My List of Lyme Disease Symptoms

I have been spending a lot of time on Facebook Lyme disease support groups. A recurring theme of people reaching out with questions about bizarre symptoms they’re experiencing has me reaching into my memory bank. I know how they’re feeling. In fact, the desperate fear of the unknown that I experienced during my treatment was a driving force for starting this blog. For that reason, I’ve decided to write down a comprehensive list of my Lyme disease symptoms.

Some of these symptoms were minor nuisances. Others were terrifying and debilitating. Some of them lasted a few days, others persisted for months. A few of them would go away only to make a frustrating reappearance months later. Combined, the entire experience was a living nightmare. I am reminded of the constant fear, but more than that, my every day was enveloped in hopelessness and despair. I hope that by compiling this list, others can find some comfort in knowing that they’re not alone. More than that, I hope you can find some solace in knowing that it will get better. This too shall pass my friends.

Note: I believe my Lyme disease went undiagnosed for years. I have no way to confirm it but I speculate, as does my doctor, that judging by my symptoms I had been carrying these bugs around for twenty-plus years. I never had a bulls-eye rash, that I remember. My Lyme disease panel showed multiple forms of the bacteria, which indicates a prolonged infection.

My list of Lyme disease symptoms

* These symptoms are denoted because I can not confirm they were related to a Lyme bacterial infection but I speculate that they were.

Physical ailments

It is important to note that I was diagnosed with two co-infections, Babesia and Bartonella. I have not gone so far as to distinguish which symptoms were related to each infection. In my mind, I simply lump them all together. I do know that the painful rash on my hands and toes is a symptom of Bartonella. In fact, my doctor referred to them as Bartonella toes.

I would also like to relate that some of these symptoms I experienced pre-diagnosis. For instance, the low-grade fever, tremor, exhaustion, excruciating menstrual cycles and diarrhea are all symptoms I lived with for years, among others. Those same symptoms were exacerbated once I started treatment. A few of the symptoms I experienced intermittently over a few decades. In my early twenties I suddenly and inexplicably (at the time) began experiencing persistent dizziness and brain fog. After a few months, and a slew of tests, it simply resolved. This too came back with a vengeance once I started treatment.

I would also like to note one other thing that comes up more often than I would have thought. The affect that the moon seems to have on your Lyme disease symptoms. Yes, I too experienced that. During a full moon my body would go even more haywire than it already was. There is an interesting article that discusses how and why this may occur.

Emotional/Psychological symptoms

Aside from the actual psychological and emotional symptoms of Lyme disease, the toll that treating this disease has on people is often severely overlooked. Pre-treatment and during treatment I experienced Lyme rage and OCD tendencies, as well as depression, fear and apathy. It’s also so important to consider for post-treatment. Three months prior to being declared in remission by my doctor I was diagnosed with chronic PTSD.

It is because of the dramatic and traumatic nature of Lyme disease treatment that I highly encourage an ongoing nod to your psychological and emotional side. Find a peer mentor. Join Facebook groups. You are going to need support. If you can, find a therapist and set up regular meetings throughout your treatment.

A few insider tips

I see a lot of people battling nausea, especially in the early days while taking doxycycline. I hate feeling nauseous, as do most people I’m sure, so this sticks out for me too. Here are some of the things that saved me: Larabars, Alka-Seltzer Gold, Lemon ginger tea (no sugar added) and apple slices with pure almond butter spread on them. Without these things I would have been miserable.

Make sure you are detoxing enough. As your body kills off the bacteria it leaves behind toxins which cause you to herx. My saving grace was hot Epsom salt baths. I talk about this a lot. Not only will the heat and Epsom salt help pull those toxins out but I also found these baths empowering. I viewed my action of taking baths as the warrior donning his armor and wielding his sword. Instead of being a victim, I was fighting back. I also found them soothing.

Most importantly, listen to your body. You are fighting a major battle so treat yourself with the respect that you deserve. If you need rest, rest. If you feel like you’re reacting too strongly on a certain drug, talk with your doctor. Maybe cut back on the dosage or try something different. My body hated the antibiotic Rifampin so my doctor switched me to something else. I found that my body reacts to medicine immediately and with ferocity so I often took less than what my doctor prescribed. Eventually, she began to cut back on her recommendations for this reason.

In conclusion

Despite my best efforts here to be as all-inclusive as possible, I’m certain I’ve forgotten some things. Also, everyone’s experience is unique, however there are crossovers and norms. Depending on how long you went untreated your journey will be completely different from mine. There will also be weird one-offs, like the day I woke up with a black tongue. I hope you find some solace in reading this and feel seen. Hopefully, you glean some comfort from the unknown.

My heart aches for all of those still in the midst of their battle against this horrendous disease. The vast array of symptoms I was beset with was overwhelming. I’m certain there are days, weeks and months that you feel the same way. Take heart in knowing that you are not alone. And please, reach out if you need answers, confirmation or a shoulder to cry on.