“It was very hard to realize that I was never going to be able to work again”

Lyme patient

Margareta 77 years old, caught borrelia for the first time in 1974, when she was 30 years old. In these 47 years, she has never stopped fighting. Although she has had some recovery, in February she had the same symptoms again and some more that aren’t the usual ones. To cope with the disease, she is currently being treated with liposomal antibiotics. She is a strong woman, she doesn’t give up and hopes to recover and have a normal life again.

How are you today? Do you feel healthy?

I still have some symptoms. I have pain on one side of my head, so I am taking pain killers. My old symptoms came back in March or April and I thought I didn’t want to wait and get worse. The doctor I used to have in Germany told me that once the symptoms reappear it is better to start treatment as soon as possible.

I am still tired, because with these treatments the bacteria dies and release toxins in the body. I have three months left on liposomal antibiotics. Then I shall have new tests to see if it is necessary to continue with the treatment or not.

Since I came to the hospital 3 weeks ago, I feel much better. I have more energy and when I walk I do it quite fast. Before, I walked very slowly because I was very tired. I had almost no energy. For me that was the worst part, not having the energy or strength, even, to open a bottle. Also, It was burning under my feet and I had a pain in the left side of my face. I had red spots that were sore in my face, sweating and having chills at nighttime, which indicate a co-infection with Bartonella. This was the most painful. I was very tired and sore. Before coming, the left eye got bigger. It was as if it came off, it felt like a knife was being stabbed in my bloody eye. Muscle, joint pains and a sore throat. It was like when you have the flu, but I felt worse. Now I feel better.

Did you realize when the tick bit you?

I didn’t notice the sting. The symptoms then were fever, sore throat and I felt like I had a bad cold. After a while, I started to feel tired. Walking to school from where I lived was exhausting. Furthermore, I had severe headaches, making me feel even more tired.

The second time, I’m sure it was in 1990. We moved to a part of Sweden, where there were a lot of ticks. The roe deer were full of them and since we had a dog and a cat, who came in with ticks in the fur, I am sure some of them stung me. Also, one day I found one in bed full of blood. Then I got worse, in the 90s I was really bad. I couldn’t work as a nurse again. I was unconscious at work brought to Hospital. Had low blood pressure and blood sugar. Test showed Hypophysis insufficiens. After this I have been treated with Hydrocortisone for 25 years. 2018 I could stop the medication the Hypophysis was working again after two and a half years of antibiotic. Treated by doctor Nicolaus at the BCA-clinic. It was very hard to realize that I was never going to be able to work again, because I loved what I was doing.

My sister-in-law told me, then, that her brother had very strange symptoms and could not walk well at only 30 years old. Apparently, he had been bitten by a tick. His doctor in Sweden told him about Dr. Nicolaus in Germany. Thanks to him, he got better and could start working after 10 years of sick leave. So in 2015 I called Dr.Nicolaus and went to see him. I went there several times, and they gave me antibiotics and, of course, I got better.

In 2020, I started a treatment with disulfiram, a drug for alcoholics, which was found to work very well against borrelia. This idea came from the United States. At that point, I started the process with Dr. Nicolaus and it was very hard, the symptoms got worse, had a lot of pots. After 6 months of Disulfiram treatment, I got much better, but in February 2021 the symptoms reappeared. The subcutaneous nodules along arms and legs, which I have had for many years, got bigger again and were sore. It’s a rare symptom. Hopefully this treatment with liposomal antibiotics will finally kill the bacteria and the nodules will disappear.

How has your experience been and how has borrelia changed your life?

I couldn’t even swim in my pool in France more than 20 meters, because I was out of breath. Moreover, I couldn’t lift my arms over my head, and of course when I was sick I couldn’t dry my hair by myself. I am very strong and a fighter, but it has been very hard. Despite everything I have had a good life, with many friends and the family. Since they knew what I had, I didn’t need to explain to them every day how I felt.

And also, there were the mornings when I couldn’t get up. That was hard, but now it’s much better. I can get up at 7:30 in the morning, never before, then I always woke up at 10. Sometimes. I had to sleep up to 16 hours per night and still have to sleep one hour in the afternoon. I also had lots of extra – systoles and a heart specialist in France told me to have an angiography when I was back in Switzerland, because he had seen something on my electrocardiogram.

The angiography was good, but when I told this Doctor that the heart problems are due to my Borrelia infection. He didn’t take me seriously!

Now with your experience, what would you say to the specialists?

What I would like to be able to say to the doctors is, first, listen to the patients and believe what they tell you. Years ago I told all the symptoms that I had and one even told me that there was no disease with as many symptoms as I had. I told him that maybe the disease was not yet known.

People have to realize that this is real, this is my situation and of many others. And more so, in a country like Sweden where there are so many ticks and so much borrelia, especially in the south. Doctors must study this disease.

Were you relieved when they found that you had borrelia?

Of course. And also, when I tried to find out what these nodules were and the doctor laughed and told me that it was nothing, just fat. I refused to listen to the doctors, but then Dr. Nicolaus performed a biopsy from a nodule and sent it to the United States. Three months later the results came back saying that there was borrelia and it was active in the body.

What would you say to other patients who have the same symptoms?

I would tell them to remember if they have been lying in the grass or walking in high grass, that if they have seen ticks to be checked for a bull’s eye bite (three to 30 days after an infected tick bite can appear a red area that sometimes clears in the center and leaves a bull’s-eye pattern). If you treat early with antibiotics you might not develop a chronic Borrelia. 

You should go to a doctor who will listen to you, learn about the disease and try to understand what this is. There is a lot of information on the Internet. For me it was easy because I have studied two years of microbiology, I am educated as a nurse and have studied a little Latin, but it is not so easy for everyone. Although there are articles that you can read despite not knowing medicine. And above all, don’t stop fighting, don’t give up.

Do you think you will return to your life as it was before suffering from borrelia?

(Doubt) Sure, I’ll get it. I have never given up.

I am going to return to France during the summer, while I will be in contact with Doctor Bueno, and he will take new tests and he will tell me if I need to continue the treatment for more than three months. So, I will continue with Doctor Bueno who is a great doctor, and his team are also very good, so I am very happy to be here.


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