Wednesday, January 28, 2009

Two B or not two B (12's that is)

Have I sunk this far? That my thoughts center around how many B 12 vitamins to take? Is this the level of cognition to which this illness reduces us?

Last week, after I increased B12 from one to two tablets, I wondered (blog Jan 19, The Dow Jones Energy Level Average) whether I was getting the anticipated detox. Rich had warned me: “and since your reduced glutathione level is fairly low (Glutathione normally protects vitamin B12 from reaction with toxins in the cells until it can be converted to one of the active forms, methylcobalamin or acetylcobalamin.)... much of the B12 is hijacked by toxins. I would suggest holding off on the B12 for two weeks, until the other supplements have had a chance to take effect, since you have a pretty high folate status, and adding the B12 may start up detox."

The first day on a double dose, I experienced no difference. The second day I had a mild headache but since I spent two hours in the waiting room of a wheel rim repair place that smelled like new carpeting, I would have had a headache from the formaldehyde or VOCs in that air. Normally, I would have left the building ASAP, but since I was waiting for friends who were on their way home from the inauguration in Washington DC and due to arrive any minute, I stayed and got a terrible headache. The third day I inadvertently increased my dosage to 3 B12’s and continued to have a mild headache. The fourth day I reduced the dose a bit (to 2 ½ B12’s) and have not had a headache since. I have no idea if there is a causal relationship between these events.

The whole process of fine-tuning supplements and medication is a great art, one we are always learning. Even if it were possible to test B12 levels each day the way diabetics test for blood glucose, would the numbers be a sufficient guide to the this process in which I am engaging — the cultivation of improved quality of life?

I think of a discussion I had on New Year’s Eve with a retired rheumatologist. (Rheumatologists started treating fibromyalgia when evidence of abnormal SED rates in FMS patients emerged.) This sincere, sympathetic physician set up a fibromyalgia clinic at a University hospital. Less than a decade later it was closed down by Medicare “because it wasn’t cost-effective.”

“What does that mean?” I asked, “How can FMS treatment possibly cost anything remotely close to what it costs for bypass surgery, for chemotherapy, for...” I’m already worked up, wanting to get up on a soap box and rant about discrimination in women’s health, about how our problems are not taken seriously, are dismissed as psychosomatic, are under-researched and under-funded, and ... Fortunately he doesn’t give me a chance to make a fool of myself.

“We had to spend a lot of time with each patient and we couldn’t justify the time by getting people back to work,” he said.

“But didn’t you improve their quality of life?” I ask, dumbfounded.

He shrugs and tells me how important it is for people's mental health to be productive. He doesn’t know I’ve had to come face to face with that issue, wrestling with it since I first went on disability in 1994, getting the advantage a few times only to plunge into relapse again and end up flat on my back. I want to argue with the government's decision, knowing how much of a difference it makes for one individual to experience even a modest improvement in quality of life, how it ripples out to their spouses, their children, their siblings and friends. I want to get on my soapbox and rant that if women controlled government, FMS and CFS/ME would get a lot more attention, that it's unfair for Medicare to cover drugs like Viagra when they won't help women with FMS improve their quality of life. But I don’t say anything because I know that if a pharmaceutical drug worked for this illness, everything would be different. Natural products and lifestyle changes do not constitute certified medical treatment in this country, even if those things work, for there are no profit-takers lobbying in its favor.

This illness is like a pianoforte, soft and mild for a few moments and then, unexpectedly, forceful and overwhelming for a period. And so we must become our own piano tuners, adjusting the strings ever so slightly to get the optimal vibration, even if, in a few days or weeks (with changing humidity/hydration and use/activity) it will need fine tuning again. Rich’s fine-tuning guidance was pretty vague. “I would suggest starting with the dosages listed, perhaps working up to them slowly, and then trying them for a few weeks to see if you experience detox symptoms, which is unfortunately a necessary part of this treatment. If you don’t experience detox symptoms, I would suggest raising the hydroxocobalamin dosage, but keeping the two folate-containing supplements at the recommended dosages. As the detox gets going, you will be able to control it at a level you can tolerate by adjusting the dosages.

