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My Invisible Enemy: A Life with Chronic Fatigue Syndrome (CFS)


by Andy Porter
Fibromyalgia.com


08-15-2000

Editor’s Note: In 1985, Andy Porter fell ill with what he thought was a common cold. What follows is his story, from being diagnosed with CFS to meeting the challenges of living with a chronic disease. The following story tells of my dramatic change from being a fit, healthy racing cyclist, into a physical, mental wreck within days of suffering from a mild, acute viral infection. What it demonstrates is how the suffering has not been helped by a biased medical profession, which on occasion, served no more than to intensify symptoms and was not prepared to consider anything that did not comply with well-understood, easy-to-treat conditions of ill health.

The starting point is March 1985, when I spent two weeks in Majorca at a cycle training camp. At first all was well. My racing performance was excellent and I was in good spirits. However, I was suddenly struck with a loss of form characterized by the onset of weakness without any sensation of an illness starting.

Several days later I experienced the symptoms of a respiratory illness: a sore throat and nasal discharge, but with considerably less severe symptoms than those suffered by my friends similarly infected.

Upon my return to the UK, my acute symptoms disappeared, but the sensation of weakness did not. At this stage I tried to return to cycle racing but had to give up as symptoms appeared. They included unnatural physical and mental fatigue; weakness; hypersomnia; blurred eyesight; dry mouth; feeling “spaced out” and extremely ill.

Repeated visits to my local doctor resulted in antibiotic treatment with no benefit. Blood tests proved negative when looking for chronic infection, anaemia, diabetes, etc. At this stage, I was referred to a Consultant Immunologist, but an 18-month waiting list was a problem.

The next stage was to visit a private allergy specialist, as I believed this was my problem. Needless to say, Enzyme Potentiated Desensitisation injections, antifungal drugs, and elimination diets also proved ineffective.

At this point, I visited a homoepathic doctor as a last resort. Unexpectedly he prescribed a homoeopathic remedy that at first made me feel worse. However, after two weeks I started feeling better. This improvement continued for seven months before I became infected with a flu-like illness. I experienced one relapse and no further gains using homoeopathy.

My first visit to a Consultant Immunologist resulted in a diagnosis of Myalgic Encephalopathy, (ME or Chronic Fatigue Syndrome) based upon the eliminating other causes. Chronic insomnia responded to low doses of the antidepressant Molipaxin (Trazadone). Attempts to remove any remaining viral infections were unsuccessful when using Ribavirin, Imunovir, Amantadine and Immunogobulin injections. However, when Ribavirin and Imunovir were used to treat secondary viral infections, they did prevent a relapse. (This suggests by blocking secondary viral infections, the underlying problem is prevented from getting worse. This does not happen without treatment. Also bacterial infections even untreated do not cause a relapse.)

At one point in this tortuous journey a psychiatrist decided that he knew my problem was no more than depression. As a result he prescribed a high dose, (150mg per day) of Prothiaden, a potent sedating tricyclic antidepressant. The result? One massive relapse with all symptoms intensified and a 24 hour-a-day hangover. Duration? Seven weeks of misery with depression triggered as a result. I then disposed of all medicine and started to recover slowly from the damage caused by this drug.

Today I have reached a stage of partial recovery that allows me to work full time without too many problems. However, I am always aware of my symptoms. I am still being treated with the drug Imunovir (Isoprinosine) that seems to help my immune system and prevents secondary viral infections from causing a relapse.

I still wait for a cure that I suspect will be provided by either an antiviral drug capable of destroying viral material regardless of where it is located in my body, or some form of immunotherapy that allows my immune system to overcome whatever is responsible for my symptoms.

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