“My Lyme Disease Diagnosis Journey”
I now know where my Borellia and co-infections illness began, an insect bite while abroad. The delayed onset of multiple symptoms coupled with an incomplete medical history, meant my GP and I didn’t suspect bacterial infection. We didn’t treat acutely so the bugs spread everywhere within my body. My long list of problems had to be prioritised and Despair was the most urgent.
The following multiple doctors and ‘ology consultants could find no obvious problem so they treated for poor mental health, pain relief, generic diet and exercise advice. I couldn’t comply without significant injury payback afterwards (crashing fatigue and pain). I lost the next 15 years+, alive but “not living”.
Serendipitously, through Dr. Google, I found a lyme patient community online (Tick Talk Ireland), who encouraged and supported each other (especially Ann M. who pointed me in the right direction for more information).
Although my GP Irish lyme blood test was negative, I pursued ARMIN broad spectrum multispecies blood analysis at an Irish Lyme disease conference. Now with alternative positive Lyme infection results, I got some hope and could imagine a way to help myself. Private Infectious disease consultant paperwork followed and this facilitated my GP to treat with longer term medications including antibiotics. Thankfully now (5 years post treatment) I am very much improved and functioning again.
I am a little disappointed not to be fully cured. I now ‘pace’ myself and try to live within my daily energy ‘budget’. This is best described as ME/CFS, ongoing Chronic Fatigue Syndrome.
I am now a stronger person who has found some ‘meaning of my life’. This is to know thyself, take responsibility and live with purpose. I no longer try to convert/educate doctors etc who are not ready to change. I know my experience of self-advocacy and self-care was my salvation. The lesson: Trust your instinct if you’re unwell. Advocate for yourself. Keep seeking answers. Help those coming behind. If the doctors test doesn’t find the problem that maybe you need to find a better test.
The meaning of life: To overcome life’s challenges and through adversity, blossom into the best version of yourself now armed with more wisdom.
Best wishes,
John Monahan (Kilkenny)
September 2023