Monday, December 28, 2009

Laser Energetic Detox in Florida

It's taken me more than a week to recover from my trip to Florida and find the energy to write.  I didn't expect LED (laser energetic detox) to be such an intense experience.  For those who might consider trying it, here is what it is like.  

Day 1:  
Dr. Doug Phillips had boxes and boxes of little glass vials laid out on a large table.  We talked for a few minutes. Then the testing began.  I lay down on a massage table and raised my right arm towards the ceiling.  As he held different vials against different parts of my body, he tried to push my arm down towards the table, and noted whether my arm locked or easily gave way.  Here's a picture of Dr. Doug with his vials.

This is a style of applied kinesiology (AK) known as autonomic response testing.  AK has been around in many versions ranging from Touch for Health to Contact Reflex Analysis.  It seems easy, but having tried doing it myself and often getting inconclusive readings, I know that it takes practice and skill. Dr. Doug was quite competent.  The readings, for the most part, were clear -- my arm either had no resistance whatsoever, or it held so steady that I would not have believed he was pushing if it were not for the muscle tension in his neck and shoulders.

Here's what he found:
1.  Entamoeba histolytica (an amoeba that causes dysentery and ulcerative colitis) in colon and liver
2.  Reactions to GABA and B Complex.
3.  Toxicity from mercury, aluminum (especially in the parathyroid), glutaraldehyde, benzene-xylene-toluene, barium-thallium,  sulfa and sulfur, DAPs (a class of pesticides that includes malathion and other nasty stuff), and diazepam (Valium) toxicity.

I'm pretty skeptical about muscle testing.  I figure that, if a physicist can affect an experiment in an accelerator 20 miles away just by knowing the time of the experiment, a practitioner with expectations ought to find what he is looking for.  Yes his findings were different from those he found for my friend, and most of them confirmed things I'd already determining in laboratory testings.

For example, I knew I had mercury and aluminum toxicity because these were the two toxic metals that I dumped in the highest amounts in my recent hair analysis test.  (See my post, More on metals)  I wasn't surprised by high barium after having had two barium enemas when I was in my 20's, and although thallium has never turned up on another toxicology report, its widespread use in things ranging from electronics to ant traps and pesticides makes it possible that I had exposure in the past.  Glutaraldehyde was used in the past to sterilize equipment used in colonoscopies and may have been introduced into my colon with the barium enemas or a sigmoidoscopy that I had 10 years ago.   In 2007, an organic acids test from Metametrix showed very high levels of benzene and xylene coming out.   Finally, I had reactions to sulfa antibiotics in the past, and have had trouble getting the sulfur pathways working properly in my body.   (see my past blog on the transulfuration pathways:)   Who knows where I got the DAPs, but I didn't eat organic 100% until sometime after 2000.  Since these molecules get deposited in fatty tissue (of which I have a greater supply than ever before), they remain in the body often for life.  It was interesting to discover that DAPs are associated with pervasive developmental disorder in children, for my daughter has PDD, a subset of the autism spectrum disorders.

The only thing that surprised me was my sensitivity to diazepam.  I've barely taken it, compared with clonazepam (Klonopin), that standby for sleep in ME-CFS.  When I started getting palpitations from clonazepam 3 years ago, I tried Ambien, Lunesta, and then Halcion (an old pill from the 1980's), which I tolerated for awhile until it too started giving me palpitations.  Diazepam is the only one that doesn't do that to me.

Dr. Doug told me that he had one patient who had 10 toxic things for which she needed LED.  I got second place with 9 (there were too classes of mercury, most likely because the contact lens solutions and vaccines I used in the past used Thimerosal as preservative, while I got my share of inorganic mercury from ingesting fish, seafood, and dental amalgams.

My host and I returned to her 4th floor condo overlooking Pensacola Beach and the bay.  Even though the weather was foggy, I could see the bay and the gulf from the windows of her great room.  Eventually, the weather cleared and I took pictures of the views.  

It was warm outside, compared to the 12 degree weather I'd left in Ohio, but not warm enough for the cottons and corduroys I'd brought with me.  I crawled into her BioMat Fir sauna and relaxed until bedtime.

