Here’s What It’s Like To Live With Tickborne Illnesses
A woman diagnosed with Lyme disease and babesiosis talks about navigating treatments and more
A couple of weeks ago, I published a post at Our Modern Plagues explaining how people can tell if they have a tickborne illness. Not too surprisingly, it turns out that it’s quite difficult.
Not long after, I got an email from a woman I know through a mutual friend. I’ll refer to her as Ashley (I’m using her middle name at her request). Ashley had come across my post while doing some research on her own tickborne illnesses, which include Lyme disease and babesiosis.
After some back and forth, I asked Ashley if she’d be willing to do a Q&A to help readers understand what it’s like to have tickborne illnesses, as well as some of the uncertainties when symptoms linger.
Ashley suspects she has chronic Lyme, a condition about which there is some controversy among doctors and scientists. If you have a tickborne illness or suspect you may have chronic Lyme, keep in mind that what has worked for Ashley may not work for you, so consult a physician if you have questions about diagnosis and treatment.
Here is our email conversation, edited for clarity and length:
When did you start getting symptoms and how were you diagnosed?
In the late nineties as a teenager, I attended an outdoor expedition camp near Durango, CO. While I was there, I had a very high fever of 103+ and extreme sweats and chills for about 36 hours, which then turned into a blotchy rash all over my torso that dissipated a few days later. I did not have the “bulls eye rash.” When I returned home, the camp counselors sent a note to my parents saying I likely had a “bout of Rocky Mountain Spotted Fever” (which I have since tested negative for).
Several months later I started having a variety of issues that my family doctor was unable to diagnose; I tested positive for Lyme in an ELISA test but then negative in the follow up Western Blot at the time, so Lyme was discounted. Instead I was diagnosed several other illnesses over the next year, none of which relate to ticks. The knowledge of Lyme transmission, diagnosis and treatment has improved vastly since then, though there is certainly still room for improvement across those areas today. For example, early in my situation, my family doctor gave me antibiotics but quickly took me off them because I had such a bad reaction.
What treatments have been available to you, and have they worked?
The most effective treatment for me has involved courses of antibiotics, anti-malarials, anti-virals and anti-fungals, as well as a variety of herbal supplements to support my immune system and address secondary issues related to hormonal imbalances (e.g., adrenal fatigue) and digestion issues. This slow, integrated, phased approach has helped me address most of my symptoms without overwhelming my immune system and so I can live my life and work.
Luckily, I found yoga early on during my Lyme journey, which has been a wonderful resource over the years. Some days, when I was really feeling bad, I would get on my mat and just lay in child’s pose or even just lay on my back, but my promise to myself is always to just to make it onto my mat. Acupuncture, massage, meditation, diet have also been important tools for me.
Do you still have symptoms?
Yes, but they have lessened immensely. My treatment is a phased approach, often tackling one or two issues at a time while monitoring the impact on total health. Sometimes when I add new treatments, it is really challenging. I have thrown up in trashcans at work and been unable to get out of bed during some of these reactions. There is this dance that you have to do—you have to manage your health while still living, if possible. Now I am better at noticing early warning signs and slowing down. We have this tendency to want to cure, eradicate, get rid of it. I remember thinking early on, I am going to kick Lyme! Super woman style and trying to take or increase medicine too quickly—that didn’t work so well. The goal is remission—or to be asymptomatic—and to manage my health. Some of the changes I have made, such as not drinking and limiting sugar, are probably life changes.
Through your experience, what has been the most frustrating? And the most comforting?
The most frustrating part of my experience has been the lack of knowledge about Lyme and associated diseases, the lack of effective diagnostic tools and treatments, the politicization of Lyme and the impacts this has on insurance policies. While there is still a lot of disagreement about Lyme in these areas, and whether Chronic Lyme even exists, people are suffering and diagnostic and lab tests often show signs of infection or inflammation. It is really hard when you feel sick but experts are saying it is in your head and all of your insurance claims are sent back to you as “denied/ rejected.” Of course the financial burden is frustrating—my treatment can cost $800 per month out of pocket. However, you don’t have anything if you don’t have your health.
The most comforting part has been really taking ownership of my health and also to have the support of my doctors, family, and friends. I remember the day I found my doctor, I called my mom crying and said “I finally found someone who can help me.” Of course it has been a struggle, but my mom and I kept great records of my health over time—and I turned over hundreds of pages of organized records to my doctor, which were helpful in providing context and history. I have worked really hard since then, with my support network of course, and over the last several years, I have gotten my life and health back slowly.
Anything else you’d like to add?
Many people with Lyme are trying to manage life, work and health, including the financial burden of treatment and the struggle of dealing with insurance companies while they feel horrible. I rely on a huge support network of family, friends and medical practitioners. Often the issues are complex, both medically and emotionally, and people with Lyme often have trouble understanding or conveying them. If you know someone with Lyme, please do some research and offer support in any capacity if you can. I remember feeling so grateful when my mom really did research: she came to my first appointment, knowing the complex Lyme terminology, to capture notes and help ask questions. Not feeling alone was unbelievably helpful for my recovery. I think we all appreciate compassion and understanding.