When your Lymie talks about their sickness, they probably talk about it in terms of their “Lyme”. What you may not know is that Lyme is the umbrella that we put a lot of sickness under. Granted, we really do have Lyme, but your Lymie probably has a long list of other things going on. For instance, I call myself a Lymie… but I have a dozen separate bacterial and viral infections that we’ve been trying to eradicate. These other infections are known as “co-infections” and “opportunistic infections”.
“Co-infections” are bacterial diseases that were transmitted to your loved one at the same time they received the Lyme Borreliosis bacteria from the tick. There are over 20 confirmed bacterial co-infections associated with Lyme, some of which have dozens of different strains.
“Opportunistic infections” are diseases that have taken hold because your Lymie is immuno-compromised. Viruses, fungi, parasites, and other bacteria thrive easily in an environment that is weak. These can be just as difficult to treat, or even harder.
Here is a quick look at some of the most common infections your Lymie’s doctor is sorting through.
All of these other infections make treatment much more complicated. Doctors have to know when to hammer away at each infection, and generally, doctors first have to treat the co-infections and opportunistic infections before they can make real headway on the Lyme.
The real kicker is that all of these infections pile on more symptoms, more complications. Let me give you a realistic example of what is really going on when your Lymie loved one tells you they are having a “Lyme flare-up”. This is a good representation of the kinds of things a Lymie might say to another Lymie:
“Well, my CMV and Epstein Barr are high right now, so I had to go back on Famciclovir and Acyclovir… I’m not sure if the fatigue and nausea are from the viruses or from the meds, but I’ve never been so wiped. And my Babesia is really active right now. Even before the labwork proved it, I could feel it. I’m having much higher pain and a constant fever. All the while, the Bart (Bartonella) has transitioned into cyst form. The doxy can’t penetrate that, so might as well go off of it. Man, though, the tachycardia is ever-present, and my blood pressure keeps switching from very high to very low. I’m constantly having to drop to the floor to keep from blacking out. My cardiologist seems baffled by it, which is incredibly frustrating. I’m so confused all the time — thank you, Bart, for taking residence in my brain. I drag myself to the kitchen to eat, and I literally can’t decide what leftovers to pull out. All to say, we’re switching me up from the Doxycycline and Ciproflaxin to Minocycline, Tinidazole, and Rifamin. The switch will cause crazy digestive issues, etc, but it’s worth it if we can gain some ground. I’m exhausted from all of the insurance calls, doctors visits, and trips to the pharmacy. I lay in bed each day willing my food to fly out of the fridge and come to me. So far, no luck. I’d never leave my safe cocoon of a bed if I could get away with it… Just gotta get through today.”
That’s what’s going on in a “Lyme flare-up”… Lots of infections waning and waxing as they decide to rear their ugly heads. It’s always changing. It’s simply easier (and less confusing) to say “Lyme”, rather than list off a bunch of bacteria and viruses with long names.
All this to say, there’s just a whole lot going on for your Lymies. They’ve become experts at rattling off a couple of dozen antibiotics (brand and generic). They know some of their insurance agents by name. They’re not just fighting one tough infection. They’re fighting a dozen!
Their bodies are working over-time, and they are paying attention to all that is happening. They are champs… They are champs who are fighting every day to still have a life. I don’t know how to say this in a way that isn’t corny… So I’m just going to commit. Let’s cheer them on!
If you’re interested in learning more about the bacterial co-infections, check out some of the following research:
- This comprehensive chart will give you a quick look at some of the co-infections and what they do.
- This website (though poorly designed) is the best synopsis for each co-infection out there. Note that the co-infections with multiple strains have a link to their own page.
- This medical journal is a meaty, but interesting read on the most common co-infections.
As always, thank you for reading. Thank you for looking for ways to understand and support the chronically ill people in your lives. This will mean a lot to them. Even if they don’t know that you are searching to understand, they will feel it in their interactions with you. What a beautiful thing you are doing for them. What a beautiful thing you are doing for me. I said earlier that your Lymies are champs. They are, but so are you.