In August 2013, the Centers for Disease Control and Prevention announced it was incorrect in reporting that 30,000 people in the United States had Lyme Disease. The CDC corrected its statement by saying the count was closer to 300,000, and quite possibly much higher.

With that said, many doctors are still disbelieving patients when they present with symptoms, unless a patient has every single noted item of criteria —  flu-like symptoms and the commonly known bulls-eye.

They especially like it when you bring the tick in still attached and tell them it has been on there for 24 to 48 hours. You’ve essentially done all their work for them and they just need to write you a script for Doxyclycline. They will tell you that once you take that, you will be cured.

Most people never see the tick bite and less than 50 percent get a rash and, of those people, fewer than 35 percent produce an actual bulls-eye. Headaches and achy muscles are chalked up to hard work, as is fatigue.

According to the CDC, there is no known cure for Lyme Disease or any test that shows that the borrelia bacteria has been fully eradicated from one’s system, and yet a doctor will use the word “cured.” Interesting.

If you present with Stage 2 symptoms, having missed the early stage window and not recalling a tick bite or a rash, too many doctors are less apt to believe that you are presenting with Lyme and will dispel all your symptoms, especially if you have any history of depression.

Your symptoms will be sporadic. You may be told it’s age related. If you’re a woman, then it’s hormonal. If there is any stress in your life, it will be chalked up to that.

You might be sent to a rheumatologist for swollen joints. You may leave the office still symptomatic, but with prescriptions for anti-depressants and anti-anxiety meds and a feeling of not being heard or taken seriously.

If you’re less fortunate and make it to Stage 3 — late stage chronic Lyme — you will have a real fight on your hands. While you’re fighting with your primary care physician and every other doctor that they pass you off to, the borreila bacteria is making its way deeper into your organs and your brain.

Your cognitive issues will worsen; your neurological symptoms will make you appear erratic and emotional at visits; your threshold for pain will be gone and you’ll come off as a drug seeker, grasping at everything and anything to stop the pain.

And then you will have a good day and family and friends will fall away thinking that you’re faking it.

Then one day, purely by chance, you encounter someone else with Lyme Disease. Could be in person, through a friend or on Facebook.

Suddenly, you begin to hear your story coming from their mouth. Your doctor told you it was all in your head, but how could this person be suffering that same way? And wait, there are more — 299,999 more to be precise — and counting.

When you reach out, soon you find that there are doctors who understand this disease and its stages and they know how to treat it. And these doctors are compassionate and understanding; they know what you’re going through. They believe you and for the first time in maybe years you begin to feel some resemblance of hope.

This is not an easy journey.

Too many doctors are dismissive of Lyme patients. They don’t do that to cancer patients, cardiac patients or AIDS patients.

Lyme is a tangible disease. It shows up in blood tests and is confirmed even more thoroughly through physical examination. A Lyme-literate doctor will know exactly what is going on and how to deal with it.

Lyme Disease is one of the loneliest and most degrading diseases to have. Doctors talk down to you, write awful things in your medical chart, talk to other doctors within the office about you. They make you feel inadequate. They talk about you as if you’re not even in the room to those who accompany you to your visits.

Dr. Sheila Pinette, director of Maine’s CDC, has stated repeatedly in print that Lyme Disease is on the rise in Maine and recently warned patients that “It’s very important, you can get quite ill, to make sure that you advocate for yourself. And if you hear ‘no,’ go back in another couple weeks and check again.”

Why do we have to fight for our doctors to hear us, to believe us?

They think we’re making up symptoms, creating hype. If that were true, how can more than 300,000 people from all over the United States, who don’t know each other, have the same stories, the same symptoms?

That is why, by the time a person does find a Lyme-literate doctor, they are many times in the late chronic state of Lyme disease, sometimes with irreversible damage to their health.

This needs to stop and I don’t know who has to say it in order for our doctors to hear and abide by it.

They are certainly not listening to Pinette, or to Gov. Paul LePage for that matter.

On June 24, 2013, LePage signed into law “An Act to Inform Persons of the Options for the Treatment of Lyme Disease.” Yet many doctors still send patients away.

It has been more than 20 years since the Infectious Diseases Society of America and the CDC set guidelines for diagnosing and treating Lyme Disease. Since then, over 300 strains of borreila bacteria have evolved, along with 13 known co-infections, and counting.

Those guidelines were originally for tracking purposes. They were never meant for diagnostic and treatment measures and certainly not on an epidemic level.

Lyme Disease is a growing epidemic. More and more people are being diagnosed in the late, chronic stage, which is debilitating.

It is time for new guidelines.

It is time for all doctors to listen to us, to hear us, to believe us.

It is time for doctors to stand with us, not against us.

Paula Jackson Jones of Nobleboro is a late stage chronic neurological Lyme survivor who, in April 2014, went into remission. She founded Lincoln County Lyme Disease Awareness and co-founded Midcoast Lyme Disease Support and Education.

