“Patients with Lyme need that people know this disease exists”

Patients with Lyme need that people know this disease exists

María del Carmen lived 30 years with Lyme disease without knowing her symptoms. The strongest one was deafness accompanying her since. Finally, she found an explanation. Claiming for a better acknowledgment that medicine should have to this illness.

When did you start with Lyme disease symptoms?

Currently, I am 59 years old. It was when I was 28 that everything started. I was ill. I suffered strong stomach pains, but nobody answered my questions. Suddenly, a year later after the first symptoms, I started having strong dizziness. I lost my hearing. I lived in the countryside in Huelva, where I had hives. Ticks and bees bit me, but I did give it importance. Now I know what this disease is.

What did you do to treat that sudden deafness?

I went to the Puerta de Hierro Hospital in Madrid. I suffered a sudden deafness possibly with an autoimmune origin. They didn’t answer any other information. At that epoche, I stayed three months without getting out of bed. It happened 30 years ago. I think that at that time I didn’t know anything, though the situation is still the same. They gave me a corticoid treatment. In three days I was much worse.

How have you been dealing with the symptoms since then?

During all those years, after the deafness attack, I noticed I was not healthy but not ill, I could continue with my life. I suffered a total hearing loss and in a few years, they installed a cochlear implant on me. Even so, the pains and dizziness continued, I woke up with a flu feeling, with my stomach hurting and the results showing a few bad parameters like the C protein reactive, but without knowing why. For so long they never told me what was happening to me, until two years ago when I was very stressed due to my father’s death and my work. Dizziness came again, I couldn’t deal with my soul, I was feeling horrible having tachycardias. The doctor prescribed me antidepressants and I thought “How this has anything to do with a psychologist”. Thirty years ago they only knew that what I had affected my hearing, eyesight, and heart. Now I know that it is post-Lyme deafness. Another thing is that the doctors understand this disease.

“In 30 years suffering the disease, they never diagnosed me”

So, do you have a clear result now?

Yes, now people know more about it. I passed some special analyses. I went a year without taking the antidepressants they recommended to me because I am a very psychologically stable person. I wanted to go to the origin. I already read about Lyme. The analyses showed I had antibodies and other bacteria. My surprise was that in 30 years with the illness they never diagnosed me. I began with the treatment in a time I couldn´t with myself. I thought I was going to die. I have been recovering strength little by little and being conscious. I wasn’t crazy, but it was my life with a disease. A healthy person doesn’t feel like they can´t get up.

What do you think has happened so that you didn’t have a diagnosis?

The issue with the illness is Social Security, is that the medicine in general only recognises it in its acute phase, not in the chronic phase. Bees and ticks bitted me all the time, but I hadn’t any posterior symptoms. What I do know is that I started feeling ill and then I went deaf. I always knew there was a cause, but doctors don’t recognise this type of Lyme or haven’t studied it. I would like Social Security to recognize it, but they treat symptoms with patients with a treatment that does not recover you and the problem with  Lyme is that your brain is suffering an inflammation or in the nerves. The origin of these infections is not normal. It is a bacteria that hides. That’s why it affects the immune system, what happened to my ears.

“The physician’s acknowledgment is highly necessary. Other European countries are more conscious of the disease”

What have you done these years in the day-to-day to deal with the disease?

As I have been years I already made the idea of it, some days I deal with it and others think “why I have to deal with it”. In general, I felt like an abandoned person to God. Since they gave me the cochlear implant anyone said anything to me during a revision. My case wasn’t like other deafness cases. The instability I have prevents me from doing many things. When I couldn’t hear the tinnitus. The only way of stopping the sounds was meditation. Now they tell me to go to a psychiatrist. I think “No. What can ́t stand is feeling bad. I don’t feel bad because of hearing loss”. Currently, I have been working for several months, I am getting my treatment. I feel much better, but I know this can attack me again.

Have you shared this experience with other people suffering from Lyme?

Indirectly through an association, I write them emails or WhatsApp, but I still don’t know anyone personally. The sister of my sister-in-law has been off work for a few years due to a tick bite.

When talking, what do Lyme patients have in common?

Lyme patients need support from the institutions and mostly a diffusion campaign explaining the disease exists. Although it is manifested differently in each person, a diffusion of the disease is needed. An appreciation from physicians is also necessary. They have to study this disease because they don’t know enough about it. It only occurs in Spain. In other European countries such as Poland or Austria, people are very conscious of the disease’s existence.


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