Re: I have been on and off this group for years

From: Greatcod (Greatcod_at_Yahoo.com)
Date: 03/08/05 

Date: 8 Mar 2005 08:35:50 -0800

ruth wrote:
> Many of you may remember me as Rufie.
>
>
> I have had lyme probably since 1985.That was when the odd rash
> appeared. Both my kids ( now teenagers) tested high positive when
they
> were babies. I have been under treatment since 1990. And I am here to

> say that i have just about had it.
>
> I was part of the Fallon study( although I did not complete it as I
> couldn't stay off of meds as long as I would have had to). I have
seen
> nearly every LLMD in the area. My SPECT scan is severely abnormal. I
am,
> at this point, in moderate to severe pain 90% of the time. My doctor
is
> good at pain management but the trade off is being drugged 90% of the

> time. I have had IVs, I have had every oral abx known to mankind. I
have
> been treated very aggressively.
>
> I am now 53 years old and am seriously considering stopping all
> antibiotic treament and just letting the disease take its course. I
have
> lost any ability to continue fighting this after such a long time. My

> extended family has turned its back on me. They don't get it- I
believe
> they think I am faking it all. I have lost friendships, I have had
one
> doctor who committed suicide due to lyme and another who died of the
> disease. I think I have had enough. Does anyone know of any lymies
who
> received assisted suicide? I can't take this anymore. I have tried
hard
> and I have done admirably under the circumstances( damned admirably I

> might add) but I am only half alive anymore. This illness turned me
into
> someone else..someone I never intended to be. It steals your soul,
> divorces you from yourself, and kills the old person replacing it
with a
> very inadequate shadow. No one other than Lymies understand what this
is
> like. I think my children would be better off without me.
>
> I have truly had it.
>
> I guess I would love to hear some words of encouragement that would
do
> the trick but the fact is, we can't financially afford to treat this
> illness, my kid needs to be able to pay for college, and my death
> benefits would probably help my children out more than my half
-presence
> on this planet.
>
> I do wish you all the luck in the world, but I was born with one of
> those odd immune systems that can't handle this disease.
>
> good luck to old and new Lymie friends .

Ruth, a lot of us are in very much the same position...Please don't
blame yourself, or your immune system. No one knows why some are
treatment resistant, but its reasonaly common. My ownguess is infection
volume in tissue the ABX don't penetrate well, but that's a guess. All
my "Lyme class of 86" are seriously and meaningfully despondent at
times; its simply human.
The winter in the Northeast has been hard; I know that was a big chunk
of what got to me this last bout of despair, on top of all else.
I too have lost family and friends on the "It ain't that bad" issue.
That is very, very hard, but also common.
I have has sucess for years with treatment of my head to toe
"Fibromyalgia"
pain with shotsof Magnesium--I was found to have low levelsof red blod
cell
Magnesium. I can give you more info if you'd like. I was told by a
caring doc that the pain is like a junkie withdrawing from heroin; I
checked out
a junkie in that position, and its the same..so its no joke.
Also, there was nothing odd about your rash. It was an ECM, but of
course
Steere made the Bullseye The Lyme Rash--My oval rashes with pettucae--
"speckled fish" didt count either, and it destroyed my life.
please don't hurt yourself--this too will pass--we have important work
to do.

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