Wednesday, August 26, 2009

Oops! I am increasing the variables

Last week I promised myself I'd make a change.  One change.  Instead of taking huge amounts of hydroxo B12, I'd substitute adenosyl B12, sold as Dibencozide through Source Naturals.  (I bought it from Holistic Heal, Dr. Amy Yasko's company). I decided to do this because a guy on the Phoenix Rising ME-CFS forum has had fabulous results with adenosyl and methyl B12.  But while methyl B12 has potential problems for me, adenosyl does not.

Adenosyl B12 is the form that gets into muscle cells.  It's the main form used in the Kreb's cycle, the energy cycle in the mitochondria that produces ATP.  I suspect mine is low.  My recent organic acid test from Genovations showed amounts of several Kreb's cycle acids were too low to measure!  Then, I read that high MMA on this test indicates a need for adenosyl B12.  So into my morning pill box it goes.

I also decided to increase methyl B12.  Even though there have been discussions about the risks of taking methyl B12 for people who have mercury stored in the brain, I have decided to take the risk.  I've improved enough on this protocol that I can handle more methyl donors.  I've worked up to 1/2 of a SAMe a day from back in January, when I went bonkers trying to take it.   I read more about it in Yasko's voluminous posts and books.  Although I have a genetic polymorphism that limits my ability to handle methyl donors known as COMT++ (catechol methyl transferase),  I learned that as my methylation cycle improves, I'll be able to handle more methyl donors.  Methyl B-12, as you can tell from it's name, has a methyl group which it can donate, if needed, to another molecule.

Both these 'active' forms of B12 fit into the protocol that Freddd posted on the Phoenix Rising site.  So far so good.

Here's the catch:  I'm not willing to stop the other type of B-12.  I cut back my Perque OH-B12 lozenges to one a day (I'd been up to 4 a day).  I cut back a little on the injectable OH-B12.  But I want to continue taking it because Rich Van Konynenberg says that, by combining OH B12 with reduced glutathione, we make glutathionylcobalamine, which is another active form of B12.  The glutathione protects the B12 from oxidation, which allows it to work effectively in the cells.  Plus, I have to admit that after investing nearly $100 in sterile vials of the stuff, I'm not ready to see it go to waste  :) :) sheepish)

The other catch is that I won't be able to tell if it's making a difference unless I get extremely sick or instantly well because....
                      I started low dose Naltrexone.

Like a typical brain-fogged space-cadet, I forgot all about the Naltrexone when I wrote a few days ago.  I started it five days ago.  I'm up to 2.25 mg a day.  So far so good.

Low dose naltrexone is being used by others with ME-CFS, as well as by individuals with MS and HIV.  Although developed to help heroine addicts break their addictions, at a dose of 50 mg, someone somewhere discovered that it has positive effects at a very low dose.  Among these effects are reducing inflammatory cytokines (usually high in ME-CFS), increasing natural killer cells (low in ME-CFS), and generally helping the immune system get back into balance.   To read more, go to www.lowdosenaltrexone.org

Several people I know have reported feeling more energetic and more clear-headed after taking if for a week or two. The main side effect is insomnia.  I haven't had that any worse than normal.  Apparently it goes away in 2-3 weeks.  The people I know who gave up on it did so because they couldn't sleep.

On top of that (or maybe on the bottom of that -- because it sent me onto the floor), I did too much exercise.    Exercise usually tires me out enough to help me sleep -- as long as I don't overdo it.  If I overdo it, I don't sleep at all.  It's like walking on the edge of a cliff.  One slip, and you fall.

I fell hard on Sunday.  I couldn't bear to spend another day looking out the window at this glorious late summer weather.  Waaaah!  I wanted to be out on the trail, on my bike!  David put the bikes on the rack and we drove off to the place where we usually start: Kilduff Rd.  It's about a mile from there to a lovely alcove that overhangs the Kokosing River.  A few hundred yards before I reached the bench, I felt the beginning of fatigue in my leg muscles.  We stopped and I sat on the bench resting, listening to the relaxing sounds of water and crickets.  It was a cool, breezy day.  The longer I rested, the more tired I felt.  Finally (perhaps 10 minutes later), I got on my bike and headed back to the car, traveling at an even slower speed than I had traveled on the way out.  It didn't seem to make a difference.  It was a struggle to get back to the car.

I knew I had overdone it, but there was no undoing it.  I took ATP.  I took NADH.  I took Vitamin C and magnesium.  I rested.  I ate.  I ate chocolate, yummy dark chocolate, chewing it greedily before I remembered to let it melt in my mouth.

