Friday, February 25, 2011

Thirty-five Years With Lyme--sixgoofykids

I have most likely had Lyme for thirty-five years. I have a great immune system so was healthy most of the time though I had random symptoms for as long as I can remember. I was disabled by the illness in 1982, 1986, and 1991.

Through my healthy years I had weird issues, like in the fall my shoulders would ache. I thought I was just in bad shape and the heavy sweaters caused pain. I had terrible fatigue and wondered why everyone else wasn't as tired. They were all problems that could be considered somewhat normal.

Then in 1982 when I was in college, I was so tired all the time that I got up only for class. My roommate was very worried and took me to the emergency room, where the doctor told me not to drink so much alcohol. This lasted several months, then resolved with a lot of rest, exercise and sunshine. Ironically, I had terrible insomnia despite the debilitating fatigue.

A repeat happened in 1986.

In 1991, all of a sudden one day I had severe abdominal pain. My sister and her husband were visiting during spring break (they were college students) and we were at the Children's Museum. I had to go sit down for a while, then I told them I needed to go home. The pains were so severe I couldn't even drive. By that night I was at the emergency room, but the doctors could find no problem with me. They gave me IV fluids to help my low blood pressure, then released me.

Six months later I was still experiencing extreme fatigue, but my doctor could find nothing wrong. I was seeing a mercury free dentist ( and he told me about the possibility of mercury being at the root of my health problems. I had my amalgam fillings removed and replaced with white fillings. I had flu-like symptoms after the removal and took many supplements to help remove the metals from my system. After this my symptoms resolved for twelve years.

I had flare ups during pregnancy but other than that was very healthy and energetic. People asked how I did all that I did. I ate a good diet, exercised, and took supplements.

About five years ago, I became very ill with what we suspect may have been psittacosis. I had all the symptoms, and the bird that died did, too. I took twenty-one days worth of doxycycline at 300 mg. per day. I had severe breathing issues, pain across my back, extreme fatigue, extreme weakness, fever, etc. After the twenty-one days, I still felt bad, though the respiratory part of the illness had gone except for shortness of breath. The shortness of breath got so bad I would hyperventilate.

I slowly started working out again, got a lot of rest, ate right, and tried to get better. We moved, and when we were moving our bed, we discovered it was full of mold. We got a new bed, and I started getting better. A short time later my knee started hurting so badly I had trouble bending it. Stairs were difficult, and when I sat I had to keep my knee straight.

I eventually went to the doctor for the air hunger and tested negative for asthma. The doctor said I was just hyperventilating like it was no big deal.

More symptoms started--symptoms that all seemed unrelated. GI problems were severe. I dropped fifteen pounds in three months. I had constant, severe diarrhea and stomach pains when I ate. I eventually became weak and fatigued.

I had testing done for celiac disease. The tests were negative, but I found that I felt better on the gluten-free diet so ate 100% gluten free for two years. I continued to have symptoms and continued to get worse. I eventually cut out other foods, but it didn't help.

My doctor diagnosed me with Somatization Disorder, so I started researching on my own to figure out what I really had. I can't really blame her entirely for the psych diagnosis--the symptoms are even incredible to me!

Here's the list: fatigue, night sweats, air hunger, heart palpitations, diarrhea, lack of appetite, weight loss, disorientation, mental confusion, getting lost driving, trouble reading, trouble writing, trouble talking, word recall problems, trouble falling asleep, trouble staying asleep, rashes, hair loss, bruising, TMJ disorder, weakness, joint pain, muscle aches, ringing in the ears, food intolerances, floaters in eyes, light sensitivity, sound sensitivity, touch sensitivity, mood swings, rage, rib pain, allergies, alcohol intolerance, etc.

Eventually through my research I discovered Lyme Disease. I sent away for a test kit from IGeneX labs ( and took the kit to my doctor so she could run the test. The test came back with eight positive IgG bands. She told me that I previously had Lyme but that now it was Somatization Disorder.

I went to an LLMD (lyme-literate MD) in NY for treatment. He's a wonderful doctor and has gotten me on my feet again. I have good days and bad days, but many of my symptoms have resolved. What remains is fatigue, air hunger, insomnia, fibromyalgia pain, and GI distress.

Recently, I heard about a treatment by a doctor in Germany with an instrument called the Bionic 880. It's a new technology using infrared light. There have been promising studies done on it's use with cancer and Parkinson's patients. The doctor who treats Lyme claims higher than a 90% success rate, so I thought that I'd rather spend the money to give it a try and find out that it does not work, rather than wait and find out it does.

ILADS treatment ( is the best we have right now, but it's not a cure, the most we can hope for is remission. I am hoping for better and am willing to give something new a try.

2010 Update: She is completely better now. To read the full story on her blog, follow the link below.

sixgoofykids, Ohio

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