Day 2:
My second day involved two processes.  First, Doug instructed me in how to take the herbs he was planning to order for me.  Then, he began desensitizing me to the 9 toxic items as well as to other things in my own body to which I was reacting and some of the detox compounds I would be taking (DMSA, Chlorella, and DMPS).

Desensitization was a weird experience!  It involving a lot of tapping on the acupuncture point just below the metacarpal bone of the little finger. I had to tap 33 times with one finger, then 33 times with thumb and index finger touching, then 33 times with thumb and 3rd finger touching, and so forth 33 times with 4th and 5th fingers. The side of my left hand was pretty tender by the time we finished.

After this, he tested for emotional blocks to my healing and came up with hurt from a person I loved at age 21. That was easy to figure out -- it was the year I moved to Boston with my (now ex-) husband after graduating college, and the first year I remember being disillusioned with him and my marriage. He did EMDR while I re-experienced the emotions of that year, put colored glasses over my chakras, had me do eye movements looking through colored glasses, and Emotional Freedom Technique (tapping on points on the head, chest and wrists while making affirmations). At the end, I felt weak and tired -- which was what he apparently wanted, calling it a yin state. I went home with instructions not to touch metal, be near electricity, wear anything but 100% natural fibers, or eat anything with sulfur, B vitamins, mercury, aluminum, or other heavy metals. I was left with non fortified white rice, fruit and olive oil which, in my weak, depressed state, with nothing but a pear in my belly before my 8 am appointment, left me very very unhappy.

I would not have expected 30 minutes of tapping and eye movements to have much effect, but it did. I was miserable within an hour or two, alternately wanting to cry or kill someone. I developed a terrible detox headache, mild nauseau, fatigue, and insomnia. I tried to clean myself out with activated charcoal and a water enema, but neither had a significant impact in reducing my miserable state of blocked detoxification. Dr. Doug reassured me I'd be over it in 25 hours. My host helped me get to sleep with acupuncture, crystal healing, reflexology and energy work.

Day 3
The next morning I felt much better physically but still somewhat unbalanced emotionally, so he repeated the emotional release work, this time finding the block at age 41 with my second husband. He was an abusive jerk, and it was most unpleasant to bring up those memories with EMDR. I refused to do EFT, but calmed myself with another technique that I've found works better for traumatic memories called TAT: Tapas Acupressure Technique. Then he did the first LED treatment.

He had me sit in a chair exposing my palms, the soles of my feet and my ears. This parts of the body contain acupuncture points that connected with every organ and system in the body. He first used a photon pulser with the vials of sulfa and sulfur over these areas and then went over the entire body and its energy field. A similar process was done with a red laser. Here's a picture of Doug shining the laser on my ear.

That night, I couldn't have any high sulfur foods.  As luck would have it, the refrigerator was full of high sulfur vegetables -- brussel sprouts, kale, broccoli.  I found a little lettuce and a few carrots and a piece of yellow squash.  I was allowed a small amount of chicken, which helped me get through the day without feeling deprived.  The detox was minor -- just a bit more fatigue than I normally feel.

Day 4
My last appointment was for another LED to release mercury.  This time I was given 3 capsules of DMSA, 4 capsules of chlorella, and 15 drops of cilantro tincture before the LED treatment.  The treatment was painless, and I didn't experience any unpleasant symptoms as I had after the densensitization treatment.

Dr.  Doug claims that, in 25 hours, one release the equivalent of mercury that would normally be released over 6 months of chelation.  It doesn't get everything out, but most people don't test for mercury toxicity again.

The proof is in the pudding, we say.  But what is the pudding in this case?

I reason that, if I really released 6 months worth of mercury, I should be able to tolerate DMPS chelation from my Columbus doctor without getting brain fog, spaciness, headaches, and fatigue.

I had one chelation the morning after I returned.   It was different from any chelation I'd done before because I didn't have the Aminosyn (amino acids).  Consequently, EDTA was put in the saline bag along with DMPS.  By all previous experiences, this one should have been pretty miserable.  I was cold and tired.  I had arrived home Sunday night at the terribly late hour of 11:30 PM.  By the time I had something to eat and got to sleep, it was after 1 AM.  When I got to the doctor the next morning at 10 am, hungry and a little revved up on decaf coffee, he said my kidney bladder energy was low and my brain stem was out.

