Lifting the green curtain.

I have Lyme Disease.

There. It’s officially out in the great world wide web for all to see. Insurance companies can have a field day and “red tag” me…choose to deny me coverage. I really could care less (that’s not an invitation) though. I’ve spent the last year hiding behind my diagnosis and trying to remain “anonymous” or at the very least, only a statistic to the CDC.

What’s the big deal with Lyme Disease you may wonder?

It can be devastating to say the least. I’m fortunate I figured it out “early”, five years after the tick bite. Some never even see the tick or know they’ve had for years and years, bouncing from doctor to doctor and every kind of specialist trying to figure out what’s wrong with them.

I didn’t think twice when I first realized that the infected spider bite I thought I had, was actually a bullseye, the trademark symbol you’ve been bit by an infected tick. I was quite relieved when the doctor said I only needed two weeks of docycylene and I’d be Lyme-free. Back to normal in no time! There was nothing to worry about and no one in the medical field seemed concerned in the slightest. That was five years ago. If I would’ve been treated maybe even 2-3 weeks longer and with the proper medication, I’d probably wouldn’t be in the situation I am now. I’d definitely would’ve saved thousands of dollars.

The bullseye went away, but my health deteriorated dramatically over the following few years. Yet, I never connected it back to LD, which looking back now, it was so obvious. Sleeping was a challenge—apnea, tremors, night terrors. Joint pain set in. I began to develop food intolerances, brain fog (poor concentration and inability to focus or remember), heart pain, chest pressure, muscle tremors, chronic fatigue, shortness of breath, teeth grinding, weight gain. All the while, seeing doctor after doctor who couldn’t give me answers and scoffed at the very question, “could it possibly be related to LD that I had previously?”. No one could connect the dots and I just attributed it to stress and getting older. I’m 33 years old, not 50, but whatever. Maybe I was just a complainer. Maybe it was all in my head and I was just a hypochondriac. I tend to overthink things and gravitate towards the worst. “My left arm is completely numb and my chest has been hurting for a few hours, but there’s no way I could be having a heart attack. I’m healthy. I’m too young. It must be in my head.” Or “I’m laying here, completely still and am out of breath for some reason. Maybe it’s just allergies.”

I always found a way to ignore what my body was trying to tell me. It was only by a twist of fate and a concerned brother that led me to finding a doctor that would change my life forever. We call these doctors “Lyme Literate MDs”. Sure, any doctor can be knowledgeable of Lyme Disease and it’s existence, but so very few doctors truly understand the devastation it can leave behind if left untreated or not discovered into years later. LLMD’s are very controversial and rare because they go against board certified guidelines that dictate how LD is to be treated. The guidelines themselves are a sticky subject and are regularly disputed. I won’t go into too much detail about the who’s and what’s but if you ever want to understand the controversy of Lyme Disease and why the truth is usually hidden you should see this movie, Under Our Skin. Thousands of LD sufferers lives have changed thanks to LLMD’s. Unfortunately, that’s not always enough and some of them have had their medical licenses revoked.

It’s not that doctors don’t believe LD exists, but many don’t believe it exists in a chronic or late stage form and they definitely don’t believe in most of the treatments. This is what baffles me when they have live evidence right in front of them, and still manage to deny it. Accurate testing is tricky and expensive to say the least. On top of this, treatment itself is controversial and most often involves high-dosage and long-term use of antibiotics. This was the foundation of my treatment and I can’t tell you how successful it has been for me. I’ve seen the numbers of these bugs be depleted. Along with a combination of many other therapies. Together, I’ve seen the improvement and feel more my old self than I have in years. You can’t deny that. I swear. Doctors use long-term antibiotics to treat acne, and you don’t see health insurance and the medical industry freaking out about that. It’s an exhausting battle. And one that I no longer have the desire to hide in fear of being discovered by the insurance companies. That’s a whole other story.

I even refrained from telling people at work (aside from the bosses) because of the insurance fear and also because people just wouldn’t understand. I “looked” fine to them. It’s not like I had cancer or anything, right? I’ve heard people say this before, not so much to me, but to others and it just makes me so angry. Who are you to tell someone how they feel? Can you see the tumor they have in their brain? Or can you physically see that someone needs a bone marrow transplant? The treatment I underwent for the first 3-5 months was intense. I barely had enough energy to get to the bathroom, and the meds I was on wreaked havoc on my digestive system. I was not pleasant to be around. Just ask my husband. It was a lot for me to take in and a lot to learn about, you can’t just dump that on people and expect them to understand why you won’t be able to work for the next three months. LD definitely taught me to be more compassionate to others and their own physical well-being. I always assume I don’t know the full story.

It’s been such a huge education. Lyme disease is not what it was thirty years ago. People are getting sicker now, thanks in part to co-infectants (other parasites/pathogens) that are also transmitted by the ticks. I had Babesia and Ehrlichia. Basically, it was like having Lyme with a side of malaria. A winning combination. I’ve been fighting it though for a year now. And I have to say, I’ve got the upper hand on this now. I feel much more in control and more importantly, more myself again.

Recently, I had an epiphany. Every visit I was having with my doctor left me disappointed and frustrated, because I’ve been fighting to get back to my “normal life”. I want to be able to have a normal diet again where I don’t have to think about things like gluten, casein, or making sure I don’t have alcohol and sugar. I want to be able to stay up past midnight if I want to. To have the energy I once had. But I don’t and I can’t still. It’s better, yes, but not the way it used to be. I’ve spent the last year coping with Lyme Disease and all the joy it brought me. What I hadn’t done is accepted it and all that that means.

Instead of trying to be my “old self” which I never will be again, I started to look at who I am now and learn to accept these new lifestyle changes. I will always have to contend with Lyme unfortunately. I’ll have a stronger immune system eventually and be able to keep this disease in check most of the time but in one way or another it will always be a part of me. Maybe my diet will always have to be “special” in some way. At least I’m better prepared and know what I’m up against. If I’m not fighting to get back to somewhere I’ll never be able to reach, I can’t be disappointed right? This must be God’s way of trying to teach me something and I’m learning to not live in denial and run with it instead.

I’m hoping this shift in thinking helps me to reach another level in fighting this disease. I think my doctor was getting as disappointed as I was since I’ve sort of stalled in the way of making progress. LD is fickle. Just when you think you’re in charge, you get a reminder that you’re not. Everyone responds differently to treatment and there’s no definitive right and wrong. Maybe that’s why guidelines are so hard to establish?

I’ve spent the last year doing things I’d never imagined doing but together with the support of an amazing husband, family and friends I’m well on my way! I want to be able to educate people about this disease though. I’m super paranoid when I hear people talk about their health issues and the majority of them all fall under LD. It’s tricky and often misdiagnosed so people tend to only treat symptoms and they get worse over time. I just don’t want people to have to go through what I did and what others continue to struggle with. It doesn’t have to be so devastating…if we just learn to talk and acknowledge it for what it is.