“You’re too sick to have chronic Lyme.”
“Once you have Lyme, you can’t get it again.”
“You didn’t get the bull’s-eye, so you’re all set.”
“You’ve been treated, so any residual symptoms will fade in time.”
“You’ve been listening to that quack group too much. You need to stay away from them.”
These are just a few things that people have been told recently by medical providers here in Maine. As an advocate who’s been sharing updated research with medical providers, hosting events, and sharing educational information with the public for over four years, it’s frustrating to hear the things that their primary care doctors are telling them.
When evidence-based science is staring them in the face and still they choose to repeat old, outdated rhetoric, patients know it’s time to step up and advocate for themselves in order to get the best care possible.
When I wrote the column titled “Who you see matters,” I wrote it in order to protect people from being exposed to outdated guidelines and antiquated protocols that are contributing to the growing number of cases of chronic tick-borne disease, when appropriate testing and adequate treatment would have saved weeks, months, and years of a painfilled journey, riddled with financial, physical, and emotional devastation.
“You’re too sick to have chronic Lyme”: Any disease not diagnosed and treated early has the possibility of becoming chronic, and Lyme and tick-borne disease is no different. Applying outdated acute protocols to a chronic illness is bound to fail and Lyme-literate providers not only understand this, but they have options to treat chronic symptoms and multisystemic infections that have gotten out of control.
“Once you have Lyme, you can’t get it again”: Yes, you can contract Lyme and other tick-borne diseases over and over again with every new tick bite. Over 50 percent of ticks in Maine are known to carry a tick-borne disease, so risk to infection is high if one is exposed to a tick bite. There is no building up an immunity to tick bites and the pathogens that they carry. Using prevention products on your skin, clothing, pets, homes, and yards are your best and only defense against tick encounters.
“You didn’t get the bulls-eye so you’re all set”: Only one strain of Borrelia burgdorferi, aka Lyme disease, produces the classic bull’s-eye in less than 50 percent of all positive test results. Why? Some people do not have an immune response to produce the rash. Maybe the tick that bit you gave you a different tick-borne disease, such as anaplasmosis or babesiosis. Not having a bull’s-eye rash does not mean you are in the clear. Be vigilant for the onset of symptoms.
“You’ve been treated, so any residual symptoms will fade in time”: When people tell me that they’ve been treated, my automatic response is “How long?” to which I get many different answers. In an endemic region, 21-28 days is the minimum dosage length. But those are also acute protocols and assuming that there are no co-infections going on. When someone has been sick and untreated for a prolonged period of time and co-infections were never diagnosed, treatment becomes personalized and the length varies by patient. Repair goes hand in hand with treatment. Rebuilding and repairing post-treatment is a vital part of your journey. Seeing a provider who understands tick-borne disease is your best chance of making a full and complete recovery.
“You’ve been listening to that quack group too much. You need to stay away from them”: Weekly, I have someone telling me that their provider has warned them to stay away from my organization. Yes, I am aware of what is being said, and no, I have no intention of making a big deal of it. If their medical provider doesn’t understand the complexities of tick-borne disease, someone has to be available to point patients in the right direction, and help them get connection to resources and providers who can diagnose and treat accordingly, if needed. That’s right — not all who reach out to us have tick-borne disease, and the Lyme-literate providers tell them that. But for the ones who have Lyme and co-infections, these providers are their only options for a chance at regaining health and wellness. They are not being told it’s all in their heads or that they have to accept that they are growing old. They are treated with respect and dignity every step of the way, as every patient should.
I had no idea how controversial Lyme and tick-borne disease was when I first got sick, and I learned on my journey that who you see for diagnosis and treatment will determine your outcome. Do I think that the 23 doctors who misdiagnosed me did it intentionally? No, but I do not understand how they can continue to go to outdated information when new information exists, when new diseases and tick species are discovered, and when the tests being used have been found to be so unreliable. Almost 10 years after my story began, patients are still being dismissed, misdiagnosed, and mistreated, and horrible things are being written in their medical charts.
At last week’s HHS Tick-borne Disease Working Group, the CDC openly stated that the information on their website was to be used as surveillance criteria only, not for clinical diagnostics. They further stated that it was never intended to be used for clinical diagnosis and yet it has been, for years, the crutch that has limited a patient’s access to care and support.
I will continue to spread hope to patients that they can get better, and connect them to medical providers and much-needed financial resources.
Stay tuned for changes that are coming!
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at firstname.lastname@example.org or go to mldse.org for more information.)