All those years I spent in the woods as a young person — exploring, camping, lying in the underbrush — I never imagined a tiny, unnoticed tick would so drastically alter the course of my life.
When I was finally diagnosed in 2014, I couldn’t believe it at first: How could I have spent several decades dealing with a host of medical conditions without any of the doctors I consulted bringing up the possibility of Lyme disease? Unfortunately this happens way more than most people realize — especially for those who live in areas where Lyme, so far, rarely occurs.
Even though those 2014 blood tests confirmed I’d contracted an East Coast version of Lyme, most likely in the 1970s, I don’t have the most common symptoms, so it took seeing the positive results of several tests till I fully believed I had it.
Epidemic, but too many never diagnosed
Dr. Richard Horowitz, author of Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, reports that among infectious diseases, Lyme is now the “number one spreading epidemic worldwide.” The CDC (Centers for Disease Control) estimates that in the U.S. alone, there are more than 300,000 new cases diagnosed per year.
Dr. Horowitz laments that many who suffer from Lyme may never be accurately diagnosed. This means thousands of Americans who struggle with health conditions could reach their last days without ever knowing that Lyme caused most of their symptoms and, in many cases, completely derailed their lives. In terms of the Hopi river metaphor, I see these patients being yanked away from the shore and forced into chaotic rapids, but without a support system that includes doctors, family and friends who understand what’s going on.
Why it’s so hard to diagnose
The black-legged tick, (or “deer tick”), the main carrier of Lyme, can be as small as the dot over this i. And about 50% of those bitten never see a telltale bulls-eye rash. We may develop flu-like symptoms for a week or two while never attributing them to a tick bite. After those initial symptoms subside, the Lyme bacteria, Borrelia burgdorferi, along with its several co-infections, spread into various parts of the body until chronic symptoms develop – sometimes not until years later.
The symptoms of chronic Lyme vary widely from person to person, imitating about 300 medical conditions. So, doctors may focus on a patient’s symptoms of rheumatoid arthritis, cognitive difficulties, chronic fatigue syndrome, multiple sclerosis, Parkinson’s, ALS, bladder conditions such as interstitial cystitis, gastrointestinal conditions such as food sensitivities and hypoglycemia, or other diseases and symptoms, without realizing the underlying cause could be Lyme.
Treatment can be tricky
These days we have more information about how to address chronic Lyme disease — Borrelia burgdorferi as well as its co-infections, which get transmitted during the same tick bite. Many of those affected are eventually able to live normal lives — if they have the financial resources to cover extensive medical care. For most patients it’s a rough-and-tumble ride with many treatments, so I’m doing my best to make thoughtful choices and be as frugal as I can with the resources available to me.
Even though I’m willing to take it as “slow and steady” as I can (as advised), and accept that I may not see significant improvement until sometime in 2016 or later, I’m aiming for as full a recovery as is possible.
Regina Weinhert of NYC writes the blog Lyme Nation where she posted photos in 2014, including the one below, of picketers outside the New York Times. The sign in the back reads: “Lyme Disease: Easy to get, hard to cure.” NEEDED: More education and news coverage about prevention, treatment and the controversial issues behind the lack of decent insurance coverage.
Picketing outside New York Times. Photo Credit: Lyme Nation
Thanks for practitioners, friends, family
I’m grateful for my team of supportive practitioners here in Fort Collins; for my Lyme specialist in Washington D.C. (and our regular phone consults); for the various other specialists from whom I’ve learned so much; for the camaraderie with fellow patients; and for my supportive neighbors, friends and family. A special word of love and appreciation for my husband, Dan.
Links to more info:
1) Today Show 5 minute interview with Dr. Richard Horowitz: http://www.today.com/popculture/chronic-lyme-disease-what-you-need-know-1D79878631
2) Documentary on chronic Lyme — “Under Our Skin” (Informative re: insurance issues, etc.): http://topdocumentaryfilms.com/under-our-skin/
3) Excellent organization of “Lyme-Literate” doctors, ILADS (International Lyme and Associated Diseases Society): http://www.ilads.org
4) Recommended books: Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz; The Beginners Guide to Lyme Disease, by Dr. Nicola McFadzean; Insights into Lyme Disease Treatment by Connie Strasheim.