This is the second episode in my miniseries on Lyme disease, lending my story to the efforts of Lyme Awareness month. Advocates, patients, family members and Lyme Literate Doctors are uniting across the country to plan walkathons, sponsor 5K’s, and put up billboards with GIANT SCARY TICKS. Some towns are hosting bar-a-thons and even (hair) cut-athons to broaden awareness of what is now being labeled an epidemic. Because THE INCIDENCE OF LYME HAS SURGED BY 320% IN RECENT YEARS. This is my attempt to explain Lyme Disease for the average (medically untrained) person, or in the very least, break it down so that my own Lyme addled brain can process how a tiny nymph of a bug caused a cascade of issues that finally resulted in my Lyme diagnosis. If you missed last week’s post and want the context of my “backstory,” or if you just really like to read about blood sucking villains, please start with the “first episode” in this miniseries.
Prior to this year, the most I knew about Lyme was that it is caused by ticks, and is a very bad thing. If you have been thus far unaffected by Lyme disease then you would have no need to understand how stealthy, dangerous, and illusive ticks can be. A common misperception about Lyme has been that that is ONE disease caused only by the bite of a DEER tick. As the proud mama to black and yellow labs, I was well versed in the need for monthly applications of frontline, and was even adept at removing the rogue ticks who got through the frontline firewall. But, again – those were dog ticks, and before I was diagnosed with Lyme, we discounted them because our doctors (at the time) assured us that they carried no risk for Lyme, and even laughed at me for bringing the tick to the office, carefully transported in a ziplock baggie like I was carrying radioactive material. (Um, it turns out I WAS.) We also operated under the misperception that we only needed treatment if we developed the infamous BULLSEYE RASH that we knew to be an indicator of a tick bite, and possible Lyme infection.
The Famous “Bullseye Rash” is not so famous. Only 20% of Lyme patients develop the rash and know to seek treatment. But I certainly wasn’t alone in my ignorance. The lack of awareness extended to the medical community – constrained by CDC protocol which used the bulls-eye rash as the the criteria for treatment. And I use that word loosely, because the only approved regimen was a 2-4 week course of antibiotics, with little to no follow-up bloodwork to look for infections that alluded the treatment, hiding under their “invisibility cloaks” (otherwise known as biofilms.)
Fortunately, the body of knowledge about the prevention, testing, and treatmant of Lyme disease seems to be expanding almost daily, thanks to the advocacy efforts of the nationwide awareness campaigns. Many mainstream physicians seem to be acknowledging that they, too, are learning more and more about lyme, which includes educating patients about the various ways Lyme can be spread and acquired. My local family practice is now educating patients to understand that while Lyme is most often transmitted by nymphs (baby ticks), it can also be transmitted through contaminated blood transfusions, during pregnancy, via intercourse (“Oh, GOD Mom, please don’t talk about sex”) and from exposure to feces from animals or people infected with Borrelia. They know that people can acquire Lyme from deer tick, dog ticks, and sometimes from spiders, and mosquitos. This progress gives me hope for the future of all Lyme patients.
But for right now…in good conscience I need to share that I had an off the record conversation with someone from the CDC who warned me that I would not get well if I stayed within the confines of the traditional medical establishment, because they have so to go to be on par with Lyme Literate doctors (LLMD’s)).
Oh – and here’s the best part: I have yet to find a LLMD who takes insurance, which means that we pay out of pocket for ALL of my treatment. Most insurance companies allow a maximum of about 15 minutes per patient. Lyme practitioners spend hours pouring over medical histories, and perform lengthy physical exams in order to even determine which tests to order before they can devise a carefully tailored course of treatment for each patient’s unique set of symptoms. Because ticks can transmit over 300 diseases, to say that each case is unique is a HUGE understatement.
So – if we want to have doctors who specialize in Lyme (and of COURSE we do) we need to either 1) bite the financial bullet AND 2) join the advocacy effort to raise funds for research and to lobby the insurance industry to allow for individualized treatment, and bring the medical establishment up to speed. Follow this link to hop on the advocacy bus. Go on, I’ll wait while you do it.
I see glimmers of hope that this will eventually change. Our own family practice has done a 360 degree shift in the past twelve months regarding the protocol they follow to treat patients with suspected Lyme. They no longer use the bullseye rash as the justification to begin treatment, and they don’t care if it was a dog tick vs. a deer tick. Recently a friend went in WITH a rash, and was told that the only criteria they now use to treat for Lyme is knowing you were bitten by a tick. They are beginning to understand that early treatment prevents chronic disease. We can only hope that the Insurance Industry will follow suit, but I certainly don’t plan to die while waiting.
I will pick this up tomorrow, going a little deeper into the diagnostic process.
So much love,
If you are here because you suspect that you or a family member may have lyme, here are some links that may be helpful: