Tuesday, January 25, 2011


I've thought of writing an update about 20 times, but always chose to do something else. The longer I wait, the more daunting the task becomes.  I finally decided, after the last comment to my Oct 15 post by Anonymous, that I'd just go ahead and write something.   I won't try to cover everything that has happened or is happening.  Since the  unfolding of my journey is about as interesting as a snail shell, and certainly as convoluted and slow moving, it makes sense to pick out some of the highlights.

October:  I was incredibly busy when it turned out that the job of principal investigator for the CFS Trivedi study fell into my lap.  It wasn't supposed to happen this way. I thought I'd find the participants and then become one of them.  But life unfolds in strange ways, and as the demands on my time rose, my ability to meet them rose to the challenge.

Actually, my brain and my fingers rose to the challenge while my body built up tension and my sleep deteriorated.  By the end of the month I was feeling tired and sleepless even though there were  no longer demands on my time.

Reassessment led to wonder if the new supplements Dr. Vinitsky started me on in early October were counterproductive.  They sounded so good on the company sales pitch; and the doctor --that authority figure--insisted they'll help me recycle amino acids and raise my pitifully low numbers on urinary amino acid tests.  I stopped them anyway.

Bingo.   Instant relief --e.g. sleep, less stressed out feeling, calmer mind; but it took three weeks before I stopped waking 3-5 times at night with a strong urge to urinate.

(The offensive supps, in case you are curious, were a combination of AKG and l-glutamine (by Perque) and an amino blend with 30 years of testing to prove its superior absorption called MAP or SON.  The reesearch in convincing.  Dr V argued I couldn't tolerate them due to the amount of phenylalanine, but I'm taking phenylalanine i n another combination and doing okay with it.  So we agreed to disagree.  And to those who know lots about supplements, yes, I do know that Dr. Amy says l-glutamine and AKG can cause neuro-excitability.  I knew that, but I was bold, or stupid, since I was feeling so much better.)

November:  started with a cold, which led to me to realize that I needed to cancel surgery for dental implants the following week.  I went ahead with the gum transplant surgery part of it because the filling that was scheduled to be removed the morning of the surgery fell out on its own 3 days early.  I either had to get a new filling or get the surgery.  Although my gum line now looks great, the combination of Lidocaine, epinephrine, and my body's own healthy inflammatory response caused lots of sinus drainage, sinus congestion, and eventually a  sinus infection.  aarggh!  At this point I got quite weak.

Sometime during the month, I found myself thinking "I am relapsing."  In the past this thought would have filled me with dread bordering on panic.  And that dread-bordering-on-panic would have catapulted me into searching frantically for things to take, or for practitioners to wield their talents in the hope of stopping the relapse.

Nevermind that I have never been able to stop or slow a relapse in the past.  Three times I had recovered to within 10% of where I was before getting ill, and three times I have fallen downhill until I reached a bottom about 10 or 20% lower than before.   With this kind of past experience, only a committed optimist or experienced denialist would believe everything would work out fine.  In the past, I would have fed my dread and fear with hundreds of 'proofs' that life was terribly unfair and that I would never get well.

Not this time!  I noticed my negative thoughts but I also thought -- maybe this is something I have to go through.  or maybe I'll feel better again after I get rid of this cold.  I noticed options and alternatives and consciously decided to choose the most positive ones, the ones that would keep dread at bay and hope visible on the horizon.

I directly attribute my ability to stay calm in this situation to the increase in consciousness from my work with Mahendra Kumar Trivedi, and my healing work with a talented shaman I met at his retreat named Linda White.  I've been working on maintaining equanimity for years through my yoga practice, and I actually did quite well when I went into eye surgery in 2006.  But I could never do it in the face of ME-CFS relapses that physiologically change my brain chemistry.  So it is truly a delight to experience calm in the face of turmoil, as I did during the months of November and December.

December:  another month of feeling sick, of watching my physical stamina deteriorate as the cold moved into my bronchia.

In a brain-fogged moment, I washed a contact lens down the sink.  Since I only have vision in one eye, now I could not see well enough to drive with my old lens, a weaker prescription.  The oculist ordered a new lens but for some reason he never explained to me (he is probably blushing in embarrassment now) said oculist decided to order a new lens with the old prescription.  Oops!  Two weeks later I am still unable to drive.

