The drama of living with Lyme disease: “This disorder steals your life. And it can happen to anyone”

It’s been more than 10 years, but Roco Muoz He remembers it like it was yesterday. That rash that her daughter Carla got on her foot during the holidays seemed like a target. With a red dot in the center and a ring around it. It was no bigger than a two euro coin and she had neither noticed any bite nor did it bother her, so we didn’t give it any more importance, she remembers. Unfortunately then we did not know that this was the first sign of a terrible disorder that was going to change our lives. Muoz pronounces it bitterly: Lyme’s desease.

It took more than five years to name the cascade of symptoms that appeared and that still affect the health of Carla, who has serious neurological problems and has no feeling in part of her legs. Because the disease, which is also known as the great imitatorcamouflages its multiple faces and is often confused with other disorders, such as fibromyalgia, chronic fatigue, rheumatoid arthritis, multiple sclerosis…

Like Muoz, Naiara Olague He also claims to have lived a true pilgrimage in search of a diagnosis that would explain the neurological, ophthalmological and cardiac problems that he began to suffer in 2016. I did not find the key until 2018 and because I insisted and moved because the doctors did not think about this disease . They even suggested that I make an appointment at a Psychiatrist, laments this 39-year-old Navarrese publicist who, together with Muoz and other victims, has denounced this week in the Senate. the invisibility of Lyme disease in Spain.

We need to take measures against this silent epidemic, they claim. This can happen to anyone and actions are needed to prevent it and diagnose it better now.

This multisystem disorder is caused by infection with bacteria of the genus Borrelia that are transmitted through the bite of a tick – mainly Ixodes ricinus in our midst. In Europe it is considered an emerging disease. And, in fact, in 2018 the European Center for Disease Prevention and Control (ECDC) included the neuroborreliosis, one of the main complications associated with Lyme disease, on the list of disorders to especially monitor. However, there is no accurate data on its incidence, especially in some countries on the continent, such as Spain.

confirms it Rosa Estvezresponsible for epidemiological surveillance of zoonotic diseases at the National Epidemiology Center: There is no national surveillance protocol for Lyme disease yet.. They are working on it, he assures, but it is not active yet.

Although this general overview of the state of the disease in our country is missing, there is data that allows us to glimpse that the disorder is a growing problem in Spain. For example, Estvez’s team conducted a study on hospitalizations associated with the disorder between 2005 and 2019 that showed a significant increase in admissions, as well as an expansion of the geographic distribution of the disease.

During the period analyzed, 1,865 patients admitted with Lyme disease were registered, with an increase in hospitalizations in those 15 years of 191%, points out the report, which details that the most frequent problem among the admitted patients was neurological impairment. Obviously in this study all data at the outpatient level are lost but it does allow for an estimate of the impact of the disease, says the researcher, who recalls that the appearance of more cases is related to the existence of the transmission vector, ticks.

The more vectors there are in certain regions, the more disease occurs. In the study, the areas with the most patient admissions were Asturias (16%) and Galicia (13%), although the increase in hospitalizations occurred in all the autonomous communities except Extremadura.

Ana del Cerro She is a researcher in the Animal Area of ​​the Regional Agri-Food Research and Development Service (SERIDA) of Asturias. For years he has been studying Lyme disease in the region, which due to its temperate and humid climate, abundance and variety of flora and domestic and wild species, brings together very favorable conditions for the survival and maintenance of the free phases of many species. of ixid ticks that remain active most of the year and have abundant animals on which to feed and thus perpetuate their cycles. Her team estimates that the prevalence of bacteria of the genus Borreliathe causes of Lyme disease, It is around 4% of the adult ticks collected of the vegetation throughout the entire province.

Traditionally, the humid zone of Spain, the northern half of the peninsula, has been associated with a greater presence of Ixodes ricinus, the tick that is most associated with the transmission of Lyme disease, although the truth is that in Spain there is also a lack of a real overview of the ticks that exist on the peninsula and the diseases they transmit. This mapping is currently being carried out by the GARES project, which started a year ago.