I lay down but I couldn't relax.  The exercise had overstimulated my mind, and my body was crashing.  I put on wool socks and a sweatshirt.  When I finally remembered to take my oral temperature, it was 96.8.  I lay down under blankets (in August, in Ohio!) and rested.  I got my temperature up to a whopping 97.2!  By the end of the afternoon, with some gently yoga and a huge hunk of protein at dinner, my temperature returned to normal: 97.8  Needless to say, I did not sleep like a log, nor like a baby, nor like a rock.  I was up and down like a jumping jack until the first rays of sun crept through the blanket of trees outside my window.  Then, like most of us with ME-CFS, I fell asleep, and stayed that way until morning was nearly gone.

So much for reducing variables.  I will never be a scientist!




 

Sunday, August 23, 2009

To sleep, perchance to dream....

A few days ago, I dreamt I skidded around a sharp turn in a curving road at the edge of a cliff. I didn't wait to learn if I would have an accident and die. I woke myself up.

In my groggy state, I saw the moment as a metaphor of my healing journey. I was rounding a curve, about to travel in a new direction. But, I was going too fast, dangerously too fast, losing control of my vehicle/body.

What is speeding me up?

The past few weeks of sleep have been erratic and the last few days as unpredicatable as a crap shoot. One morning I woke at 5 am, the next at noon. The following night I was up until 3 am and slept again until 11 -- something I haven't done since I was a college Freshman.

The quality of sleep varied as well. On the nights I barely slept, I'd often awaken 2 or 3 times. On the nights I slept 8-12 hours, I went into deep sleep and didn't hear the phone ring.

I usually felt better after 10-12 hours of sleep, except in one respect: my bowels would be sluggish. What was slowing me down? Or was this my body going into deep healing for the first time in nearly two years?

I've been able to identify a pattern. The nights of long, deep sleep are associated with taking significantly less oral B12. The nights of very little sleep are associated with abrupt increases. I have been, I confess, way more erratic in my supplement regime than I would like to admit.

It all started with a few posts on the Phoenix Rising ME-CFS Forum by Freddd. He posted that he has recovered and has helped hundreds of other individuals recover by taking huge amounts of the active forms of B-12 (adenosyl and methyl) and totally eliminating the inactive forms of B-12 (hydroxo and cyano). He has proposed that the inactive forms actually create a functional B-12 deficit in the body, that the signs we attribute to detox are actually signs of B-12 deficiency, and that the longer one takes hydroxo and cyano B12, the harder it is to benefit from a switch to the active forms.

Being an easily-influenced sort of person and a Master Worry-Bug, I immediately decided to increase the amount of adenosyl B-12 I was taking. I popped 1/2 of a 10 mg lozenge into my mouth one day, and had a terrific evening, one of those rare nights when I felt simultaneously relaxed, energized, and creative. The next day, I took another half, and then, with Impatience-to-Get-Better nipping at my heels, I took a whole one. And I had a few nights of lousy sleep.

Meanwhile, Freddd's posts started a lively debate. Rich Van Konynenberg responded to reassure those of us taking hydroxo B12 on the Yasko protocol and the Simplied Five protocol that Freddd's inherited genetic need for the active forms was quite rare. Rich also explained:
The other thing to note is that recently published research has shown that when the various forms of B12 are imported into a cell, the first thing that happens is that the ligand (methyl, cyano, adenosyl or hydroxo) is removed from the cobalamin molecule, and then the two active forms, methylcobalamin and adenosylcobalamin are reformed in the approximate amounts needed by the cell.
He did admit that the type of B12 one takes has some influence on the ratios of the different kinds of B12 in the cell. But I didn't notice that caveat the first time I read it. I stopped the adenosyl. I went back to hydroxo B12. In my sleep-deprived state, sleep became more important than anything and before experimenting, I had been sleeping about 8 hours every night.

Then Freddd posted more information, and I began to doubt once again. I thought of a friend of mine who has been on the Simplified Five protocol for over a year and can no longer take even tiny amounts of hydroxo B12 without getting what she calls 'horrendous detox.' I thought of my detox skepticism -- that detox has become the explanation for every symptom resulting from the ingestion of any supposedly healthy supplement or initiation of any supposedly healthy regimen. What if, I proposed to my friend, your miserable symptoms are not from the release of toxins but from new toxins caused by stress? What if the things we are taking to become healthy are actually creating more imbalances?

During my study of naturopathy, I learned that taking large amounts of one B vitamin often lead to functional deficits in the other B vitamins. Similarly, taking large amounts of one amino acid lead to functional deficits in the other essential amino acids. We don't understand why the body doesn't effortlessly get rid of whatever it has in excess. We know only that the ratios of essential nutrients seem to have an impact on body physiology.

When Rich responded to Freddd on the Phoenix Rising forum, I felt the urge to defend the principle of the benefit of experience and observation. I wrote on the CFS_Yasko forum:
Thanks Rich. We've all been hoping for more clarification on this as we plod along with OHB12 wondering if we should stick or switch. Clearly science is on the side of OH B-12 as both safe and effective.