Since I’m not getting any noticeable detox, I went on a yahoo discussion group to see if I could find guidelines for adjusting these quantities. I looked at the protocol of Dr. Sara Myhill, a UK physician treating CFS/ME who has adopted Rich Van Konynenberg’s Glutathione Depletion- Methylation Cycle Block Hypothesis. Myhill recommends 5 mg of hydroxy B12 (the equivalent of 5 tablets), 1 mg of methyl B12, and 800 mcg of active folate (methyl THF) – substantially higher doses that Rich’s 1 mg hydroxy B12, 0 mg methyl B12 and 200 mcg active folate.

I learn from Myhill that I can take substantially higher doses without harming myself. With Myhill’s lists of 28 detox symptoms, there are at least 28 ways my body will let me know if I get too much. When I took more than 1 mg of methyl B12, I got insomnia--not listed among her 28 detox symptoms but a clear, somatic message nevertheless. My artistic challenge will be to find harmony and balance between the three supplements that push or slow the methylation cycle: hydroxy B12, methyl B12, and methyl THF. If Rich has erred on the side of caution and Myhill on the side of excess, I will walk the middle path.

Monday, January 19, 2009

The Dow Jones Energy Level Average, or How to Tell If I’m Making Progress

I’m reminded of my erratic energy levels as I watch the Dow climb up 600 points one day and plunge down 800 the next. It is one of the more challenging aspects of my existence, one that sets up expectations only to plunge me into disappointments. It’s the roller coaster of CFS, as jaggedly spiked as the current Dow Jones Industrial Average.

This past Thursday and Sunday I felt great, almost normal at times. I accomplished a lot and went to sleep content, hoping for a new trend. Alas, the next morning, I could barely get out of bed.

“I overdid it,” I said to myself, always thinking I have some control over the pattern. It’s nice to believe I have control. For if the world is predictable, if my behavior can affect my energy levels, then I have POWER OVER THIS ILLNESS!

But a voice of doubt pops into my head. What did I actually overdo?

I usually wait to eat until I’m hungry, and almost every day the hunger arrives at predicable times, about noon and 6:00pm. If it’s earlier, I take a snack. Can I help it if, yesterday, the signal for lunch didn’t arrive until 2 pm? ... that I didn’t even think about dinner until 7:30 pm when I finished an engaging project, and then didn’t feel the least bit hungry, so I took some time to do hatha yoga before eating? Should I have forced myself to stop and eat at the regular times, perhaps even setting an alarm? I don’t know the answer. I get in bed about the same time every night, but some nights I’m asleep in 10 minutes and others I’m waiting for 2-3 hours before The Sandman arrives. And I don’t always feel worse after one of those insomniac adventures.

The post-Thursday crash arose on the first day I had my new hydroxy B-12. Rich told me to expect some detox. I considered whether the tight sinuses and slight feeling of getting a cold could be detox, but decided against that theory because I remembered I had the exact same symptoms many times this summer. Every time I did a little bit of aerobic exercise, like a 3 mile bike ride, or a 15 minute walk, I'd feel as though I were getting a cold the next two days. So I gave up walking and biking and had some stability in my life.

I cleared up the new, incipient colds by resting and drinking lots of hot tea, putting eucalyptus oil in a hot bath, and taking a combination of tinctures of echinacea, horseradish, and myrrh. Today, the post Sunday crash, brings with it another symptom — an enlarged tongue. And that’s what reminded me of a few simple, accurate ways to monitor whether energy average is improving or not, because I can't tell from day to day.

