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[Guest guest]

Hello. I'd like to introduce myself to everyone. I am Isis Coble.

I'm African American, 52 years old, and I live in Mendocino County,

California. I have had an on again/ off again diagnosis of tertiary

Lyme disease since 1983, and probably contracted it in 1969! I have

been seeking help for most of my adult life with this continuing

autoimmune illness. I've been through most of the major symptoms of

Lyme, have seen lots of specialists and have reached the point where

my symptoms are permanent and progressively worsening.I abreact to

antibiotics, have tried many many alternative treatments, and keep

looking for help. My most recent symptoms are involved with enormous

weight gain and intensely painful edema of the feet, legs, neck, back

and hands. I'm in bed, most of the time, being kept as comfortable

as possible with a cocktail of medication, nutritional suppliments

deep meditation, writing and producing ART!

I, of course, have an additonal diagnosis of CFIDS/ fibro. I am

tired of fighting about diagnosis and cure. My favorite researcher

decided that my history and symptoms were so complicated that he

informed me that I had an " ideosyncratic autoimmune illness "

called 'Isis Coble Syndrome'. Among my many challenges are being

unable to be employed any more, being on SSDI/SSI with a hugely

limited income, and having only public medical insurance (MediCal and

MediCare). (Did I mention brain scramble and lots of

muscular/skeletal pain?) I am interested in information about long

term symptomology, research into the causes of sero-negativity,

antibiotic reactivity, and public insurance payment for new

treatments, including hyperbaric treatments. I am truly tired of

experiencing doctors walk into a room, see an older, fat Black woman,

on Aid, with weird symptoms, on chronic pain meds and watch them

think.. " Umm hmm..... " I'm also tired of meeting the new alternative

medical practitioner with the latest 'cure' who blames me if it

doesn't work. And, I am willing to keep looking for help.

Suggestions are welcome. I'd like to chat or correspond with others

who are focusing on dealing with longterm chronic illness and what I

call " positive mental adjustments " . Let me hear from you. It's good

to meet you all. Welcome to the Zen of all diseases.. you only have

NOW!