However, there is one piece of information in Freddd's posts you didn't address, but which I think is crucial. Freddd claims to have explored this protocol with some 600 people and found that 80% of them responded. It's not possible that he could have found such a high percentage of folks with CFS who share the same inherited mutation. Consequently, I think he has concluded that he is onto something that is not yet understood by science.

I think we should beware of dismissing this experiential evidence if, indeed, he has guided nearly 600 people. For example, we've had scientists 'prove' that there is no possible difference between pharmaceutical grade ascorbic acid and natural Vit C, yet clinicians claimed better results with the natural, and now we're starting to understand that shape, charge, and energetic aspects of molecules add complexity to identical chemical formulas. We don't understand why homeopathy works -- and there are those who insist it doesn't work and can't work -- yet it seems to work in many people, including children and pets who have no placebo expectations.

In the next flurry of exchanges between Rich and Freddd, the risks of taking methyl B12 were raised: methyl B-12 can release mercury in the brain and, in those who cannot readily transport it from the body, the free mercury radicals create more neurological damage. This is a valid concern for the many individuals with amalgam dental fillings and high levels of mercury. I don't think it is a worry for me anymore, although I can't be sure. My two most recent urinary toxic metal tests show very low mercury excretion.

The issue that catapulted me into trying again was Freddd's pointing out the incrementally slow progress of people on this protocol. Rich acknowledges the snail's pace of recovery. Yasko makes a point of it by frequently writing "this is a marathon, not a sprint."

SLOW has been a concern for me, not only because I am NATURALLY IMPATIENT, but also because I noticed when Rich posted the outcome of his controlled study with Dr. Nathan that the tables of data showed a pattern of increased well-being with the first 3 months and diminished returns for the second trimester. Was I spending $400 a month on supplements for smaller and smaller benefits every trimester?

Two individuals who have recently posted about their recovery, Freddd and Mike Dessin, claim to have recovered quite rapidly once they found the key to the body repair mode. Both had been sick for long periods of time. Both had cases of ME-CFS much more severe than mine.

Starting yesterday, I went back again to experimenting with adenosyl and methyl B12 while cutting out hydroxo B12. I had another night of fabulous deep sleep. I wonder whether I should also stop the hydroxo B12 shots and the glutathione shots? I have just invested $100 in these prescriptions. I have four bottles stockpiled of the hydroxo B12 lozenges I might never use.

As I get stuck in Confusion and feel Doubt seeping in through my pores like toxic gas, I wonder how I will ever know anything.

Then I remember. Be present. Take careful notes. Your inner wisdom knows.

For the past five days I have taken my oral temps 3x a day, as Dr. Rind (drrind.com) suggests to monitor thyroid and adrenal function. I have noted a slight increase in average temperature from my low normal of 97.8. If I can only be consistent and stop introducing other variables, I'll be able to see whether, on the active forms of B-12, my body temperature increases towards normal, my sleep is good, and my mood stays good. If it does, I'll know that whatever I am doing is working.

If not, I'll use my stockpiles of expensive hydroxoB12 again.

BTW, I am not off to a good start on consistency and eliminating variables. I rode my bike after lunch today for the first time in 2 months. Now my body temperature is down to 97.2

Anyone out there reading? What do you do to be consistent? How do you keep from changing direction when Doubts or Enthusiasm fills you?

Tuesday, August 18, 2009

More ramblings of a detox skeptic

My blood tests are in, and guess what? Just about everything is normal, and the physician doesn’t have any recommendations. Déjà vu. Again and again and again.

Plus, the results of my urine spot test for toxic metals arrived, and everything was below detectable limits except for six elements in the low to moderate reference range: arsenic, cadmium, lead, mercury, nickel and thalium.

So does this prove my skepticism? That my miserable symptoms of the past month were not detox?

Because the blood tests have some numbers that concern me, I'm going to play doctor (Gee, I did that when I was a little kid!). Perhaps I should say instead, that I'm going to advocate for myself and take personal responsibility for my health! We've been brainwashed into thinking we have to trust everything to doctors. But since my current doctors do nothing, and the ones I've seen in the past haven't any ideas about treating ME-CFS, I might as well try to see if the test reveals anything about the roots of my complaints.

I have a library of reference books, and take down a hefty spiral bound book called More than Just a Bunch of Numbers – Making Sense of Blood Chemistry Results. This handy reference was put together by a group in Michigan associated with Biotics Research Corporation, maker of nutritional supplements. I look up the numbers that concern me.

1.

