Living with Lyme disease

Living with Lyme disease

Infections can occur to anyone and at any time if proper hygienic precautions are not taken. But, I was not bothered much about them because I thought I was taking good care of my skin and hygiene. I knew - or should I say “I thought” - that infections were minor complaints because they can last just for a few days or maximum up to a month! But, today I know there are exceptions!

Some infections can continue to trouble us for several months and Lyme disease is one of them. I know because I am suffering from it and I've found no perfect cure so far. This disease is caused due to a bacterium called Borrelia Burgdorferi. That is why it is also called Lyme Borreliosis. I contracted this infection due to the bite of infected ticks. Let me describe how this infection has affected me and how my life has beensince I was diagnosed and I started living with this disease.

Waking up in the morning

The first thing I realize after getting up in the morning is joint pains. My neck, knees, shoulders, elbows, and hips feel very stiff and painful. The morning also begins with scratching my skin. I do not experience much of itching at night while I am sleeping because of the effect of sedatives the doctor has prescribed me.

I am using this medicine in my treatment since 3 to 4 months after I was diagnosed with Lyme disease. I had to bear with several sleepless nights due to the joint pains and itching caused by this infection. Taking a dose of sedative helps me sleep well. But, its effect lasts just for 8 hours; So, when I get up, these symptoms come up again to disturb me.

Starting the day

Brushing my teeth has become an ordeal for me because of the weakness of the facial muscles. I find it very difficult to move my tongue and the muscles in the oral cavity and face since I living with Lyme disease. I developed caries in my teeth thrice in the past few months due to an improper oral hygiene. So, nowadays, I take help from a family member and let them brush my teeth at least every alternate day to maintain oral hygiene and prevent caries. I also need to take help from them for washing my face.

Breakfast, lunch, and dinner

There have been no specific changes in my diet to control the symptoms of Lyme disease. However, the doctor which provide me the treatment has advised me to eat nutritious foods especially those containing a high level of vitamin C like citrus fruits. According to him, I might have developed this infection due to low immunity. I have a history of developing infections on and off, sometimes almost once every month. But, so far, the infections were very mild like common cold, flu, etc.

This is the first time I have developed a more serious infection. The doctor said perhaps my immune system is not strong enough to fight bacteria and viruses. His opinion has a valid base. None of my friends who visited the Lyme disease prone country during our vacation contacted this disease except me. So, now, my diet contains at least one citrus fruit a day. I must say this has helped me to live better because I have not developed common cold and flu in the past few months.

I will continue to include vitamin C-rich foods in my diet even after I have completely recovered from Lyme disease. Other than including citrus fruits, I have also made some other healthy changes in my diet to improve my overall health and prevent weakness. I eat lots of protein-rich foods like eggs and almonds to prevent fatigue caused by fever and other symptoms of Lyme disease.

Going to work and taking medications

My job profile has been changed to the back-office executive. Previously, I was working as a front-desk executive to deal directly with our consumers. However, the facial paralysis caused due to Lyme disease has affected my speech to a great extent. So, I had to request my employer to allow me to work at the back-office. However, the difficulties didn’t end here.

I have been taking too many sick leaves due to fever and the frequent flaring up of itching and skin rashes on some days. I conveyed my health concern to my employer, and luckily, he has been cooperative with me. He has accommodated my frequent absentees patiently.

I was prescribed antibiotics when I developed skin rash and fever initially. However, when the symptoms persisted, I was asked to undergo some lab tests, which revealed Lyme disease. Based on the diagnosis, the doctor changed the list of antibiotics from my treatment, which I am using regularly. But, the recovery has been slow probably due to my low immunity.

Prevention of complications

If I had paid heed to the warning by the public health department about the high-risk countries for Lyme diseases, I would have probably been spared of these symptoms. I went ahead with my vacation plans and returned to my own country with this infection! Anyways… I suppose it is wise to learn from our mistakes than pondering about what’s already happened.

Now, I take utmost care to prevent any infection caused by ticks-bite. I have been informed about the steps to prevent Lyme disease and its complications like using insect repellents, applying pesticides, removing ticks promptly, and reducing tick habitat. I also follow the healthy dietary habits, drink plenty of water, and take enough rest to prevent weakness, fever, and other symptoms of this disease. Since I started living with Lyme disease I have also stopped the use of moisturizers and other chemical-laden skin care products as the toxic effects of the chemicals in them may worsen my skin symptoms.

What are the daily limitations and what are the fears?

My doctor has assured me that the cure for the infection will resolve within 2 or 3 months. Actually, in my case, the duration of this illness has prolonged a lot. Most patients recover completely within a few weeks of contracting Lyme Disease. However, only a small percentage continue to suffer for about 5 to 6 months. About 3 months have already passed. So, I hope, in the next 2 months, the symptoms should reduce completely. But, till then, I will have to live with Lyme disease.

I am sure you will understand how difficult it is for me to carry out routine activities with facial paralysis, severe weakness, fever, and skin rashes. Though the skin rash is much less now; I do get severe itching sometimes, which is difficult to control. I avoid going out with my friends or relative as I fear being caught in an embarrassing situation due to the intense itching. Also, the rash looks a bit odd like a “bull’s eye.” What happens when the rash appears is that it spreads outwards in a circular fashion.

Then, over the next few days, it begins to resolve from the center. The end result looks like a faded area at the center of the affected skin, which becomes darker as it moves towards the outer area. I wear long sleeves and try to cover my body as much as possible to hide the rash.

What would be my life with Lyme disease in the future?

I am hopeful the infection will clear up in the next few months. But, I am worried about facial paralysis, and arthritis. My joints are damaged a lot. So, the joint pains might persist for a longer duration. I might also need a few more months to gain back the strength of my facial muscles. I am also worried about my skin. It’s no longer clean and clear as it used to be before. I am not sure whether it will ever be even-toned with a natural glow I had before I started living with Lyme disease.

What are the risk factors?

The only way I could have prevented Lyme disease was by avoiding the visit to the high-risk country where this infection is prevalent or by taking precautions to avoid ticks-bite. I suppose everyone should keep these simple points in mind to reduce their risk of infection.

The evolution of Lyme Disease

When the symptoms began, the first thing I noticed was a skin rash over my hands and feet. The rash spread in a circular manner and resolved in the same way only to appear in other parts of the body. I also develop paralysis of my face along with joint pains, stiffness of the neck, fever, and itching. The symptoms have reduced to some extent over the past 2 months. But, as told by my doctor, I might have to wait for another 2 or 3 months of treatment to recover completely.

What are the psychological effects when you have Lyme Disease?

The dependency on others to do simple tasks like brushing my teeth, the fear of developing itching while in a public place and the thought of never regaining my natural beauty are some concerns that haunt me all day long. It makes me feel very insecure to the extent that I have started avoiding going out for a movie or dinner and meeting my friends. Only time will tell when and how I will be able to live a normal life again! 

Dr. Jyothi Shenoy

Written by Dr. Jyothi Shenoy

Dr. Jyothi Shenoy is a doctor having a clinical experience of more than 15 years. She has an expertise in treating acute and chronic diseases like obesity, IBS, asthma, arthritis, Autism, ADHD, hypertension, diabetes, high cholesterol, allergies, cancer, infections, and skin diseases. She believes in treating the patients in a holistic manner. She aims at educating the patients about the illness and providing tips related to their lifestyle and diet to ensure a long-term relief from the disease and preventing its recurrence.