A letter to myself, written as if it were still 2009:

Dear Paula,

I know that this is going to sound strange, but in just a few short months something is going to happen to you, something that you are not expecting, something that you didn’t ask for or were even aware could happen. Your life is going to change in ways you never fathomed.

I am writing this letter in hopes of preparing you, to bring you some comfort, for what lies ahead is not pretty or easy.

I know that you consider yourself a strong, resilient woman. I know what you’ve been through, what you’ve survived. I am here to remind you that all that strength will be needed, will be used. All those coping skills will become an asset in ways you never thought you’d have to use.

I am here to assure you that you will survive it even though there will be times that you will cry out to God to call you home, when the pain is so unbearable it supersedes any other thought.

I am writing this letter because I know how you think, how you operate and I want to tell you that what you think and what you know will be challenged.

People who you trust will fail you, will turn their backs on you and walk away. They will mock you because they won’t understand what you are going through.

I know how frustrated you will become because you won’t understand it, either. You’ll want compassion and support and I am here to tell you that you will get it, but in the most unconventional forms.

Don’t worry about the ones who let you down, who walk away because they are just going to make room for all the new people who will come into your life — people who share this journey with you, who understand you in ways even those closest can not. They will inspire you with their stories, educate you with their experience and encourage you to fight the good fight, to stay the course and one day, they will recruit you to join them as fellow Lyme warrior, educator, advocate and supporter.

I am writing this letter because although your body will break down and you will lose sight of the woman you once knew, you will be rebuilt into something stronger, something greater.

Now listen — you survived all those things before this. This path will strengthen you even more. And as you grow, you will have all the support you need for every step of the way.

I need you to remember this part because you will lose every ounce of strength that you have. Even the most mundane daily chores will be taken from you. You will be attacked from all sides — physically, mentally and emotionally.

I am writing this letter to assure you, that although there will be some very dark moments filled with some of the worst pain you’ve ever felt, you won’t be alone. Your cries will be heard, your tears collected. All your ashes will be saved and restored one day. I am here as living proof that you will survive this pain, the darkness, the despair and even the heartbreak of everything that you will lose.

I am here to tell you that pride won’t get you anywhere. You will have to ask for help. It will humble you and from there, you will grow. There are lessons to be learned and whether you want to or not, you will learn them.

Now this next part of the letter may be difficult to read and even harder to grasp.

I am writing this letter to tell you that those doctors who you’ve place all your trust and faith in will fail you on the first part of your journey. They will challenge you and exasperate you.

You’re going to face some difficult times and hear some not-so-nice things. You’re going to feel alone and desperate. You’re going to feel lost and hopeless. But I am here to remind you to stay the course, don’t give up because hope is out there.

You’re going to have to listen to others who have gone down this path and you’re going to need to filter things and do your own research (that part I know you will love). The frustration will come from the many walls that you hit, but keep hitting them, for one day they will crumble and you will see a path that will take you in a different direction.

Please trust me — you want to take that path.

I am writing this letter because as unconventional as this path may seem, it is going to save your life. You won’t understand a lot at first, but the people that you meet on this path will teach you.

They will stay close to you and they will check in on you. You will never feel alone again. They will empower you to want to get better, to want to make a difference for others.

I am writing this letter because I don’t want you to give up hope. I can’t say how long this bend in the road will be, for I am still here on this journey, five years later, but so much better than I ever was.

I know when you first become sick, you’re going to think that this will pass and I am here to tell you that it will, but it will take time. It will get worse before it gets better, that is just how chronic illnesses work.

I am here to tell you that this illness will forever change your life. It will break you down physically as it grows you spiritually. It will strengthen core values within you that had been ignored and make them a priority. It will change your outlook on life and set your feet on a new path. You won’t know where you are going or when you will get there, but that won’t matter because you’ll enjoy all the stops and people you meet along the way.

I am writing this letter because I know you will find all of this hard to believe. Doctors turning their backs, insurance wars, outdated guidelines by the Infectious Diseases Society of America and the Centers of Disease Control and Prevention, misdiagnosis after misdiagnosis and failed treatment.

I know you and I know how you think. But trust me, it will be bad. It will be frustrating. It will make you scream at doctors and it will reduce you to tears in public settings. You won’t care anymore but I am here to tell you, don’t give up.

I am writing this letter to tell you to keep pushing forward. Don’t take “no” for an answer. When you hit a wall keep pounding until it crumbles. When you feel lost, cry out, for there are people who are there to help you. When you feel alone, lift your head and look at the thousands who stand with you.

You won’t know or even remember all their names, but you’ll know their stories and it is that connection that will forever link you to each other, strengthen one another even from a distance. It’s that connection that will take a debilitating disease that can weaken even the strongest, toughest person and make them Lymestrong.

Love, Paula

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