Idoia has gone through Lyme twice. She recovered on both occasions. Like many other patients, she doesn’t remember being bitten. Positive results of the tests by borrelia and the treatment success leave no doubt about what happened.
Idoia, you are in Lyme treatment. How do you feel?
I’m feeling pretty good. I´ve reached a point where I am not at 100%, but I am in the process of reaching it. Of course, I am much better compared to three months ago.
What do you mean?
I was feeling bad physically and mentally. Especially with pain and physical boundaries. I´ve changed a lot in the last few months.
Since when have you suffered from Lyme?
It is the second time I am facing Lyme treatment. A few years ago, in 2012 I started noticing pain and symptoms. One year later, they diagnosed me with Lyme for the first time. I started treatment. It wasn’t possible to eliminate it, only deactivate it. After that treatment I started a normal life, but in 2020, a one year after giving birth I started with pain and symptoms. I suspected that I wasn’t alright. In November they detected me with borrelia again.
With those symptoms appearing in 2020, you thought you had Lyme again?
Not at the beginning. I had a twin pregnancy and it was very hard. Despite how much the body suffers, I thought it was due to the lack of sleep or the exigence of caring for children. I was feeling those symptoms for more than a year. My pain was worse and was more clear and located. I started thinking about Lyme. When I realised the analysis, they detected me again borrelia. It came out again due to the changes pregnancy can provoke in the immune system.
In your case, from the first symptoms to having the Lyme diagnosis, not much time passed. How did you believe you had the illness?
I was lucky indeed to have a fast Lyme diagnosis. It avoided treating diseases they don´t. My general practitioner gave me the first tests. The diagnosis was rheumatoid arthritis. My hands and feet hurt. I was 26 years old then. The rheumatologist explained that it was a chronic disease and that it wasn’t going to refer. The treatment option they gave me were corticoids, a type of medicine with side effects that will not make the illness disappear. I came out of the consultation feeling bad and decided to investigate other possibilities. We ended up attending a rheumatoid arthritis specialist with an open mind that answered us what we already read about the disease. Of course, we went with the idea of what Lyme is. In September 2013, they diagnosed me with rheumatoid arthritis and Lyme in March from the next year.
Did you remember having suffered a tick bite or any event as the disease origin?
No, no in the exact moment. I reside in a city although I´ve always had contact with the mountain and I frequently go to the village. We had a dog we had to remove the ticks without making a deal of it. In my house, they remember I came back from a caping telling a tick to bite me. I don’t remember it as something terrible. This disease reveals symptoms after a year from detonating that can be a stress fact. It is possible that in my case the illness was there a long time ago.
You have gone through it twice. What is the most difficult issue for you with the disease?
I consider the hardest thing is that the limitation is supposed to be day-to-day. I am an active person. The fact that I can’t do things on my own or how I did them before is difficult physically and mentally. This second time the symptoms are not that strong but it’s still hard because I cannot attend to my children or keep the rhythm that life requires.
What do you think would be your situation if you had been treated for rheumatoid arthritis?
I don’t notice how I could be if I would accept the first treatment. They proposed to me an immunosuppressant treatment but Lyme depresses the immune system already. I consider there is ignorance at all levels, going to the general practitioner or rheumatologist is like fighting a wall. If they know something about Lyme is in the early phase, when the tick bites you. More people are suffering from this problem. It can be treated with antibiotics if the result is positive but is not the same with Chronic Lyme. Each time I attend a rheumatologist it is a fight and an energy loss I don´t own.
Other countries recognise it and there are many more patient associations. There is more visibility. What steps do you think Spain can take?
What is most important to me is social awareness in the health professionals field. They need to see what they have to face and are open to other therapies. There are many doctors with a closed mentality. They know about their specialty, but when they miss something they don’t have the humility to recognise it. Treatments are diverse and work. The fact that they don’t know about them doesn’t mean that they are magic or that they don’t work. I think another goal is to have treatment in Social Security where, at the moment, they don’t have the tools to diagnose and treat Lyme. It has to evolve because it is an expense at all levels and all people cannot afford it. In any case, this is my experience, it has worked for me but each case is completely different.