Nevertheless,  I felt fine afterwards, and even in the evening, didn't have the kind of strong reactions I'd been having consistently in the past.  This could be a sign that I accomplished something worthwhile doing LED in Florida.  My next chelation will be Tuesday morning.

Meanwhile, the herbs.
Before I left Florida, my herbs for the amoeba arrived from Monastery of Herbs.  I started taking them Friday night.

It is quite a ritual.  You have to wait two hours after eating or taking any supplements or medication.  So I took my naltrexone at 9 pm and waited until 11 to begin the ritual of the herbs.

 You swallow 4 capsules of chlorella.  Then you boil water, put 12-15 drops of cilantro in a teacup, and dilute the cilantro so that the alcohol in the tincture evaporates.  You mix in cool water and watch the clock.   20 minutes later, you drink the cilantro with four capsules of the herbs.  Then you set a timer for 5 minutes, and holding a powerful magnet over a spot on the back of the skull, about 2 finger widths above the occipital ridge, try not to think about how much your arm is hurting while you wait for the timer bell to ring.

After this, you must avoid synthetic clothing and bedding, shoe soles except pure leather, wire frame glasses, electric stoves, computers, cell phones, and even sex.  In other words, you become a monk!

I found the herbs stimulating.  All Friday night, I woke every hour or two. The second night, Saturday, was worse.  I developed loose stool, gas, and cramps that kept me awake for nearly the entire night.  As  result, I stayed in bed all of Sunday morning and missed a chance to take a farewell walk on the lovely Gulf coast beach.

Since returning home, I've modified the herb ritual to make sleep a possibility.  Instead of taking them at bedtime, I take them when I awaken in the early morning around 4 or 5 am.  I prepare the cilantro dilution in advance, and set everything beside the bed, including the magnet.  I gulp down the chlorella when I first awaken.  I get up and go to the bathroom.  I get back in bed 5 minutes later and gulp down the herbs and cilantro water.  I put the magnet against the back of my head and lie down on the pillow with my eyes closed.  When I think five minutes are up, I check the clock again.  Then I go back to sleep until 9 or 10 am.

This solution works for me, but the only difficulty about taking the herbs in the morning is that I have to go 6 hours without my supplements, and keep away from metal, EMR, synthetic clothing, etc until noon.  It's a small sacrifice for a night of good sleep. And I only have 9 more days of herbs to go.....   Aaah.  After  my last day I will have a huge celebration!  I will have the freedom to wear wool pants with liners, acrylic socks, and my imitation, synthetic Uggs.

At such moments I realize how little I appreciate the freedoms I do have until I lose them.

My husband just suggested we take a walk in the fresh snow.  Several years ago I was able to do that, but at the time, I didn't appreciate it.   I lamented because I wanted to do more.  I wanted  to walk for an hour or two, take hikes in the mountains, bike, and cross country ski.  I wanted to be able to tour museums for hours as I'd done all through my professional career as an art historian, and wander again through the historic streets of Rome.

Now, after losing the ability to take even a short walk at any time of day, I'll be grateful when I recover the ability to do so.  I look forward once again to ambling down the country lanes in the evening, looking at the broad expanse of starry sky without the pollution of city lights.   I hope, when that time comes, I'll remember to appreciate it every time I'm able to do it.  It's too easy to get caught up in wanting more and more.

I still have another 7 LED treatments to do, but they turned out to be nearly twice as expensive as I'd been told on the phone by the woman who makes Dr. Doug's appointments, and I don't yet know if the expense and discomfort will be worth the effort.

Has anyone reading tried LED?  What was your experience?  Leave a comment if you've tried it.

Friday, December 25, 2009

My XMRV results

I participated in a study run by the lab, Cooperative Diagnostics, located in Greenwood SC.  They received blood samples from about 50 individuals with severe to moderate CFS/ME.  The criteria for inclusion were PEM (post exertional malaise) and being at 50% or less capacity on the Bell scale of functioning for at least six months at some time during your illness.

