“I had to stop working at that moment when I was opening my clinic. I couldn’t get up from the bed or move. It was like flu but multiplied”
The vital run-in of people with Lyme coincides with some moments or stages which are decisive: life interrupts and a path done by different specialists without obtaining a clear diagnosis start. The abandonment and vulnerability feeling where they are is huge. While this happens, Lyme disease advances in the organism giving rise to other pathologies that weaken the immune system.
This is the case of a patient that pulled out a small tick from the skin on a trip back from the Pyrenees. Nor her flu symptoms, nor the erythema, nor the bite alerted the referral physician. The path of symptoms and specialists has been endless. It will continue until finding a solution, as he comments, has to exist. It is her story (at the express wish of the interviewee, we respect her privacy)
How do you feel currently?
I don’t feel well. If I comment I improved it is to be positive. I felt awful and I still am. Lyme provoked me to have erythromelalgia. I experienced the same symptoms for four years. The pathology is vascular accompanied by burning, like if your body was flaming inside. I have general inflammation. My legs turned red. The neurovascular affection feeling is like having a flare crossing all your body.
Since when have you been diagnosed with Lyme?
They diagnosed me in 2018, but the first symptoms appeared in 2011. The day after coming back from a trip where I got bitten by a tick. I didn’t give importance to the doctor either. It occurred during the 2011 Holy Week. In June, I started losing sight in an eye. I suffered brutal migraines. I couldn’t move. Since then, I started attending physicians and realising analytics but, they didn’t find me anything. Until then, my life was great. I am a very calm person. I studied in Barcelona. I moved one year ago back to my city. The first symptoms were present during seven months with migraine pills and natural medicine treatments. I started improving. I was feeling better.
When did it get worse?
In 2015 my eyelids were inflamed. I couldn’t open my eyes. I started again finding a solution. They detected the HANA antibody. I also attended an allergologist, but no one thought about something systemic. Since then, migraines started again like my fall into the abyss. My joint pain was too much. The nodes were getting inflamed. I had to stop working at that moment when I was going to open my proper clinic because I couldn’t move. It was like the flu but multiplied. I began vomiting, having intolerances, and I lost a lot of weight. I experienced Lyme symptoms. They attended me in a hospital in Seville with antihistamines that helped me for a few days. From then, they suspected I could have an infectious disease. Antibiotics healed me suddenly, but I got worse again and erythromelalgia appeared.
What does the disease mean to you?
I have been at home for the last three years. It is a disease that worsens with movement and any change of temperature so they always take it by car. I am not independent. I felt happy when they diagnosed me because it was a visible illness.
How did you end up having a Lyme diagnosis?
It occurred through a friend that knew a person in the United States that passed a disease due to a tick bite. I spoke to him. I realised I got bitten. I was so bad that I didn’t even look if there was any specialist in Spain so I went to the US where they diagnosed me with Lyme and treated me with antibiotics for three months. I never felt better and came back to Spain.
Did you continue the treatment?
I waited two months and already went to a specialised clinic in Spain. They treated me there. I did not improve much either, although I came back before the pandemic to retake my antibiotic treatment and pills at home. During the pandemic, I visited another specialist but I ended up my treatment because the symptoms of erythromelalgia were fatal. After that, I attended a rheumatologist who believed I may have a Connective tissue disease. They send me injections that reduced the inflammation. I am looking forward to a specific erythromelalgia treatment. I continue Lyme hoping it ends, but I still don’t know what goes on.
Lyme as a source of other illnesses
Has it helped to give a name to the disease after several diagnoses?
At the first time, yes. But after I didn’t see any improvement, I didn’t care what the disease name was. My case is clear, but why do you comment that I don’t improve?. Lyme is the origin for sure, but I may need something to alleviate the other illness.
What has been the most difficult?
What keeps me with courage is to think I am going to get better. I haven’t found what is going to make me feel alright, but there has to be a solution. It is a rare and hard treatment disease. One of the worst things has been my vulnerable situation respecting physicians. Among the multiple “I don’t know what is happening” if I have heard, I realised they don´t give the necessary importance to the discomfort you suffer due to the lack of knowledge. The answer from medicine has been lack of involvement and passivity because they prefer having all things assured and leave someone behind although that person is sick.
How is your day-to-day?
When I get up, I have to apply cold water for half an hour to my limbs. I live with conditioned air. I have help with all the housework. They make me the food, the cleaning, and my father visits me every day because I can’t go to the supermarket. It has been going for three years.
Have you received support from people close to you?
Yes, I am very fortunate because I have my parents, my uncles, and cousins. My father is especially always there for me. I also have good friends, but the human being indeed evades pain and many people distance themselves from me. What provokes my anguish is that my parents are getting older. I have total dependence on them. However, I am strong and positive thinking I will get out from this, that I will be as I was before. I also get depressed, but I can’t allow it. If I did, I wouldn’t be able to afford it.
What do you consider health authorities could do to improve the Lyme patients’ attention quality?
More Lyme information should exist as more sensitive diagnosis tests, also accepting there is other analytics being used in other countries. They need to empathise with patients to realise it is not for fun. They look away because they don’t have an answer. I don´t know if it is due to their ego or for what reason.
Do you believe your life will be as before Lyme?
As I feel so sick I am happy to function again. Starting to get better, get out will be a victory. I hope I can retake my life. It has cut short my life development.