LYME DIAGNOSIS STORY
I am including our family story here to encourage anyone who has been diagnosed with ME/CFS or fibromyalgia to consider the possibility of Lyme disease.
I was “diagnosed” 30 years ago, in my mid 30’s, with ME/CFS and fibromyalgia. My son, at the age of 17 very suddenly became quite ill and was diagnosed at first with Mononucleosis. After about 2 years of steady decline he was diagnosed with CFS/ME, by one of Canada’s pre-eminent CFS doctors. My daughter, also at the age of 17, likewise became suddenly very ill and received the same diagnosis. No medical person ever suggested Lyme disease to us at any point. None of us ever had the classic “bulls-eye” rash.
On our own initiative we were tested in a Canadian lab for Lyme disease but it came back negative so we kept on searching, not knowing at that time how unreliable Canadian Lyme testing was and still is. After 6 years of devastating illness for my son, and 4 years for my daughter, we all tested positive for Lyme in a US lab. By this point my daughter was completely house-bound and my son was bed-ridden, both with serious gastro-intestinal and neurological symptoms.
We found a private MD who would treat us and with his expertise and that of others in our medical team, all at our own expense, we started to make progress.
We have had the wonderful care of our private physician here in Canada, but have also travelled to a clinic in the US repeatedly for additional care. We have included many different healing modalities in our journey, each with different degrees of effectiveness.
We all three have steadily improved. At the time of writing, my daughter has reclaimed her life. She is in Medical School now and back to playing ice hockey. I have also improved tremendously. My son is still struggling. He has been sick for 11 years now and still is unable to live independently. He has gained a huge amount of ground, but still has a way to go.
I strongly urge anyone with an ME/CFS and fibromyalgia diagnosis to look into the possibility that their symptoms might be due to Lyme disease.