The lab report wrote:
The two strains of XMRV found by Lombardi et al in chronic fagieu syndrome that were sequenced had roughly 6 bases that were different from prostate cancer XMRV.  We used these strains in addition to prostate cancer strains and several strains of murine leukemia viruses (MLV) in the design of our test.  In contrast to published tests for XMRV that have been designed in highly variable DNA regions in the MLV family ... we chose to design our initial test to use the pol gene so it could detect all MLV species, including XMRV.  This means we tsted a DNA sequence that has not changed in hundreds or even thousands of years on an evolutionary scale in the MLV family.  This test would be more apt to detect XMRV than any other test used.  Therefore, we would likely have more positives than previously reported in PCR tets for CFS when XMRV is actually present.
We also used a superior test sensitivity, enabling the detection of 10 to 25 times few viruses in a blood sample than previously reported tests for XMRV.  This was proven when we were able to detect XMRV in 1 infected 22Rv1 cell from a commercially available prostate cancer cell line in a background of 2.5 ug of extracted DNA from blood. We also designed a second test with the same performance characteristics of the first.  This allowed us to also evaluate the env genes, creating an extra confirmation step in our testing.
My result was negative.

One the one hand, I'm glad.  I don't want to have a retrovirus.  Don't want to worry about passing it onto my partner.

On the other hand, it leaves me wondering where we are on this journey to find the cause of CFS/ME.  There was so much excitement when the Whittemore Peterson Institute findings came out in early October.  Since that time, many individuals have tested negative.  And while some have tested positive, it leaves us wondering if XMRV could simply be another opportunistic infection, like HHV6, or EBV, or Coxsackie, or mycoplasm, rather than a great step forward in CFS research.

Some individuals who did testing through WPI were found negative by PCR (the kind of testing I did) but positive by viral culture.  (See the link to Joey's blog,  This leaves me wondering if I would also test positive for viral culture.

My doctor says that none of the patients he has been treating for several months are coming back positive for XMRV, either through Cooperative Diagnostics, or through the VIP lab in Reno.

So upward and onward.  Lots of things are showing up wrong in the urine and serum tests I've been taking as well as the muscle testing I did in Florida.  Hope to have the energy and time soon to tell you all about it.

"Merry Christmas to all, and to all a good night."

Friday, December 11, 2009

Setbacks, hopefully temporary

It's been a difficult two weeks.  A few days after Thanksgiving, I did my regular I.V. drip of amino acids with added minerals and a small amount of DMPS.  Within a half hour I was tired and had to lie down.  By the end of the evening, I had a fever, and as the night progressed, my fever elevated.  By morning I was unable to keep liquids down and getting dehydrated as my fever climbed to 102.5

I celebrated the fact that my immune system had gotten strong enough to mount such a powerful response.  Figuring I had the flu, since I had mild upper respiratory congestion, I sucked on Sambucus lozenges (elderberry and vitamin C).

The next day (Tuesday) I had two medical appointments, one with my doctor for neural therapy, the other for the acupuncturist who often works out of his office.  Fortunately, I felt well enough to drive into Columbus, even though I still had a fever of just over 100 degrees and my mouth tasted like a sewer.  Brian, the acupuncturist, was a miracle worker.  He dispelled heat and increased yin and so forth -- theories from oriental medicine I don't understand at all.  Within 45 minutes, my fever was gone and I felt amazingly good.

The doctor then did neural therapy, remarking the whole time "how much better you are getting."  I left feeling well enough to stop at the food store to pick up a few items.    That was a mistake. By the time I walked up and down 4 aisles, I was ready to lie down.  I've undone the benefits of my treatment, I thought sadly.  But when I got home, I was a good girl and went to bed to nap for the rest of the afternoon.

I had some mild congestion on Wednesday, and took it easy.  Thursday, I drove back to Columbus feeling nearly fully recovered.  Another neural therapy session that morning, followed by another I.V.  I was cautious and declined both EDTA and DMPS, opting for a purely nutritional and restorative treatment.

By the time I got home, I had excruciating pain in my neck and spine.  Every vertebra in my back ached as well.  I spent the day in bed, observing the pain move to my kidneys and head.  By early evening, I had a high fever.

Time for an emergency call into Doc.  "You may have some bacteria in the picc line that is getting pushed into your system when you do an I.V.," he suggested.  "Can you come in tomorrow for a culture?"

The thought of driving with a high fever was mind-boggling.  I suffered through a night of high fever (again to 102.5) and nausea.  Just before daybreak, I reached my local M.D., who sent me to E.R.  Hours later, with my fever coming down, my picc line was removed and I went home to sleep.  I wasn't able to eat anything until later that evening.

