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 Post subject: Dar's Story
PostPosted: Mon Feb 18, 2008 11:08 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
Dar's Story

I am Molly's twin sister that she referred to Molly's story. As she mentioned, we guess that we got sick in our childhood or teens. We have always been somewhat sickly and have required more sleep than our friends.
I was relatively healthy in my 20 and 30's but would occasionally have some wierd symptoms. Periods of weeks at a time when my legs would go numb, or periods of just feeling icky and sick. I was very active when I wasn't ill, working, taking care of my family and excercising. Then when I was 33, I had a six month period of one flu bug after another. I went to a doctor who did many tests and finally diagnosed me with "chronic fatigue syndrome" or yuppie flu as they called it then.
After trying for many years, I got pregnant at 33. Had many aches and pains during that pregnancy. A lot of joint pain especially in my knees and hips.
After the pregnancy, I had a severe case of post partum depression resulting in a 3 week stay in a psych partial stay hospitalization program. Recovered from that, but still require antidepressants after 13 years.
Then came the numbing of various parts of my body. Really all my body parts were numb at some point, not all at once, but at various times. I figured out that nutrisweet was largely causing that response, so I gave that up and rarely have numbing anymore.
Then two years ago, I got sick and stayed sick. In May of 2006 started treatment at Fibro and Fatigue Center the same clinic that diagnosed my twin with Lyme disease. They gave me a quest lyme test which was negative and proceeded to treat me for CFS. I had periods during this treatment where I felt pretty darn good so I figured the treatment was working. But then I had several crashed. In the meantime my sister found out a lot more about lyme disease and testing. So I asked the FFC for an igenex test. They said based on my quest test, I didn't have lyme. I asked again, they said no.
FFC strategy is to test with quest first and if something shows up then give an ignenex test. Because I knew that quest had a high rate of false negatives, and my health was failing despite treatment, I went to a different doctor and had an Igenex test. It was positive!! No surprise there. I find this out after spending 10 months and $12,000 fighting CFS.
So I have switched to this wonderful new doctor who takes my insurance and understands lyme disease. It's only been 10 days since starting treatment, and I understand I have a battle before me, but I feel I am finally on the road to good health.
I did write a letter to FFC explaining why I left treatment. They advertise that they treat lyme disease. I don't want anyone to have to waste the time and money that I have. I hope they learn more about lyme so that they can adequatly treat their patients.

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