Wednesday, March 25, 2009

How am I doing?

A friend asked last week: "Forget all the technical stuff. How are you doing?"

No easy answer.
"Fine" for acquaintances.
"Discouraged for the doctor.
"Cosi cosi" for everyone else -- an Italian expression meaning a little of this, a little of that, another way of saying "I don't have the slightest idea!"

In this illness (or if you prefer, alphabet clusters of closely-related syndromes -- CFS, ME, Lyme, PTSD, MCS, FMS) there are so many variables that it is hard to know. For every thing starts working better, another thing seems to get worse. Like life, there is a mix. We can choose where to direct our attention. If we are optimists, as I tend to be, we may sense improvement even if it's illusory. Vice versa if we tend to be pessimists. So here's a long answer to a short question.

On the good side---
I am feeling more energy. I’ve taken my body temperatures a few times when I’ve felt particularly good and found it at 98.2. I’ve had some awful days, but they’ve been offset with several days in which I feel better than I have in quite a while. I take this as a sign I am making progress.

Another good sign is that I have been able to increase my B-12. Remembering how too much B-12 kept me up at night, I gingerly broke a pill in half and still managed to sleep that night.

A mixed sign: I am sleeping 8 to 10 hours at night. Wow! During years of insomnia, this would have felt like the answer to my prayers. Now I would like to do something more interesting with my time. (I'm not even having wild dreams!) Logging in all these nighttime hours doesn't erase my need for a mid day nap. How do I interpret this one? Am I worse because I'm more fatigued, or better because my nervous system is calming down enough to sleep? I choose the latter interpretation with no evidence other than a preference for optimism.

Now for the bad news...

Even though my sulfate levels are in a good (supposedly therapeutic range) my urinary ammonia levels are not. But high ammonia is not so good for the brain, or the other tissues in the body. And I don't know how to bring them down while eating protein.

The protocol Yasko uses for autistic kids, and Roberts uses for heart disease patients, involves a low protein diet to control the drain of metabolites through the transulfurate pathway (subject of last two posts). But many people with CFS and FMS cannot manage on low protein because our amino acids are already low.

I've had amino acids tested (plasma and urine) since 2000 and they are always low. They actually get lower when I eat more protein! Researchers at the University of Pisa just published a study showing that people with FMS tend to have many low amino acids. Here is the link and abstract. Clinical Biochemisty March 10 2009
OBJECTIVES: To evaluate plasma amino acid (AA) concentrations in patients affected by fibromyalgia (FM) and to study the relationships between their levels and FM clinical parameters. DESIGN AND METHODS: 20 AAs were assessed in 34 FM patients and in 18 healthy volunteers by means of a modified version of the Waters picotag method. RESULTS: Significant lower plasma taurine, alanine, tyrosine (Tyr), valine, methionine, phenylalanine and threonine concentrations, and the sum of essential AAs were observed in FM patients vs healthy controls (P<0.05). Tyr CAA' ratio and the sum of AAs competing with tryptophan for brain uptake were significantly reduced in FM (P<0.05). A significant correlation was found between FM clinical parameters and certain AAs.


Aside: I have a way of checking them at home that I learned from Dr. Charles McWilliam’s in Nevis (Talk about traveling distances for medical care! I went there as a student of his method of using colored light to do past-life regressions, in another lifetime.) Nevis is a Caribbean island adjacent to St. Kitt’s, close to the equator, with a huge volcanic mountain in the center, turquoise seas, white sand, coconut trees, and lots of goats and donkeys wandering around on trails through the hills.

So what am I to do? I eat more protein, ammonia climbs. Hmmmm..... something else is awry. After two repeats, I pulled out the other testing substrate to look at urinary urea. Low. Bummer. This all means I am breaking down proteins but not recycling amino acids adequately through the urea cycle.

No pre-protocol baseline on the ammonia/urea/sulfates to show if I am better or worse, or unchanged, but I do have one external sign: I had to reduce my weights at the gym when I started this protocol and have not been able to raise them to my mid-December levels after nearly three months!

Bad news # 2. I have a home test kit that measures antioxidant need. It does this by indicating the level of malondialdehyde (MDA) in the urine. MDA is the first byproduct of lipid peroxidation (damage to the fatty acids of cell membranes). Free radicals are always being produced in our bodies by oxidation; therefore, we need to counter then with anti-oxidants in our diet. People with CFS/ME have a particularly high need for anti-oxidants. Mine was climbing to the sky -- e.g. 'severe.'

