Porphyria - Another Connection
with Multiple Chemical
by Linda A. Thompson,
UPdate Winter 1997
It is the common experience of many
readers to exhibit a variety of elusive symptoms that may fit any number
of chronic illnesses. Two years ago I was diagnosed with Multiple
Chemical Sensitivities (MCS), Chronic Fatigue Syndrome, Fibromyalgia, food
sensitivities, and a variety of other ailments. Last fall I became
intrigued by articles in a publication called “Our Toxic Times”, linking
many of these conditions to a rare disease called porphyria, which could
be verified by testing done through the Mayo Clinic in the USA. For
several months I tried to get this testing done through the Canadian medical
system. Finally, I went to see a specialist in Washington State who
promptly ordered the tests which revealed I have a disorder in porphyrin
metabolism that was probably acquired through reactions to prescription
drugs and chemical injury.
What is Porphyria?
Porphyria is a disease caused by abnormality
in enzymes that produce heme. Heme is the primary component of hemoglobin
in red blood cells, is used to detoxify chemicals in the liver and other
vital organs in the cytochrome P-450 enzyme system, and is used to carry
oxygen from the lungs to the rest of the tissues in the body. All
of the cells in our body have the capacity to use heme, and thus, can be
affected by porphyrinogenic chemicals. Therefore, disorder of porphyrin
metabolism can account for a vast array of symptoms involving the brain,
nervous system, gastrointestinal tract, and skin. It can be caused
by an inherited defect in one or more of the eight enzymes involved in
making heme, or it can be acquired through reactions to certain medications
or various environmental chemicals.
How does porphyria relate
One of the characteristics of patients
with MCS is that their symptoms are often made worse by using mainstream
medications. Several drugs are known to cause porphyrinogenic reactions,
such as: alcohol, anesthetics, barbituates, sulfa drugs, antibiotics,
estrogen, and muscle relaxants. It may be helpful to recall any unusual
reactions you may have experienced with such things as birth control pills,
anesthetics administered for surgery, intolerance to alcohol, or medications
prescribed for muscle pain, bladder or throat infections. In addition,
patients with porphyria and MCS both react to toxins found in paints, solvents,
PCB’s, hexochlorobenzene, formaldehyde, and heavy metals - especially lead.
Two different doctors in Washington State have tested 150 patients with
MCR. More than 70% showed excess porphyrins and/or enzyme abnormalities.
Who should be tested for
Dr. Grace Ziem, Medical Director of
MCS Referral & Resources recommends testing if:
· some of the neurological,
psychological and/or skin symptoms are triggered or made worse by exposure
to different types of chemicals and medications, and
· at least one of the following
unusual characteristics sometimes associated with one or more types of
porphyria is present:
o symptoms are triggered or
made worse by exposure to sunlight
o symptoms are triggered or made worse
by fasting, dieting or skipping meals
o symptoms include abdominal pain that
is made worse by any of the above, or
o symptoms include occasionally seen
red or dark brown coloured urine (not blood).
How can one be tested
One of the major difficulties with
diagnosis is that the Mayo Clinic in Rochester, MN is the only lab in North
America that has developed tests for acquired (by exposure to drugs or
chemicals vs. inherited forms) porphyria. The Mayo Clinic has thus
far developed tests for five of the eight enzymes that produce heme.
Very special instructions must be followed when ordering these tests.
Physicians only can obtain detailed information on the tests through the
Mayo Clinic (call 1-800-826-5561). A comprehensive “Protocol for
Diagnosing Disorders of Porphyrin Metabolism in Chemically Sensitive Patients”
is available to anyone for US $18. One can expect to pay US $1,000
for testing done through the May Clinic. In addition, a specialist
may be needed to assist in analyzing the tests.
Disorders of porphyrin metabolism do
not explain all of the symptoms found in MCS cases, but it is a viable
place to begin research and we need to ask for this to happen here in Canada
immediately. Too many persons with severe reactions to toxic chemicals
are forced to see physicians who are uninformed and view these symptoms
as having a psychological base. Since there is very little effective
treatment for porphyria, other than avoidance of porphyrinogenic substances,
it is imperative that patients avoid these exposures in order to prevent
further damage to an already vulnerable medical condition.
Donnay, A.D. Ziem, G. “Protocol for
Evaluating Disorders of Porphyrin Metabolism in Chemically Sensitive Patients”
MCS Referral & Resources
Linda Thompson presently lives in
a secluded area nestled in the Beaufort Mountains on Vancouver Island.
In 1991 she received her M.Div. from Luther Seminary in St. Paul, MN.
She and her husband shared in a team ministry in Waterloo, ON where Linda
was severely chemically injured. She has been on disability for nearly
Linda would like to hear from anyone
else in Canada who has been tested for porphyria. You may write:
Box 189, Cumberland, BC, V0R 1S0 or call (250) 336-8722.