I am sharing this story because I hope it will help someone else in a similar situation. I realize what you are about to read may seem hard to comprehend, but please realize that living with chronic fatigue is incredibly frustrating, exhausting, and sometimes downright miserable—there are no answers or accepted treatments. Suicide rates are nearly seven times higher than in the general population since many people are left with little hope and can no longer handle the suffering. Hopefully my story will inspire someone else to keep fighting.
5 doctors, 8 months of testing, and finally something to show. (And I am not crazy!)
In January 2013, I officially crashed―the walls just came tumbling down as my physical well-being deteriorated. Inevitably, I had to withdraw from graduate school, quit my job, and move home with my parents. I couldn’t move and was bedridden for a number of days. My mom actually left my room crying on a number of occasions because I was in such bad shape.
After five different doctors and eight months of testing, I was officially diagnosed with mycoplasma pneumonia by an M.D., Ph.D. in September 2013. Mycoplasma pneumonia is a potential culprit in chronic fatigue. It was estimated that after two to three months of intensive antibiotic therapy, I would fully recover. Long story short, that didn’t happen. For nearly one and a half years, I was cycled on endless antibiotics (prescription, herbal, and inhalation) in an effort to get me well.
Side effects from antibiotic treatment became rather unbearable.
Once I started treatment, I had the same exhaustion problem but it was compounded with additional side effects. The doctor said this was all part of a “die off” response (or Herxheimer reaction)―as the infection is decimated, your body feels the effects, essentially getting sicker. He did warn me of this before commencement of treatment, but I had no idea what I was in for! There were hours of the day (many days, all day) that I literally thought I was going to die—kidney pain, burning joints, migraines, nausea, chilling, hypotension (down to as low as 70/40), and more. It was like a permanent flu that would never leave. And this went on for nearly four years. To move one step forward, I had to take 10 steps back and crawl my way out. I had to learn to occupy my mind in an effort to distract myself from the unrelenting pain.
After a year and a half of treatment, I am deemed a “mystery patient.”
After one and a half years of treatment to clear mycoplasma pneumonia, I was finally deemed a “mystery patient.” Although I was doing better, I was by no means well. As such, I was referred out for unconventional testing, which indicated I was harboring a number of infections (in addition to mycoplasma pneumonia): Epstein-Barr virus, human herpesvirus 6, Lyme disease, babesia, and more. And because of…