So now I am without a picc line.  It is such a joy to take showers and baths without having to keep my left arm out of the water.  Aaaaah!  The whole has closed up nicely with only a tiny scar that, with Doc's homeopathic injections, ought to diminish fairly soon.

Meanwhile, I am still weak although it is a full week later.  Two days of high fever in less than a week; two days of fasting.  At least when I step on the scale the needle registers two pounds less!  That, and the freedom from the picc line, are the silver linings of these past two weeks.

The culture of my picc line was negative, but the hospital lab only took the end closest to the heart, not the end sticking out into the air, which is probably where the problem resided, so I'll never know if there was an infection.

Meanwhile, the day before the 2nd fever, the Doc had blood drawn to test a few things.  I learned (or rather got confirmation) that this detox protocol is stressing out my body.

  • my liver enzymes (AST and ALT) were elevated
  • my TSH went way up, although my free T3 went down only a tiny amount
  • my serum folate is still high
Fortunately, I am about to have a 10 day break.  I am leaving for Florida tomorrow.  Yeah!  Sun and surf.  My friend lives a block from the national seashore.  My camera is packed in my purse and ready to click.

I'll be in the panhandle, near Pensacola, and although it won't be swimming weather, it will surely be warmer than the sub zero temperatures we've been having in Ohio the past 3 days.

During my visit, I plan to meet with a practitioner who does Laser Energetic Detox.  My friend has had great results with this protocol. You can read her testimony here.  Discussion of LED

Laser energetic detox is more gentle and less invasive (and less expensive) than the neural therapy and I.V. chelation I've been doing.  My hope is that it will soothe things so that I can continue to work with Doc at a slower pace and still make consistently good progress.  

Perhaps in my next post I'll talk about L.E.D.

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]  

Monday, October 19, 2009

Neural Therapy and Naltrexone -- not for the faint of heart

"Ouch!"  My neural therapy doc really knows where the find the tender spots.  Each time I see him I get about 30 needle pricks, sometimes more.  He finds points on the hands, wrists, inner elbows, sternum, abdomen, pubis, feet, inner calves, neck and scalp, and above all, my gums.

The first time, I didn't have any reaction.  But since then (I'm going into my 5th week of treatments and have had 8 treatments so far), I feel something happen each time.  A few sessions past he injected my tonsils after asking me where I felt sick when I first got ME/CFS.  I could only remember the persistent sore throat; it was the last symptom to disappear as I made my first recovery.  That night I got a sore throat.  When I awakened in the morning it was gone.  Another session caused me to feel dizzy, exactly as I did the first 3-4 days of the virus that changed my life in May 1987.

Last Wednesday, I left his office feeling like my head was spinning.  It was almost like being high on some kind of drug --not that I've had much varied experience in this department, but I did enter college during the hippie years and wore the bell-bottom jeans, peace signs, beads, and long (ironed) hair-- but not as much fun as being high, especially since I had to drive in rush hour traffic.  The next morning, I woke up with a low fever (99.4) and immediately flashed to my first year with the illness, when my fever was constantly mildly elevated.  Hurray! I thought.  A healing crisis.

By late afternoon, I was not celebrating.  My fever had climbed to 100.6.  Every bone and muscle in my back ached.  My hips ached.  My head ached.  In hope of averting a flu (which CFS patients rarely get, and which I haven't had since the early 1980's), I started taking Sambucol elderberry extract lozenges.  My fever dipped the next morning, then climbed the next night and remained elevated at 99.5 the third morning.  I still had no other flu symptoms, nothing respiratory or gastrointestinal.

When my fever broke the third day, I was left with extreme tightness in my neck and occiput (where the back of the head meets the neck).  It was as if my head were held on by steel wires.  I remembered back after my 1994 relapse that I had this pain every day, constantly, for 2 years, unrelieved by massage therapy.

My optimistic interpretation was that all these recurrent symptoms were a perfect demonstration of the theory of homeopathic healing -- that we go backwards through the various stages of illness.  If that turns out to be the case, then in a short while, I shall burst forth like a spring flower, radiating bright yellows and reds with an abundance of energy.

