I have been diagnosed with Chronic Lyme Disease in 2011, but my Lyme story dated a few more years back. My symptoms progressed very slowly and then suddenly accelerated. In 2010, my health went rapidly down the hill.
In 2007 my first symptoms appeared. I was accusing headaches, fatigue and shifting joint pain. But given that I was in my mid twenties, I ignored them all. My life was filled with the excitement of discovering a new continent, a new country, a new city, making new friends.
Throughout the following years, my joint pain (wrists, knees, shoulders) increased. I assumed it was due to the long cold harsh Canadian winters. Then I noted that I was no longer able to type as before. The shooting pain in my arms and wrists was there to stay. I also started to have concentration issues, could not focus anymore. The brain fog prevented me from doing my work properly, I could not find my words with ease. At that time I was still an employee. I embraced my freelance career only later on.
Early 2010 it became clear to me that I needed professional help. Thus I did a full check up with the family doctor. Everything looked fine, but I was feeling terrible. My family doctor assumed I was just tired and he gave me a note for a few days off, followed by a three weeks medical leave and one year of long-term disability leave.
When I returned to work I realized that any physical activity was triggering painful episodes that were lasting for couple of days. Before the pain used to come and go. It never stayed for days in a roll.
My physician asked me to wear V wrist splints or braces for the hands in order to give my wrists a break. I was wearing wool gloves and socks when going to bed to help with the pain.
LYME JOURNEY STARTED / ENDLESS INVESTIGATIONS
I tried massage therapy hoping that it would give me some relief for my stiff back muscles and shifting pain. Then I saw an osteopath because I was aching all over. After three sessions he admitted he could not help me anymore. My next stop was at a Chinese acupuncture specialist and a chiropractor. It did not help much. The fatigue and pain I was experiencing were preventing me from enjoying my life properly.
By the end of 2010 I was diagnosed with Carpal Tunnel and Fibromyalgia. Since my symptoms only got worse I was tested for many other diseases. I was diagnosed and offered treatment for Tendonitis, Median Nerve Entrapment Syndrome / Pronator Syndrome, Chronic fatigue, Arthritis and environmental allergies.
Each one of the specialists I have seen, diagnosed me with something. Except for the neurologist who within only three minutes of consultation decided I was “an attention seeker” and my symptoms were mentally induced. Due to his report, I lost my job. Within time, that turned out to be a blessing.
His “diagnosis” did not make me give up my quest. I was determined to find out what was my mysterious illness and to find ways to cure it. The following specialists I was seen by were an endocrinologist, enterologist, and internist.
FIRST LYME DIAGNOSIS.
The internist I saw (in Europe) was the first to mention Lyme disease. When I arrived at his office, my symptoms had skyrocketed. I had electric shocks in my arms and legs, a burning sensation under the skin, blurry vision, bloated stomach, temporary partial face paralysis, difficulty walking, palpitations, dental pain, sore ribs, tingling, neck cracks and stiffness, lightheadedness, numbness, burning sensation, brain fog and pelvic pain.
She asked me to do some blood work (Elisa and Western Blot included) and a head MRI, which showed a lot of white lesions on my brain. A month later, I received the results of my blood tests by email. I forwarded it to the internist doctor and within half a day she replied I needed to find a Lyme disease specialist within my country and repeat the tests. She was the first doctor who put together all the pieces of the puzzle and had a global view at all my symptoms.
That day I was thrilled to find out that my mysterious illness was finally discovered. Fighting an invisible illness was nerve wrecking, time and energy consuming. I was hoping that from that moment on, it will be easier for me to get cured. Little I knew about the challenges laid ahead by the Great Pretender.
SECOND LYME DIAGNOSIS
Once I had all my medical papers translated into English, I started looking for a Lyme specialist.
Since I was not able to locate one within the province of Quebec, I had to extend my search country wide. The only Lyme specialist I found was in British Columbia, but he was not taking new patients. That made me turned towards the US specialists I had read online and enlist on the waiting lists for two Lyme literate doctors.
Mid June 2011, I was diagnosed with Chronic Lyme disease, stage 3 and co-infections: Babesia, Bartonella and Ehrlichia. I had it all.
It was a moment of mixed feelings. I was happy that the cause of my misery was finally revealed and confirmed. I was not crazy like the neurologist suggested. In the same time I was scared because I had no idea how or if I would ever be able to get back on my feet again.
TREATMENT FOR LYME (ABX + HOMEOPATHIC)
When I started the antibiotic treatment, I hoped that I will fully recover within less than a year. Back then I just turned thirty years old and the whole idea of being chronically ill was not what I expected from my life. I never imagined that I could ever lose my independence and mobility. I was on a strict diet (sugar free/ gluten free/ yeast free) and antibiotics for three years and a great deal of my symptoms improved.
PREGNANCY AND BIRTH
When I got pregnant my Lyme doctor decreased the dose of antibiotics I was taking in order not to harm the baby. Throughout the whole pregnancy I benefited from the help and support of an entire team of doctors in Lasalle hospital who monitored me weekly, following the lead of my specialist. I am forever grateful for their attention and support.
What keeps me going? A positive mind and the idea that my toddler needs me. I have no time to think that I am sick. I deal with what I have and I do what I can do. I chose to focus on the positive instead of the negative.
AM I CURED?
No. But I learnt how to live with Lyme and embrace my limits, rather than fighting all the time.
I save my strength for the things that really deserve my attention, like family and good friends and healing therapies such as poetry, painting, drawing and travel.
LYME, A BLESSING IN DISGUISE.
Although my Lyme journey felt like a carousel ride, it also enabled me to find my real self. I adopted a minimalistic lifestyle, focused on the positive things I had left in my life, such as family, close friends and passions.
I became a freelance ghost writer after having Lyme, when I was left with no options. I had been writing all my life, but I never considered it could actually turn into a career. I imagined everyone was able to do the same thing.
During my darkest hours of sickness and pain I found inspiration and wrote poetry and children’s stories. Two poetry collections (Whiteless Thoughts and Burden of Love) came out from my struggle with Lyme.
Same goes for painting. What started as a healing therapy, developed into a great hobby that has the ability to keep my mind focused on the process, instead of my pain.
I created A-ZLYME.com in the hope to spread awareness about Lyme disease. When I got sick, there was not much information available online regarding Lyme. It was mostly posted on health forums.