TSH (thyroid stimulating hormone) has climbed up to 3.31 from 2.2, a substantial increase in the work the pituitary gland has to do to get the thyroid to pump out sufficient quantities of thyroid hormone. It's like flogging a tired horse, and it concerns me enough to ask my local doctor to order more tests for the free thyroid hormones, T4 and T3. A subclinical hypothyroid condition could partially account for my low energy and cold body temperature. Mercola.com argues that anything over 3.0 is indicative of a problem. I know I should also start doing the temperature checks that DrRind.com recommends, but damn it, I always forget. And now that ’m drinking another cup of tea, I’ll have to remember again in 45 minutes. It’s been 1 ½ years since I stopped needing supplement thyroid with the help of a talented acupuncturist. Perhaps my gland isn’t holding its own without maintenance acupuncture treatments.

2.

Total WBC (white blood cells) is low normal. This is common in chronic viral and bacterial infection.

Frequently, the pattern seen with chronic infection will be opposite of that seen with active infection. For example, the total WBC will be decreased, the lymphocyte count will be decreased with the neutrophils increased with chronic bacterial infection.
The inverse pattern is described for chronic viral infection.

Now for some sleuthing over the distribution of cells. Lymphocytes are marked L, below normal. There is no listing for neutrophils, but grans, short for granulocytes, includes neutrophils and they are high normal (69.9% with the reference range at 70% as the upper limit of normal). Basophils and eosinophils, the other kinds of granulocytes are listed separately. Looks like the chronic bacterial infection pattern so far.

Here’s what Wikipedia says about these types of white blood cells:

Neutrophils are professional phagocytes[8]: they are ferocious eaters and rapidly engulf invaders coated with antibodies and complement, and damaged cells or cellular debris. Neutrophils do not return to the blood; they turn into pus cells and die.
They are made in the bone marrow, while lymphocytes are made in the lymphoid tissue, which is where they get their name. Natural killer cells, B cells and T cells comprise the lymphocytes. Lymphs might be expected to be low in ME-CFS because low lymphs lead to opportunistic infections, and in the book it says:
Lymphocytes are an indication of the system’s ability to handle toxins. When increased, excessive systemic toxins are possible; when decreased, infection is possible.

3.

RBC (red blood cells) is low normal, MCV and MCH (measures of cell size) are high normal. Ugh. This is always my pattern. The high MCV and MCH reflect folate, B-12, and B-6 metabolism. I hoped this would have been fixed by now with all the folate, B-12, and methylation support I am taking. But apparently it has not. My red blood cells are not absorbing these vitamins. Hence on my last Vitamin Diagnostics Methylation panel, posted in April under Improvement, showed that RBC folate had just slipped into the normal range (it was 403 with 400 as the lowest normal.)

The reason for this can’t be a lack in my diet. It probably involves some aspect of transport, perhaps due to oxidative stress making the cell membranes inflexible or brittle. It isn’t considered a serious problem so hematologists don’t mess with it. But it is indicative of methylation problems which, after spending $400 or more a month on supplements, I would like to fix!

4.

Vitamin D is low. There are two kinds of Vitamin D measured. 25-hydroxy D-2 is <4. 25-hydroxy d-3 is 29.0

Now what is going on? I’m out in the sun most days, usually nude :) for a half hour or more. My skin has lots of opportunities to make Vit D from sunlight. When D-3 was measured in Nov 2007, just after my relapse, it was above 80, and I wasn't getting much sun.

Optimal vitamin D levels are controversial. My doctor wants me to supplement, even though taking D in the summertime is not generally advised. Mercola.com reports that current research recommends an optimal level of 45-52 ng/pg (115-128 nmol) and that sunshine is the only safe way to raise it.

But there is another point of view being promulgated by Dr. Trevor Marshall, whose research examines the relationship between Vit D levels and chronic infections. He writes: F

For half a century, medical science has been noting the association between Vitamin D serum levels and disease. What developed has been a concept of ‘Vitamin D Deficiency’ based solely on the assumption that ‘low’ Vitamin D serum levels somehow cause disease processes. But this ignores the alternate hypothesis -- that the disease processes themselves regulate the Vitamin D metabolism -- that the observed ‘low’ values of Vitamin D in disease are a result of the disease process, and not the cause. Molecular biology has now taught us that the body is capable of making its Vitamin D directly from 7-dehydro-cholesterol, and that the generation of the Vitamin D metabolites is modulated by inflammatory disease processes.
Marshall’s research in molecular biology has shown that some bacterial pathogens disable their host’s ability to produce antimicrobial peptides by disabling the Vitamin D Receptor. As a consequence, Vitamin D levels remain low as long as the bacteria remains in the body. Furthermore, artificially increasing Vit D levels by supplementation can lead to an increase in the pathogen load. (See J.C. Waterhouse, Reversing Bacteria-Induced Vitamin D Receptor Dysfunction to Treat Chronic Disease: Why Vitamin D Supplementation Can Be Immunosuppressive, Potentially Leading to Pathogen Increase, in The Townsend Letter for Doctors and Patients, Jan 2009)

So now what do I do? Stay out of the sun or spend more time in the sun? Take supplemental Vit D or hold off on it?

