The hardest thing for a patient to endure is a chronic illness that has no name. I say this because if you don’t know what it is, then it stands to reason that the treatment will be a mystery as well. At the time I was struggling to get a proper diagnosis, I was too sick to really know what was going on around me. But what stood out, was how many tests and scans were run and medications taken, and I still felt horrible. Truth be told? I didn’t think I was going to survive. With every passing day that turned into weeks and weeks into months, with every symptom that intensified, with every medication that failed, I had nothing to hold on to but my faith.

“Faith is believing in something when common sense tells you not to. Without faith, a man can do nothing; with it all things are possible.” --Sir William Osler

“Faith is unseen but felt, faith is strength when we feel we have none, faith is hope when all seems lost.” --Catherine Pulsifer

For the past six years, I have traveled all around the state, raising awareness and educating the public at large on the complexity of diagnosing and treating Lyme and tick-borne disease. I share my personal story to show just how devastating these diseases can be. I correct myths and educate with up-to-date research and scientific evidence. No one ever thinks that getting bit by a tick can cause that much damage to a person’s health, but I would invite you to come to our support meetings some time for a reality check.

These diseases are real, and they cause real debilitating symptoms. Just because a medical provider doesn’t fully understand the complexities of tick-borne disease doesn’t make it less real. It also doesn’t mean that those patients deserve to get less than standard medical treatment. I wouldn’t be here today if my medical provider had given up on me when they hit a wall. It took time, it took knowledge and experience, it took a vast amount of resources. At the time, I didn’t fully understand why or appreciate all the effort that my team of providers put into getting me healthy. It wasn’t until I went into remission and looked backwards at all that I had been through. It wasn’t until I became an advocate and educated myself on everything to do with Lyme and tick-borne disease that I understood just how difficult it can be to diagnose a patient, why not all labs are created equal and why who you see matters in getting properly diagnosed and treated. Not all providers are going to be knowledgeable or able to diagnose or treat effectively and that is ok. But don’t stand in the way of the ones who are doing so. Don’t mock them and most of all, don’t shame your patient for the choices that they make. Many hospitals and medical facilities claim that they don’t discriminate and yet they do.

I spent time looking into other diseases that baffled our medical system: Irritable Bowel Syndrome, Celiac Disease, Hyper- and Hypo-thyroidism, Fibromyalgia and Chronic Fatigue. Our bodies produce symptoms that can stump a medical provider or keeping them running tests, ruling things in or out along the way. Ironically enough, Lyme Disease is in this category. In the absence of a known tick bite, symptomology can keep a provider guessing and all too often, a patient misdiagnosed.

Science is only as good as it stays current. Once upon as time, there was a disease spreading amongst the gay community. It was given a name, HIV/AIDS and its was categorized as a disease transmitted among gays and their partners. Until heterosexuals got sick. And then babies. This changed how the medical community view HIV/AIDS, but it took some time and it took some rogue researchers and medical providers to think outside the box. Today, our view and understanding of HIV/AIDS is completely different. Likewise, with Fibromyalgia and Chronic Fatigue. With process of elimination, patients were still being treated like it was a mental health condition and told to reduce their stress levels, exercise more and watch their diet. Today, we know more about nerves and how they work and can overwork and produce symptoms that we know refer to as Fibromyalgia (overactive nerve endings). Chronic Fatigue Syndrome is real and its not a patient being lazy. Adrenal Fatigue is real. There is so much more that we know about these conditions that wasn’t known 20, 30 even 40 years ago. We need to stop and think about how patients are being treated today by today’s standard of medicine.

It pains me to share this with you, but I am doing so in hopes to shed some light on what patients are going through. Just last week, a patient seen by a medical doctor in Portland (who works for Maine Medical Partners) was told that 1) Lyme and Babesia do not exist, 2) they are not real illness, 3) that they were created by a group of naturopathic providers (who by the way are not real doctors) to milk vulnerable patients out of their money. I have no words…. wait! Yes, I do but they are not appropriate for this column so use your imagination. First of all, shame on that medical provider. Their patient is already stressed out, in pain and suffering and this provider decides to take jabs at a disease and at a group of providers that they clearly know nothing about. I assure you that Lyme and tick-borne diseases are real, they exist at acute and chronic stages, they are acknowledged at state and federal levels and there are many different medical providers (MDs, DOs, RNs, FNPs, PAs, LCSWs, MSWs, LMTs, OMTs, PTs, I could keep going) that diagnose and treat these patients. Lyme literate providers are the medical providers who take it upon themselves to learn more about the disease, who are current with diagnostic tools and have a vast amount of treatment resources because they understand that there is no “one size fits all” approach to treating a patient with a tick-borne disease and this information has evolved since first being identified. In fact, once it was identified and more research was done, it was discovered that the bacteria has been around for a very long time (as far back as discovering spirochetes in tissue of the Ice Man).

So, are these diseases rare or have we just not understood with full complexity in properly diagnosing and treating? I blame lack of education and rigid administrative rules. Patients are being told things that are not correct, even harmful and they are doing so because the administration has set rules on how their employees are to handle patients with tick-borne disease. Lack of understanding and lack of education won’t make an infectious disease go away, but it will interfere will how a patient is treated and how they receive treatment.

One more painful example: a patient diagnosed and being treated for Lyme Disease sees their primary care provider for another health issue and upon reviewing their test results, tells the patient that they don’t have Lyme and they do not accept or acknowledge the tests run by another provider. I will further add that this primary care provider has adamantly stated to more than one patient (me included) that chronic Lyme doesn’t exist. Oh, and this was all done inside of a 15minutes office visit. I’m sorry, on what planet is this acceptable?

I was asked recently, “doesn’t this make you mad?” to which my response was, “it absolutely does but attacking the providers won’t change anything. Sharing information and getting free education into their hands will hopefully change some medical minds about this (and it has) but not enough.”

When I first got into advocacy work, people were not talking about Lyme and tick-borne diseases to the extent that they are today, and it was much harder for people to grasp and understand what I was telling them. I think on some level they wanted to know but once they realized how bad it had gotten, they wanted to shut it off. Every day, I hear people complaining how bad the tick population is and how afraid they are to spend time outdoors and yet, they have not adopted a daily prevention routine. Something as simple as treating your clothing with Permethrin and applying repellent to your skin takes minutes out of your day ~ and yet, many of the folks I talk to don’t do this.

Prevention is key to staying tick-free. There…I said it. Even if you wear a natural repellent or eat garlic, its still a repellent, its something. But to do absolutely nothing, when we live in the most endemic state, in the most endemic region, with the highest number of new tick-borne disease cases per capita…and people are complaining about the ticks and yet continue to do nothing about it. That will not only guarantee that you have a tick encounter, but with the number of infected ticks on the rise to almost 40% here in the state of Maine, it’s like going out into the rain and thinking you won’t get wet. Oh, you will have a tick encounter and whether you contract a tick-borne disease is another story. But if you, I’m right here with free resources to get you the help that you need to make a full recovery.