The first thing I did when I was diagnosed with Lyme two and a half years ago was look for community on social media. I’d been misdiagnosed, homebound, and isolated for six years at that point and just needed to find people I related to. I found that community, and then some.
And…horrors. So. Many. Horrors.
Pain, suffering, hopelessness, and even death.
It was a shock to the system. Ever since that first foray into Lyme social media, I’ve wanted—needed—to do as much as I could for the community, arguably the most disenfranchised and marginalized of any disease.
As I’m sure many of you reading this know, Lyme is a misunderstood, controversial, stigmatized, and underfunded chronic illness. The CDC and The Infectious Diseases Society of America (IDSA) refuse to acknowledge that Lyme can persist against antibiotics and become a chronic infection, despite over seven hundred peer-reviewed studies that suggest Lyme and other tick-borne infections can persist. Lyme is plagued by inadequate tests and treatment, and a lack of affordable long term treatment, worsened by the fact many patients are unable to work.
It’s a human rights issue that tears lives and families asunder.
I’ve met so many helpless Lyme patients who have essentially been left for dead. Patients who are disabled, severely incapacitated, suicidal, and even approaching organ failure, who can’t afford treatment, or their family, friends, and communities can’t or won’t help them.
Lyme patients already have enough to deal with and enough working against them, they shouldn’t have to defend their illness to people. And yet, many patient’s doctors, family members, and friends either don’t believe anything is wrong with them, or don’t believe Lyme can be chronic.
It’s not just doctors and people in our lives who don’t believe Lyme can be chronic either. Every year multiple articles are written by journalists who trivialize Lyme and even attack patients and their doctors. And when a celebrity comes out about having Lyme disease, so do the pitchforks.
All of these people somehow think they know more about Lyme disease than Lyme literate practitioners and accomplished researchers from prestigious institutions, because they read the CDC’s website and called it a day. As if it were that simple.
To me, one of the biggest problems is that the vast majority of those who doubt Lyme can be chronic, doctors included, do not know that there is a literal mountain of legitimate, peer- reviewed studies out there supporting it.
I’ve fought more than my share of internet battles, I’ve sent articles and studies to other Lyme patients to help convince doubters, I’ve written to the WNBA on behalf of Elena Delle Donne and the Department of Health and Human Services’ Tick-Borne Disease Working Group, and I’ve tried to write articles that are essentially research papers to spell it out for people. But when you’re incapacitated 90% of most days, it’s hard to find the energy to argue with people or finish writing things, not to mention it’s easy to burn out.
And then an idea came to me.
To me, one of the biggest problems is that the vast majority of those who doubt Lyme can be chronic, doctors included, do not know that there is a literal mountain of legitimate, peer- reviewed studies out there supporting it. Studies by accomplished doctors and microbiologists from institutions like Johns Hopkins that are readily available on PubMed. Studies that suggest Lyme and other tick-borne infections can persist against antibiotics and become chronic, and show the CDC and IDSA’s current treatment guidelines are woefully inept.
Most doctors and other people either don’t have the time to do research, won’t do research, or don’t really know where to look other than the CDC’s website wrought with misinformation. So I thought what if we bring the science to them? What if we give patients a tool to defend their illness themselves and educate people?
What if we bring the science to them? What if we give patients a tool to defend their illness themselves and educate people?
And so I teamed up with the wonderful people at Project Lyme to create the Lyme Persists page, a central hub for some of the most damning peer-reviewed science that shows Lyme can persist against antibiotics and become chronic. Written in an easily digestible, easily shareable format, with dedicated pages for each study for those who want to learn more. To spread awareness, and help patients educate those in their lives who don’t quite understand Lyme, from friends and family to doctors and even elected officials.
I know there are people out there who just straight up won’t read this site we’ve created, even when directed to it, and I have no idea if a doctor will be swayed by it. But we have to try.
Lyme persists, and so must we.
In case you missed our posts the last couple months, here are the takeaways from each one, with a link to a page containing more info and shareable graphics:
- Symptoms can linger despite antibiotic treatment. There is currently no study that shows Borrelia burgdorferi, the causative agent of Lyme disease, can be fully eradicated from the body.
- Over 700 peer-reviewed studies (including 60+ from the 1980’s) suggest Lyme and other tick-borne infections persist against antibiotics. Persistence is well documented in other diseases.
- Lyme has been found to form antibiotic resistant micro-colonies, called biofilms. They form in response to unfavorable conditions, including antibiotic treatment, but also as the infection disseminates.
- In an autopsy, clusters of Lyme spirochetes and biofilms were found in the major organs of a patient who had been treated multiple times with antibiotics over 16 years. This patient would not be able to receive adequate treatment under the CDC’s current guidelines.
- In response to unfavorable conditions, including antibiotic exposure, but also as the infection disseminates, cells of B. burgdorferi have been shown to change from spirochetes to round bodies that are more resistant to antibiotics. When conditions are more favorable, these round bodies revert to spirochetes.
- A series of studies from Johns Hopkins showed CDC recommended antibiotics do not fare well against antibiotic resistant cells of B. burgdorferi and are outperformed by a significant number of antimicrobials, and that the optimal treatment for acute and persistent/chronic Lyme Disease has yet to be determined.
- A combination of therapies addressing all forms of B. burgdorferi is needed to ensure the best treatment outcome
- In a 2018 study of 12 Lyme patients with persistent symptoms, who had been treated with antibiotics in the past, B. burgdorferi spirochetes were cultured from all patients, and biofilms and round bodies from some.
- Despite infection with the same strain, affected tissues can vary among hosts. Due to waning antibody levels over time, antibody tests may yield false negatives in persistent (resistant to treatment) and chronic infections.
- A protocol targeting antibiotic resistant cells of B. burgdorferi improved symptoms in 98% of patients experiencing symptoms for at least a year despite antibiotic treatment, with 45% achieving remission for a year or longer. The 55% who did not reach remission had active co-infections, suggesting better treatment is needed for persistent co-infections.