Isolation is nothing new for patients suffering from Lyme and tick-borne disease. With a compromised immune system and severe symptoms during treatment, what many are experiencing with COVID-19 is a familiar experience to the Lyme community ~ even loss.

It’s hard to wrap your mind around the fact that someone could carry the COVID-19 infection and not be symptomatic. It’s scarier to think that those same people could, unknowingly, transmit the infection to those that they come into contact with. It’s even harder to understand how we got it when you don’t become symptomatic until days, weeks even months later.

Welcome to the Lyme community. This is what we live day in and day out. We self-isolate when our symptoms are too severe to leave the house, to perform our day to day duties, to even show up to work. Some days, we try and push through only to pay dearly for it later. Other times, we decline invitations or stay home because we’re afraid to be around crowds of people with our compromised immune systems. We’ve lived in a chronic state of unknown where the medical community has disagreed over the proper ways to treat patients with tick-borne disease. We’ve lived with the knowledge that not all patients survive this disease. We’ve lived with great loss. And now, the rest of the world has gotten an extreme taste of what we’ve lived with for so long. I’ve been immersed in this world for over 10 years and there are days that even I shake my head, unable to fully understand how we can still be in a state of chaos when there are clearly resources available to help.

With COVID-19, we are seeing a global response that we haven’t seen before. We’re seeing federally-funded actions to help people who find themselves in the cross hairs of the coronavirus and that leaves the Lyme community asking “What about us? If we have the resources to step up and help people, to make a difference in their lives, then why isn’t something more being done? Why are we still fighting to access to resources? Why are we still fighting for better testing? We have seen the COVID-19 response and if you think we’re going to sit by and continue to appreciate the crumbs we’ve been given, well, that’s just not gonna happen.

I’m not downplaying what patients with COVID-19, Lyme and/or tick-borne are going through. I talk every day with people, newly diagnosed or struggling to get diagnosed with their symptoms. They live with a sense of fear because beyond the acute phase, the directions for medical providers to follow are unclear. I get calls from medical providers looking to consult with Lyme literate providers for the sake of their patient with “complicated” symptoms that seemingly is not getting better.

Just like with COVID-19, for Lyme patients, it’s a roll of the dice who gets better and who doesn’t. There are medical factors that play into the treatment and recovery phase. Age, gender, medical history, how strong your immune system is. Sound familiar? Yes, we’ve been there and in fact, some of us are still there.

So please, for the sake of flattening the curve and protecting our communities against things that we still do not fully understand, and are writing the instructions as we go along, please stay at home. If you have to go out, practice social distancing. Speaking of social distancing, many are finding themselves out of work and with lots of time on their hands. Many are taking to spending more times outdoors and with that, I am urging you to remember that ticks are still active and seeking their blood meals. While we are consumed with COVID-19 on your minds, let us not forget the other danger that lurks around us ~ ticks and the diseases that they carry. Let us not grow compliant with our prevention practices. Let us not forget to protect our children and pets as they spend increasingly more time outdoors. A great resource for pets is DogNotGone (www.dognotgone.com), a Maine-based company that sells Permethrin-infused apparel for human and pets. No Fly Design and insect-repelling apparel for people and pets now feature the No Fly Zone™Insect Defense System to repel ticks, mosquitos and other biting insects and to offer even greater protection for ourselves and our four-legged friends. Wear your No Fly Zone tick-repelling socks, vest, and gaiters on your next walk or backpacking trip! You don’t have to touch any chemicals to be protected against having a tick encounter and best of all, the effectiveness lasts through 70 washes! DogNotGone is having a spring special: 20% off your order when you use the online code MLDSE20.

[NOTE: This same Maine-based company, located in Skowhegan, is also making protective masks for the front line so if you have a need for masks, I encourage you to reach out to them. Mainers helping Mainers in their time of need, we are proud to partner with Julie and her team and DogNotGone]

Ironically enough, researchers have “discovered” that, Hydroxychloroquine (Plaquenil), an anti-malarial drug that the Lyme community has been using to treat Babesia, a malaria-base tick-borne disease, has a positive response when given to a COVID-19 patient. So that leads me to wonder ~ will the cost of this drug skyrocket now that we have introduced a supply and demand? Or worse, will this drug not be available or harder to access for Lyme patients? Don’t get me wrong, I advocate that all sick patients should have their medical needs to ensure a return to health and wellness. But do we start robbing Peter to pay Paul? How will the outsourcing of this drug on a national level affect the Lyme community?

Here’s to everyone staying safe and healthy, washing your hands and practicing social distancing. At some point, the curve will flatten, and this will become a memory. But ticks and tick-borne disease will still be there, waiting to feast on those who do not wear repellent, treat their clothing or do their tick checks. And when that happens, and it will, MLDSE will be here to help you every step of the way with free resources.

UPDATE: In following recommendations from Gov. Mills and the Maine CDC, we have cancelled our sixth annual MLDSE Conference slated to take place on Sat., April 11 at the Augusta Civic Center. While we are saddened that this event has been cancelled, we are doing so for the sake of public safety. Too many immune-compromised people under one roof is a recipe for disaster. However, we are dedicated to helping the people of Maine get connecting to much need resources so please, if you or someone you know is suffering and in need of help, please visit our website (www.mldse.org) or email us (info@mlde.org). We are here year-round to help you through this.