Ticks are one of the disease vectors that the World Health Organization (WHO) has put under scrutiny due to the possibility that they will increase their impact in the coming years, boosted by factors such as climate change. These arthropods, in fact, have just entered the National Plan for Surveillance and Control of Vector-Transmitted Diseases, the third part of which was presented by the Ministry of Health this week.

Main disease transmitted by ticks

Lyme disease is considered the main tick-borne disease in Europe, now is the time to act, claims Julia Ruiz, coordinator of the Public Health Working Group of the Spanish Society of General and Family Physicians (SEMG), who emphasizes that there are several challenges to address when it comes to the disorder. Thus, in addition to epidemiological surveillance and a greater commitment to research into the disease, it is also essential to promote greater awareness and sensitization about the disorder, both among the population and among health professionals.

It is necessary to think about the possibility of the disease, points out the specialist, first to protect oneself when going out into the field, and then to detect the disease in its early stages, when its progression can be stopped through antibiotic treatment. Acting early is key, continues, because without treatment, the infection can spread throughout the body, mainly affecting the joints, the heart and the nervous system, although the radius of action of the disease is extensive. The neuroborreliosisa disorder of the central nervous system that is considered the main complication of the disease, occurs in around 10% of cases, according to data pending updating from the European Center for Disease Control (ECDC).

Although it is difficult to detect this disease that is an expert in camouflage, there are some signs that can help, says Ruiz. For example, it must be taken into account that a characteristic sign of the infection is the appearance of the so-called erythema migrans, the rash that was reminiscent of a target that Carla, Roco Muoz’s daughter, had. It is a symptom that should require consultation with a specialist, says Ruiz who, however, remembers that This skin injury does not occur in all cases. In the early phase, joint pain, headache, fever, chills, fatigue may also appear. It can be difficult to identify by symptoms, which is why a fundamental key to fighting the disease is prevention. Properly protecting yourself when going to the countryside, for example by wearing long-sleeved clothing, with socks over your pants and also using repellents to reduce the risk of being bitten, is necessary, reminds the specialist.

It is also important to check your body carefully when you have been in an area of ​​abundant vegetation. This check is essential since, If detected and removed in time, the tick will not be able to transmit the bacteria that causes the disease., remember. The tick must be removed preferably within 24 hours and always using blunt-edged, fine-tipped tweezers that must be held firmly before pulling upwards, taking care not to crush the animal. Do not use alcohol, oils or try to burn them because if the tick feels attacked that is when it will inoculate any pathogen, which is not only the agent of Lyme disease, but also responsible for other problems, such as babesiosis, ricketsiosis, etc. Estvez points out.

Beyond raising awareness among the population about the risk posed by ticks, those affected by Lyme disease also call for greater knowledge of the disorder by the medical community and the improvement of both research and diagnostic techniques. the illness. This is what he points out Olga Gomez, who spent 13 years without giving a name to what was happening to her and even today continues to feel helpless in the health system. Nobody understands you despite having the diagnosis. It is terrible but sometimes I have wished I had cancer and not this because that would mean having access to protocols, recognition of the disease and treatment, even if it might not work, muses this woman from Valladolid who, like the rest of the affected people consulted, is tired. that the disorder is considered something foreign to Spain, something that is only associated with the United States, Canada or central Europe despite the fact that it has been shown that it is also a serious problem here.

To this day all I want is for what happened to me not to happen to more people., he remarks. Next to her, the American Mary Kay, nods with each of her words. Her life changed 24 years ago, when her daughter Andrea was bitten by a tick while on vacation in Galicia. It also took more than 10 years to have a diagnosis. She was a 17-year-old girl who has not been able to live. She is now 41 and all her dreams are broken. This disease steals your life. And it can happen to anyone, she laments. We have to avoid it.