Re: Jake
Claudia Erb (cmerb(AT)micron.net)
Sat, 13 Jun 1998 02:48:12 -0600
Dear Judi,
I can sure relate to what you are going through with Jake right now. I
am 13 post TM and and also a T5. For the first two years after the
onset on TM it was all I could do just to take care of myself. I
actually had to plan a day when I was going to wash my hair because that
was all the energy I had for the day (and I didn't have long hair
either)! Back when I was first diagnosed they told me the TM was caused
by a virus, but they didn't have sophisticated methods of distinguishing
what virus. 3 years after my onset test results showed unusually high
levels of the Epstein-Barr virus, which is the usual cause of infectious
mononucleosis (I had never had mono, but had evidently been exposed to
it - 95% of the adult population has!). EBV belongs to the herpes
virus family and like other herpes viruses, can never be totally
eradicated. The virus is usually contracted in childhood and remains
dormant in the body's immune system, but if the virus is activated for
whatever reason it can cause severe damage (don't we know it!). It's
also thought to contribute to Chronic Fatigue Syndrome. I would be
interested to know from Phil, in the survey he conducted - how many
have had a diagnosis of EBV, I think there are quite a few. Perhaps
this is one of the reasons for the extreme fatigue during the first few
years of TM. There is of course, no cure, but generally sufferers
improve in time - my research (and experience) indicates seeing
improvement after about 2 years. This is not what you'd like to hear I
know, but perhaps it will help in your search for answers. It's always
easier to live with something when you know what you're dealing with
and knowing there is a light at the end of the tunnel!. I, of course,
don't know if this is what's happening to Jake but perhaps it's worth
mentioning to the doctor!?!?
My continued thoughts and prayers are with you and Jake -
Living in the Son shine,
Claudia (Idaho)