1. Low body temperature. I’m indebted to DrRind.com for this one. My oral temperature averages low, usually 97.8, which is a sign that the body isn’t making enough ATP to function at a normal body temperature. [nb: it can also be a sign of low thyroid or low adrenal function. See more details at DrRind.com] At the lower body temperature, everything slows down in the cell, including phagocytosis (the ability of white blood cells to capture and destroy viruses) and finicky enzyme reactions that affect methylation and metabolism. Yesterday, my temperature was a whopping 98.2! It was delightful. A heat wave. Today it is down again, 97.2 all morning and early afternoon, up to 97.8 after my nap. I started monitoring 3 days ago, and will compare with records I kept in the spring of 2008. If I see the average getting higher, and the peaks and valleys less erratic, I’ll know I’m starting to heal — even if I don’t feel consistently good every day.

2. Tongue appearance. Traditional Chinese medicine looks at the tongue as an indicator of what is going on in the body. When it swells, it gets too large for the mouth and teethmarks appear around the edges. My tongue is enormous today, a swollen muscle, as if sprained (and not from talking too much! for I was alone all day). Yesterday it was closer to normal. I was admiring how nice it looked.

A groove down the center of the tongue also indicates how the body is doing. As the body heals, the length and the depth of the split reduce. My acupuncturist used to look at my tongue and say "Getting better. Split not so deep."

To be a little less subjective, I decided to measure the split by placing a card over my tongue and marking the beginning and end. Then I hold it up to a ruler: about ½ inch. The tongue changes rapidly, but I’m going to look at it regularly to see if the crack gets shorter over time. (By the say, Dr. Chi has a short book, with pictures of tongues, talking about the meaning of other signs, such as coating and color, which can be ordered through Chi Research.)

3. Fingernails. The same Dr. Chi teaches about fingernails. When I met him at an ANMA conference in 2003, he noticed I had lost the moons in all but my thumbnails. Now I’ve regained them in the index and middle fingers, although they’re not very big or very white. But at least I know, despite this relapse, that my body is functioning better than it did in 2003. Something good to kindle the flame of hope.

Hunger calls; it’s almost 6. Next time I’ll post Rich’s analysis of my case as some people on the Yahoo Yasko group suggested. Be well.

Monday, January 12, 2009

The blue vitamin: B-12 (cobalamin)

My new protocol (Rich Van Konynenberg’s simplified Yasko) calls for 2-4 gm daily of sublingual B-12 in a form that is difficult to find: hydroxycobalamin. I have found only two suppliers. This particular form has the beneficial property of scavening free radicals and toxins. It converts easily to the active form, methylcobalamin, if the body does what it is supposed to do with methyl groups.

The least expensive and therefore most common form of supplemental B-12 is cyanocobalamin. But the cyan has to removed in the body, and then the cobalamin has to be attached to a methyl group or an adenosyl group for the vitamin to become 'active' and useful. So those of us with methylation issues don't benefit from the inexpensive cyanocobalamin. I know this from experience: I took tons of B-12, including shots, and never saw a change in lab tests showing an increased need for this vitamin.

Now the universe is playing cat and mouse with me. I wait and wait for the hydroxy B-12 to arrive, the product I am supposed to start 2 weeks after the other products. Two weeks have come and gone. The bottles I ordered a week before Christmas arrived at my mother’s after I returned to Ohio. The bottles I re-ordered early last week were mis-routed in shipping. Today a package arrived with everything I’d ordered except the B-12.

Disappointment leads to anger. I want things to go my way. That’s how I envision the universe supporting me.

When I stop fighting reality, it occurs to me that there could be a beneficial reason for the delay. I remember a story told by an Indian swami of a man who angrily complained he was prevented from boarding a ferry by officials who misidentified him as a suspect. Later they learned the boat had capsized. Perhaps I should experiment further with the methyl B-12 I already have at home?

I cut a tablet into 6 pieces and take one of them – a dose of about 833 mgs, one third the amount I took last week that kept me from sleeping. (See my post of **) I don’t notice anything until the evening. Then I find...

