In July of 2004, I was correctly diagnosed with chronic Lyme disease after being misdiagnosed for 34 years by between 40 and 50 doctors. I was also diagnosed with sleep apnea, diabetes 2 and restless leg syndrome. I was tested with the Western Blot, which needs to be using all 16 protein bands...all strains of Lyme Disease!

Iowa does not have Lyme literate physicians, so over 1500 Iowans have gone out-of-state seeking treatment. Most go to Kansas City or Springfield, MO. At the end of this month, I'm going to Minnesota for treatment but NOT the Mayo Clinic! Going out-of-state means "going out of network" so I must PRIVATELY PAY for LLMD treatments, blood labs, x-rays and out of pocket costs for gas, lodging, food, etc. My first LLMD visit will cost $600; follow-up with be $400 plus huge lab costs.

"You look perfectly healthy...not sick" said one of my family members. Oh, what they don't know and can NOT feel the pain and fatigue inside me! If I were in a wheelchair, used a walker or cane, at least I would have a visible disability. "It's all in her head." If only those of you NOT battling Lyme disease knew how much pain and anger you've caused with your thoughtless comments on our invisible illnesses! We don't want your sympathy...we only want your support, compassion and someone to talk to when our flare-up's are bad.

My pain never goes away! I use a heating pad or cold pack on my neck, shoulders, lower back, thighs, and knees to try to numb the pain.
Do you have any idea what it's like to go to bed night after night, year after year, and get up just as TIRED as when you went to bed? We can't reach the level of sleep that heals and rejuvenates our systems. I soundproof my bedroom to eliminate noise from our neighbor's driveways, the slamming of car doors, racing engines, dogs barking, etc.
I was clinically diagnosed with major depression and anxiety and put on antidepressants - causing me to gain 25 pounds, which caused the onslaught of my diabetes 2 sooner. I have difficulty concentrating and performing simple mental tasks. I now point at things 60% of the time because I can't think of the words.

In July, 2005 I was finally approved on my second SSDI claim after 5 years of HELL.

Betty Gordon
Ames, Iowa