In sum, .the likelihood of chronic bacterial infection looms large. But is it in my jaw bone, my gut (as some have postulated as a cause of my low amino acids – I’ll write about this another day), or in some other tissue? Whatever it is, it knows how to hide. A myriad of energy diagnostic programs, like Zyto, Bio-Meridian, Harmonic Translation, to name a few I’ve tried recently, have not identified a suspicious pathogen.

In the meantime, I have a few tricks in my bagL

[1] To increase lymphocytes (which help fight bacteria) I will add Thymic Protein A to my supplement regime. I just sprinkled a packet of powder under my tongue as I continue to write.

[2] To get out my Sota Instruments pulser and try to zap any bacteria that get into the blood circulation.

[3] To start low dose naltrexone, which has been shown to raise NK cells and CD8 cells (types of lymphocytes) and suppress inflammatory cytokines.

Plus, I await a Sept 9 appointment with a doctor who has helped others improve their immune function and recover from ME-CFS. The experiences of his patients give me HOPE.

Saturday, August 15, 2009

The politics of obsession

What is it like to be totally obsessed with your health?

I never thought I'd succumb to this. And yet, like so many others with ME-CFS, I have become obsessed. I want to believe there is a way to prevent getting worse. I want to believe there is a way to get better. I want to believe I have control over my fate.

As I ride over the crests and down into the valleys of this illness, I'm convinced my tendency to obsess has much to with the current lack of understanding, or to be more accurate, misunderstanding about this illness. In the U.S., ME-CFS is misdiagnosed and greatly misunderstood. The misunderstanding about it comes as much from politics as it does scientific ignorance. And the two work symbiotically, like Siamese twins, inseparable from one another.

The history of this mess is beautifully documented in Hillary Johnson's book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Hillary is a journalist who, with an incredible eye for detail and controversy, pulled together a stunning history of the first decade of CFS in the U.S. Her accounts reads like a combination mystery and thriller, as she describes the efforts of physicians and researchers to alert the CDC to an epidemic threat, the CDS's dismissal of evidence, diversion of research funds, and ultimate decision to trivialize the disease as psychosomatic. Hillary's blog oslersweb.com continues to advocate for ME.

A few days ago, I read a blog by another young woman who, at the early stage of her illness, was advised by her Doc to push through the fatigue. As a result of his misguidance, she went from mildly ill to bedridden.

A similar thing happened to one of my best friends. She went out skiing when she felt better, unaware of the serious risk to her already compromised health. She came home with a case of Lyme-induced ME that has kept her nearly bedridden and severely cognitively-impaired for four years. To her great regret, an acupuncturist advised to take it easy and avoid exercise. But as a member of our exercise-obsessed society, and without support of mainstream medicine, she didn't listen.

If both women's doctors had been informed about M.E., two individuals would have avoided many years of suffering. And their families, friends, and businesses would have benefited as well, for each individual's experience ripples out in circles like water does in a lake when a pebble is dropped. In our current politico-medical situation, the very diagnostic criteria for CFS --"Six months of unexplained fatigue" -- and the practice of treating with SSRI's and other antidepressants, guarantee that many more individuals will suffer a similar fate.

All of us with ME-CFS have stories about well-meaning advice that nearly killed us. Most of us have suffered as much at the hands of medical professionals as we have from our own attempts, however misguided, to self-diagnose and self-treat. We’ve had crazy reactions to drugs and to supplements. Who can we trust to guide us?

I saw a physician Thursday who specializes in fibromyalgia. He does research in the field of chronic pain. As a result, he treats all the CFS patients who come to the hospital clinic. Despite his many years of experience, he still thinks of our main symptom as ‘fatigue.’ I know because I asked about getting script for low dose naltrexone.

“I don’t recommend it,” he said.

“Why not?” I asked.

“It won’t do anything for your fatigue,” he replied.

Now why was he focusing on fatigue when, for the past 10 minutes, I’d been recounting the trials of my summer, one infection after another (or one detox crisis after another, depending upon your point of view)? I told him I wanted to try low dose naltrexone to help my immune system.

That’s what a name does. Chronic Fatigue Syndrome. And it’s one of the main reasons people minimize and misunderstand our illness.

"I’ve been really tired too,” a friend might say in sympathy. Her intention of providing support through empathy makes me smile. But I can’t hear those words without getting angry. Why? Because fatigue doesn’t come close to describing the symptoms of this illness. Because the Canadians adopted accurate criteria for ME in 2005 and the US has done nothing seriously towards adopting the same reasonable, scientifically valid criteria. Because the CDC is still lumbering along the path of a psychological stress illness, triumphantly touting the importance of their newest study results: more people with CFS were sexually abused as children than normal controls.