• I am not starving for dinner even though I had a small lunch.
• I have significantly more energy doing my yoga practice. I do challenging poses I haven’t tried in a long time with little effort.
• I am not cold for once. Hurray!
• I am less stressed than I was earlier (about techno-computer things that aren’t working properly).

I am ready to make a small amount of methyl B-12 a part of my regimen if I sleep decently tonight. Rich wants my body to make its own methyl B-12, though, which will be great, if and when it happens.

Is it the extra methyl groups, or the cobalamin that is helping? We’ll find out when the hydroxy B-12 arrives.

Wednesday, January 7, 2009

Too Many Methyl Groups Spoil the Sleep

Methyl groups, those CH3 radicals attached to complex molecules used in so many bodily functions, are transferred from one molecule to another in a process called methylation.

I knew something was awry with my methylation when I first started looking into Amy Yasko's work in late 2006. I sent in a blood sample to test my genetics, and found that I had quite a number of blips in the code. These blips are called SNP's (pronounced 'snips': the letters stand for 'Single Nucleotide Polymorphisms), which is a fancy way of saying that in the DNA sequence of four amino acids, one of the amino acids that is normally found has been replaced by a different one. The consequence is that the biological process controlled by that particular gene either moves too quickly or too slowly.

Imagine you are on a crowded highway and one car is going at 45 mph while everyone else is traveling at 65. It wouldn't take long before there was quite a pile up of cars waiting to get around the slowpoke--not to mention quite a bit of useless noise from honking, cursing, braking, and revving engines. This is what happens in the body when there are, say, ten steps in a process and one of them is way too slow.

Now take the opposite case: a car moving at 85 in a 65 mph zone. A few drivers will get behind it and speed along too. The rest will move over to the right, tisk tisking and shaking their heads. They won't try to keep up with the speeder! Ten miles later, it's not a great surprise to see the speeder pulled over by a traffic cop, or an unfortunate accident. This is analogous to what happens in the body when one step in a ten step process goes too fast.

Two days ago I decided to take Vitamin B-12 in a form called methylcobalamin. I decided on this for two reasons: [1] my backordered hydroxy B-12 got delivered to my Mom's house the day after we left and I'm supposed to start the B-12 two weeks after starting the other supplement; [2] I had a full bottle of methyl B-12 at home.

I took a full 5 mg dose on Monday. I took a half pill on Tuesday.

Would it surprise you to learn that I slept listlessly both nights? was up to 2 am the first night? had a lot of energy the 2nd night but managed to fall asleep close to midnight?

The methyl B-12 delivers a whole pile of extra methyl groups and speeds up the methylation, just as SAM-e does. It felt great to have extra energy all day and in the early evening, but somewhere further along the journey (a few miles up the highway) was an accident or a roadblock. No zzzzzzz.

I lay in bed this morning, wondering what was going wrong, when it all fell into place. I had started taking methyl B-12 many years ago. I think I might have read something about it in 2003 or 2004. In 2005, Dr. Majid Ali put me on B-12 injections, and when I complained about the preservatives in the cyanocobalamin, he said I could take the sublingual methyl B-12. So I did, at least until sometime around 2008, when I switched to the Intrinsi B-12 recommended by Rich Van Konynenberg for the simplified Yasko protocol.

During a good part of these years, I had very poor sleep. I did a sleep study which, for over $2000, confirmed what we already knew: that I was not going into deep sleep and was waking 100 times throughout the night. I tried every medication available. I tried nearly every natural remedy I could find (herbs, minerals, homeopathics, GABA, melatonin) Some sleep meds helped the first 4 or 5 times, the others caused problems from the start, but all ended up with the same result--palpitations and a paradoxical hyper-charged feeling that kept me up all night.

I have to say that I often wondered if I was getting what I wished for. All through my graduate student years and throughout my 12 years in academia, I wished I could get by on 4 hours of sleep so I could have more time to write and do research. Now, with this CFS-induced sleep disorder, I had time on my hands and energy to work during the wee hours of the night! But as everyone with CFS will agree, a poor night's sleep makes all the other symptoms worse. It's not a fair trade.

