Laura's Battle With Chronic Lyme Disease

About the Author: My name is Laura Miller, I am 30 years old. I live in an Amish community in Ohio. I am clinically and blood culture Lyme diagnosed, my lab Lyme tests are seronegative. I have been sick for as long as I can remember.

Symptoms With No Diagnosis

Around the age of 10 my parents began taking me to doctors for symptoms like bodily aches and pains, issues with brain fog and poor concentration, mental health issues, sensory sensitivity, and more. There were many blood tests but nothing was ever found, this trend continued into my teens. Back then my symptoms weren’t as frequent or severe but continued to worsen as the years went on. When I was 19 I had the H1N1 flu (2009 Swine flu), after which my health really declined. Shortly after I was finally diagnosed with fibromyalgia and chronic fatigue. A few things helped, but only ever for a short period of time and then I would regress back to “my” normal. I quit going to doctors, too much money spent with too little results. In 2017 I met a woman with many of the same symptoms who had gone to a clinic in Tijuana, Mexico for IV treatments and stem cell treatment. Her great results inspired me to start asking more questions and after researching stem cell treatments I made the decision to go.

A New Treatment

In November of 2017, my parents and I traveled to San Diego, California via Amtrak and from there, south to Tijuana. I went through IV and stem cell treatments and was told I would need treatments again in 3 months and again 6 months after that. After returning home I began to have a pain in my hip that to this day has no explanation, as the doctors told me there should be no pain after 3 months. While deciding whether or not to risk another stem cell treatment my parents met someone else who had been diagnosed with Lyme. They recounted, the next day over the phone, that this woman’s experience sounded exactly like mine. I began researching a little and it wasn’t long before I became very upset over how outdated and ineffective Lyme testing is.

A Lyme Diagnosis

An acquaintance of my dad’s had great results through a Naturopath so I decided to try that first. That Naturopath, through a blood culture, was the first medical professional to diagnose me with Lyme. I went to a second Naturopath and only told him a little of my symptoms and did not tell him what I had been diagnosed with and, also through a blood culture, he diagnosed me the same. I did the Naturopath’s regimen for over a year. There were a few small things that improved but not much, everything else was just getting worse – or I was herxing? I felt I had to do something else so I scheduled an appointment with an internist who clinically diagnosed Lyme instead of depending on lab results. I only went to him for a few months, I just wasn’t comfortable there. I then booked an appointment with a Lyme specialist in New York. My first appointment with him was in February of 2019, I was immediately more comfortable with this office staff and the doctor himself, who were so caring and concerned. This doctor asked me about symptoms I never even talk about. I traveled to New York via Amtrak every eight weeks. In June of 2019 I finally showed some improvement. This was a huge deal as I had had basically zero improvement ever, everything always seemed to slowly get worse instead.

Slow Improvement

I haven’t made another leap as big as that one, but have made tiny bits of improvement since then. I can now travel to New York every twelve weeks instead of eight, with the COVID-19 epidemic, I haven’t been there since January but hope to return as soon as I can. I turned 30 in January and most people dread that number but for me this is an exciting time. I do not feel good, some days I still cry and can’t get out of bed. But compared to a year ago? Two years ago? I have made significant improvements. I have also learned many lessons. I have grown closer to God. When I couldn’t do anything but cry in pain and pray for death, that’s when God felt the closest to me. There is no way I would have survived without God.

People To Count On

My church family is amazing, they support me and are always there for me. I have learned that, no matter how much I dislike it, it’s okay to ask for help. We do not have to pretend we are able to do something “normal” people have no problem doing. I learned from a few of my friends they felt a little hurt when they found out how seriously ill I was and I hid it from them, trying to pretend everything was okay. I have found out who my true friends are. These are the people who see you in ways you don’t let anyone else except direct family see you. These are the people who slow their walk to match yours so you don’t lag behind – or when your scooter’s battery is almost dead and just crawling. These are the people who grab whatever you need to carry and carry it themselves. These are the people who see something that might be an obstacle for me and reach out their hand to help me step up or over it. The most amazing thing is that they do this without calling attention to it, they just do it all without missing a beat like it’s a normal thing. When you can’t be a part of things, when you can’t go out, when you can’t even pick up the phone to call them, that’s when the ones who truly care about you stand out. That’s when they come over to visit and cheer you up. That’s when they call and ask if you’re up to hanging out and say they’ll pick you up soon. That’s when they text or call and ask how your doctor appointment went. My group of best friends is smaller but it is strong – I have truly been blessed. I don’t blame any of the friends who drifted away – I know I’m high maintenance, I said no to them plenty of times. I have love for every one of my friends, there are just some who have forever engraved themselves on my heart and I will never, ever forget their support and encouragement.

Lessons Learned

Throughout this experience, I have learned to require more from my doctors. I ask questions and I want honest answers. If I have a concern, I need to be able to call the office and be treated with respect even if they don’t think it’s a big deal question – as long as I show respect for their time of course. If doctors shrug off my questions as if they mean nothing, I’m done. I will not pay someone who doesn’t seem to care if I improve or not. My local PCP disagrees with my treatment through my Lyme specialist and he makes sure I know, but he does it respectfully and he does it with concern. He wants to help me, he is just of the “Lyme disease test is negative so we try other things” mentality – there is a ton of that. The internist I went to for a few months knows what Lyme can do and that it won’t always show up on the test – that’s great, he keeps Lyme in the conversation as we figure out if anything else is going on, BUT he would shrug off some of my questions as if unimportant. That's what made me so uncomfortable and so I stopped seeing him. I will see the doctor I disagree with because he cares. We disagree on the route, but we are working toward the same destination. I keep a tablet that I write my questions and concerns in and take with me to appointments where I add in what the doctor says. I want them to look at me, not their computer screen. I want all notes, all lab results, everything. Do not be afraid to ask. I know the doctors, nurses, and front desk personnel are busy and sometimes we feel like we’re a bother but it is your right as a patient to request these things. It is your health.

Keep Going

It took over 18 years for me to be correctly diagnosed. I know how frustrating it is. I understand. I thought I would never get better. Now I believe I will. Matthew 17:20. Some days my faith is the size of a mountain and some days it’s barely the size of a mustard seed. Especially the days when I don’t know how I’m going to continue paying for treatment. The financial aspect of this disease is astronomical. I understand. I live it every day. Keep fighting. Keep faith. Laugh at the things brain fog makes you say or think when you can. Cry when the emotions need to be let out. Just don’t give up.

I pray for everyone that reads this.

God Bless.

Laura Miller