Guest Column: Hope is a Four-Letter Word

“At the end of the day, all you need is hope and strength. Hope that it will get better, and strength to hold on until it does.”

~ Anonymous

As I lay here writing this article, I am battling yet another acute infection. I’ve been sick most of the winter and early spring catching every viral and bacterial infection that comes through town. My immune system seems to function enough to keep me alive but not enough to fight off infections very well. Which is why I end up with long-lasting infections. Last year I battled Epstein-Barr for about half the year, I had strep throat right before that. Before that, I had my 3rd PICC line to treat about 7 chronic UTIs, during which time I got COVID-19 which turned into long-term COVID. I could go on, but you get the point and really it all leads to the infections that started this all, Lyme Disease and its co-infection Babesia.

I was 18 years old when I got the call that my labs were positive for Lyme and Babesia. At that time, I was relieved, I had been watching my health fall apart for 9 months and no one could tell me why. So having an answer was a relief. Now all these years later I wish those tests had diagnosed me with anything else but Lyme.

It’s been 7 years now. Yeah, I actually had to do a double-take when I thought about the time. Time is different when you’re fighting a complex illness. It’s not that time goes faster, if anything it feels slower due to the constant pain and fatigue. But you are so busy fighting this war and trying to survive that weeks and months are a blur and seasons pass before you can even look up and see the time you’ve lost.

I’ve always felt a strong connection to the word “Hope”. Sure, it’s one of my middle names, so there’s the obvious connection. But it’s not just that, it’s a deeper connection I’ve felt my whole life. I was always a dreamer from a very young age. I had this confidence rooted deep in me that my future could be anything I wanted it to be. I wouldn’t say I had my head in the clouds completely. I knew anything worth accomplishing would take hard work. But with hope and hard work, I saw the sky as the limit. I don’t think I ever doubted that. Until Lyme Disease hit…

You’re probably wondering how one gets Lyme disease. Well, most commonly you get it from a tick bite. But mosquitoes or just about any bug can carry it. I know someone who even got it from sand fleas. It can also be passed congenitally from a mom to her child. Out-of-date info that indicates that Lyme is mainly in East Coast states is completely incorrect. Lyme disease can be contracted in all 50 states. Secondly, the info that says you will get a bull’s eye rash if you get Lyme is also sadly untrue. Only a very small percentage of Lyme patients ever get a bull’s eye rash.

Hence you get a large number of patients like me who have absolutely no idea where or when we got Lyme initially.

The smallest “nymph” ticks, (many the size of a poppy seed) are the most concerning, as they are almost invisible to the naked eye and often leave an undetectable bite. Here are some quick facts about Lyme:

Lyme disease is the fastest-growing infectious disease in the US, 1.5X more common than breast cancer and 6X more common than HIV.

The CDC acknowledges at least 476,000 new infections each year which is a lowball number as many cases are never reported.

Current testing often provides a false negative result.

Unfortunately, Lyme is not the only tick-borne illness. Rocky Mountain spotted fever is one, Babesia, Bartonella, relapsing fever, and more all come from tick bites too, which means most Lyme patients have more than one infection.

Here are some symptoms of Lyme and its co-infections:

Severe fatigue, exhaustion

Joint pain, swelling, stiffness

Neurological impairment, inability to concentrate, memory loss, vision changes

Difficulty with speech or writing, ear pain, buzzing or ringing

Seizures, light-headedness, poor balance, difficulty walking, Bell’s palsy

Cardiac issues, irregular heartbeat, murmurs,

So, what have the last 7 years with Lyme been like?

Well, I don’t think I’m allowed to use some choice words in print, so I’ll improvise. It’s been terrifying. People tell me I’m strong, but I never feel like it because I’m so scared all the time. It’s been incredibly discouraging. I’ve done treatment after treatment both holistic and conventional and none of them have worked. Remember how I talked about my connection with the word Hope. You used to be able to almost see the hope in my eyes in photos. But if you were to see a series of photos from the last 7 years you would see my battle with Lyme drain more and more from my eyes every year.

