Last week, WBUR, the local NPR station, ran a week-long look at Lyme disease and chronic Lyme disease. The controversy over chronic Lyme disease (and specifically, how social media and the Internet have influenced patient advocacy and Lyme literacy) is something I explore in a later section of my forthcoming book, so I was interested in seeing mainstream media offer a sustained look at the issue. I know several people who have suffered from Lyme disease and chronic Lyme, including Jennifer Crystal, a writer and grad student at my graduate school alma mater, Emerson College. I spoke with Jennifer at length when I interviewed her for my book, and I checked in with her in the wake of this recent media coverage.
Even if you haven’t been touched by Lyme personally, Jennifer’s diagnostic journey and her thoughts on ignorance and fear will resonate with anyone who has struggled to receive a correct diagnosis.
1. I know your journey to diagnosis was long and complicated. While I
share the longer version in my book, can you give readers a brief synopsis
of your story? Would you agree it shares similarities with Barbara McLeod’s
Lyme story, which WBUR reported on last week, and which received a lot of interest and feedback?
My story is very similar to Barbara’s, in that we both got sick when
we were young, otherwise energetic and eager professionals, and we
both struggled for too long to maintain that identity while mysterious
symptoms ate away at our lives. Like Barbara, my tick-borne illnesses
went undiagnosed for a long time, and I was repeatedly turned away by
doctors who thought I was stressed, run down or depressed.
I was bitten by a tick in 1997 while working at a summer camp in
Maine, but my waxing and waning flu-like symptoms did not get properly
diagnosed until 2005. By that time the Lyme bacteria, as well as the
co-infections ehrlichia and babesia, had spread to every system of my
body and crossed the blood-brain barrier. I wrestled with severe
physical and neurological symptoms that left me bedridden and unable
to work or care for myself. It took many years of treatment, including
intravenous antibiotics and strong anti-malarial medication, to get me
back on my feet. I am much, much better than I was several years ago,
but I still live with limitations today and still take medication to
help maintain a certain level of health.
2. Much of the current debate centers on chronic Lyme. Again, I know
this is a complicated situation, but can you briefly discuss why you think
there is such resistance to the existence of chronic Lyme from some factions
of the medical establishment?
I think the resistance comes down to two factors: ignorance and fear.
The Infectious Disease Society of America mandates that all cases of
Lyme disease can be treated with 28 days of antibiotics. This is true
for cases that are found and diagnosed right away. However, all too
often, Lyme disease goes undiagnosed and untreated, mistaken for other
conditions like chronic fatigue syndrome, MS, arthritis or lupus. Some
doctors only know to look for a bull’s eye rash, which manifests in
less than 50% of cases of Lyme disease. To make matters worse, Lyme
disease testing is not reliable and not always accurate, so there are
a lot of false negative tests. For these reasons, the Lyme bacteria
can be left to replicate for months or even years, wreaking havoc on
the whole body. Any infection that becomes that severe and systemic
cannot be treated effectively with a short-term course of antibiotics.
Some doctors who may be Lyme literate–ie, who understand the
complexities of the disease and its diagnosis described above–are
fearful of prescribing long-term antibiotics because it goes against
the IDSA rules. They are afraid they might lose their licenses. In CT,
Senator Blumenthal passed a bill that allows Lyme doctors to treat at
their discretion. This was a huge victory for patients who could not
get the treatment they needed; I hope this kind of legislation can be
passed in other states, too (or, even better, that the IDSA guidelines
will be changed).
Most of the arguments I’ve heard against chronic Lyme disease make the
erroneous assumption that cases that have become chronic were caught
right away and treated with a standard course of antibiotics. Herein
lies the problem. Cases become chronic because they go undiagnosed for
too long. Therefore, I think doctors should stop arguing over whether
chronic Lyme exists, and come together to figure out how to better
diagnose Lyme disease at its onset, so that chronic suffering becomes
3. I’ve seen more news stories about Lyme’s co-infections lately, and I
know you’ve written about those recently, too. What are some the biggest misconceptions about Lyme disease and co-infections you’d like to dispel?
I am so glad to see that Lyme disease awareness is spreading, and am
grateful to WBUR for their week-long coverage of the disease. I’m
especially grateful that they also included co-infections in their
discussions, because we can only win the battle against tick-borne
illnesses if we spread awareness about all of them. Co-infections such
as babesia, erhlichia and bartonella (the first being parasitic, the
second two bacterial) can be transmitted from the same tick that
transmits Lyme disease. They can complicate treatment, and require
different medications than standard Lyme disease. Some patients with
Lyme don’t get better because they are not being treated for the whole
picture. I think it’s imperative that doctors who suspect Lyme in a
patient also test for co-infections. A true Lyme-literate physician
will also be literate in the diagnosis and treatment of co-infections.
I think sometimes these infections are overlooked because they’re
obscure (difficult to pronounce!) and people don’t know much about
them, but that’s a grave mistake.
4. It’s summer, and here in New England the deer tick population is
intense. What are some practical, everyday tips for tick prevention?
The most important thing to do is to make tick checks part of our
daily routine, not just for ourselves, but for our animals, too.
Taking a shower immediately upon coming in from outside is helpful, as
is throwing clothes in the dryer for 20 minutes (ticks can’t survive
the high heat). When hiking or camping, it’s important to wear long
sleeves and light-colored clothing (to make ticks easier to see).
Using bug spray with DEET is helpful, but permethrin is even better.
This synthetic tick-repellent can be sprayed on shoes and clothing.
Stores like REI and LLBean even sell clothes that have already been
treated with permethrin (the insecticide stays active through 6
Thanks so much, Jennifer. I’m looking forward to sharing more of your story when the book comes out, and to seeing more of your published writing on chronic Lyme and Lyme’s co-infections. Keep up the good work!
If you have experiences with Lyme disease/misdiagnosis or tips to share alongside Jennifer’s, please do!