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Welcome Bruce.
Breaking this up so that those of us who have had lyme for decades are able to read/comprehend. Just hit the enter button more and double space each paragraph for us neuro lymies. We thank you!

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Originally posted by Bruceallan:

I am new here this is my first post, I copy and paste a brief review of my journey from a medical statement I made to help docs see what I been living with,

in 1994 I applied for disibility based on CFS did not get it till 2001 , and now in 2006 I find I have Lyme and it is the causitive factor of the CFS.

I was bitten by 3 to 5 ticks a year in the colorado mountins from 1966 to 1980, that is when I was infected as that is when all the heath problems started.

My Exhaustion put into Percent of available energy
When I had full health was at 100% usable energy (prior to 1985), I would normally get up at 7am and go to bed at 10pm 9 hours of sleep and 15 hours to use in a day.And every hour a joy!

Good day (remember a good day for me is 2 to 5 hours long, and a struggle for every hour) is apx 20 to 30% of normal,

going to bed at 11 to 12 pm sleeping till noon and unrested upon waking (I felt like I had already put in a long and hard work day upon getting up) thus it took all my push to get up ( usually 1 hour to become alert enough to try to function)

and then go for a few hours, by 5:30 to 6pm was too tired to hold my head up, and would lye down and not be able to sleep either, just rest, by 11 to 12pm ( 2 or 3 times a week I toss and turn unable to fall asleep till 2 or 3 am.). This was a good day, 20 to 30% usable energy.

Bad day = I would not be able to wake up enough to think straight or gather enough energy to do anything,

have tried to do vacuuming and would have to stop and rest before completing one room.,

or drive to the coffee shop only to pass it by several blocks, turn around go back and pass it again, not making the turn till the 3rd or 4th try, then go home and back to bed, many of these days I never even left home, just stayed in bed.

This is a bad day, 0 to 10% usable energy. This is the way it has been since Aug 2003 when I got WEST NILE VIRUS. With only 1 or 2 good days a month.

A Brief Review of My severe Exhaustion Over The Years

1979- 1980 for a few months I remember being very tiered and having a hard time functioning.

1986 - 1987 was bedridden for 1 year mostly bad days ( started with flu that never went away)

1987 - 1993 was back forth 3 to 4 good days (consisting of 3 to 4 hrs functioning tired but can push) a week the rest bad.

1994 - 1996 mostly bad days with very few good days, 5 or more weeks at a time all bad days.
(Started with flu like symptoms)

1997 - 2003 was back forth 3 to 4 good days (consisting of 3 to 4 hrs functioning tired but can push) a week the rest bad (pneumonia 2002 3 months)

2003 - 2006 Got west Nile Virus in Aug 2003 and have never recovered, have had mostly bad days since (longest & worst down time yet), with only a few good afternoons in each month,

LYME diagnosed 5-05-06

I have 95 percent of the lyme symptoms, did a western blot for lyme & coinfections lyme was neg but I did have 4 bands test positive showing that something was going on with lyme, I also tested a certain positive for ehrlichia.

Some info right on Igenex test results was
"very rare to have ehrlichia in US with out LYME "

"a negitive does not rule out LYME Must use clinical Diagnoses"

I have started a teatment of doxy and cholestyramine, the cholestyramine is to bind up and remove bacterial die off and other toxins.

I have been herxing but was doing so poorly before treatment started that it dont seam that bad, but I have had a huge increase in pain, and after 2 weeks the pain is starting to go down.

I know that because of having it for so long I may not fully recover, but if I could get half my energy back I would be very happy. Later Bruce

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