Friday, February 19, 2010

Bowel indicators and biofilms

I have a long history of bowel issues starting from childhood, but the first time I actually got tested was in 1997.   A doctor who ran a business called Intestinal Success showed up at a workshop on color and vision that I was attending with Jacob Lieberman.  After some urging, I agreed to do a Comprehensive Stool Analysis.  Boy was I surprised at the results!  I had parasites, fungal dysbiosis, and bacterial dysbiosis.  Among the bacteria making hay in the sunshine of my toxic bowels were some species that, my doctor remarked, he never sees in anyone but the most debilitated people.  I looked (and still look) so strong and healthy to most people that even the doctor was surprised.

Ten years later, I had a clean CSA.  No strange, unwanted inhabitants.  Good indicators of adequate digestive enzymes and acid.  I was feeling FABULOUS, although I still wasn't quite recovered enough to go back to work.  But I was browsing the want ads and thinking of a strategy....
Still, there were indicators on other tests that all was not well down in the bowel.  Organic acid testing looks at 30-40 acids in the urine, depending upon the lab used, and several of those acids are classified as indicators of gastrointestinal health.  Ditto for urinary and plasma amino acids.  These tests indicated continuing issues with fungal and bacterial dysbiosis.   I figured there must be another reason for those results  (genetics perhaps?) and ignored them.  After all, I was feeling FABULOUS.  And for the first time in many years, I didn't care about testing, blogs, or ME-CFS forums.  I wanted to live another life - the life of a normal person, a life with friendships and parties, with walks in the countryside and bike rides, with writing projects and a house emptied of the piles of junk I'd accumulated during the past 6 years of relapse.

I haven't retested with a CSA since my relapse in October 2007.  I decided instead --now that cardiac symptoms have abated to a great extent -- to use the gastrointestinal markers on organic acids and amino acids as my guide.  For a finally learned something that makes sense of the discrepancy between stool tests and systemic fluids:  biofilms.

Biofilms are colonies of microflora that hide from the immune system under a film of minerals and polysaccharides.  Often they go into a cell-wall deficient state to make this possible.  Apparently, according to my friend in the Biology Department at our local college, they've been a hot topic in research for several years.

Dr. Usman first noticed that many of her autistic kids had a situation similar to mine: high urinary markers of dysbiosis but clean stool.  She hypothesized this was due to biofilms of gut organisms, and developed a protocol to trick the sneaky critters and catch them in their elusive game.   Her protocol consists of three parts:

  1. enzymes and EDTA on an empty stomach to break up the biofilm
  2. a half hour later, antimicrobials, both herbal and prescription
  3. an hour later, binders to mop up the toxins released

I researched biofilms and found that many other physicians had adopted the basic idea, some changing the timing, some the recommended enzymes, antimicrobials or binders.  I decided in early January to adopt a protocol.

The enzymes were the easy part.  Klaire Labs has marketed a product called Interfase which has the recommended combination of enzymes designed to break up biorfilms.  Interfase Plus also contains a small amount of disodium EDTA.  Since Dr. Yasko and others expressed some concern about this form of EDTA, I decided to order the EDTA chelator complex which she offers on her website. This product also contains garlic and malic acid.  Garlic is already a mild chelator and antimicrobial, and malic acid is particular good for binding aluminum.  I didn't see how either could hurt me.

The antimicrobials proved more challenging.  Back in Florida, Dr. Philips had given me a custom formula from Monastery of Herbs containing a slew of stuff ranging from wormwood to turkey rhubarb.  I hadn't done well with it, and although I was willing to slog through the symptoms of cramps and insomnia, when I showed up for neural therapy, my doctor remarked on how strange it was that my bladder meridian was stressed.  By the 2nd visit, it occurred to me to have him test these anti-microbials and, as soon as I got them out of the picture, I recovered.  Now you can understand why it took me 10 years to clean up the CSA.

Two months later, feeling stronger and transformed, I tried them again on the biofilm protocol.  Two or three days later I went in to see Doc.  "Now that you're stronger, we have to get you to hold between treatments," he said, and I knew it was the Monastery of Herbs combination that was sending me backwards.  I stopped them again.

I suppose I could try one herb at a time, but I've neither the patience nor the resources for that.  So instead of antimicrobials, I'm putting in positive things -- pro and pre- biotics.  Lactoferrin supports the colonization of healthy bacteria in the gut and robs iron from the pathogenic critters.  Saccharomyces boulardii competes with clostriadia difficile and other clostridia species that are apparently enjoying themselves at my expense according to the high levels of DHPPA consistently appearing in organic acids testing since 2005.  Lactobacillus GG, a unique strain of L. rhamnosus, is particularly good at inhibiting clostridium, reduces staph and strep in nasal passages, removes toxins from cyanobacteria (BTW: ciguatera toxin has been found in > 90% of people with ME-CFS by researchers in Hawaii), supports liver healing, and increases SIgA.  This seemed custom made for me so I purchased Allergy Research Groups formulation of it called Lactobacillus.  Then, I added Phloe, another ARG product, which is an extract from Kiwi fruit that has been shown in two human trials to increase gut motility, reduce flatulence, and improve gut microflora.  Yesterday, Doc sent me home with a liquid Acidophilus product that contains 250 billion per teaspoon.  So now I have a full pharmacy of health-inducing bowel products.

For the mop up part, I'm doing chitosan and buffered C -- when I remember.  That's the hardest part of this protocol!

No FABULOUS results yet.  The plasma amino acids sample of Jan 19 was drawn before I started the biofilm protocol and the urine amino results haven't come in yet.  I'd done colonics for a week before taking the blood sample, and my results were worse than 2 months previous, even though beta-alanine (a marker of fungal overgrowth) had come down.

Another marker, beta-aminoisobutyrate, was much higher, and since it has been consistently elevated for the past 3 years, I decided to research it.  What amazed me is that it is not just an indicator of bowel bacterial overgrowth.  It also, perhaps more importantly, indicates some metabolic issues involving a class of molecules called pyrimidines which are connected (through folinic acid) to the folate and methylation cycles.  This substance, beta-AIB, gets elevated when a liver enzyme that converts it to pyruvate works too slowly.  And since my pyruvate has shown low, low and lower since starting this test since 2002, I am guessing that I am one of the many people with a polymorphism in this liver enzyme (hepatic beta-AIB-pyruvate transaminase.

So I called the lab.  "What's the evidence for elevated beta-AIB as a gastrointestinal marker?" I asked.

"We see it often when there are bacterial issues," the customer service rep responded.

And so, onto the list of things to explore further -- when I have time and energy.

In the meantime, I'm going to continue with the biofilm protocol for another month and then redo the MAP through Dr. Yasko to see if my GI markers for clostridia have come down.  It's more than a marathon.  It's an odyssey.

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.