Porphyria - Another Connection 
with Multiple Chemical Sensitivities

by Linda A. Thompson, M. Div.
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 to MCS?
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 porphyria?
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 for porphyria?
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 two years.

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.