommends no tests or treatments other than GET... and CBT.. has had financial repercussions for me.  And for everyone else I know with this disease.  What it meant to me is that my long-term disability insurance would not medicines...are not recognized by Medicare as medically necessary."                                                                                                  [Cathleen Connor, patient]

"Continuing to use the term CFS is analogous to calling diabetes a minor sugar sensitivity, cancer, a few fast growing cells, or MS, a little balance problem.  Obviously, such names would be ludicrous in their failure to portray anything close to a complete picture of these illnesses. Yet that is exactly what has been done by giving us the name CFS."                                                                                [Tammie Page, patient]

"If the American public knew the true facts of CFS/ME -- that it affects over a million people in the U.S. and the numbers are continuing to climb, that it costs the US taxpayers $17-25 billion in medical expenses and lost productivity each year, that it's likely to be infectious at some point in time, that there are very few physicians trained to diagnose or treat CFS/ME patients, that the effects are so devastating that people not only lose their physical and cognitive abilities but also lose their jobs, homes, and in many cases, their family and friends -- people would be demonstrating in the streets..."                                               [Pat Sonnett, patient]

"When I recommend MRI and immune testing with immunoglobulin levels, T and B cell evaluation, cytokines, and viral titers, I am told that those are esoteric tests and why would I want to order them...  It is a rare medical student who has heard of CFS."                                                                       [Janet Smith, MD, patient]