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this got to me!!!!

Posted: Sat 13 Sep 2008 23:14
by Fin24
was reading a few of the reviews for Pam Weintraub's book

and saw this entry by a woman in California (Im unsure if she wants to be named here so I havent)
but this got to me --Ive followed the fight, been involved in and out over the years but somehow THIS one encapsulated story got to me

and I dont want his death to be in I wanted to share it

In California, Glenn Edward Killion tested negative repeatedly in both blood and spinal. When he was alive doctors treated him like a hypochrondriac because he was convinced he had chronic Lyme disease. He had a tick bite and onset of illness. Even a bulls-eye rash- yet he never tested positive. After his death- his mother and widow sent slices of his heart and brain to Dr. paul Duray at the NIH- the Bational Institute of Health- who did his post mortem work up. He had spirochetes, Lyme spirochetes, in his heart and brain. I knew his Mom, she was an ardent Lyme activist until her death a few years back. Glenn died at age 36 and left 2 little kids, Matt & Heather.

Re: this got to me!!!!

Posted: Sun 14 Sep 2008 22:08
by LymeEnigma
Thank you for sharing this. I wish there were a way to get this through to the medical community....

Re: this got to me!!!!

Posted: Sun 14 Sep 2008 23:29
by Fin24
Ive considered printing off the dismally growing list of Lyme related obits from LN and elsewhwre and copying them and mailing them to all my local Drs and asking others to do in tyheir won communityt -then I stop and think...those who care, know and those who dont care will still not care and the few in the middle??? Im exhausted trying to figure out how to get to them

sorta like the elections--how to get to the uncommitted

sigh I need a vacation

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 9:41
by minitails2
I've been literally sitting a few feet from this story all week at my county fair. Many people read that story and were affected by it. I'm sure that a least few will carry that with them for a long time to come.

Today, we met a man with a huge bulls-eye rash on his leg. He now has the information, phone numbers, and hopefully, an understanding of the importance of doing something about it. I hope we hear from him soon.

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 14:21
by cave76
Despite the work done by Melanie R and others, collecting these stories, people will ignore it until someone close to them dies from a TBI.

The list of 'documented' Lyme deaths is minuscule compared to the people who die from it.

A person has Lyme disease.
He or she dies.
The doctor puts pneumonia or heart failure on the death cert.

Poof! Another one gone. :(

(Does anyone know what the 'official' cause of Great Cod's death was?)

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 14:29
by Curiouser
Maybe people need a visual aid, rather like the AIDS quilt project. Sometimes being smacked in the face works. A national lyme quilt project? Not just for those who have passed, but a square per person for those dealing with the disease. That might get someone's attention.

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 14:48
by cave76

There have been a few Lyme Quilt sites (but I don't think any about people who died)

Here's one.

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 15:08
by Curiouser
Thanks for the link. Didn't even look for such a thing before I said anything. :bonk:

btw, the pics didn't work on the site for me. it is my browser or the site?

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 15:17
by cave76
Didn't work on mine either.

Re: this got to me!!!!

Posted: Mon 15 Sep 2008 18:14
by blackpowder
That really is enough to make a person cry. I have told by husband
over and over that I want a ME to tear me apart and prove the
bastard spiros are there and then send a letter to every doc

who suggested I was nuts and "negative tests are negative, it must
be something else. I can't understand why noone listens. I have
always heard the squeaky wheel gets the grease and folks have

been squeaking, shreiking, and screeching for years so where is
the flippin' grease already?!!?

On a lighter note, mini, when I read your post about the guy with
the huge bull's eye rash I didn't read it right (cause of the haze over
my right eye) and I thought you wrote huge b@lls :oops:

I wasn't sure where the topic was going :o