My pessimistic interpretation, which flooded my brain for about 2 hours this afternoon after getting another EDTA push, was that I just contracted another bug that was "going around" and that all this traveling and expenditure of money was a big waste of time.

Fortunately, when the doctor came into the waiting room, he encouraged me.  "Feel this?" he asked, pressing on my spleen.

"Definitely tender," I answered.

"A sign your body is working hard to fight."  In addition to doing a variety of injections with homeopathics, he pulled out a bit of blood and mixed it with the homeopathic liquid in the syringe.  Then he shook it up (which in homeopathic jargon is called percussion), then he injected it into four points around my spleen.  This, he explained, is a way of making a personalized homeopathic, using whatever pathogen or antigen is circulating in my blood stream to further stimulate (and hopefully knock out) the guilty culprit.

Four hours later, at home, I feel GREAT!  My head and neck are still a bit stiff, but my temperature is holding steady at 98.5, and my energy is unusually good for the late hour after a very long day.

My fevers started before the neural therapy, about the time I raised the dose of Naltrexone to 3.0 mg and shifted to taking it at bedtime.  A few days before this bout with fever, I had increased the dose (which I've been doing gradually at about 1/4 mg a week) up to 4.5 mg.  I wondered if that could have pushed my body a bit too quickly into actively fighting some of the multiple infections with which it has been coexisting for many years.  Doc uses his own intuitive form of applied kinesiology, and determined that I'll be better off with a lower dose.  Hopefully, my healing with continue to move forward steadily.

He also put me on a daily regimen of T3, the active thyroid hormone, which he orders from a compounding pharmacy in an extended release formula.  His patients have to take it every 12 hours to keep constant blood levels.  He chose this because my temperature log had my average oral body temperature consistently below 98 degrees, even though my thyroid labs (TSH, T3 and T4) were in the normal range (not at optimal levels, as per my early September post).  The extended release T3 seems to be working!  Even on the natural thyroid extracts (Armour, Natur) that I've taken in the past, I never got my average temperatures about 97.8.  Now they are consistently above 98, and I don't feel wired.

So I'm putting my pessimism to rest.  Although it's hard NOT to think about people I've met in the office who haven't gotten well and worry that I could be one of them, what good does worrying do?  I might as well enjoy HOPE that I'll have a good experience, an experience uniquely my own, with results like the most fortunate of the doctor's patients.  I might as well imagine myself biking and skiing and traveling around Europe.  At least for now I can enjoy these fantasies, and if my happy mental state helps bring them into manifestation as the New Age gurus insist, so be it.

Sweet dreams to all.

Saturday, October 17, 2009

Testimony at HHS, CSF Advisory Committee

I am going to Washington DC to testify at the CFS Advisory Committee division of Health and Human Services.  My mother (who lives in the Maryland suburbs) also agreed to come and testify.  Here are the written testimonies that we submitted and will deliver orally on October 29.

Mom's testimony

It is very painful to have a sick child.  It’s extremely painful to have a child who has been sick for many, many years.  It has been most painful when physicians have told her,  “it is all in your head,” or “we don’t know what to do to help”.

It is very painful to have a daughter who, at the height of her career, acknowledged as an expert in her field, invited to speak at conferences all over Europe (which I sometimes attended), voted a favorite teacher by her students, had to leave her position as a tenured professor because she was unable to execute her duties.

It is most painful that, when she sometimes feels a bit better and we all have hope that she is improving, she relapses back to weakness and exhaustion and we go back to feeling dismayed and hopeless.

This pattern has been going on for twenty-three years. Let me describe the differences I see in my daughter so that you can get a sense of the devastating impact of Chronic Fatigue Syndrome.

From the time my daughter was a young girl, she was a ball of energy—always moving, always engaged in some important pursuit. She was athletic, at the top of her class, dedicated to excellence, studious, disciplined and able to think and reason critically. When she became ill, her life, and, as a result, mine and my husband’s, changed dramatically. She and her young daughter lived in the University town where she was an associate professor. While fighting a custody battle, being a single parent and working full time, I was aware that she was feeling more and more exhausted. It was extremely painful that after winning the custody battle in court, she had to relinquish custody of her child to her former husband, as she was too ill to take care of her child.

