Lyme Disease and Hydration

dehydration
This is the typical end of a three-mile run. Soaked in sweat, bottle empty, way too hot, but not totally dying.

Part of the package I was given with Lyme disease and babesia was intolerance to heat. I have an electrolyte disorder, so not only am I heat intolerant, but I lose a lot more electrolytes than most people. Babesia, a tick-borne pathogen that infects red blood cells, causes night sweats. Sweating all day and night is a recipe for extreme dehydration. If you don’t have proper hydration, the way I understand it, you’re going to have an even harder time dealing with Lyme disease.

Hydration Tablets and Caplets and Lyme Disease

My doctor ordered me to use Nuun tablets all day. They’ve helped tremendously and happen to taste really good. (My favorite flavor at the moment is Strawberry Lemonade.) I also take Hammer electrolyte caplets before workouts, even if the planned workout is relatively light. My blood pressure isn’t as dangerously low anymore and I don’t come close to passing out multiple times throughout the day, so I know the Nuun and Hammer are working.

hydration and lyme disease
My current favorite flavor of Nuun is Strawberry Lemonade, but Watermelon is a close second.

There’s an abundance of scientific and anecdotal data available about Lyme disease and hydration. I asked my doctor how much water he wants me to drink per day and he said he didn’t have a set amount. He wants my pee very light yellow whether that takes two liters, three liters, or a lot more fluid. I mostly follow the Buhner Protocol, but the Cowden Protocol says it won’t work unless you drink a minimum of three liters of water daily. I don’t count any foods as hydrating even though they are. The small amount of water in apples, oranges, and my other favorites is pretty negligable in the scheme of things. I measure a liter of water every morning in a glass bottle and then try to have it gone (with Nuun tablets) by 10 a.m. I gauge my fluid intake for the rest of the day based on how I feel and what my activity level is. And, of course, the color of my pee.

Easy Recipe

Nutramedix stevia is a product I recently found after my doctor put me on a few Nutramedix tinctures for Lyme disease. Nutramedix is the brand name associated with the Cowden Protocol. Their stevia is by far the best I’ve tasted. A few drops go a long way and taste really good. My favorite, simple hydration recipe that I invented (no claims of chef skills here!) is this:

  • 1 liter of water
  • 1 tablet of Nuun Strawberry Lemonade
  • Juice of 1/2 an organic lemon, pulp included
  • 5ish drops of stevia, depending on tartness of lemon

Water Bottles

I hate carrying bottles when I run but it’s a necessity. Hydration vests generally bother my neck. I want to try a nice Salomon vest but can’t justify the price. I often plan routes around a place I can safely hide a full bottle, although that strategy isn’t foolproof. Not long ago, a bottle of Nuun was stolen when I was mid-run. Yes, during a pandemic, someone stole my bottle. I’m not sure what to make of that. Anyway, I can’t stand to carry more than about 10 ounces at a time because of the weight, so if I plan to run longer than 4 miles, I make sure there’s a bigger bottle accessible to me. Sometimes that means looping back to my house to drink from a cooler in the driveway. Other times it means circling back to my truck to grab some cold Nuun. Either way, the trackback is not an option. It’s a necessity.

Pruned Fingers

My fingers are still pruned most nights. Not the most scientific measure of hydration and its effects on Lyme disease, I know, but valid to me. It’s a battle to get hydration right, especially with babesia. I go to bed cold or comfortable. By midnight, I’m burning up hot and soaked in sweat. But hey, writing this just gave me an idea. Maybe I’ll pop a Hammer tablet before bed tonight and see if it helps. Might as well.

Fibromyalgia and Lyme Disease

running with lyme disease
Calling it quits early on a workout if it’s too hot outside is key to managing fibromyalgia, Lyme disease, and babesia. I’m not good at listening to my body. It’s definitely a learned skill.

“Do you still have fibromyalgia now that you have Lyme disease?” This is a question I get more often than I care to acknowledge. The intention behind the inquiry is often quite different from person to person. While I recognize the validity of the question, it bothers me. It’s in the best interest of chronically ill people to work together to support each other, and sometimes questioning, intentionally or not, can come across as a micro-aggression. Diagnoses of Fibromyalgia and Lyme disease often go hand in hand, and the answer to the question is more complicated than a simple yes. Here’s the short summary– getting diagnosed with Lyme disease did not erase my diagnosis of fibromyalgia. Things just make more sense now.

Which Came First?

Fibromyalgia is often diagnosed when nothing else seems to fit. I know because I’ve been down that road. Unexplained pain, sensitivities, exhaustion, fatigue– you name it, and chances are if a blood test rules out (or misses) other diagnoses, fibromyalgia comes into play. I’ve done a ton of reading lately and learned that many, many patients with late-diagnosed Lyme disease were diagnosed with fibromyalgia years before Lyme. This doesn’t mean that they don’t have fibromyalgia. It simply opens the door for a conversation about co-infections, cause and effect, chicken-and-egg theories, and, occasionally, clarity.

