This past weekend, I celebrated five years and nine months of being in full remission from late stage neurological Lyme disease complicated by four other tick-borne disease, Babesia, Bartonella, RMSF and Erlichiosis. I share this with you in hopes to inspire those still on their journey to health and wellness not to give up. Remission is possible. It was a silent celebration for me as I sat thinking about friends and acquaintances that I’ve lost but also all the friends and networking partnerships that I’ve gained. I get asked all the time, “What was it that got you into remission?” and my answer is “I have no idea. I had medical providers that gave it their all, trying this and that and a series of combinations until I began to respond favorably.” There is no magic bullet, no one-size-fits-all approach to healing from chronic tick-borne because there are so many variables that impact not only our level of illness but of healing. Add in genetics and any other health impediment, and your recipe for repair gets that much harder. Factor in seeing a medical provider that is not knowledgeable in the complexity of tick-borne disease not experienced in diagnosing and treating and your odds of recovery go down even more.

Last week, the news media reported an upsurge in the numbers of new Lyme disease cases from 2019. Ironically, last summer, they were reporting that the numbers were much lower than previous years. It was at this point that I reached out to them and asked me to please write and explain to the readers WHY the numbers were lower. It was nothing more than an administrative issue, not having all the data entered into the system. When misinformation is reported, it can have a negative impact on society. You can’t put a positive spin on tick-borne disease. You can only tell the truth and from there, make the best position decision. Distorting the truth or downplaying the truth when the reality is quite opposite, only confuses people.

I, we (patients), have been saying for years, that the current test used in primary care physician’s offices is outdated and unreliable. I even found that statement in one of my columns from 2017. This is a truth that I’ve known since 2011 when I was connected to my Lyme provider and it was explained to me why prior testing failed me.

Since I began writing my column, I’ve pretty much been like a broken record. My story hasn’t changed. My claims have not changed. What has changed is the way the public views ticks and tick-borne disease. And with that, many medical providers have changed how they approach patients with possible tick-borne disease. I wish I could say that that last change has been huge, but it has not. There are far more medical providers who do not believe in chronic Lyme or chronic tick-borne disease. Who do not believe that patients are still sick after 21 days of antibiotics. Who not believe that their patients are still sick even with complaints of ongoing symptoms following completion of treatment. That is because we live in a world where old and new information exists, and doctors are forced to choose what they want to believe in. Now, read that again. There are options out there, proven options, evidence-based options for medical providers to choose from. They have a choice unlike the patients who didn’t ask for their infection and who have to fight to be heard, fight to get seen and fight to be treated properly. Improper treatment only keeps us sick and it aids in our chronic debilitation.

Over the past year, the news media has reported that tick infestation is control. Not only do we need to be concerned with Lyme disease but also the growing number of new cases of Babesia (a malaria-based tick-borne infection) and Anaplasmosis. We also have to be on the lookout for new species of ticks carrying new diseases. Peripherally, we know that they are there. We can’t ignore them or the growing epidemic. The federal CDC recently (Dec 2019) updated their website with the following statement: “Lyme disease is the most common vector-borne disease in the United States.” [Vector-borne diseases are illnesses that are transmitted by vectors, which include mosquitoes, ticks, and fleas. These vectors can carry infective pathogens such as viruses, bacteria, and protozoa, which can be transferred from one host (carrier) to another.] They go on to state that, “If left untreated, infection can spread to joints, the heart, and the nervous system.” I’ve been talking about this for quite some time and in almost every column. If you are not properly treated by a provider who fully understands the complexity of tick-borne disease, you will most likely not be treated properly, and improperly treated infections left to spread, can wreck havoc in ways you will never understand until it happens to you.

Am I surprised that the number of new cases of Lyme and tick-borne disease are on the rise? Not at all, because most people don’t take prevention seriously. I speak to people all the time who take ticks off by the dozens but do nothing to prevent it from repeating. It’s like playing Russian roulette with your life.

So, what will it take to change your mind? Every week, I do everything in my power to convince you to take preventative measures so that you won’t have a story like mine. Should you have a tick encounter, I am hoping that you will reach out and get connected to the right resources as soon as possible to get properly diagnosed and treated, if need be.

Last year ended with a lot of acknowledgements. The Kay Hagan TICK Act law was instrumental in getting conversations going at a federal level about the seriousness of contracting a tick-borne disease and where gaps in education and patient resources was needed. It put the spotlight on the growing number of new cases and put into place accountability and responsibility for actions to be taken by the right government agencies. Finally, we are getting state and federal talks on the same the page. Everyone will be seeing all the same data and hopefully, making all the same conclusions. We were pleased to see the federal CDC update their website with information that we’ve known all this time and have been fighting to be recognized.

That is all we wanted, to be heard and validated. To have our struggles acknowledged but more importantly, to hear “I’m sorry. Let’s fix this.” When we all get on the same side, all efforts will go further, all data will be shared, all funding will make a greater impact and we will begin to make a huge difference in the lives of tick-borne disease patients.