I was thinking today about how to start wrapping up this month of posts, and I realized something pretty important--I haven't mentioned what to do when you know you are sick but you are told it isn't Lyme. So I thought today I'd touch on something else you could suggest to your doctor if your Lyme test comes back negative--Co-infections. Other tick borne diseases. The "siblings" of Lyme.
I have a couple co-infections, but the one that I have has given me the most issues, and also the one I hear about most frequently, is Babesia. I have talked about Babesia in a post before, but just quickly since the post was about co-infections in general. But I thought I'd go a little more into Babesia specifically since it's something that might help you get the diagnosis you need if you're struggling.
Babesia, or Babesiosis, is the name for a group of protozoa that infect your red blood cells. (If you are a 90s kid and remember the Zenon movies, I am not talking about the from those when I talk about Protozoa. Though he does pop into my head every time I write it.)
Once the bad guys are in your red blood cells they travel around your body, and they do it pretty quickly. That's something I have discovered is pretty standard with Babesia--nothing stays the same for long, which can both be both a good thing and a bad thing. The good part is that the symptom that is driving you crazy won't stick around too long before it switches to something else. The bad part is that you never know what it's going to attack next.
Babesia, though quick moving, is pretty specific in how it affects you. In my experience, as well as in some things I've read about it, these are the symptoms I have encountered pretty regularly:
1. Heart irregularities/palpitations--This happens when the Babesia gets into your heart muscle and makes it go crazy. It can't be fixed with normal heart meds; they only cover up the symptoms. The Babesia has to be eradicated from the heart muscle all together in order to get rid of the symptoms. And, unfortunately, once it's out of the heart muscle it doesn't mean it's not coming back. This is a tricky and scary symptom.
2. Headaches--Headaches caused by Lyme, Babesia, and other co-infections happen because your brain becomes inflamed and your intracranial pressure increases.
3. Mood instability--Also because your brain becomes inflamed, tick borne diseases cause things such as severe anxiety, depression, confusion, etc. This can make you feel like you're going crazy when, in fact, your brain is being attacked from the inside out.
4. Internal cystitis--This means that you have the symptoms of a urinary tract infection, but nothing is cured by antibiotics. A big issue with this one is that the antibiotics you are given for a UTI can cause your tick diseases to flare up. And if you're continually being treated for a UTI, you are continually firing everything up.
5. Air hunger--This is a scary one too. Air hunger is feeling like you can't get get a full breath. It can feel like your lungs are being squeezed and won't expand all the way, or if can feel like your throat is tight. And sometimes it does both. It can cause a chronic cough. And it can cause panic attacks, which creates a vicious cycle. Air hunger can easily be misdiagnosed as asthma, general shortness of breath, or pneumonia. The treatment for these things can include steroids, which are dangerous for people with Lyme.
If you are experiencing any of these symptoms, and you have previously been told you don't have Lyme, but you know you're sick, ask if you can be tested for Babesia. Before I got my actual Lyme diagnosis, I got a co-infection diagnosis (not Babesia, but another co-infection called Ehrlichia), which then lead my doctors to keep looking for my Lyme.
It's not a sure-fast solution if you're told you don't have Lyme, but it's worth a shot.
Anything is worth a shot when you are dealing with this stuff.
