All too often as I sit to write my column, it takes on a life of its own. I am fed all my material to write about from personal experiences and interactions with patients and medical providers. One such recent experience was my eight days at the Union Fair. We were honored to be asked back for our fifth year of providing awareness and prevention education and information on Lyme and tick-borne disease. I met a lot of Mainers as well as tourists who read my column each week and who took a minute to thank me for my ongoing education and awareness to a very real and growing problem. More support came from the Maine CDC, who shared on their Facebook page that we would be at the fair.
So, where does my fuel come from? What keeps this advocate plugging away at a problem that sees no end in sight? Perhaps its listening to patients in 2019 lament about experiences with their own medical providers, similar to mine from 2009. I got asked all week long, “Have we not made any head way?” to which my response was, “Absolutely, its small but a steady acknowledgement in the first heat of what will be a long, extensive marathon.”
We have acknowledgement at a federal level that current Lyme Disease testing is, at best, 25-40% reliable. It is less accurate in acute cases because providers test too soon, and patients may not have produced antibodies. Also, more physician education is needed to determine just what test is warranted. In an April 1, 2018, National Institute of Health article “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand” it was concluded that “for the past 2 decades, the concept of a 2-tiered strategy aimed at high sensitivity and specificity has been widely used, but the current approach is insensitive during the first weeks of Lyme disease, and Western blotting can be complex to perform and interpret.” Read the full article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6019075/
Now, I am not a medical provider but even I can understand what that means.
Then, in a July 25, 2018 National Institute of Health article “Tick-borne Diseases Are Likely To Increase,” there were several points mentioned that caught my eye:
The incidence of tick-borne infections in the United States has risen significantly within the past decade.
- It is imperative, therefore, that public health officials and scientists build a robust understanding of pathogenesis, design improved diagnostics, and develop preventive vaccines.
- Tickborne virus infections are also increasing and could cause serious illness and death.
- The public health burden of tickborne disease is considerably underreported, according to the authors. According to the authors, this is due in part to the limitations of current tickborne disease surveillance, as well as current diagnostics, which may be imprecise in some cases and are unable to recognize new tickborne pathogens as they emerge.
It was suggested:
- By focusing research on the epidemiology of tickborne diseases, improving diagnostics, finding new treatments and developing preventive vaccines, public health officials and researchers may be able to stem the growing threat these diseases pose. Read the article in full here: https://bit.ly/329iFxP
So faulty tests are identified, and more physician education is needed. Does any of this sound familiar to you? It’s the platform on which I have been perched upon for the last ten years, singing from it for the last five. The definition of watchtower is an elevated observation point. My watchtower has been my personal experience as well as that of thousands of patients who have reached out. The mere fact that patients are still experiencing medical pushback in the form of misdiagnosis and under treatment is not okay in my book. Just last Saturday, at the fair, after spending some time sharing and listening and providing resources to a small crowd around my booth, a man approached me. I knew of him as he is a medical provider here in Maine. He looked me straight in the eyes, said my full name and the name of my organization and asked me in a loaded tone “when are YOU going to stop getting people all worked up over chronic Lyme?” and without blinking, I looked him straight in the eyes and said “When YOU medical providers start doing a better job of diagnosing and treating tick-borne disease.” He had no come back only to huff and walk away. I had more that I wanted to discuss with him but clearly, he wasn’t armed for that discussion.
When patients continue to suffer at the hands of medical providers who choose to use faulty testing, who continue to misdiagnose, who have a pattern of under treating or worse, mistreating, even when the governing bodies over them have made it clear things need to change, someone needs to continue to remind patients that there is hope, guide them to resources, and keep poking the medical providers to do better.
I met with a woman from the University of Southern Maine School of Nursing who reached out to me, wanting to incorporate a tick-borne disease curriculum into her classes. I got her connected to such a resource and now Portland, Gorham, Lewiston and online classes will benefit from that resource. She shared with me that her adult son, although better now, went through his own nightmare of misdiagnosis and mistreatment and when I asked her why she has stayed in this fight, she said it was because of all the patients she meets who are still fighting for their own lives.
As patients, we are sandwiched in between the old and the new, the good and the bad, and at times, its very difficult to see the light at the end of the tunnel, let alone keep your head above waters. We don’t know where to go or who to listen to. Please know that help is available, and change is coming. If you or someone you know is suffering, please reach out. We can help.
Paula is the president of the MLDSE, the 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