(By the way, Betaine HCl, used to enhance digestive acid, is also a methyl donor.)

I think about taking 1/4 pill, 1/8 pill, 1/16 pill. I'd like to have just a little more of that extra energy but not enough to stay up tossing and turning all night.

Rich van Konynenberg has found that, by taking a very low dose of the active metabolites needed for methylation, many people with CFS start to repair their body's ability to methylate. I suppose the conservative thing to do is to wait for this to happen. I've been tired for 15 years. In 3 months, I will retest methylation to see if my numbers have come closer to the normal range. What's another 3-4 months in the big scheme of things?

Sleep well,
Janis

SAM-e is not my friend

Three days later (written in December):
I haven’t slept decently for the last 3 nights. The first night I assumed travel disrupted my routine. The second night, awakening at 4 am, I chalked it up to a strange. Last night I couldn’t sleep at all; Ambien only made it worse. So I read, wrote, surfed on the internet, and periodically returned to bed to see if the Sandman would visit.

Bad nights catapult me into detective mode. I think about everything different since Monday. I made two more changes in my supplement regimen. Ooops! I know I should do one thing at a time. But I am impatient to see if this new protocol will produce results.

One change was cutting the NAC (Allergy Research Group) in half, a supplement I must eliminate because it contains 300 mg. of trimethylglycine (TMG). Next week I’ll be starting a different supplement with 100 mg of TMG and I’m not supposed to have too much.

The second change was adding SAM-e. I ordered SAMe after I got my test results from the Vitamin Diagnostics Laboratory methylation panel. SAMe was rather low. Since it’s often used to treat depression, and I had tried it in the past when I was depressed (2002 or 2003). It didn’t help or make things worst—nothing. Rich said he used to include it in the protocol, but found that many people could not tolerate it. I was pretty sure I’d tolerate it fine because of my previous experience. And so, as David and I were leaving for our trip, I ran into the house, grabbed the bottle from the refrigerator, and impetuously popped a capsule in my mouth.

Now I have to figure out whether the increased SAMe or the diminished NAC is creating the problem. I won’t take SAMe again for 3 days and I’ll continue taking the ½ pill of NAC through Saturday. That should make things clear.

Still, I can’t resist doing enough research to understand what might be happening in my body, I look at the charts showing the steps in the methylation process, but I don’t understand how any of them affects sleep. Then I remember reading that SAMe is used in making catecholamines, which are the stress hormones, adrenaline and noradrenaline (also known as epinephrine and norepinephrine). I have a hunch SAMe has increased the production of these energizing hormones too rapidly. I remember two other unusual symptoms that arose in the last two days – excessive urination and a feeling of being bloated--both symptoms common with stress.

On the internet, I find an article by Hara Marano about SAM-e’s role as a methyl donor, giving up its methyl group (CH3, one carbon and three hydrogen molecules). http://www.psychologytoday.com/articles/pto-20030301-000002.html Marano writes: “SAM-e is present in every cell of body and brain. It plays a pivotal role in cellular metabolism, fueling more than 100 different reactions. It activates such big-time biochemicals as the neurotransmitters serotonin and dopamine and increases the fluidity of nerve cell membranes to make neurons more responsive.” Now my hypothesis is that taking SAM-e is raising my production of dopamine, which I know from tests of urinary neurotransmitters, tends to be high. Dopamine is a feel-good, feel-energized neurotransmitter – not conducive to zzzzzzzz.

Next, in a Wikipedia article on SAM-e, I learn it is involved in over 40 different reactions in the cell and, more importantly, that a common adverse effect is INSOMNIA. I have identified the guilty culprit. No more SAM-e for me.

A week later:
Within a day of stopping SAM-e, I started sleeping again. The only lingering problem during the entire 10 days visiting my Mom was the almost complete lack of peristaltis. Fortunately, this returned the day I got back to Ohio, January 1, 2009.