Wow! That’s a revelation! A few percentage points more than the general population. Now they can justify diverting funds from CFS research to sexual abuse…

Is there any chronic illness for which childhood trauma is not an increased risk factor?

(BTW, the article New perspective on chronic fatigue syndrome: lessons from developmental neuroscience, by Christine Heim received a whipping in Hilary Johnson's commentary)

Sarcasm aside, the issue of where to funnel research monies is a serious one. Many of the physicians who treat us and do ME research are as frustrated with the government criteria as we patients. (Perhaps we should be called impatients!). Peterson, one of the first physicians to see the illness in 1986, and the one who called out the CDC to investigate the epidemic in Incline Village NV, has set up his own research center and is raising private funding.

It has been a frustrating journey for me to look at the studies which have come out on CFS over the course of the past 15 years. I am always looking for something that will help me to understand what is going on in my unpredictable body, and always disappointed at the narrowness of the research studies, with their limited criteria.

I remember being excited when I saw that several groups of researchers were looking at HPA axis issues in CFS (HPA = hypothalamus, pituitary, adrenal axis) They found that we had problems regulating -- something any impatient with ME could have told them --but didn't figure out why. The adrenals make 40 different hormones but they only measured one. Labs all over the country have shown that salivary hormone tests are more accurate for the adrenals, because they test the free, active hormone levels, but the studies used the old standby, blood (serum). No studies used florescent markers to study whether hormone molecules made it from the blood into the cytoplasm or nucleus of the cells where they have their effects. No one even tried to determine what interventions might help the body to recover HPA axis regulation. It was depressing to see how little was done with such a huge outlay of funds. It is as if the scientific method has become a huge, unwieldy, obese bureaucrat that waddles around scratching its own ass.

What are your pet peeves? Where do you think ME-CFS research funds should be funneled? Do you think changing the name will make a difference?


Friday, August 14, 2009

Ramblings of a Detox Skeptic

Okay, folks. So my current rash of symptoms could be detox. That's the optimist speaking.

But my mind still keeps thinking other explanations are more likely. Sure I'm a champion worrier (a skill I learned from my parents and mastered when I became a mother).

Two weeks ago I was sure I had some kind of virus. I had the standard virus pattern: crappy in the morning, a little better in the afternoon, ready to shake up the world at night. Crappy is not a medical term, so here goes: congestion, sore throat, swollen glands, sleeping til all hours of the morning, lethargy, insomnia. It was deja-vu, like I'd time-traveled back to 1987 to the beginning of my illness.

Sunday I felt better. Monday much better. "I'm finally over that virus," I announced to David, who said he thought he was coming down with it. Tuesday, I injected a lower dose of B-12, and despite mild headache and fatigue later in the day, felt so good on Wednesday that I took my first walk in six weeks!!!! How wonderful to be outside, moving, breathing, and seeing other human beings. Ah!

But guess what? Thursday (yesterday) was the pits. Back to congestion, colored mucus, tender glands everywhere, more aching than before around my dental surgery site. I saw the doctor in the morning, got lunch, rested, and went to a movie. I felt sick during the movie and developed a headache in my eyes and sinuses and even a little queasiness and dehydration. I canceled plans for the dinner hour, lay in bed at a relative's house, did some gentle yoga, and finally succumbed to the pill-popping culture by popping my own, pink ibuprofen. So much for my big day of fun in Columbus!

I suspect I have an infection in the bone. Aagh! Yes, this serious, and yet I don't want to spend $100 running back to the dentist who pulled my broken front tooth in May. The bone cavity got infected 4 days later. I did a penicillin shot for that infection and felt immediately better Five weeks later the dentist did surgery at the same site to clean out the new soft tissue and implant bone growth matrix. While I sat in the dentist's chair for 2 1/2 hours listening to scalpels scrape against bone, I reminded myself my bone needed help to grow strong for an implant so I wouldn't have to become a toothless old hag.

So why I am worried?

First, I'm a champion worrier when it comes to health. It's a defense all of us with ME-CFS learn sooner or later. Docs either ignore us, tell us we are 'very healthy' because our blood tests look great (even though the tests aren't measuring the problem) or attribute everything we have wrong to ME-CFS, failing to diagnose other things that come along.

Second, the penicillin shot I took to prevent infection (after the 2nd surgery) only lasts a month. That month was up 3 weeks ago. I've been getting worse since then. Every time I feel a little pain, I poke and prod and try to self-diagnose


Maybe I will know more tomorrow; for sure, by the end of next week. Yesterday I parted with 6 tubes of red hot blood, and 1/2 cup of yellow urine.

Til then.... I remember Alfred E. Newman from my childhood: What me worry?
Twould be better to sleep, perchance to dream. I'll go torture myself with another B-12/GSH injection.

