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Wednesday, May 29, 2019

Is this the most tragic Chronic Fatigue Syndrome and HHV-6 story?

From The Virus Within by Nicholas Regush.

In the fall of 1996, Tina, in her forties, spiraled ever deeper into depression, suffering from repeated attacks of migraine headaches. Desperate, she offered herself the only prescription that seemed fitting: suicide by drug overdose.
When news of her suicide attempt spread throughout the area, people were shocked. What could drive Tina to such straits? Yet the real tragedy was still on the horizon.
Several months before, Tina had experienced a flurry of flu-like symptoms: difficulty in breathing, nausea, diarrhea, fever, and aches all over her body. The symptoms were noted in her medical record, but she made nothing of them. After all, such symptoms are common and transient, usually abating without medical intervention.
In fact, many early symptoms of disease are subtle and do not attract attention until the disease is well established. This is probably why it took so long for Tina's son Len to receive appropriate medical consideration.
In September 1997, soon after the young boy returned to school after summer vacation, his teacher, Gail, detected a change in his personality from the previous year. Len seemed sad and withdrawn more often than usual, and what had been occasional flashes of anger occurred with increasing frequency. Gail also noticed that his writing skills were in decline. She reasoned that such changes were to be expected in a boy whose mother had attempted suicide.
By early 1998, Len's behavior had deteriorated. In school he was so aggressive with classmates and defiant with his teacher that he was twice suspended. Other times he was so fatigued during afternoon classes that he would fall asleep. On most days he was either too tired or distracted to complete his homework. He was also undergoing physical changes. There were days when he complained of muscle and joint pain and of having weak legs. Once he soiled his clothes and on another occasion could not control his bladder.
Observing Len's erratic and baffling behavior, school officials concluded that he was likely "acting out" in response to a troubled home life. They also decided his schoolwork difficulties were the result of an attention-deficit disorder and that what he needed was old-fashioned school discipline. That approach did not bring any benefit. In April, Len became so aggressive that he threatened his brother, Fred, with a knife. He had also started to have double vision, particularly when he was tired or stressed. Tina, who by this time had awakened to her son's plight, agreed with school officials that Len needed medical testing.
The first warning sign came from a CT (computerized axial tomography) brain scan that revealed some shadowy areas that appeared to be abnormal. Len was then referred by the hospital to a neurologist, who began a more detailed medical investigation. The neurological exam, which included tests for muscle tone and strength, revealed nothing of concern except for swelling in both eyes of his optic disc, the small blind spot on the surface of the retina. The swelling usually occurs when increased pressure is applied from the brain to the optic disc; nerves that surround the optic nerves from the disc are connected to nerve-covering sheaths of the brain.
Hoping for a clearer look at Len's brain, his doctor requested an MRI (magnetic resonance imaging) scan that can produce more detailed images than the CT. The MRI revealed, in the words of the doctor, "fairly extensive white matter disease present with a frontal lobe predominance." Though the "white matter"—the inner areas of the brain rich in nerve fibers—appeared to be diseased, only when sample tissue was removed from Len's frontal lobe a few weeks later did it become evident that the white matter nerve cells had holes and looked like Swiss cheese.
While the tests continued, the only therapy offered was steroids to ease the swelling in the eyes and opiates to tame the headaches he was having. Len's mysterious condition continued to deteriorate rapidly. Soon he could no longer walk without help. He felt wiped out much of the day and had severe headaches. He developed speech impediments and an abnormal sensitivity to light. His teacher, Gail, who visited Len at home, found making emotional contact with him increasingly difficult. Tina feared the worst.
Over the next three months, doctors at several medical centers were asked to consult on the case. Their reviews of biopsy materials led to conflicting opinions. One doctor suggested Len was suffering from a tumor while others thought that some of his nerve fibers were being damaged because they were losing their protective myelin sheaths.
But not one of the doctors initially involved in the case thought of searching for a virus that could be hiding well camouflaged in the pieces of tissue extracted from Len's frontal lobe.

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