Back in 2004, I checked my levels, found them moderately high, and explored numerous anti-oxidant products until I found one that worked. Taking Vibe, by Eniva, with its ORAC rating of 85,000 per ounce, was sufficient to bring my lipid peroxidation down to a safe level. Consequently, when Rich van Konynenberg told me I had to stop taking Vibe because of its folic acid content (400 mcg per ounce – the RDA), I was unhappy. Still I complied, and I felt my energy crash over the next few weeks, as I describe in the December 2008 posts to this blog.

Now I am worried. I can see that, even though I am taking products on this protocol to support the health of my cell membranes (the phosphatidyl serine complex and essential fatty acids), I am damaging those membrances faster than I can repair them.

I researched the antioxidants Yasko recommends, and put in an order. Now I am officially no longer on the simplifed five protocol, because my supplements include lots of Vit C, E, and Co Q 10, plus I've added grape seed extract and pycnogenol (anti-oxidants that help support GABA) and NADH to limit mitochondrial oxidation. I will most likely add some peroxynitrate scavengers from Martin Pall's protocol if my next test doesn't show a big reduction in MDA.

There is no doubt in my mind that a high level of lipid peroxidation is one of the reasons that PWC’s continue to deteriorate. (Others are the build-up of toxins, of chronic infections, and of nutritional deficiencies.) In the theory of natural healing, the body uses its vital healing force to repair the most recent damage before it gets around to repairing older problems. It is like going through the piles on your desk: last in, first out. In order to get to the bottom of the pile, you have to stop adding more papers to the pile. Similarly, to recover from CFS, we have to stop damaging our bodies.

This is another important reason why aerobic exercise should be avoided, giving preference to safer ways to increase circulation and maintain muscle tone. Aerobic exercise increases oxidative damage, especially in people with CFS.

Oxidative damage will [supposedly] reduce when the methylation cycle is finally working well, for reasons that involve a rather complicated biochemistry of five interlocking cycles in cellular metabolism – the methionine cycle, the folate cycle, the neruotransmitter cycle, the urea cycle, and the transulfuration pathway. In the meantime, we are wreaking havoc in our bodies. We need to reduce the continuing damage in every safe way we can, especially those of us who are over the hill (past 30), whose breakdown (catabolism) exceeds our rebuilding (anabolic) capacities.

Janis

2 comments:

  1. Hi Janis

    this blog is really interesting to me! We are in the same place - chronic fatigue, POTS etc etc. I got sick after an unprotected amalgam removal nearly five years ago. I did the hair test (which showed high mercury), did a load of tests which showed hypothyroidism, hypoadrenalism, all low hormone profile. Basically I was a walking car crash, and not even walking very well - I was largely housebound by that stage. So I had my amalgams out, and started chelation with the Cutler protocol. After two years of chelation, I am doing much better, although I am on full thyroid / adrenal support and will probably be for the rest of my life.

    I have also toyed with the simplified protocol, and started it at least three times. Each time I pitched into such a strong detox I couldn't handle it, and stopped the supps. I think my body burden of mercury is too high to tolerate getting methylation going without some form of chelation.

    I have found that I cannot tolerate any amount of methyl B12. It brings on instant mercury symptoms, and makes me feel ill.

    I am wondering whether getting the source of mercury out (my amalgams) is enabling my methylation cycle to slowly resurrect itself. One year afer amalgam removal I developed a permanent metal taste in my mouth, it is still with me two years later. Rich says that a metal taste is a sign that methylation is working. It gets particularly bad when I am dumping mercury, and goes almost completely when I am chelating. Also, the half moons on my nails are slowly coming back, having been completely absent for years and years. I read somewhere that these are an indication of how much B12 is in your system, so I seem to be using more these days. Finally, the last blood draw I had showed that my folic acid levels had dropped by half, despite taking the same amount of B vits - could this be being used up in the methylation cycle, I wonder?

    I decided not to continue with the simplified protocol because it made me feel ill, and chelation is definitely the way forward for me. Also the Yasko stuff is so complicated I simply can't get my head round it. I am about to experiment with some hydroxycobalamin, however, to see if I tolerate that better than methylcobalamin. My worst symptom is also the heart pounding when I stand up, which I discover is also due to a methylation block. It is all beginning to add up! Anyway, if I could get rid of that symptom I would be very happy!!

    I shall be a regular follower of your blog - it will be interesting how much progress we both make.

    Kind regards

    Nicola

    ReplyDelete
  2. How are u? This blog apparently is abandoned, since 2009?

    Thanks

    ReplyDelete

Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.