Wednesday, August 12, 2009

The Triumph of Hope over Experience

I must be a recalcitrant optimist. No matter how often life shows me that ME-CFS is a progressive illness, I keep believing I can shift the progression towards recovery.

So in the mental battle of recent weeks -- are my new (old) symptoms due to detox or yet another worsening of my condition -- I've come down on the side of detox.

Yes, I admit, I am easily influenced by other people's opinions, especially people I don't know (never breaking the cardinal rule: don't let yourself be persuaded by spouse or parents)such as the numerous, intelligent, well-versed-in-natural-medicine folks who populate the ME-CFS and nutrigenomics forums. Every one who responded to my cry for help believed in detox.

In naturopathy school, I learned that the body heals in reverse order. First the most recent symptoms are removed; last the symptoms that arose at the beginning of the illness. My history is as long as Ulysses' Odyssey -- 22 years! -- but I still remember the flu-like viral symptoms of my first bout with ME-CFS in 1987, with swollen glands, intermittent sore throats and low-grade fever. I'm not back there yet, and can't remember every time since I had one or all of those symptoms.

One particularly inspiring individual reminded me that mucous is produced by the body to remove toxins. I've heard that before, I think immediately, for I like to be agreeable. It's only late at night, alone with my thoughts and far from the influence of well-meaning optimists like myself, that the demons of doubt begin grumbling. That's when I remember reading in Peter Parham's book, The Immune System, about goblet cells that secrete mucus to protect the cells lining body cavities open to the outside world from invasion by viruses, bacteria, and parasites. Actually, it's the strikingly beautiful picture I remember, teal-stained droplets of mucus contained in a little pouch in a field of orange and yellow. I'd upload it here if I could get my scanner working again! The mucus, it seems, is always flowing in small quantities to keep out invaders from nose, mouth, lungs, and gut, and we don't notice it.

So what about when there are huge quantities of that globby mucus, when it's thin and runny and never-ending? I browse through Parham looking for information. I can't find any discussion of this phenomenon as detox, but it does increase with allergens (when histamine and mast cells get involved) and it does increase with the inflammatory response to infection. Oops! None of this substantiates the detox theory that would consolidate the belief that I am going through a healing crisis.

But as I said earlier, my optimism is recalcitrant -- that is, it resists experience, and perhaps also fact. So I turn to the kind of unscientific, experiential wisdom that drives critics of natural medicine wild.

For example, yesterday I took another B-12 injection. After feeling so sick from the previous one, and after hearing from several friends that my dose of 2.5 mg. was "alot" and "Gosh how do you tolerate it?", I decided to cut the dose in half. Eureka! In the evening I noticed only a mild headache, a few pimples, and increased fatigue. I had difficulty falling asleep and awakened early, but all this was a giant improvement on the cold ankles, runny nose, and complete lack of sleep I had last week.

Perhaps I could have an answer to my question if I dare take a higher dose on Friday, when I'm scheduled to do another injection.... In the meantime, I'm taking the low road. I put a urine sample in the freezer during the worst of the symptoms (the next morning, after sleeping until 12:30 pm!) which I'll send into a lab to see if I'm eliminating more toxic metals than I normally do. Also, tomorrow I'm going to a doctor at Ohio State University who will take some immune function tests, looking for viral titers and signs of a bacterial infection.

If all this stuff comes out negative, I'll still have that flexible detox theory to explain the mysterious enigma of M.E. For detox is like an Aristotelian theory, capable of absorbing all kinds of diverse bits of data and flexible enough to change with the facts. I love it!!!

Saturday, August 8, 2009

Detox (ugh!)

When Rich told me to introduce the protocol slowly because of detox, I joked that I'd like to have some detox so that I'd know the protocol was working.

Well here it is, some 9 months later, in a most confusing presentation. My nose is running, I'm cold, especially around the ankles, and my bowels are loose. Sounds somewhat like a cold, doesn't it? And that's what makes it confusing.

Is this what people on some of the internet discussion groups describe as detoxing viruses? If so, then I am getting rid of critters I've harbored for years. On the other hand, my own, skeptical voice says this feels way too much like the constant colds I've have throughout the course of this long illness --whenever I would get overtired or stressed. It feels like I'm just getting worse.

The detox-masquerading-as-cold (or cold-masquerading-as-detox) started a few weeks ago. I thought it was because the weather had turned cold. We've had an amazingly cool summer with nights and mornings in the high '60's, low '70's and no humidity. The house is always cool in the morning due to the thick green wall of trees on the east that block the sun from reaching the windows and roof until well after 10 am. So I bundled up in leggings and wool socks and a sweater. By afternoon, I could no longer put off my errands. I'd see people dressed in shorts and tee shirts and begin to wonder what was going on with me. Then, as the car overheated parked on asphalt lots in the sunk I too would warm up. I'd return home, change into shorts, and stay warm until I finished yoga and the sun began to approach the horizon.