Why is it so hard for Lyme warriors or feel hopeful?

Well for starters there is no known cure for chronic Lyme disease. Some patients can reach a stage of remission but even then, the infection can become active again at any moment. To add to that no one treatment works for the majority of people to achieve remission.

One person may do antibiotics for 6 years and achieve remission. Another may take 40 vitamins for 6 months and achieve remission. And yet another may do a completely different treatment and get the same results. At the same time, someone may try all those things along with a mountain of other things and still not be healthy.

Which brings us to the heart of the issue. We don’t have a cure or treatment plan because Lyme disease does not receive adequate research funding. In fact, the average dollar amount of federal funding as listed by the NIH research budget in 2022 is $106 per patient. In comparison, research funding for the West Nile virus is $20,070 per patient, and malaria receives a whopping $108,396 per patient.

I’m not good at math, and I know advocacy work is being done to try and get more Lyme funding, but when faced with these facts one finds it hard to have hope that a cure will be found in this century.

But wait- it gets more complicated.

When an infection makes itself at home in your body it begins to cause systemic issues beyond the infection itself. It’s different for every person.

For me, it hit my nervous system. In the past 7 years from ages 18-25 while most of my friends were going to college, and starting careers and families, I have had to watch my nervous system degenerate right in front of me.

It started with excruciating pain in my abdomen. I went through 3 surgeries between my bad appendix and endometriosis, yet my pain never improved, and it got worse. After endless tests and imaging showing nothing. The doctors say my brain signals got stuck in a pain loop because of the Lyme infection and we haven’t been able to get it out of that loop. Complex regional pain syndrome (CRPS previously called RSD) is pretty much what’s developed.

I also developed severe itching that had no visible cause, another case of nerve signals being messed up.

Next, my autonomic nervous system began failing and I was diagnosed with POTS (postural orthostatic tachycardia syndrome), basically, my legs turn blue and my heart rate goes way too high.

Then my Mast Cell production system was hit and began to make me have allergies to everything under the sun.

Somewhere in the middle of this, I lost the ability to sleep like a normal person.

My stomach stopped emptying properly.

And then the damage hit my bladder causing the signals from my brain to my bladder to not connect right.

Treatments have become a constant question of “potential risk versus possible benefit” which is an equation with no firm answers. You research and pick the best you can and take it one day at a time. I do think one thing I’ve learned from this is that you’re responsible for your choices. If a treatment goes wrong, doesn’t work, etc… it’s not the treatment’s fault, it’s not the doctor’s fault, it’s simply life and part of making hard choices in an effort to someday be healthier.

John McCain once said, “Courage is not the absence of fear but the capacity to act beyond our fears.”

My point is that all of this happened in my life because Lyme bacteria got in my system and went around wreaking havoc on everything it could. I wish I could say I’m a rare case, But I’m not. I go to a Lyme support group on Zoom 4-5 times a week and there are so many others in the same fight as me. There’s an 18-year-old who never got to have a normal high school life because she is too sick. There are a few of us in our 20s grieving the young adulthood we’ve lost. Other older people have lost their careers and passions because of Lyme. Some people have made it to remission only to have it become active again. We cry, we laugh, and we talk about the hard things. We try to find that hope that’s buried.

As I lay here at 25 staring at the clouds from my deck, I know I’m not the same hopeful kid I used to be. I know now I only get little glimpses of Hope almost like a mirage. Even if you took away the constant infections and the systemic nervous system damage, the pain in my abdomen alone is enough for one person to fight. Complex regional pain syndrome is known as the most painful condition known to man. If you look up the McGill pain scale, you’ll see it rated against other common pains. For me that pain is just another day, in a week, in a year. Lyme has made me a survivor.

