To me, it seems like I am a broken record playing the same message all day long. But the reality is this — not all medical providers are knowledgeable and experienced enough to diagnosis and properly treat all stages of Lyme and tick-borne diseases — and this deficit greatly impacts patients everywhere! Phone calls, emails, Facebook messages, text message and in-person inquiries. Being contacted by people wondering if they have been exposed to Lyme disease, asking if I can help get them connected to a medical provider who knows more than their PCP on diagnosing and treating, worried about a family member who doesn’t seem to be responding to their treatment protocol, people questioning the treatment they’ve been given.
So, is your provider Lyme literate?
First red flag: not all patients present the same because not all patients have the same infection therefore there is no one-size-fits-all treatment protocol. Different ticks can transmit different tick-borne diseases, which require different testing and different treatment.
The second red flag: when patients do not get better after treatment. I have written many articles about Who You See Matters because your treatment and recovery is determined by the stage of the infection(s) being treated. The longer you have been sick, the longer your treatment could be because the infection roots itself into your tissues and organs and causes additional infections.
The third red flag: when new science refutes old science and the status quo still does not change. If we think about cancer, diabetes, even mental health patients have seen improvements over the years with diagnosing and treatment options being offered. But with Lyme and other tick-borne diseases, researchers are at odds with one another thus influencing insurance companies and mainstream medical providers (hence IDSA vs ILADS which I will cover in my column next week).
There is a saying “A lie is a lie even if everyone believes it and the truth is still the truth even if no one believes it.” As you read this article, a government inquiry has begun, delving into the controversial past, to determine the root cause of Lyme and tick-borne disease. Was it a purposeful lab experiment gone wrong or something far darker than our minds can even comprehend like generating a bioweapon?
We look to those in trusted positions to help us, to make things better, to answer our endless questions. But who you see really does matter because you are getting their impression married with their personal hands on experience. The Lyme community has dealt with this reality for decades, just wanting confirmation of their illness, no matter the stage, and to know that there is hope for them to fully recover and get back to their lives and dreams.
I have fully recovered from my nightmare of being misdiagnosed by 23 doctors and specialists and I now serve Maine’s Lyme community at both a state and federal level, connecting patients to much need resources and walking them through on their journey to health and wellness. If you or someone you know is in need of assistance, please contact us email@example.com or visit our website www.mldse.org for more information and available resources.