Tuesday, February 16, 2010

Still improving, slowly

Low motivation since my last post....part due to distractions, part due to fatigue.  Sleep has been crazy.  Uneven.  Erratic.  One night not even 15 minutes; another from 5 am to 11 am; a third waking every hour.  After a set of nights like these, I am unmotivated to write, to exercise, to do anything that takes effort.

Last night was a good one -- over nine hours, and with sleep so deep that I awakened not remembering it was Monday!  I could use a steady diet of nights like that.  I hope it comes to pass before long.

Despite this erratic sleep, I am getting stronger.  I feel it especially when I do yoga.  For awhile there, my yoga practice consisted of lying on my belly or my back and moving a limb here and there while breathing.  Recently, I've had energy to do standing poses and even arm balances (although my core strength is diminished and I can't hold them yet).  A few times I even found myself doing Upward Facing Bow (Urdvha Dhanurasana) which I used to avoid as much as possible.  It speeds up my heart rate and breathing for a few minutes, and it feels so good.  My heart rate returns to normal and I feel super relaxed.  Ummmmm...

So to sum up, the many cardiac problems I've had for years have abated significantly.  This is the area where I've made the greatest recovery.

I'm seeing the first signs of my brain improving too.  My stamina for mental work is significantly better, but I didn't realize it's been improving.  Although I have several creative writing projects, I just haven't been motivated to work on them because I found myself thinking that I'd just have to stop in a day or two to go to the doctor or deal with another health crisis.   So I was trying to discipline myself to do all the unpleasant organizing and financial tasks I'd put off for months.  Finally three nights ago at 2 o'clock in the morning, I opened a program and set of files I've had on the back burner for twenty years.  I batted out a translation of a chapter in an unpublished Italian manuscript treatise and had a lot of fun!   I was amazed to discover that I could focus on it for two hours straight.  The next day, I returned to that same project (the subject of my dissertation), handled some stressful computer problems that, a month ago, would have defeated me, and went onto my yoga mat to de-stress.  It's definitely a miracle.  I never thought I'd be able to return to this book project, yet here I am--3 days in a row.

Lab tests also confirm improvement.   A plasma amino acids from Doctor's Data showed that, two months after stopping amino acid i.v.'s, I still have all the essentials in a good range.  In many ways, the results are better than my previous test where methionine was quite elevated, for all the branched chain aminos -- the ones used as building blocks for muscle -- are in a much better range.  Only three aminos were high: glycine, tryptophan, and proline.

Glycine was high on the previous test.  And since that looks like I pattern, I decided to find out what it does and what high glycine might indicate.  Here's what I learned.

1.  Glycine is excitatory
2.  it converts to serine, another non-essential amino used to make cell membranes
3.  some specific usages, according to Lord and Brailey are:
heme biosynthesis for blood formation, collagen synthesis for growth and repair, acid formation for digestion, glycine conjugation in liver detoxification, and direct neurotransmitter action in brain function, such as potentiating NMDA receptors.
Now I am blaming my poor sleep on my high glycine and I am wondering why it is high.

My first thought is that my body's intelligence is making a lot because I am doing a lot of detox and rebuilding.  But Lord and Brailey state that increased demand usually leads to low glycine levels.

A second possibility is that I'm not breaking it down properly through the GCS (glycine cleavage system) which requires mitochondrial enzymes that use pyridoxal phosphate (e.g. B6) and tetrahydrofolate (a form of folic acid).  Ah, the methylation pathways again -- still causing trouble, still unbalanced.

I have been taking B6 as P5P (20 mg) and small amounts of tetrahydrofolate as 5-MTHF (Folapro) on the Simplified Five protocol developed by Rich Van Konynenberg for ME-CFS.  Perhaps I am not taking enough?

The third possibility is that I have a genetic polymorphism in the GCS (glycine cleavage system) which makes that enzyme system less effective.  If this is the case, increasing B6 and folate will not reduce it much, as seems to be the case.  Aaaaaagh!

Niacin and carnosine are also recommended to deal with this problem, so I started l- carnosine Saturday.  I felt great all day.  I was amazingly warm at night.  The next day, within a half hour after taking it again, my muscles burned as I climbed a flight of stairs.  And then I crashed.

The pathway to making glycine includes sarcosine as an intermediate.  This is also high.  In fact, it is higher than it was last time I tested, but only by a small amount (from 0.72 to 0.75 micromoles/100 ml.  Sarcosine is also known as n-methyglycine (we just can't escape those methylation issues!) and its conversion to glycine requires the removal of a methyl group.  When there are extra methyl groups around, they are stored as sarcosine.

Lord and Brailey write: "In autistic patients, elevated sarcosine is a sign of exacerbation of methylation difficulties due to blockage in the release of homocysteine."
Check: homocysteine is not showing up on this test in a measurable range.

Why isn't methylation working after a year on methylation support?

The last piece of information I have about this is that alanine, a closely-related amino acid, also requires B6 for its metabolism.  When B6 is insufficient, it rises.  The enzyme ALT (alanine amino transferase) is abundant in the liver and is used to monitor liver disease.  Alanine carries nitrogen from muscle to liver where its skeleton is converted to glucose.  ALT has been high for months -- for a while it was 400% too high -- and now it is just a little bit too high.  But my plasma alanine is right smack in the middle of normal.

Do I need more B6 or not?  Dr. Yasko generally has people avoid B6, except in very small doses, because it tends to be excitatory.  How I wish I could figure out what to take!

Yasko recommends supporting the enzyme SHMT which involves using serine to move a methyl group around.  I have begun using a spray she developed called SHMT support which contains B-12, folinic acid, and nucleotides. So far it is not making me feel weird or wired and I am hopeful that, in a few months, glycine will normalize.

In order to get a more complete picture of what is happening downstream of the blood, I sent off a sample for a urinary amino acids last week.  And, when Vitamin Diagnostics Lab is up and running again, I might re-do the methylation panel and get a more complete picture of what is happening in that very important cellular process.

'Til my next bout of inspiration.....Enjoy the snow which keeps coming and coming and coming here in central Ohio.


  1. Janis, do you still have chronic infections that dr is aware off if yes what kind, viral, bacterial ot both? Have you tested lately your ebv, coxsackie, hh6v etc? whay about your gut?


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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.