When my daughter received the diagnosis of Chronic Fatigue Syndrome, she drew on her research background immediately. Her extremely high IQ together with her experience doing in depth research about unfamiliar topics served her well. She found doctors who were touted as specialists in CFS. She traveled across the country and to other countries to work with these specialists. All to no avail. However, she did not give up. She began studying the syndrome on her own. This led to her study and subsequent certification as a doctor of naturopathy.

Her perseverance and tenacity also showed up as she explored different modalities to increase the quality of her now compromised life style. She found that yoga helped her feel better during the day. As she practiced yoga, as she tended to do, she became an expert yoga instructor. She hoped to be able to have the energy to teach yoga as it helped her feel so much better. However, after attempting to do so and getting a following quickly, she found that her poor health prevented her from having the consistency necessary to maintain an ongoing class. She now practices yoga regularly for her own well being.

So from being an active person who hiked and biked regularly, visited museums frequently, cooked gourmet meals, wrote and published articles for professional journals, wrote chapters for art history textbooks, taught a full course load at an academically rigorous liberal arts college, and raised a developmentally disabled daughter on her own, she is now an invalid, living an extremely compromised and limited life.

Over the years, I have stayed with her in her home to help out with the bare necessities of life. I am thankful that her partner is a generous and extremely helpful man, quick to take care of many of the chores. She could not have made it on her own as there were days when she could not stand for more than a few minutes let alone go to the grocery store. House chores were out of the question as was any form of exercise other than yoga.

Last year when she had another set back, she came from Ohio to live with me because she was in such a physically weakened condition that she was unable to do even the minimum to care for her self.  When she arrived and for several months following, she used my deceased husband’s wheel chair as she was unable to stand for more than a few minutes without having to lie down for hours to recuperate. She stayed for six months as I tended to her care –putting my own life on hold as I watched her withered weakness gradually transform into a bit more strength.  She found that acupuncture relieved her and helped her feel more comfortable so she went to a practitioner several times a  week.  Fortunately, I was able to help subsidize the cost of her yoga and acupuncture as none of that was covered by insurance.  I am grateful I am able to help but other parents  may not be  in such a position.

I have been and continue to be distraught. It seems unconscionable to me that we are not putting more research dollars into understanding this syndrome. Somewhere, there must be a researcher who can unlock the secrets of this malady.

Even now, when she is as well as she has ever been with this illness inside her, it breaks my heart to experience the following:
  • she needs to rest several times a day,
  • she can only make tentative plans as they may need to be broken,
  • we cannot go to a museum together here in Washington because she gets too exhausted.
  •  if she doesn’t get to her nap on time she may be negatively affected for two days afterward,
  • we can’t go out for dinner if there is too long a wait
  • if she doesn’t eat on time, I can read her weakness on her face.
  • she can’t stand in line at a check out lane if she doesn’t bring along a stool to sit on.

It is unfair and sad that I can run rings around my daughter, energy wise, although there is more than a generation between us and I have a bad back!

My testimony

I was a distinguished art historian, a Fulbright Scholar who received grants from federal agencies such as the NEA and NEH, who served on a granting board of the NEH, and who received numerous awards from private foundations. 

I came down with CFS on May 2, 1987.  In addition to the onset of classic physical symptoms of sore throat, low grade fever, dizziness, and muscle weakness, the cognitive effects of the illness were immediate.  I developed paraphasia -- pointing like an idiot at forks and bowls because the words for common objects wouldn’t come to mind -- and I found it difficult to organize ideas.  The only article I ever had rejected for publication was the one I wrote that first summer!

The neurocognitive effects of the illness continued over the years, worsening at the end of the first decade.  Math had been my top subject in high school, and my math SAT score had been 760 out of 800.  As CFS advanced, I found myself unable to do simple arithmetic.  I also lost skill in visual recognition -- skills that had made it possible for me to ace art history courses and get my doctorate.  When I finally had neurocognitive testing in 2005, at a time when my symptoms had partially abated, I scored down in the 14th percentile for visual recognition and spatial skills.  I had once been the Department Chair and could no longer organize a few files in my home.

For a long time I struggled with depression at the tremendous losses I’d suffered -- loss of career, loss of the ability to lead an active life, loss of competence in many tasks.  Eventually, working with yoga, meditation, and natural forms of medicine, I was able to make peace with my restricted life and find joy in the simple tasks of living.

