1998.04/17 Chronic Fatigue Syndrome Update

Well, after the horrible last year things are finally looking up as far as my
medical condition is concerned.  I've found some pills which have given me
back a decent energy level, and after a few months of semi-stability I'm
hopeful that I can resume a reasonable lifestyle again.

INITIAL SYMPTOMS

The CFS manifested itself as periodic episodes, each one lasting intensely
for a 1-3 days and lingering for a couple weeks.  They came about every 8-10
weeks, and there were no triggers than I could discern.  During the episodes
I would have:

* Extreme enervation.  Sleeping 16+ hours a day.
* Large goo production in the nose.  Dripping mucous from the sinuses.
  Coughing up goo.
* Hot and cold flashes, particularly in my legs.

At all times I pretty much had:

* Cold hands and feet.  
* Easy 'redding', i.e. lingering red discolorations after pressure was
  applied to the skin.
* Difficulty concentrating.
* Overall lack of vitality.
* Flatulence and occasional diarrhea (NOTE: this was my developing lactose
  intolerance.)
* Dry scaly ankles / calves.  (NOTE: I've had numerous problems with the dry
  weather in LA, and I think this particular symptom is unrelated to CFS.)

After an episode, my energy and concentration would slowly improve over
several weeks until I was feeling pretty good.  At which point I would get
slammed by another episode.  The coldness and redding seemed "constant" as
far as I could tell.

BTW, sometimes people wonder what I mean when I say I felt "tired all the
time".  To put things in perspective, during the episodes I barely had enough
energy to eat and go to the bathroom.  It was only my firm commitment to
hygiene which gave me the willpower to shower every day.  It was an
exceptionally good day if I had the energy to check my mailbox, a 100 feet
away from my room.

EXPERIMENTAL TREATMENTS

I didn't start looking for a physical explanation for my condition until
late April 1997.  I thought initially that it might be depression, and while
in that state I had caught some virus.  This opinion changed after a) the
second episode and b) talking with Dr. Ellicott (a long-time counselor).
Here are some of the treatments I tried and their results:

   MAR 1997 - Diet
Basically I increased my consumption of "healthy" foods and started
religiously taking Theragran M (a multi-vitamin supplement).  Because of
independent reasons my diet was already pretty good.  I noticed no particular
improvement at any point because of diet.

   MAY 1997 - Exercise
On the advice of Dr. Zeiss, I began a once a day workout regimen.  Almost
paradoxically, I improved and got worse.  I could feel my muscles getting
stronger, but at the end of a workout instead of feeling invigorated I would
feel wasted.  

A month later I discontinued the regimen after a disastrous workout.  After
dismounting from a cycle machine I passed out.  Witnesses say that my skin
went white and it took me a minute to regain consciousness.

   JUN 1997 - Rest
I spent the summer back in Massachusetts.  Episode #4, which I had in August,
was much milder than the others.  In particular it was a stark contrast to
episode #3, which was the most debilitating of them all.  I am uncertain
whether the improvement was due to a) the relaxed lifestyle or b) the change
of environment.

   SEP 1997 - Vitality Mixtures
By this point western medicine has clearly told me that it doesn't know
what's up, and I decide to go whole hog on a range of alternative herbal
medicines.  The first one I try, the "Source Of Life" shake, shows some
minor promise.  I try several others over the next few months which have no 
discernable effect. 

   OCT 1997 - Chlorella
Tried 10g daily for two weeks.  No noticeable difference.

   NOV 1997 - Echinacea
Tried 50mg daily for four weeks.  Significant reduction of nasal goo.  I
would have continued to use it except that several articles said that
prolonged use of Echinacea was ungood for the immune system.

   DEC 1997 - Ginkgo Biloba
Tried 40mg daily for three weeks.  Distinct improvement of blood circulation,
in particular the cold hands and feets.  Slight increase in energy.

14 JAN 1998 - Proanthenols and Sustenase
This is where things start changing!  Proanthenols are an anti-oxidant
mixture of synthetic Masquelier's OPC-85 as well as naturally occuring ones
(like vitamin C).  Sustenase is a two-phase digestive pill which contains
several enzymes keyed for release in the stomach and intestines.  I began
taking 4 Proanthenol pills a day (200mg of OPC-85 and around 800mg of vitamin
C) and a Sustenase pill at every meal.

The effect was dramatic and considerable.  Within 48 hours all the goo had
cleared from my nose.  For the first week my energy level rose sharply,
gradually increased for another few weeks, and then plateaued after a month
or so.

However, I'm not out of the woods yet.  I have reason to believe that the
pills are just masking the symptoms; if they are treating the disease itself,
it is a short-term cure.  I order these pills through the internet and they
are shipped to my house via UPS a few days later.  I mistimed the second
order of the pills, not taking into account an intervening weekend, and spent
three days without taking the Proanthenols (I still had Sustenase).

