A pitfall is a hidden danger or unsuspected difficulty. Often, we are blinded by trust or our desire to just feel better and so we are not really seeing how things are, until we look back. I am speaking from firsthand experience as I had no idea that the medical providers that I was trusting with my health had no idea what I was dealing with let alone know how to properly treat it. If I had, I might not have lost all that time, all that money and all those dreams. What compounds this brokenness even further is all the media coverage of tick-borne disease and my five plus years of publicly sharing what I have personally gone through and still seeing all the hurdles that patients are continuing to go through.
Where tick-borne disease is concerned, we have a broken system.
“A search for truth seems to me to be full of pitfalls. We all have different understandings of what truth is, and we'll each believe - or we are in danger of each believing - that our truth is the one and only absolute truth, which is why I say it's full of pitfalls.” — Jocelyn Bell Burnell
Knowledge and experience are all over the map and each providers thinks that they are right to the point of arguing with their patients and other providers. Unreliable diagnostic tools are still being used because most medical providers think that they can use one test. Wrong! Each tick-borne disease has its own test and its own treatment. The ELISA and Western Blot tests are only looking at one strain of Borrelia (Lyme disease) and we have multiple strains here in Maine alone. We also have other tick-borne diseases that initially present a certain way and so married with the idea of a tick bite (or the presence of a tick bite), patient and providers automatically think “it’s Lyme disease!” Did you know that Relapsing Fever is here in Maine and it looks like Lyme and it acts like Lyme, but the test is always negative? So, some providers will treat, and others will not, and all the while, the patient remains sick with a tick-borne infection staring them in the face that no one can give name to.
Everyday, I speak with patients on the phone and by email, asking me if they are on the right track or begging me to connect them with a Lyme provider who won’t argue with them and who will treat their infection properly. It may come as a shock to some readers but not all medical providers are knowledgeable where tick-borne disease is concerned. What is disturbing is how varied the treatment protocols are even amid science that disputes outdated protocols that doctors today continue to follow.
What are you treating? If you don’t know what you have, how can your provider possibly treat it and treat it adequately? Doctors are giving their patients a one-size-all treatment. Wrong! Do you know how many patients have reached out to me over the past five years and told me that they were initially clinically diagnosed with Lyme disease because they had a negative test and that since then, other symptoms have arose and once they were connected to a Lyme literate provider, co-infections were discovered, diagnosed and treated and they got better?
“If they are not looking for it, they won’t see it.” — Dr. Charles Ray Jones, leading pediatric Lyme specialist.
This is what you have but you can’t afford to treat it. Another very common complaint that I hear from patients. Here it is, in a nutshell: Insurance companies get their information on how to treat from various governing entities (I’m not going to lay blame on one single group) and if they medical provider tries to operate outside those boundaries, claims are denied, claims are repeatedly denied to the point where the patient pays out of pocket until they can’t. Then treatment stops or they self medicate in whatever manner they can afford, both of which is unexpectable, because it leads to dire consequences.
This next statement is not going to be well received however it needs to be said. “There is no test that proves that you are better” and any provider that runs a follow-up ELISA or WB test immediately following an antibiotic regime does not fully understand tick-borne disease. The ELISA and WB are antibody tests. Antibiotics suppress your immune system and therefore, antibodies can not be made. So, an antibody blood immediately following a round of antibiotics will almost always produce a negative result even in the presence of an active tick-borne infection.
Early infection, as early as 48 hours post tick bite, require a PCR test (like a DNA test) that will detect the most miniscule cell of infection. Medical Diagnostic Labs (MDL) offers both the PCR test as well as the antibody test that I highly recommended at the 6- to 8-week mark (without antibiotic use). Most Lyme literate providers offer these tests and the good news? MDL accepts all insurances including Mainecare and Medicare. More good news? As a patient, you have the right to determine where your bloodwork goes so when suspecting a tick-borne disease, you want it to go to a lab that has over 20 years experience dealing with tick-borne infection. I still stand with Igenex as the gold star standard for testing but where finances are concerned, MDL is the second best and by accepting all insurances, the most reliable and affordable test.
There is a saying in the Lyme community that “you won’t get it until you get it” and the meaning behind that is, you won’t fully understand how devastating a tick-borne disease can be until you experience it first hand as a patient or caregiver. The many misdiagnoses, the treatments that fail to get you better, the denial letters from your insurance company refusing to pay for treatment that is needed, the arguing with your spouse on how you’re going to afford treatment, the support from friends and family that walks away.
These are the realities that patients with tick-borne diseases face every day. They wake not knowing if they can make it to work, stay at work, will continue to have a job, if their medical provider will refill a prescription and if their insurance will cover it. They wake to find relationships torn, friendships strained, their children ostracized at school and notices of collections in the mail. I know this because I hear it, every day, from patients who do not know how they will go on. But most importantly, they do not want to become a burden to their families. I know first handedly because I was there. I was on the floor. I was giving up. I had no fight left in me.
This is why it has been so important to me to have this platform, to reach those I can not see with nuggets of hope, with stories of inspiration, with messages to hang on, to reach out to me, that I can and will help you get connected to life saving resources because they do exist and because I speak from personal experience, that with the right supports in place, you can overcome this and that life can and will get better.
Paula is the president of the MLDSE, the 2018 co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at firstname.lastname@example.org or visit www.mldse.org