I Was Diagnosed with Lyme Disease Today. Now What?

I remember the day I was diagnosed with Lyme disease, bartonella and babesia as though it was yesterday. When my Lyme literate doctor spoke those words, “your test came back and you have a CDC confirmed case of Lyme disease,” my world momentarily stopped spinning. It was one of those movie-like moments where my doctor kept speaking but everything in my brain went silent. I was filled with a sense of relief, for finally knowing what was wrong with me, yet absolutely terrified at the same time. After the initial shock wore off, I knew I needed a game plan for the coming months and years.

**Before I go into the ‘Now What?’ portion of this essay, I think it’s important to set some parameters. I was sick for a very long time before finally getting diagnosed. I went misdiagnosed with fibromyalgia for about fifteen years, for starters. I had been complaining about fatigue and exhaustion since childhood and I was nearly misdiagnosed with multiple sclerosis in my mid-twenties. By the time I was diagnosed with Lyme disease in 2017, my list of symptoms was as long as my arm…drenching night sweats, memory issues, word recall problems, a progressive tremor, excruciating menstrual cycles and dizziness to name a few. (See here for a more extensive list.) My experience will be different from yours, especially if you caught it earlier. It’s also important to note that I began treating nearly ten years ago, so new research has developed since then. All I can do is share with you how I went about preparing myself for my battle. I hope it helps!**

Okay, so you’ve been diagnosed with Lyme disease. Now what?

1. Find a Lyme literate doctor

First and foremost, if you’ve received positive Lyme disease results, I highly recommend that you find a Lyme literate doctor. Right away. I do not believe you can treat this disease on your own, nor should anyone have to go it alone. I know that I could not have navigated this treatment by myself.  It is a complex disease, even without co-infections, that requires comprehensive, symptom-based treatment. If you’re reading this and you don’t have a Lyme literate doctor, please go here and start the search. There are also state-specific Facebook support pages that may be of assistance. I find this to be the most important step you can take in your Lyme disease journey.

2. I firmly believe in antibiotics for treating Lyme disease

After my doctor shared my results with me, she began to prepare me for what was to come. First, she gave me a choice to treat with antibiotics, herbals or a combination of the two. She explained that going the all herbal route is often more expensive and can cause worse herxing. I chose to treat with a combination of antibiotics and herbals. I stand by this choice still today. I did in fact find that I was way more sensitive to herbals. But, that was my experience. It may not be yours.

3. Healthy, organic, paleo diet

Next, she recommended following the paleo diet. I do believe this is important. The key aspects of this diet are: grass-fed meats, organic vegetables, no gluten and no sugar. No sugar!! Your body will be working really hard to get better. You can help it along by eating healthy and supporting your immune system. I followed the paleo diet strictly for the first three months. Truth be told, it was hard for me and I lost a lot of weight. Once I got through those first three months, I had a cheat dinner or breakfast once a week and a cheat lunch once a week. Those cheats never included sugar. Sugar was the one thing that definitely made me worse. On the few occasions I had a desert of some sort, I knew it. It made me feel horrible. It literally felt like the bacteria started vibrating with joy throughout my body at this fuel I had gifted it.

“Yes, certain foods, especially refined sugars, processed items, and inflammatory ingredients like gluten and some dairy, can fuel inflammation, weaken the immune system, and potentially promote bacterial growth or protective biofilms (like Candida/yeast), making Lyme symptoms worse and hindering treatment, while an anti-inflammatory diet rich in whole foods supports healing. There’s no single “Lyme diet,” but focusing on nutrient-dense foods and avoiding inflammatory triggers is key for immune support, though individual sensitivities vary, requiring personalized food journaling and doctor guidance.” AI overview of these articles: Igenex: Lyme diet recommendations, Global Lyme Alliance: Lyme disease diet

4. You will get worse before you get better. This is the unfortunate normal

Maybe the most important thing my doctor imparted to me on that day is that I would get worse before I got better. She warned me that I probably wouldn’t be able to work for at least the first three months. And, I can tell you that she was right. In fact, I was unable to work for almost two years. As the months passed by, if a job existed that I was able to do when I felt well, I could have worked on my good days. However, I never knew when those good days were going to be. So, I didn’t work. Again, everyone is different. I know now that I also had trapped childhood trauma that made my Lyme battle even worse. I was scared and I didn’t trust my body or my mind. It’s taken me a while to heal from that.

5. I firmly believe mental therapy should be a part of your Lyme treatment

Your battle for wellness will likely be very trying, emotionally, spiritually and physically. This is the one thing I didn’t do during my battle that I wish I would have. Finding a Lyme literate psycho-therapist to help you navigate this journey could be hugely beneficial.

6. Journaling!

Journaling is beneficial for so many reasons. For me, it started out as a means to track my symptoms. A lot would happen in the two months between my doctor visits, so this helped me report back with accuracy. Treating Lyme and co-infections is a very comprehensive, symptom-specific process. Having my journal helped my doctor know what to treat next. Also, my memory was not good, especially in the beginning, so having notes was critical. Journaling can also be very cathartic. I heard once that, “putting your feelings down on paper…it makes them real. Which can be terrifying. But that will give you power over them.” When I put my feelings down on paper, is was legitimizing, validating and a bit like having a good cry. I highly recommend it.

You’ve got this Lyme warrior!

You are now a Lyme warrior! Welcome to the club. It’s not a fun club to be a part of, so reach out for support. Find some reputable Facebook/social media support groups where you can talk about what’s happening to you. When new, scary symptoms pop up, use these forums for validation that you’re not alone. Please, be careful though. There are many people out there who will tell you what to do, what medicines to take. They are not doctors. You should get that kind of advice from your Lyme literate doctor. Some reputable sources: Global Lyme Alliance, Lymedisease.org, Lyme Advise, ILADS, The Tick Chicks, Chronc Lyme: It’s a Thing, Project Lyme and more. I can share my experiences, what worked for me, but that should not be taken as medical advice. Also, and lastly, you must treat this disease. It will not go away on its own. It will only get worse. And don’t forget, when you start your antibiotics and you feel worse…that’s normal. Unfortunately. Keep fighting Lymies!!