REPORT FROM THE SEVENTH ANNUAL AACFS INTERNATIONAL CONFERENCE Oct. 8-10th, Madison, Wisconsin by Rich Van Konyenburg: Ritchie Shoemaker’s Talk
There was a one-day pre-AACFS conference meeting organized by Pat
Fero (who did a tremendous job, by the way) and the Wisconsin
support group organization. They invited Ritchie Shoemaker, Jacob
Teitelbaum, Karen Vrchota and Byron Hyde to speak. It was held in
Luther’s Blues, a restaurant-bar on University Avenue in downtown
Madison, WI. Most of the crowd of about 100 there were female PWCs
from Wisconsin and the surrounding areas. This meeting was billed
as being concerned with “effective treatment” of CFS and FM. (I
might mention that it appears to me that the AACFS organization
tends to focus on more conventional medical treatments using drugs,
and less on alternative treatments, while this separate meeting was
more nonconventional or alternative in nature.)
Ritchie Shoemaker, in my opinion, is in a class by himself, doing
some very innovative work. He talked about the history of his
involvement with a range of multiple-symptom conditions that turned
out to involve neurotoxins. It started with an outbreak of
pfiesteria near Pocomoke, Maryland, where he practices. A woman
came in with a serious case of secretory diarrhea. He have her
cholestyramine, because it was the most constipating drug he knew
of. It not only stopped the diarrhea, but took away her headache,
cough, and loss of memory. This caused Shoemaker to suspect that a
toxin was involved, that cholestyramine was able to bind. He tried
cholestyramine on some other patients, and it worked on them, too.
He also tried it on people in Florida who lived near nurseries that
used a lot of fungicides. It also worked on people living near some
polluted lakes close-by, who were sick.
He didn’t have a lab test that would show whether people had
neurotoxins. Then he met Ken Hudnell from the EPA, who had been
using a visual contrast sensitivity test, and he found that people
with pfiesteria had a positive result on this test. It also worked
on people who had mold sensitivities from buildings. Shoemaker
mentioned that he himself is sensitive to molds, and he can tell
within 5 minutes whether they are present in a building. In fact,
he said there were molds in the building in which we were meeting!
He recommended that if there were others like him present, they
should get some cholestyramine.
Next, he talked about Lyme patients. He said that they had had
antibiotics, but they were still sick. He gave them the visual
contrast sensitivity test, and they came up positive, indicating
that they had neurotoxins. When he gave cholestyramine to people
who had Lyme disease, he found that 53% of them became much sicker.
He hypothesized that this must have resulted from a mobilization of
toxins that caused cytokine production by fat cells, activated by
toxins. The toxins have an ionophore structure, which enables them
to bind to fat cells. So he started measuring cytokines, and found
that some were elevated. He then started giving them the diabetes
drugs Actos or Avandia first, which block cytokine production, and
then they didn’t have the bad response to cholestyramine.
He found that using this same treatment topically works with brown
recluse spider bites, which then heal in 10 to 21 days.
The next thing he talked about was vascular endothelial growth
factor (VEGF). He found that people with chronic fatigue who did
not get better from these earlier mentioned treatments were low in
VEGF. He found that a big fraction of these people had Ehlers-Danlos
type 3 syndrome, with a wingspan greater than their height. He
found that quite a few had genetic characteristics similar to people
with celiac disease. He found that many had antibodies to
cardiolipin, gliadin and endomysial protein. He found that these
genetic differences explained why some people got sick and some
didn’t, in the same environment. He began characterizing the HLA (I
thought this stood for human leukocyte antigen, but he said it
stands for histocompatibility locus A) genetics of the patients,
because this controls immune response. He found different HLA types
for the Pfiesteria patients, the mold patients and the post-Lyme
After following patients for 5 years, he found that there were still
some who were not well, after fixing all the above problems.
Something was missing, and he found that there was a problem with
complement, which is part of the innate immune response. He said he
has a model of chronic fatigue in which the acquired immune response
goes to zero, and the more primordial innate immune response is
compromised. He noted that the oldest organisms, such as the blue-
green algae, the fungi and the spirochetes, all make toxins.
