Echinococcosis is a rare disease caused by tapeworms of the genus Echinococcus, also known as fox tapeworms. In the Czech Republic, it has so far been confirmed in roughly a few dozen patients. Tapeworms most commonly attack the host’s liver, and if not detected early, the disease can be fatal. The editors of Drbna described in detail the story of a patient who decided to speak publicly about her illness. But she wished to remain anonymous.
Not much is known or talked about. The pernicious mullein parasite, also known as the fox tapeworm, is a deadly killer that can live in the host’s body for many years without drawing any attention to itself. Its main vector is infected foxes, and it usually enters the human body after eating forest fruits that are contaminated with fox feces, often blueberries. After that, it usually settles on the liver, where within a few years it forms a dense network of cysts and can spread practically to the entire organ. It can also expand to other parts of the host’s body.
In the Czech Republic, infestation by this type of tapeworm is confirmed annually in only a few units of cases.
Stinging in the side and a vague finding
“For me, it manifested itself as a slight pain and an unpleasant pressure in the right hip, like when you are stung while running,” describes the twenty-nine-year-old Catherine, who learned of her diagnosis this summer. As the pain persisted, she decided not to take it lightly and seek medical attention. “That’s why I went to the hospital, where after several examinations and an ultrasound, they told me that I had a finding on the right lobe of the liver measuring 9 by 8 centimeters. Of course, the worst-case scenarios immediately popped into my head.” he describes and adds that despite the ominous finding, the blood results did not indicate that any malignant process could be taking place in the body. Therefore, the doctors indicated to her that it could be a so-called hemangioma, i.e. a form of blood clot that is relatively common in humans and is not significantly dangerous.
“That calmed me down a bit. But it was a really huge find, so they sent me for another CT scan and MRI.” says Kateřina. Even then, however, it was not possible to determine the exact diagnosis, and a hemangioma no longer seemed likely.
“That’s why they sent the results of all examinations directly to the Institute of Experimental and Clinical Medicine (IKEM) in Prague, where they specialize in rare liver diseases. And from there, within a few days, the answer came that it could be a parasite of the fox tapeworm. This was complete science fiction to me, I had never heard of it before and had no idea how I could come up with it. At the same time, I never had any problems that could alert me to a parasite.”
Decades may pass before problems appear
But the test for antibodies in the blood confirmed the assumption of the doctors from IKEMU. “It was terrifying but reassuring at the same time. I knew what I was up against and could start to fight against it. They told me that due to the size, I probably got infected eight to ten years ago, but they can’t confirm it 100% because it behaves a little differently for everyone. Like where I got infected.’
Due to the size of the find, it was necessary to act quickly. If the parasite grows to larger sizes, it needs to be surgically removed from the liver by a so-called resection. Before that, however, it is necessary to kill or weaken it with a medicine. Patients are usually given intensive treatment with strong antiparasitic drugs that contain the substance albendazole. However, these drugs are only available in limited quantities in the Czech Republic. A large dose is needed to treat tapeworms, so it must be ordered from abroad.
“For example, one tablet is enough for a common intestinal parasite, I take two a day for several months to a year. It’s actually a kind of light chemotherapy, some people’s hair appears from it, there is frequent nausea. Fortunately, I avoided this. I would like to specifically thank the head of the infectious disease department with the help of a nurse for the timely use of medication.” emphasizes Kateřina.
She lost two-thirds of her liver
After four weeks, it was possible to undergo a difficult operation at IKEM in Prague. In the end, almost 70 percent of the patient’s liver had to be removed, as well as the gallbladder. “It was a huge operation that took about five hours. But I’m happy that it turned out this way in the end, I was just one step away from a transplant.”
It has now been two months since the procedure, but the road to full recovery will still be long. But Katerina is full of optimism. “I believe that in the spring I could stop taking the medicine and return to some more active way of life that I was used to. But I won’t put a blueberry in the forest without first washing or heat-treating it,” he ends with a smile.
In the Czech Republic, there are more cases of fox tapeworm disease. Most often, people become infected by eating raw forest fruit, which previously infected the animal with its feces. “It is a new disease that has been on the rise for the last 10 to 20 years. In affected people, the parasite multiplies mainly in the liver, which is the case in 99% of cases. And because it grows only a few millimeters a year, it remains undetected for a long time.” an infectious disease specialist told Český Rozhlas Francis Stejskal from the Bulovka University Hospital in Prague. The disease must be detected and confirmed by several examinations, such as a CT scan of the liver and the collection of specific antibodies in the blood.