It’s March and I am coming up on my one year anniversary of being diagnosed with Lyme Disease. The past year has taken a physical and emotional toll on me because of my Lyme treatment. I am finally starting to feel like my old self again, but it was not easy to get to this point.
Many people wonder how Lyme Disease treatment works. In the (lucky) case of finding the Lyme soon after being bit, you usually have an antibiotic protocol for two weeks of Doxycycline. For those of us who have had Lyme live in us for quite some time, it is not that easy. I was taking 100 mg of Doxycycline, twice a day, for 28 days that first month of knowing I had Lyme Disease. Of course, the antibiotics are there to help your body kill off the bacteria, but you have to suffer first.
A Herxheimer Reaction (herxing) is a common term in the Lyme Disease community that essentially means your symptoms get worse before they get better. During a “herx” your body is detoxing and the bacteria is dying inside of you, but before they die off completely, your body gets one last round of symptoms. I thought I was in the clear of having a herx after not having any major flare-ups while on antibiotics for the first two weeks, but then it hit me.
Amplify my usual Lyme symptoms by five and that was my herx. It’s not a fun feeling to literally feel your body killing off a disease. Thankfully, it didn’t last too long and before I knew it, my 28 days were up. After finishing antibiotics though, I realized fairly quickly that this wasn’t the end of my treatment.
I went back into the cycle of feeling like shit most days of the week. Some days I couldn’t get out of bed, a lot of days I was too dizzy to drive to work, and so I knew it was time to find a real doctor. In the Lyme community, doctors who understand the disease are known as “Lyme Literate,” so my hunt for an LLMD began. It took me weeks of research and recommendations to finally set up an appointment with a doctor in an office in Lakeview. Despite Lyme Disease cases increasing every year in America (over 329,000 people are diagnosed with Lyme Disease per year) there were a very small handful of doctors in the Chicagoland area to choose from, and an even a smaller amount of those that were willing to take on new patients so quickly.
Essentially from April until October of last year, I was on some form of antibiotics. I missed so many social outings, important events like baby showers and birthdays, appointments, and general plans with people. During those months I didn’t feel like my normal, outgoing self, and it was hard to live a summer inside. I fell into a funk—and how could you not when life as you knew it changes almost overnight? How could you not when your body constantly hurts, and simple things like walking around your neighborhood take such a toll on you it feels like you just ran a half marathon?
In my experience, treating Lyme Disease has been the worst part of Lyme Disease, yet it’s absolutely necessary to live through this pain in order to heal, and I can finally see healing take place.
I’ve been on the following on and off since my treatment started in April. Some I am still currently taking.
- Doxycycline (1 round)
- Minocycline (2 rounds)
- Rifampin (Fun fact: Rifampin is also used to treat Tuberculosis)
- Prebiotics and Probiotics
- Liver Detox supplements
- Activated Charcoal
Other Forms of Treatment
- Epsom Salt Baths
- Anti-inflammatory Diet (no gluten, dairy, soy, sugar, alcohol)
This was what has worked for ME. There are people with Lyme Disease who do less or more treatments depending on the severity of their symptoms. I know in the grand scheme of Lyme, I am one of the lucky ones. But treatment still took its toll on me (and those who are close to me) and for me personally, it’s been a lot.
I’m at the point where I’m finally missing less work, being able to follow through with
For those of you just starting out with treatment, or are in the midst of a terrible herx, just know that it gets better and that you have to feel in order to heal.
Keep an eye out for a blog post on my one year anniversary with Lyme Disease next month.