Received October 28, 2009
Hi my name if Chris. I am calling from Oregon. You can make this audio available publicly.
My family relocated from Idaho to Oregon in 2003. In Idaho, I had never heard of a food allergy or IBS. When I got to Corvallis, all my neighbors had chronic GI illness. My kids friends kept throwing up in my car. People could not eat wheat or other things. I didn’t think anything about this until 2003 when three of us got sick after eating at a Thai restaurant in Wilsonville.
The illness cleared up in everyone but me. It started with anal itching and yellow floating stools which went on for three years. After $8000 in medical in medical tests, three board-certified gastroenterologists, two infectious disease specialists, and sixteen ova and parasite exams, the only thing found was Blastocystis ‘hominis’.
In the first year and a half, I had six stool tests, all negative, and an endoscopy/colonoscopy. Blastocystis ‘hominis’ started showing up when we switched labs. Doctors tried Flagyl, Bactrim, Nitazoxanide, a combination of Flagyl with Furoxozone and Nitazoxanide. The symptoms would go away for a week and then come back. Eventually, even the antibiotics would not make them go away.
I developed skin rashes and joint pain. In 2006, I started developing severe fatigue. I was unable to complete a full day at work. I would have to find a room in the building to go lay down for an hour or two in the middle of the day just to complete the day.
One day, in 2006, I woke up in complete confusion. I could not even remember my name. I could barely stand. This went on for a week. I just called in sick. I went to doctors. They had no idea what was going on. My arms and legs were numb. I would try to go to work. I would stand talking to my boss, but I would almost collapse. I went on medical disability for months. My employer had to pay over $13,000 to cover my disability bills. Fortunately, they kept my job open so I was still able to support my family.
I went back, but I had severe diarrhea. I would have a bowel movement every 20 minutes.
(Part 2 of audio)
One local doctor said he would contact the NIH but he never did. We contacted the NIH and they said there was no proof this (Blastocystis ‘hominis’) could cause this disease. We contacted the CDC. They never returned our phone calls.
We had absolutely no help from any physicians in the area. They just shrugged their shoulders. Some said they had been seeing this for years, and really did not have anything to do about it. They said there was nothing they could.
My disease continued. I would get night sweats. I would wake up. My hands and feet would be numb. It would take 20 or 30 minutes for me to get feeling back into them in the morning.
At work, I often get a burning feeling on my hands and face. I developed a horrible open sore on my arm that would not heal for weeks. Often when I am sitting at work, my muscles will start twitching uncontrollably. It feels like someone is jamming an electrical cord into my head.
When I go to the doctor, they say they have no idea what is happening…Blastocystis ‘hominis’ is controversial…they act like I am trying to pull some kind of trick on them or something.
They’ve given me referrals to a gastroenterologists, rheumatologists, a movement specialist. It seems like they will do anything as long as it involves me spending money. They won’t do anything to actually treat the disease.
I have a medical file that is 8 inches thick, full with tests. I do not have cancer. I do not have AIDS. I have no medical problems other than Blastocystis ‘hominis’. I had no medical problems before I moved to Oregon. Now multiple members of my family have this.
Last year , it started getting into my eyes. I started getting recurrent corneal infiltrations. The ophthalmologist treated this but I still have constant in my left eye.
I really don’t know what to do. I worry about losing my job all the time, and not being able to support my family. The local doctors just keep referring me to people. They charge thousands of dollars for tests that do no good.
I hope somebody can do something can do something to stop this disease. I don’t understand what they are doing in Washington with all of our money. It seems like they will spend it on anything but actually fixing the problems that are making people sick.
I am just disgusted with our medical system, the medical researchers in our country, and I hope somebody can do something…