HAPPY NEW YEAR TO EVERYONE!

Monday, January 5, 2009

Post consult blues and Byron Katie's The Work

Strange. Since my consult with Rich van Konynenberg, I've been feeling pissed off. Not exactly angry but irritable, like I'm carrying a chip on my shoulder, like everything is too damned much trouble. Every now and then a smile washes over my face, evaporating without a trace of its presence. This is unusual for me. After years of spiritual and psychological work on myself, I accepted being ill and don’t complain about it. I look for joy and meaning in my life. What happened?

With this illness, I immediately think that changes in my supplements could be affecting my mood. On the advice of Rich Van Konynenberg, I made three changes.

[1] I cut the dose of VIBE™, a liquid multi I’ve been taking with great results for 3-4 years, because Rich says the folic acid in it (400 mcg) will interfere with the more active metabolites I’m taking on this program. I love the way VIBE makes me feel. Although it has no stimulants, it always leaves me feeling energized. The company hype is that the ionized minerals in it are energetically charged to maximize absorption. Ever since I started taking it my bowels have worked normally and, if I take a dose in the late afternoon, it gives me the energy to do yoga. I’m going to miss this taste of normalcy. I packed up three unused bottles and mailed them back to the company, pissed off that I had to take the time to pack, pissed off that I had to pay for shipping. But if I had kept them around, it would have been too much of a temptation. I don’t like having to give up more. There is already so much loss with this illness.

[2] I started taking phosphatidyl serine complex on a daily basis. In the past, I’ve found it helpful to reduce palpitations and other symptoms of excessive stress hormones. Phosphatidyl serine, choline, and ethanoloamine complex helps the body repair the damage to cell membranes from oxidative stress.

[3] I cut the dose of Folapro and Intrinsi B12, the supplements with the active forms of folate. Rich’s protocol calls for ¼ tablet of each. I had been taking a full tablet over the past 5-6 months since I found the tablets hard to cut with a pill cutter. My friend Holly’s doctor put her on a full tablet and I figured, what the hell, I’ll take a little bit more too. Rich told me that taking doses higher than what the body needs usually creates new problems, and that everyone who takes too large a dose detoxifies so rapidly that they need to stop the program. That’s what happened to my friend Holly. So I made myself a powder by grinding 4 of each tablet in a Braun spice/coffee grinder, and then mixed with a 16-day supply of the phosphatidyl serine powder. I take a rounded ¼ tsp. daily.

Are these changes are messing with my good-mood neurotransmitters? Or am I just being a bah-humbug pre-christmas grouch?

On the long drive from Gambier to the Washington DC area, where we are traveling to visit my mother for the holidays, I cajole David into listening to Byron Katie’s Your Inner Awakening. “Maybe Katie will say something that will help me give up my grumps,” I suggest when he groans in protest. “When she says something that annoys you, stop the CD player and we’ll talk about it.”

It turns out to be the best part of our trip. We get into some really good discussions. By the end of the ride, I realize why I’ve been pissed off all week and it’s not from the supplements. It’s my mental resistance: I’ve had too many experiences in the last 14 years with medical people telling me that a treatment will make me better and “certainly won’t hurt” only to find myself much sicker at the end of the “treatment’ than I was at the beginning. Right now I can’t think of one single product a medical professional has recommended that ever helped me the way it was supposed to! A few things (initially recommended by professionals) eventually helped after my body reacted paradoxically, I educated myself and then found my own way. The Sabre Sciences program to balance adrenal and sex hormones was like this; I ended up taking classes to become a natural endocrinologist in order to understand how to adjust for my hyper-sensitive body. I realize I don’t want to do that again. I want somebody else to do all the research and all the adjusting for me. Waaah, waaah, waaah! I want to be a little girl, have Mom kiss my boo boo and make everything all better. Isn’t that why I forked over so much $$ to Rich?

