Judy, I don't know that anything would be gained by writing about this.
My first onset of Lyme was a severe pain in my face under my right eye.
I thought at first I had an abcessed tooth, but a visit to the dentist found
no tooth problem. I told my best friend, who was a pediatrician, that the
pain was so severe that I was seriously thinking of ways to commit
suicide to get away from it. She immediately gave me an antibiotic,
which relieved the pain somewhat. My next move was to an EENT
specialist, who said my sinuses were not involved, but who referred me
to a neurologist. The neurologist said it looked to him like "a typical
untypical case of Lyme disease." He gave me more antibiotics and
sent me for a CAT scan (don't know why) and a blood test. By the
time I had the blood test I had already had quite a bit of anitbiotics, and
the blood test, which in those days was not terribly sensitive, came back
negative. The neurologist then said I must not have had Lyme after all, and
the fact that I felt better was just a placebo effect. I still had various
symptoms, so went to a series of doctors. One said "How's your sex life?
I see your husband has just retired so I think a few weeks of antidepressant
will fix you right up." Another said "Where did you say you live? No,
don't have Lyme over there." To make a long story short, that's the sort
of treatment I have had whenever I have had a flare-up which may be from
new infection or from the same old one.
I have to say that I think that one problem is that I have never been
completely incompacitated. I have never missed a meeting or event, or
been unable to complete a project. It has often been difficult, and I have
just pushed through in spite of feeling rotten, but I have never fallen in
floor in a fit. Maybe that would have made the difference.
More than you really needed to know. Thanks for letting me vent.
In a message dated 6/16/2009 10:41:16 PM Eastern Daylight Time,
I'm glad your doctors have at long last aknowledged what you have known was
wrong with your body. My grandfather was certain he had a particular
disease & worried about it most of his adult life. When it was finally
diagnosed, he was able to stop worrying. In his case, the symptoms were not
severe so he just ignored them the rest of his life & died of someting
totally unrelated at age 95.
Do they think gardening is too strenuous? Or do they want you to stay
indoors all the time? Stick to your guns on this. You've been right while
they ignored your concern.
Would you consider writing an article about this long course of Lyme
Disease? Just your experience. I think health care providers start to
categorize and stop listening to people. This is the sort of thing I read
first in my nursing magazines. Then I read the technical info. Helps me
remember to listen.
----- Original Message -----
Sent: Tuesday, June 16, 2009 6:29 PM
Subject: Re: [CHAT] Spring!
> I've been treated with doxycycline several times, and that was the
> prescription this time. It usually helps for a time, but since the
> doctors don't usually think I have it anyway, I haven't been able
> to keep up the treatment. Maybe this time I'll be able to lick it,
> but apparently after a long time your body begins to treat it like
> an autoimmune disease. We'll just see what happens. At least
> it is encouragring to have it recognized.
> Two doctors now have recommended that I give up gardening.
> I've responded that that's not an option - gardening is what I do.
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