‘My friends invited me for a weekend getaway. I got a few itchy bites. ‘Are you pregnant?’ ‘Maybe it’s bacterial?’ This was a disease I had never heard of. There is NO cure for it.’

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“I was 25 years old when I became sick with what everyone was sure was the flu. But it wasn’t, and little did I know then that my journey was just beginning. I was fresh out of graduate school and working full time as a speech-language pathologist. One weekend during the summer, my friends invited me upstate for a weekend getaway. Of course I went and we had a blast. I came home from that weekend with a few itchy ‘mosquito’ bites that were larger than average, but overall I was feeling great. The next day, I happened to have my annual physical scheduled with my doctor. I went in to see the doctor for my regular check-up, feeling healthy, young, and free. Since I was there, I decided to point out the bites I got from the weekend and the doctor dismissed it and said, ‘It’s just an allergy to mosquito bites, it’ll go away in a few days,’ and they did go away in a few days. However, about 4 weeks later, I started to feel flu-like with fevers, weakness, nausea, and dizziness.

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My family and I assumed it was the flu. So I drank plenty of fluids and stayed in bed for a few days. But I wasn’t getting better and the symptoms became even more intense, including, migraines, vomiting, and brain fog. I went back to the doctor who said, ‘I think it’s food poisoning and you’ll get better in a few days.’ A few days later, I was in her office and not a stitch better. This time she said, ‘Maybe it is the flu and sometimes they can last up to 3 weeks.’ About a week later, I went back to the doctor, still sick with no relief. She said, ‘Is it possible you’re pregnant?’ My response was ‘no’ and a pregnancy test verified that. Afterwards, she said, ‘Maybe it’s bacterial? Here’s a script for Antibiotics for 10 days and you will be good as new.’ I was so excited to finally be given something that could help make this go away. After taking the medicine for 10 days, my symptoms lessened in intensity but never quite went away. About a week after completing this antibiotic, the symptoms intensified again, and I felt sicker than ever. I was so scared.

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This time I took myself to the emergency room in hopes that the hospital will run the appropriate tests and finally fix me. They ran tests, plugged me into antibiotics and fluids, but they could not figure out what’s wrong with me. They sent me home with another prescription for antibiotics and were sure I would feel better. Again, the symptoms lessened and then returned with a vengeance a week later. Months passed and my symptoms became progressively worse and increasingly intense. On top of the flu symptoms, I began to have neurological symptoms arise, such a joint pain, muscle weakness, tremors, extreme fatigue, difficulty with gait and balance, and significant memory loss. I hopped from doctor to doctor, specialist to specialist with no answers. I would hear them offer suggestions on what they believed could be going on. ‘Maybe cancer,’ or ‘Maybe Multiple Sclerosis,’ ‘Early Alzheimer’s disease’, ‘Fibromyalgia,’ ‘Chronic fatigue Syndrome,’ ‘Fever of Unknown origin,’ ‘Lupus,’ ‘HIV.’ You name it, I’ve heard it.  Answers became scarcer as doctors just stared, baffled in disbelief and all hope for finally being better seemed to be depleting. This went on for YEARS and THOUSANDS of dollars in medical expenses as they ruled out everything they could think of.

After 3 years of misdiagnosis, I was finally diagnosed with Chronic Lyme Disease. Those larger ‘mosquito’ bites from years earlier ended up not being mosquitos at all. They were tick bites. This was a disease I had never heard of before and now had to live with. In the beginning, I was so relieved to finally have the accurate diagnosis, thinking this would finally lead to treatment and I would be cured. I had no idea about all the controversy around this disease, how difficult and gruesome the treatment process is, and there is NO cure for it. My world seemed to just get darker as I realized that the treacherous journey to getting the diagnosed was the easy part.

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I was grateful to find my Lyme-Literate Doctor who specializes in treating Lyme Disease. The doctor was very experienced with this disease and reassured me I would get better, however, treatment is experimental. It could take years, it will be very difficult, and requires maximum effort. Treatment included a strict nutrition plan (eliminating anything that could cause an inflammatory response), heavy dosing of an array of antibiotics taken simultaneously, and hundreds of supplements to support organ and immune function. Every time a new antibiotic or supplement would be introduced, I would have a Herxheimer reaction (or in layman’s terms, an extreme flare up.) This is common in treatment of all Tick-borne disease and is the only way to target the bacteria causing the symptoms. That means my symptoms would roar full steam ahead, sometimes leaving me almost disabled.

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I felt like my body hated me because everything became so unfathomably difficult and painful, including, standing, using the bathroom, walking, or even breathing. I would have shooting pains in my legs and all the way up my spine to my head that felt as if someone was sawing me open from the inside out. It was around this time I started to become depressed. I felt that no one should have to live life feeling this sick and in pain for years and with no idea when or if there would ever be an end to it. I would cry often and contemplate death because, at the time, it seemed like the only thing that would save me from the suffering. I stayed on the path to treatment and remained on this roller coaster for another 3 years.

At the center of my treatment, I was on extremely high doses of 12 different antibiotics at the same time and taking anywhere from 80-100 pills per day, including supplements and probiotics. If you would look at me from the outside, you would never believe how sick I felt or how many drugs I had to be on daily in order to survive. After about a year and half on experimental treatment, I began opening up toward holistic healing such as reiki, yoga, and meditation, which had aided in my healing journey to connect the mind and the body.

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As treatment progressed over the years, the symptoms became less intense, less frequent, and flares would make fewer appearances. Today, I am 31 years old and on my way to recovery. I still have the occasional flare up and the disease may always live inside of me, but I will never allow it to take over me again. Every day I am grateful for this body and the war it has battled for me. It has granted me this chance to awaken from the darkness and appreciate life and all of its beauty. I am currently in the process of switching careers to become a health and wellness coach. I am completing my certification in health and wellness coaching, as well as, Yoga and meditation instruction. I want to share all of this knowledge I’ve gained from this journey to help others to shine their light and heal their bodies.”

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This story was submitted to Love What Matters by Irina Kvasha of New York. You can follow her journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

Read another powerful story of a woman living with Lyme Disease:

‘The doctors said, ‘Good luck. There is no cure.’ I didn’t think I was going to make it. My siblings were scared for me.’

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