He passed out a handout called “The Biotoxin Pathway.” The handout
showed biological toxins producing a cytokine response from fat
cells by means of an activation of toll receptors. The biotoxins
also have direct effects on nerve cells, which give the poor
performance on contrast sensitivity tests. The cytokines also have
effects on capillaries, leading to restricted blood flow and lower
Reduced VEGF leads to fatigue, muscle cramps and shortness of
breath, but can be overridden by replacement with erythropoeitin.
People with certain HLA genotypes may develop inappropriate immune
response, including autoimmune response to myelin basic protein, or
to gliadin, or to cardiolipin.
The cytokines themselves produce a variety of symptoms, including
headache, muscle aches, fatigue, unstable temperature, difficulty
concentrating. They also raise TNF, MMP-9, IL-1B, and PAI-1. MMP-9
delivers inflammatory elements from blood to brain, nerve, muscle,
lungs, and joints. It combines with PAI-1 in increasing clot
formation and arterial blockage.
The cytokines from the fat cells can damage leptin receptors in the
hypothalamus. Fat cells then produce more leptin, leading to
obesity (which doesn’t respond to exercise and diet).
Damaged leptin receptors in the hypothalamus lead to reduced MSH
leads to sleep disturbance via reduction of melatonin production, to
chronic pain via suppression of endorphins, to gastrointestinal
problems, to prolonged illness, to resistant staph bacteria, to
changes in ACTH and cortisol levels, to reduced sex hormones, and to
reduced antidiuretic hormone.
He said that some PWCs are very dehydrated because they urinate
water out so rapidly. The osmolality of their blood thus runs very
high, and their sweat is more concentrated in salts than that of
cystic fibrosis patients, which were thought to be the highest of
all. He said this causes them to conduct electricity very well, and
accounts for why they experience static electricity shocks from
light switches. He said they use their elbows to turn on light
switches to avoid these shocks. They are able to stop Palm Pilots
and watches by touching them.
He said that multiple antibiotic resistant staph organisms develop
biofilms in the nasal passages, but don’t usually invade. But in
MSH-deficient patients only, these bacteria release hemolysins to
help harvest iron they need from blood cells, and these hemolysins
turn on a cytokine response. Therefore, the MSH will never rise if
these bacteria are present. It takes a special test to find these
bacteria, called an API-staph culture. They also make exotoxins,
which destroy MSH.
He said that he recommends that people get some additional tests run
to see if they have a biotoxin illness. He also recommends that
people look at the history of their onset and consider whether it
might be a biotoxin illness. Not all chronic fatigue is produced by
biotoxins, but some is. Not all biotoxin illnesses produce chronic
He talked about his “HLA Rosetta Stone.” This involves measuring
the genotypes of HLA, using a PCR test, rather than a serology
test. He can tell from these LabCorp tests what illnesses people
will be vulnerable to. Those who are homozygous for certain
genotypes are particularly vulnerable. He is doing detailed studies
of these people.
He recommends testing for MSH, biofilm-forming multiple antibiotic
resistant staph, VEGF, C3a (Quest will do it, but you have to use
the right code), and MMP-9. Since there are some details involved
in taking proper samples and specifying the tests, I think it would
be best if people check with Dr. Shoemaker before ordering them.
He talked about the problem of construction of concrete buildings in
which the interior walls are built too soon, sealing water in the
concrete that doesn’t get a chance to evaporate. This produces
conditions ripe for growing mold in the building.
He said that chronic fatigue is the end result of multiple different
processes. There is no one single weapon against it. We need to
tease out subsets.
He said that C3a is a good marker for Lyme disease. Lyme disease
causes C3a to go way up. If a person gets “sick as hell” from
cholestyramine, they might have Lyme disease. If they have a
history that suggests tick exposure, then even if the Lyme tests are
negative, he will give 3 weeks of doxycycline and see what the
He talked about the satisfaction he gets from treating patients with
neurotoxin illnesses. He charges everyone who can pay an extra $50
which goes to his foundation. Among other things, this covers
treatment of people who cannot pay. He emphasized the value of the
visual contrast sensitivity test. He has results from 3,000
patients now. This test shows whether treatment is helping, as well
as diagnosing the neurotoxin illnesses initially. Rows C and D in
the test are the most sensitive for detecting neurotoxins.
Dr. Shoemaker has a new book coming out in about six weeks, called
Mold Warriors. For those who want to know more about his ideas and
treatments, I suggest that you consider getting a copy when it comes
out. His website is www.chronicneurotoxins.com.