I’m not educated enough to form an opinion about whether Lyme disease is a cause of fibromyalgia. But I do know that they share a lot of commonalities. The overlaps, for me, are undeniable. Exaggerated pain responses, overactive nerves (especially in my right foot), crippling exhaustion, brain fog, fatigue…the list goes on and on.

I was first diagnosed with fibromyalgia as a young athlete who was living in otherwise unexplained misery. It’s worth noting that no one bothered to test me for Lyme disease or any other tick-borne infections until many years later. But does that change anything? For me, not really. Lyme disease can’t be carbon-dated. There’s no way to know if a Lyme infection was present in my body all those years ago when I was diagnosed with fibromyalgia. It’s possible that I got Lyme several years after fibromyalgia. It’s also possible that Lyme has been with me far longer than I can imagine.

Lifestyle Management

The main thing for me for both fibromyalgia and Lyme disease is lifestyle modification. Everything I eat, every action I take, every decision I make is colored by being someone with chronic illness. I eliminated gluten, dairy, most processed foods, refined sugar, and industrial seed oils from my diet a long time ago. The exception there is sugar, because sometimes exercise and exertion levels demand a quick shot of energy. But those times are quite rare for me. I made those dietary changes after I was diagnosed with fibromyalgia. All I had to do was tighten them up a little more once I talked with a Lyme specialist.

Exercise is a huge component in the management of chronic illness. I tend to err on the side of doing too much. That was certainly true long before Lyme disease was mentioned in my medical history. (Hell, this website is called Fibromyalgia Athlete for a reason.) The only way I’ve seriously modified my exercise since learning I have Lyme is to be much more careful when exercising in the heat. Babesia, a tick-borne parasite, came along for the ride with my Lyme infection. It’s largely responsible for my heat intolerance and electrolyte imbalance issues. Nowadays, I’m much more careful about spending time in the heat.

Insomnia

Sleep is a major deal for me, or, more accurately, insomnia is a major deal for me. I didn’t sleep more than a few hours a night for over a decade, most of those years falling under “the fibromyalgia years.” Insomnia is also extremely common in Lyme disease patients. So I either have a double dose of insomnia-inducing issues or one of them is the primary contributor. At this point, I don’t care which is the culprit.

Chronic illness, whether fibromyalgia or Lyme disease, will only get worse without adequate sleep. Addressing the problem rather than fixating on the possible cause is much more worth my time. In my case, for now, tweaking supplements has made a huge difference. I largely follow the Buhner Protocol and swear by Stephen Buhner’s book Healing Lyme. Good-quality hemp oil has also helped manage my chronic pain and overactive nerves. My favorite is Runners High Herbals. I’m still not sleeping enough, but for someone with longstanding fibromyalgia, Lyme disease, and babesia, I’m doing pretty damn good compared to how my sleep used to be.

Testing for Fibromyalgia and Lyme Disease

The biggest thing, I think, that really separates fibromyalgia from Lyme disease is the ability to diagnose with a blood test. The blood tests, especially those covered by insurance, are notoriously inaccurate from what I’ve read, but they do exist. As of my last reading and search, there’s no definitive blood test to diagnose fibromyalgia. The caveat there is, a lot of physcians understand that Lyme disease is every bit as much a clinical diagnosis as fibromyalgia is, and false negatives on blood tests can happen for lots of reasons.

My personal example of test failure is from my first babesia blood test. The doctor–someone I don’t use anymore–ordered a test that looked for antibodies. The Lyme specialist later explained to me that that test was pointless. Because with an IgM of 27, there was no way my body could’ve made enough antibodies to show up on the babesia test. His theory was immediatley proven correct when he started me on babesia meds and I felt and saw immediate results. Since there isn’t a blood test for fibromyalgia, I didn’t have to go through any ups and downs with false positives or negatives.

Every case of fibromyalgia and every case of Lyme disease is different. No disease process looks exactly the same from one person to another. I think it’s important, especially if fibromyalgia treatments aren’t working for you, that you get tested for Lyme disease if you think there’s a shadow of a chance you could have it. The thinking on Lyme varies greatly from doctor to doctor, but that’s also true of fibromyalgia.

Books

As with anything, keep looking until you find a practitioner who respects you and treats you as a person and not just a number. A good place to start for more reading about both fibromyalgia and Lyme disease is in books. Two of my favorites are Healing Lyme by Stephen Buhner and Why Can’t I Get Better by Richard Horowitz. Whether you have fibromyalgia or Lyme disease or both, the important thing is getting the help you need to live the life you want. Both fibromyalgia and Lyme disease can be lifelong journeys. Expanding your knowledge base and finding competent practitioners can go a long way toward a better life.