Something David says helps me go deeper. He says he doesn’t like anyone telling him what to do (that’s one of his objections to Katie’s CD). I realize I’m the same way. I notice that David is projecting his thoughts onto Katie, whose very message is that we each must find answers for ourselves, that we’ll never get where we want if we blindly follow others. It’s an aha moment for me: I’m obviously projecting too! I’m making Rich into an authority figure and then feeling like a kid who has to obey her parent. Instantly I realize, this is absurd. I value Rich’s opinion because he’s been studying this material for over a decade, because he has a solid academic science background, because he has advised numerous people with chronic fatigue, all of whom have quirky, hypersensitive bodies like me. No one is making me do anything. I can do what I’ve always done: study, learn, understand -- until I feel like I have control. But I don’t want to study the complicated biochemistry of methylation for the next two years, reading and re-reading thousands of posts on the Yasko program. I’m ready for a new way. I’ll use my resistance like a sailor who tacks into the wind, finding a place between full surrender and fear.

(NB: Written December 23, 2008 but posted 2 weeks later)

My two most disabling symptoms

I look fine to most people, and since The Worst Illness Ever is called chronic FATIGUE syndrome, people assume the worst of this illness is being tired. It’s not

My most disabling symptom is dysautonomia, a big word for a dysfunction of the autonomic (outside of voluntary control) nervous system. It’s one of those things that regulates heart rate and blood pressure, among many other things. Mine gets mixed up. When I stand up, the blood pressure doesn’t accommodate to keep a steady supply of blood going to the head. As a result, standing is problematic. Sometimes I’m fine standing for 10 – 15 minutes, other times I have to stop in 5, while still other times I’m amazed to find myself doing things for 30 or 40 minutes. It’s truly a crap shoot: I never know which way the dice will fall. It makes it hard to plan anything more complicated than taking a shower.

When I was at my worst in the fall of 2007, even sitting was triggering the kind of dysfunctional accommodation known as POTS, postural orthostatic tachycardia syndrome, where the body tries to increase the blood pressure by increasing the flow of stress hormones to raise heart rate. What happens is that the pulse goes up, my heart starts pounding loudly (ba boom, ba boom) but the blood pressure still goes down. When I lie down, I hear my heart echoing in my head (ba boom, ba boom), and almost I want to scream in frustration.

In the distant past I could alleviate this reaction by doing upside down yoga poses (bridge, legs up the wall, shoulder stand, head stand), usually reversing the dysfunctional reaction after an hour or two, and then having to stay off my feet for 2-3 more hours. Now yoga doesn’t make much difference, but doing about 15-20 minutes of weight training—no more--does seems to help. If I get a bad reaction, weight lifting or a yoga pose that requires quite a bit of muscular exertion (like a back bend) reduces the severity of the reaction.

My second most disabling symptom is an inability to do aerobic exercise. I miss walking or biking outside, but when I tried to get back to it a year after my relapse, I came down with respiratory infections the next day. After this happened about 15 times, I saw the pattern (duh!).

It makes sense to me only because high cortisol (a stress hormone released in exercise) suppresses the immune system. It’s another sign the autonomic nervous system is not regulating properly, and the stress hormones are going bonkers. Staci Stevens has argued that nearly everything we do repetitively requires some modicum of aerobic activity, like talking, walking, thinking. I find that after an hour or two of talking to friends, or being pushed around a museum in a wheelchair, I feel odd, as if my brain is depleted of what it needs to function properly. I feel sleepy. I start yawning. I can’t concentrate. My eyes don’t focus. I often have to take a long nap. It’s a disabling symptom because it keeps me fairly isolated and close to home. I used to be an active professional, traveling to Rome and Paris and New York several times a year. Fortunately I live in a small town where I can get to a friend’s or a restaurant in 5 minutes with almost no hassle.


(NB: I wrote this post just before Christmas, 2008 but was unable to post from my Mom's)