Once again the effect was pronounced.  By the third day my energy was very
low, and I began to get a light layer of goo back in my nose.  Fortunately,
the ramp up period when I began taking the anti-oxidants again was much less;
within ten days I was a "peak level" again.  In any event, I am still
searching for a better cure / more comprehensive elimination of symptoms.

10 MAR 1998 - Magnetic Mattress
Significant increase in bloodflow (as evidenced not only by tingling in the
extremities but also respectable erections).  Hands and feet warm
significantly after an hour on the mattress, and remain warm for some time
after I wake up.  Sounder sleep.  More regular bowel movements.

CLINICAL INDICATORS

I've been subjected to numerous tests in an attempt to diagnose the
condition.  Virtually every exam has come back putting me in the prime of
health.  The only two siginificant deviations have been:
  1) High hemoglobin count.
  2) High antibody levels on the Epstein-Barr series.
This latter test was what originally led to the diagnosis of Chronic
Epstein-Barr Syndrome, which is just another name for CFS.  However, I have
since learned that this particular test has a large amount of subjective
variability; in particular, an infectious disease specialist I spoke to said
that she wouldn't trust the results of the EB series one way or the other.

Here are some of the things I remember being tested for.  In all cases things
came back fine.

* Chest X-Rays.  Looking for flooding of lungs / other abnormalities.  
* Thyroxine Series.  Hypothesis: a metabolic thyroid condition.
* A kajillion blood tests.  Looking for anything.
* Allergy Sensitivity Tests.  Hypothesis: an excessive immune response.  The
tests were a resounding negative.  If I have an allergy it is a narrow band
one (i.e. to a specific tree or food) and difficult to find.
* Gastrointestinal Barium Test.  Hypothesis: a digestive malnourishment
problem.  
* Sexually Transmitted Disease Tests.  As a sperm donor I get tested for STDs
every month.  I can pretty much confirm the continued absence of diseases for
lack of opportunities to catch them...  :-(

CURRENT APPROACH

My latest approach centers around the "Hypoxia Hypothesis".  I currently
suspect that there is some type of oxygen problem in my metabolism, and that
this is the root cause of the CFS.  Of course, it could be a transport
problem, metabolic deficiency, binding problem, etc.  I can't deduce the fine
structure, but in general a lack of oxygen fits with:

  1) The single reliable deviation on my clinical tests, i.e. a high
hemoglobin count.
  2) The literal lack of energy, since oxygen is used to create energy
through chemical reactions.
  3) The lack of heat in the extremities, and the flashes.  I assume that
body heat is generated from the same reactions as above.
  4) Being tired and sleeping excessively, which might be the body's way of
dealing with oxygen and / or energy starvation.
  5) The wasted feeling after my workouts, including the blood drain.
  6) The dramatic effect of the anti-oxidants.  Recall that anti-oxidants
reduce free radicals, which are primarily oxygen molecules with unpaired
electrons.

Things it does NOT adequately explain:
  1) The nasal goo production.  Why should oxygen lack cause excessive mucous
in the sinuses and other viral-like symptoms?  It might be that during the
starvation periods I am susceptible to viruses, but that is a particularly
unsatisfying answer.
  2) My clouded thinking and mental sluggishness.  I do not know how oxygen
would be implicated in something like a mental process.
  3) The cyclic nature of the episodes.  This might possibly be a bodily
response / environmental stimulus coupled oscillation, but once again I do
not like the explanation.

So here are two possible mechanisms:
  1) I swallowed some mercury when I was younger.  I also have a bunch of
fillings which may be made of mercury amalgam.  Some forms of mercury can
bind tighter to hemoglobin than oxygen can.  This might be causing the lack
of oxygen flow to the cells.  
  Unfortunately, there are major holes in this hypothesis.  First, mercury is
passed through the body on the timescale of months.  That (and the lack of
similar symptoms as a child) rules out a childhood mercury source.  Second,
if the mercury were leaking from my fillings, I should also be exhibiting
several symptoms in my mouth, which I lack.  I'm going to get a confirmable
negative on my fillings sometime soon.
  2) The significant pollution in LA has slowly degraded my body's ability to
metabolize oxygen, say through an excessive production of free radicals in my
system.  This hypothesis has a lot going for it.  It might explain why I have
the nose goo, i.e. the environment has somehow messed up my nasal membranes.
It would also explain why things improved when I was in Massachusetts, i.e.
when removed from the irritating environment, my body was gradually
correcting itself.  

Thus, the next major phase of things to try will be oxygen / free radical
related.  I'm going to be purchasing a negative ion generator soon, which is
supposed to a) improve overall feeling and b) increase oxygen transport in
the blood.  If that doesn't pan out, then I will be trying a pure oxygen
infusion through something like a hyperbaric tent.  We'll see how things go.