June 20, 2016

The Bigger Picture: Part Two By Jennifer Crystal

June 20, 2016

The Bigger Picture: Part Two By Jennifer Crystal

Taking Care of Our Overall Health Within the Context of Chronic Lyme

In the first section of this series, I cautioned that not every ache and pain is Lyme disease; we must be sure to take care of our overall health, even when we are consumed by tick borne illness. What we also must remember, though, is that when something ailing us isn’t Lyme, it is affected by our tick borne illness, and vice-versa. When you have a chronic illness, that condition must be considered when making all other medical decisions.

Take the common cold. This age-old, mucus-infested ailment is begrudged by all. Whether you have a chronic illness or you’re otherwise the picture of health, getting a cold just plain stinks. But whereas most people can shake that cold in a week, Lymies and people with other ongoing illnesses have a much harder time fighting it off. Basic illnesses are not basic for us; they are possible cause for our underlying conditions to flare, because our immune systems are already compromised.

A Lyme patient can have a cold for a month, which can be difficult for healthy people to understand. Whereas most people’s symptoms gradually improve, a compromised patient may find the mucus growing greener and the cough getting deeper. Before long, the cold has turned in to an upper respiratory infection. And this is where Lymies can get into trouble.

Because most of us are on long term antibiotics, we have to keep those treatments in mind when considering management of an acute infection. This is not a problem when our primary care physicians are Lyme literate. They’ll be sure to put us on an antibiotic in a different family than the ones we’re currently on, for maximum effectiveness. I’ve been on oral antibiotics for years, and have never had a problem clearing up an acute infection with a different antibiotic.

The problem, though, is that it’s not easy to find a Lyme literate primary care doctor. When you’re sniveling with a sinus infection, you want to be in good hands. The last thing you need is someone who doesn’t understand your long term treatment protocol, or, worse, someone who questions why you’re on that protocol at all. It’s hard enough to fight that fight when you’re feeling sick from Lyme; add another infection on top of that, and you’re quickly trampled.

Not only do doctors need to understand how a new antibiotic will work (or not) with your current regimen, but they also need to understand how new treatment might affect your Lyme. Let’s say you didn’t have a cold, but your Lyme doctor suddenly decided to add an antibiotic to your usual cocktail. You might have a Herxheimer reaction; the same could therefore happen when an antibiotic is used to treat an acute infection.

We also need to keep this big picture mindset when going through “basic” medical procedures. Because of my tick borne illnesses, I know that it will take me longer than most people to recover from my wisdom teeth extractions. I also know that spirochetes like to hang out in gums, and that this surgery puts me at risk both for infection and for a Lyme flare up. Luckily, my doctor knows this too, and so she’s put me on a prophylactic antibiotic that works well with my usual treatment protocol and will help protect me through this procedure.

The key is making sure your primary care physician understands tick borne illness, and your management of it, before you get an acute infection. If your primary care doctor doesn’t believe in long term Lyme or doesn’t seem confident in your treatment, find a new doctor. I know that’s much easier said than done. For me, the important thing is not so much that my primary care doctor is Lyme literate (though clearly that’s the ideal), but that she’s willing to learn and willing to talk with my Lyme specialist to discuss treatment plans. I need to her to be willing to talk to me about what works best for me, and not jockey with me for control of my own health. Open-minded doctors are at least a little easier to come by than Lyme literate PCPs.

And, of course, as with your ongoing battle with tick borne illness, you are your best advocate. We patients are the front line of Lyme literacy. We need to understand our own illnesses and medications so that we can readily explain them to doctors. We need to keep tabs on what treatments have been successful for our past acute infections, and speak up when confronted with new ones. We must remember that tick borne illnesses are part of the makeup of our bodies; when acute infection or routine medical procedures strike, we need to keep that big picture in mind, for the sake of our overall health.

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