My 7-year-old niece recently caused me to think about something. She’s at an age where she has more questions about my health, and she’s been asking how I got Lyme and pain. I do my best to explain in simple terms. But the other day she asked me if kids and babies could get Lyme. And I was torn on what to say. I knew I was going to answer honestly, but I didn’t know what to say to mitigate her fear. Because the truth is we should be afraid of Lyme disease, but she’s watched me suffer with it her whole life, and I don’t want her to be afraid.

After the fact I tried to think about how I could prepare her in a way to be armed against possible Lyme but not afraid of every bug she finds on her outside. It got me thinking about what I wish I had done differently and wondered if anything could have changed my path. The one thing I think that possibly could have changed things is knowing the facts and having the correct info ahead of time…both of which are not located easily. But with them maybe I can make sure others don’t get it or see the early signs and have a better shot at recovery.

So here are some is some of the most important info I can put in your hands. This comes from the LymeLight Foundation website, a reputable source in the Lyme world.

Prepare before going

into nature

Wear light-colored clothing: long pants and a long-sleeved shirt. Tuck your pant legs into socks. Wear a hat.

Always apply tick repellent. Lemon eucalyptus and rose geranium oils repel ticks.

There are several all-natural sprays available. Products with DEET are also effective.

Products containing Permethrin may be used on clothing, gear, and your property.

Stay in the middle of the trail and away from foliage.

Don’t sit on logs, lean against trees, or walk through tall grass.

After Being in Nature

Perform tick checks (yourself, children & pets).

Focus on hard-to-reach areas (scalp, folds & creases).

If bitten, remove the tick using a tick key or tweezers. If you do not have tweezers, use protective gloves (or a bag). Pull straight up and away from the skin. Do not twist.

IMPORTANT! Save the tick in a plastic bag & contact IGeneX or Tick Report for tick testing.

Found a Tick? After the Bite

Watch for Lyme disease symptoms: Flu-like ailments or chills, lack of energy, or extreme fatigue.

A circular bull’s-eye rash or a small bump or redness at the tick bite may develop.

If the tick tests positive or you suspect Lyme disease, contact a doctor familiar with Lyme; preferably a LLMD (Lyme Literate Medical Doctor). Consult the International Lyme and Associated Diseases Society (ilads.org) for a physician referral, if needed.

Stay Vigilant. With an early Lyme infection, antibodies may not have had time to develop in your body. Therefore, a blood test at this time may appear negative. You may have Lyme disease even with a negative test result. Monitor your symptoms, learn about Lyme disease, and trust your body.

Lastly some extra advice from myself and others in the Lyme world, please realize the Western Blot Lyme test that is most commonly run for Lyme is the least accurate and consistently produces false negatives so please do not rely solely on it. Some reputable Lyme disease labs are IgenX, Armin Labs, Vibrant Labs, and DNA Connections.

I can’t change the fact that Lyme disease is real. And I can’t even change the fact that some of you will get it. What I hope I can do is share awareness of this disease so you can recognize it as early as possible. Most of us are in this situation because we didn’t catch the infection until years later. If you catch it early you have a significantly better chance of living your life without Lyme impacting it.

I don’t know how my story will turn out and that’s the honest truth. Most of us “lymies” don’t. I know I will keep fighting though and trying to find a path to a better future. I can’t change the fact that I got Lyme. But for now, I find that continuing to write is how I try to keep those ideas of hope near me. There’s this quote that says:

“A writer is a writer because, even when there is no hope, even when nothing you do shows any sign of promise, you keep writing anyway.”

- Junot Diaz, Professor of Writing, Winner of the Pulitzer Prize for Fiction, 2008

May is Lyme Disease Awareness Month and I truly hope by sharing my story someone else’s life changes for the better. I want to dedicate this article to all the Lyme warriors who have lost their lives to this disease and to all the warriors suffering and struggling but still fighting every day.

Credit: some awareness statistics and info provided come directly from the LymeLight Foundation website at https://lymelightfoundation.org/.