The skeptical voice argues that something in this protocol is weakening my immune system and making me more susceptible to viruses.

I remember when I did a juice fast in early 2000. Within a day or two, I had a herpes eruption. The ordering physician assured me this was detox: your body is getting rid of the virus; a good sign. But, alas, over the nine subsequent years. that I had similar outbreaks whenever my body was unduly stressed. What I'v learned since is that many viruses, and especially the herpes virus, hang around in the cells of the nervous system where they are encapsulated to keep them inactive. During periods of stress, the capsule disintegrates and the virus becomes active once again.

The next theory I entertained was the detox of Coxsackie B. I have "first year med student syndrome" whenever I read about some new finding in ME-CFS. Coxsackie B came into my awareness when I read an interview with Dr. Chia, who in treating his son for ME-CFS, found the Coxsackie B enterovirus. He has subsequently found it in 80% of his CFS patients. Coxsackie B is known to be prevalent in Ohio, where I live. As the Wikipedia article states,
Symptoms of infection with viruses in the Coxsackie B grouping include fever, headache, sore throat, gastrointestinal distress, as well as chest and muscle pain.
I think back to the summer of 2007, before this most recent relapse, and remember that I had frequent bouts of chest pain, some of them so intense that my doctor ordered a halter study and a heart sonogram. In support of my self-diagnosis, I remember that a practitioner using the Bio-Meridian electo dermal screening device identified the Coxsackie virus as one of my problems and gave me some homeopathic drops based upon its frequency. Those homeopathics were the first thing in a month that seemed to make a tiny difference in the intensity of my symptoms (at the time, chest pain, tachycardia on being upright, and orthostatic intolerance)

Now I'm thinking about a third possibility directly related to the increase in B-12. I'll explain.

Back in January, I had a hard time increasing my dose of B12 as I wrote in Two B or Not Two B (12' that is). It was excitatory, keeping me awake at night (as I am now awake at 5 am). I cut back to 1 sublingual lozenge and slowly increased by taking 1/2 or 1/4 lozenge a day. I worked up to 3 lozenges without symptoms. I patted myself on the back for being able to tolerate 6000 mcg of B-12 as I read of terrible bouts with detox on the part of my online ME-CFS friends.

Then I read of those taking twice or three-times as much B12 as I was. Should I increase? I wondered. I wanted to see if there were any contraindications from taking too much B-12 and did some research. No problems showed up, except for a few rare individuals who get cyanide poisoning from taking too much cyano-cobalamine, the inexpensve form of B-12 sold in the U.S. [Cobalamine is just another name for B12)

But I am taking a form know as aqua- or hydroxo- cobalamin, which has the property of breaking down to water plus cobalamine, without toxicity. It has has the property of scavenging peroxynitrite radicals (work which Dr. Martin Pall has documented in his book Explaining Unexplained Illness) and website. People with CFS have way too many of these free radicals damaging cell membranes and mitochondria, thereby creating a problem with oxygen use. Pall has argued that high peroxynitrite (ONOO), resulting from an upregulating of the nitric oxide cycle, is both the cause and explains the chronicity of ME-CFS, PTSD, MCS, and FMS.

So I increased to four lozenges a day. That's when the cold-virus-or-detox started. Tuesday, I did an intramuscular shot (2.5 mg). Today, a sub-cutaneous injection. That's a huge increase in B12, since injected B12 is much better absorbed than sublingual.

If all the hydroxo B12 I am taking is clearing out toxic ONOO, I ought to feel great. Right?

But oops! ONOO does some good things too. Like everything the body makes, a certain amount is good, too much and too little are not good. It just so happens that ONOO is made by the immune system to neutralize viruses. Oh! No-o!

It's actually a little more complicated, or more accurately, a lot more complicated -- so horribly complicated I can't even begin to summarize what I've been reading in Peter Parham's textbook, The Immune System. [Even if I could, would you want to read about complement C this and expresser cell that?] The bottom line is that the immune system has to break apart cells, not only the cells of parasites and bacteria, and our bodies very own cells infected by viruses. It does this by using small amounts of toxic chemicals. That runny nose, loose stool, fever, and swelling we associate with infection is actually caused by the release of cells in our own body as it tries to fight the infection. If this is the case, then with all this new B-12, and with reduced ONOO slowing everything down, my immune cells could be working frantically to get rid of some infection that I've been harboring for years.

Whew! Now I feel better, or I should say, I 'think' better. Although my nose is still running (not as rapidly due to the Benadryl capsule I took an hour ago), my head has slowed to a leisurely walk. It is time to return to bed, and catch a few hours of sleep before the sun rises above the height of the trees to the east.

On the other hand, maybe the B12 is just speeding up my energy production enough to create stress and make me more susceptible to those viral critters floating around in the air....