Almost four years ago, I developed the symptom set of Chronic Fatigue Syndrome. I was constantly exhausted and always felt like I was a day away from the flu. Over time, more and more random symptoms crept in: swollen glands, hoarse throat, frequent fevers, food sensitivities, lightheadedness, brain fog, chronic gastritis, pelvic pain, and more.
For the most part, doctors had no idea what was wrong with me. They tested me for mono, strep, thyroid disorders, anemia, ulcers, UTIs, allergies, and so much more. All came back normal. I had the symptom set of Chronic Fatigue Syndrome and Interstitial Cystitis, but both are diagnoses of exclusion, without a known cause or treatment. Most doctors assumed I had a psychosomatic disorder, because “nothing could be causing all those symptoms.”
Well, I’m happy to tell you that I finally know the cause of my symptoms, and it’s not “all in my head.”
I have Lyme Disease.
Right now, very real bacteria in my body are making me feel tired, feverish, and inflamed. They’re notoriously stubborn to get rid of, but once I do, I should feel a whole lot better. And for that, I am SO GRATEFUL.
How I Finally Got Diagnosed
It’s honestly a miracle that I got diagnosed. After years of negative tests, I’d given up on a laboratory diagnosis. I was pursuing alternative treatments like the Dynamic Neural Retraining System, EMDR therapy, diet, and physical therapy with good success. My health was still too inconsistent for full-time work or parenting, but I was managing my daily symptoms pretty well. I thought if I could just have a decent quality of life, then I could live with being sick.
Then my symptoms changed. Last winter, I started having a lot more pain, which hadn’t been a primary symptom before. This got me rethinking my entire health plan. Around that time, a close family member was diagnosed with Lyme disease, and she encouraged me to get tested. I had always thought that my symptoms didn’t fit the classic Lyme profile, and I had no memory of a tick bite, but my pain made me reconsider. I got on the waiting list for a Lyme-literate functional medicine doctor.
[As an aside, let me just mention that up until this point I’d been very hesitant to go to a functional or naturopathic doctor. I know some people have great success with them, but I’ve watched others being preyed on by not-so-scientific practitioners promising miracle cures. They’re also not covered by my insurance, and I didn’t want to tank our savings. So needless to say, I researched this doctor heavily before meeting with her, and I encourage everyone to do the same. I’m also happy to give her information to anyone in central Illinois looking for a good practitioner.]
My new doctor spent almost three hours with me during our first visit, getting a detailed history of my symptoms and risk factors. She immediately suspected Lyme disease and ordered the IGeneX immunoblot test for Lyme and tick-born coinfections. This test meets the strict standards of the CDC and is one of the most accurate Lyme tests.
I honestly assumed that the test would come back negative, because historically my labs always have. But to my surprise, the results were very clearly positive for Lyme disease and Babesia (a common coinfection). I also had an equivocal result for Tick-Born Relapsing Fever.
I immediately started tearing up. After four long years, I finally knew why I was so sick. And even more exciting, I now had a path to health.
My Treatment Plan
My doctor gave me two main options for treatment: long-course antibiotics or an herbal protocol. For the first, I would have to be on multiple antibiotics (plus an antifungal and mega probiotics to prevent imbalances) for about ten months. I might feel better sooner, but I might also have major herxheimer reactions in the process. For the second, I would gradually increase doses of prescription-grade herbal tinctures until I hit a level that could effectively kill off the Lyme and Babesia. I would take that dose for about six months. I might not feel better as quickly, but the process would probably be gentler on my body, and I could target the Lyme and Babesia at the same time rather than in succession (which is why antibiotic treatment is longer).
After a long discussion about the pros and cons of each, I decided I wanted to try the herbal protocol first. My primary concern was my quality of life during treatment. Lyme disease has weakened my body a lot over the last four years, so a gentler treatment seemed like the right way to go. Of course, if herbs don’t ultimately work for me, I’ll be first in line for antibiotics.
Right now, I’m using the Beyond Balance herbal protocol for Lyme and Babesia. I’m only at half of the treatment-level dose, but I can already tell something is happening. I’ve been having mild herx reactions, and when I’m not I feel pretty good. I should see bigger results in a month or two.
What About DNRS?
A lot of people find this blog through my posts about the Dynamic Neural Retraining System (DNRS), and it’s the thing I get the most questions about through my contact form. So I just want to directly address a few things about DNRS and Lyme.
First of all, DNRS clearly works for Lyme patients. I’m proof of that. Although I didn’t know I had Lyme disease, DNRS drastically improved my symptoms. I’m starting treatment with far better energy, mental clarity, and sensitivity level than I would have if I’d never done DNRS. For that, I’m extremely grateful.
However, clearly DNRS didn’t (and doesn’t claim to) kill the Lyme bacteria in my body. It cleared up some of the limbic system dysfunction caused by the Lyme, and it probably boosted my immune system too. But it wasn’t the most effective thing for the root cause of my symptoms.
So do I recommend DNRS for Lyme patients? It depends. If you have a lot of sensitivities or neurological symptoms that are persistent during or after treatment, then yes by all means RUN to DNRS. It will probably help you. Do you want to try a supportive therapy on top of your Lyme treatment? Great, try it out. But I would not recommend using DNRS in place of a Lyme treatment that actually targets the bacteria. Some people think DNRS can cure just about anything, but I am not one of them.
I actually stopped doing DNRS several months ago (and need to write a blog update about that—sorry!), and I don’t plan to do it during my Lyme treatment. After treatment, I may pick it back up, but I’d like to just focus on one thing at a time right now.
Since my diagnosis, I actually feel hopeful for full wellness again. I no longer assume I’ll be some degree of “sick” forever. Instead of aiming for small progress, I’m starting to dream big dreams again: grad school, a career, travel. I’m still getting used to the idea that I might feel completely fine within a year, but it’s thrillingly close.
Of course, Lyme isn’t always a straightforward disease to treat. Even with an expert guiding my treatment, it might take longer than expected. I’m okay with that. I’ve learned to be patient with the process. But I’m choosing to be hopeful for the best outcome.
Thanks for joining me on the journey. I’ll try to keep you updated on my progress!
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Photo: © Elizabeth Steere