Dear Robin: If you had one of those viruses, or didn't know what you
had, you would be looking for help too. You can not imagine how
desperite one can get for answers, especially when the doctors have
none, and little compassion to boot. There is always the hope that
someone who studies viruses all the time will recognize the missing
puzzle piece in hopes of finally putting the whole picture together.
Don't you know that we who have these diseases study constantly looking
for answers that we can not get from our own physicians, often too busy
making money to catch up on the latest info on some obscure virus that
the medical community is divided on. I have EBV. The antibody titer was
off the scale at 640. That IS my doctor's diagnosis. So I'm not looking
for a diagnosis per se. I'm just looking for answers and hope. I went to
15 doctors (count them!) before I was given a provable diagnosis,(blame
mangaged health care for the numbers..one for each organ investigated,
and then some) and still half of those doctors would call EBV a
pschological disease. I wish it were. There would be more hope of a cure
for it. Give me a pill for my head that makes my body work, and I'll
take it. Give me a doctor with true compassion and the determination to
give me more than a bandaid treatment, and I'll go to her/him. But most
of all, if you know something that could help me and others like me,
don't hold out on us. Give us a clue at least. A little hope goes a long
way.
Telling what you know that could help a person does not have to be a
diagnosis. Anyone that had been sick for a long time has had many
diagnoses. Some of the doctors I have gone to for the multi-system
problems that the EBV has caused have welcomed me as an informed
consumer. Others did not. It's easier to give a quick diagnosis to
someone who has no knowledge. Risking acknowleging the fact that a
little knowledge is a dangerous thing, no knowledge can be fatal. If I
had not insisted on being checked out for stones in my bile duct, which
I deduced were there after much research (I had no gallbladder,
afterall), who knows what would have happened. It took 8 wks of severe
pain and debility to get them to do anything but send me to another
specialist. Good thing it was only intermittently blocked. Dealing with
doctors at this time was the most frustrating thing I've ever had to do.
There is no room for complacency in the present day healthcare industry.
Squeaky door gets the oil.<g> So, please, have compassion for the
patients and help to direct them, not diagnose them. Bev