Consequently, I was housebound for most of December.  Yet in my quiet state, despite occasional struggles with the demons of self-pity and fear, I started to feel transformation and happiness.  Isolation became a welcome experience.  Looking out over the white fields and brownish grey trees from the warm interior of bedroom and office, I felt comfort at not having to do anything or go anywhere.  I honored my inner urges and no longer pushed myself to do, letting the bed remain unmade and the laundry pile up until no underwear was left in my drawers.  Even daily hatha yoga practice, which has nourished and sustained me since the onset of my first  ME-CFS relapse in 1994, fell away.  I would stretch for 5 or 10 minutes on the floor and feel tired or unmotivated.  I started to look more like my Happy Buddha statuette -- flabby belly and breasts, big smile.

At the end of the month, I saw Dr. Vinitsky again, got more tests, and learned I have low MSH (a hormone that is a master regulator of all hormones).  I also learned I have one of the genes that makes me susceptible to biotoxins like mold, Lyme, dinoflagellates, and MARCons.  Mold has clearly been a provocative agent in my history, since I got ME-CFS when I moved to Ohio where, in the years before 1987, I had frequent allergic attacks to the mold in buildings.

Dr. V wanted me to go back on the Endura-Pak and increase my B12/Folipro dose.  I looked at him suspiciously, but he was not joking!!  He really seems to think that if I get methylation working properly, I'll be able to tolerate that stuff!

(My hunch, however, is that no stimulation is good for me right now.  If XMRV turns out to be causative, then we'll know why, and the research CAA is supporting by Dr and Dr Light has identified excessive adrenergic receptor activity in ME-CFS patients during periods of activity.)

While Dr. V encouraged me to increase supplementation, my inner voice told me to stop taking B12 and Folipro.  I heard this voice most strongly during the Trivedi blessings and immediately afterwards.  I didn't honor it. Instead, I acted pm the knowledge of my head and the authority of my doctor to plod along with his program, resolving to cut back, or to stop at some time in the future.
On December 31, I listened.  I stopped taking B12 and Folapro.  Less then 12 hours later, my sinuses and chest were clear.  I enjoyed a lovely New Year's eve with my mother and her friends.

January:  I've continued to feel better. After a week free of B12, my inner voice told me to stop all my supplements.  I did so for 5 days and continued to improve.  My head told me you need B vitamins. You need calcium, yada yada. I started up again, felt okay for 2 days, then felt worse .

This dance of on and off has been going on now for 24 days.  Mostly, the off is taking the lead.  I am down to one prescription med (half dose of HGH), some balanced essential aminos, one capsule of horsetail to pull out the aluminum (which was HIGH on the hair analysis done in late October), and some Vitamin C and magnesium.  I've never taken so few supplements since I've gotten sick and I confess:  I love it.  So freeing.  So easy.  Nothing to remember to do.

My capacity to exercise has increased some since December, when it had bottomed out.   I can do yoga for 45 minutes or so and enjoy it, but I'm now getting hip and knee pains, which makes many of the poses less enjoyable.  I've gone to the gym 4 times and done low weights with no noticeable PEM (post-exertional malaise) the next day.  But when I did 20 minutes of weights on Sunday, plus yoga, plus a bit of dancing around the kitchen because I was feeling inordinately happy and energetic, I woke Monday morning feeling tired, grouchy, and unhappy.

Today I feel much happier, although not nearly as energetic as I did on Monday, so at least I can say I am recovering from PEM more quickly than in the past.

The most significant physical change in the past week is that I've been forgetting to nap or rest during the day.

The most significant mental change, and the reason I haven't been blogging, is that I've been trying my hand at fiction writing.  What an incredible learning curve!  I've written some pretty shitty first drafts of scenes for two novels, mapped out the big outlines of two plots, and edited a few of those first drafts into something I wouldn't be embarrassed to share with a critique group.  It's so much fun!!

When I get started writing, I don't want to stop.  I'm thinking about the next line, or adding a comment, or learning something new about a character.  By the time I've stopped writing, I'm either sated with computers or too tired to do anything that requires sitting up and thinking.  Hence, I've ignored the delights of sharing with my e-friends and the ME-CFS community.