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.