Kata’s experiences with the labyrinthine healthcare system.
How did she contract the disease?
It started with a classic tick bite. What’s more, I picked up the tick in the garden of the hospital in Székesfehérvár. A few months later, my hair started falling out, I was very tired, sometimes sleeping for 16 hours, and I was tormented by various inflammatory diseases: I had ovarian, intestinal and heart muscle inflammation, as well as intercostal neuralgia. Then a series of internal medicine, gynaecological and gastroenterological examinations began, but no one found anything. The following summer, another tick bit me on the inside of my left ankle. There were no symptoms in the first few days, but after two weeks, a red spot began to spread, reaching all the way up to my knee, reddish-purple in colour, itchy and very painful when I touched it. The dermatologist said it was erysipelas, but I didn’t believe it. I forced my GP to do an ELISA test, the first of which was negative, but the second was positive.
How was the treatment carried out?
After the diagnosis, I took Zinnat for five weeks and had no problems. That was in November 2019. Then, in April 2020, I developed a very severe sore throat, which was followed by a course of antibiotics, and that’s when the ongoing battle with multiple illnesses began, which continues to this day. They looked at everything, examined everything, and ruled out all deficiency diseases. We went down many wrong paths. Now I am on a course of doxycycline. I am on day 22, my symptoms are starting to subside, but the cleansing process is terrible.
Where do you get information about the disease?
There is a Facebook group called “Lyme patients for each other“, which now has nearly 1,600 members. We share information with each other there. And we are saddened together by how inadequate the differential diagnosis of diseases is. Immune diseases are very similar to each other. It is very difficult to determine whether it is borreliosis, bartonellosis or babesiosis, or perhaps an autoimmune disease. We realised that we had to force doctors to think outside their own narrow professional systems. Internists only focus on the circulatory system and the abdomen, pulmonologists only on the lungs, and gynaecologists only on problems with the ovaries, uterus and vagina. Even when I visit the institute for rare diseases, they often say that it is an autoimmune disease. The patient is forced to research the background of their illness themselves to find out that Lyme borreliosis is actually behind the symptoms.
What advice do you give to others in the same situation?
I have learned two important lessons during my illness. On the one hand, after a while, people start to attribute everything to the consequences of the disease. That is why I warn everyone against hypochondria. On the other hand, it is essential to have a doctor who can coordinate the entire process. If there is no such doctor, then we have to manage the process ourselves. Unfortunately, few GPs are able to make a differential diagnosis. There are few specialists who perform these tests within the public health system. It would be good to have a central recommendation, a protocol for GPs, which would help them navigate the maze in cases of suspected Lyme borreliosis. This problem should be addressed at a systemic level. I hope that the time will come for this…
Source: weborvos.hu