My healing journey of 22 years is a modern odyssey.  I have travelled to California and New York, Mexico and the Caribbean, exploring protocols of mainstream physicians and protocols of holistic practitioners.  Some protocols helped me make substantial progress towards recovery; others caused me to worsen, often creating a ripple effect that continued to shimmer for several years.  But when I compare myself to many of the non-working afflicted on the internet forums dedicated to ME and CFS, I know that I am one of the lucky ones.  I had the research skills and the brain power to dedicate myself to studying human physiology, homeopathy, herbs, and nutritional supplements.  This knowledge has made it possible for me to control my symptoms (and control is the operative word) so that I no longer suffer with the ups and downs of bad days which torment the lives of my friends.  I’ve also had the financial resources to explore acupuncture and other healing modalities.

Because of my partial success, I’m asking the CFS Advisory Committee, to give more attention to nutritional interventions.  The pharmaceutical companies have plenty of incentives to develop drugs for CFS, given its estimated prevalence between one to four million Americans.  We need YOU to undertake the kind of research that private companies have no incentive to undertake. There is serious and enthusiastic discussion on internet forums about several protocols which have alleviated symptoms in numerous individuals with CFS. Some individuals have improved substantially enough to return to the work force.  Others have reduced suffering, doctor’s visits, complications, and costs.  Here is a brief list:

1.  Vitamin B-12.  People report success taking only the active forms, adenosylcobalamin and methylcobalamin, while avoiding the inactive forms of cyanocobalamin and hydroxocobalamin.  We need more research as to why cerebrospinal fluid shows low B-12 while serum B-12 levels are normal, when MMA is the most accurate way to measure functional need, or whether the new tests of transcobalamin are more accurate.

 2.  NO/ONOO.  People report success taking specific antioxidant supplements designed to scavenge peroxynitrate according to the theory advanced by Dr. Martin Pall.  His theory and protocol need further clinical testing.

 3.  Methylation and reduced glutathione.  Dr.s Van Konynenberg and Nathan did a preliminary study of 60 individuals with CFS whose energy improved substantially after less than a year on their protocol of unusual supplements.  Instead of using synthetic folic acid, they directly employ substances active in the folate cycle such as 5-methyltetrahydrofolate and folinic acids.  They have documented through serum testing the normalization of reduced glutathione, SAMe, SAH, adenosine, and various active folates.  Some study participants recovered sufficiently to return to the work force.

 4.  Amino acids therapies, particularly intravenous administration of amino acids, has helped those who test low in serum and urinary amino acids despite adequate dietary intake.

 5.  All people with CFS have abnormalities in Kreb’s cycle metabolites. Through studies or increased monitoring of organic acid testing -- available through US laboratories such as Genova, Great Plains, and Metametrix -- we might be able to discover patterns revealing how this illness actually decreases the capacity to make adequate ATP.  That could lead to interventions that increase energy substantially enough to improve quality of life and return many individuals to the work force.

 6.  Dr. Sarah Myhill’s study of mitochondrial dysfunction and the protocol she uses to reverse it deserves further study in the U.S.

 7.  To control costs, we need to stop turning natural nutritional products into drugs just because a pharmaceutical company wants to market it.  This has happened in the past year with BH4 (tetrahydrobiopterin) and a pyridoxine, a natural, active form of Vitamin B6.   Restriction of products that have been available for generations is contrary to the principles of our democracy and free market system.  

 Even if XMVR turns out to be the cause of this devastating illness, we still need to understand how to help long-term sufferers repair and restore their damaged bodies.  My friends and I hope the government will be open to studies on non-toxic products that have the potential to support the immune system.  We call upon the government to look into the development of

  •  peptides that disable viral penetration into the cell, such as the one Dr. Candace Pert of Georgetown University discovered for the AIDS virus
  •  transfer factors and other markers of healthy immune function that could explain why exposed members of the healthy population are able to harbor XMVR without becoming symptomatic.

Finally, it is crucially important to revise the case definition of CFS.  The Canadian definition of M.E. is a more accurate description of our symptoms.  If XMVR doesn’t turns out to be the marker we seek, we need to look at functional markers including organic acids, amino acids,  and methylation markers in order to diagnosis new cases before irreparable oxidative damage occurs from overexertion.