TB Misdiagnosis: Swedish Student Compelled to Take TB Drugs for a Year
This is the first in our series “TB Treatment Stories,” where we meet people who have had first-hand experience taking standard tuberculosis drugs, which were developed and approved more than 40 years ago. As the Working Group for New TB Drugs works with today’s researchers to develop better therapies, a look at the day to day realities of extended treatment regimen and side effects of the old drugs provides perspective on why new treatments are so desperately needed.
Today we’re talking with Carolyn, a licensed chiropractor in New York who is originally from Sweden. During her chiropractic studies, Carolyn ended up taking anti-TB drugs for a year based on a number of factors. This is her story.
How does your TB story begin?
I was a student in Sweden in the early 1980s when I decided I wanted to study to be a chiropractor at a school in New York. As I prepared to move to the U.S. and get my green card, I also did some travelling around Europe and ended up with some kind if illness, with a cough and low-grade fever. My doctor in Sweden x-rayed my chest, which showed a small amount of fluid in my lungs and pleurisy, inflammation of the lining of the lungs, from the infection. He prescribed antibiotics. Later that year, I got an x-ray as part of my green card application, and it was clear.
My green card was approved, and several months later I moved to New York to start school. The stress of moving to a new country and starting studies in another language took a toll, and I ended up sick again. I visited a doctor in New York who took a chest x-ray and saw that I still had some small spots in my lungs, probably from pneumonia. He prescribed antibiotics and followed my progress with several subsequent x-rays, and I again began to recover. My classes were challenging but I was really enjoying school.
How did you end up on TB medication?
It was really through a series of unfortunate coincidences. Late in our first year of chiropractic school, everyone in my class was scheduled to get an x-ray of their spine, so we could examine the films as part of our coursework. This was soon after I had visited my U.S doctor for treatment of a chest infection and had several x-rays taken, so I told my instructor that I would prefer not to get another. The instructor asked why and I explained about my earlier chest x-rays.
Coincidentally, earlier in this same instructor’s class we had learned how to take a detailed patient history by interviewing each other as if we were patients. During the course of my interview, I had revealed that I sometimes had night sweats. My instructor had seen our histories when grading them and put this information together with my recent chest infection and x-rays. Because night sweats are a symptom of TB, she brought the situation to the attention of the school administration. I explained that I have always had occasional night sweats (and still do to this day), and that antibiotics had finally taken care of my chest infection. However, the school insisted I have a TB skin test performed by my doctor.
I visited my doctor for the skin test, but I knew it would be positive because all children in Sweden are vaccinated against TB, which causes a positive skin test for life (see The Diagnosis Dilemma post for more on the vaccine). The test result was indeed positive. Though I explained that I had received the TB vaccine as a child, the school administrators requested that I take isoniazid daily for a year. They made it a condition for me to remain in the school.
What was your experience when you were taking isoniazid?
I was very fortunate because I did not have any side effects. I did pay for the drug myself, but I don’t remember it being expensive. I was not happy about taking a drug I knew I didn’t need for a year, but I had to do it so I could continue my studies and graduate with my class, which I did. I now have a successful chiropractic practice in New York.
Looking back, I wish everyone involved had done more research to understand the circumstances. For example, the effects of the vaccine are well known and easy to verify. And I had been cleared on the TB front with an x-ray when my green card was approved to enter the U.S. But overall I survived that stressful chapter of my life and have never had any other TB issues, thankfully.