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.
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.
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:
5ish drops of stevia, depending on tartness of lemon
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.
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.
“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.
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.
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.
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.
Grocery shopping used to be a relatively enjoyable task, at least for me. I was social distancing way before it was a government order. Shopping at our local co-op was one of the few outings I allowed myself. I would spend half an hour or so looking over the organic produce, frozen vegetables, and prepared foods, hoping something I needed was on sale or at least offered at a decent price. After the spread of COVID-19, grocery shopping became a robotic task filled with fear and angst. By my third trip to the co-op (I’m going only once every 7-9 days), I finally got a system down that helps ease some of the anxiety I feel as an immune-compromised shopper.
An old-fashioned paper list is my new best friend. I was using Google Keep on my phone for grocery lists, but not now. I use scrap paper from the piles of junk mail we get and divide my list into sections. Produce, meat, bulk, frozen, canned, and refrigerated are my usual subheadings. Each subheading has its own corresponding list, which helps me get in and out of the store as quickly as possible. No more dawdling and no more browsing, but it’s worth it for a little peace of mind.
Sacrifices for the Sake of the Budget
I normally get my groceries from the co-op and a big-box store. I almost exclusively eat organic food (yes, my grocery bill is super high, but I also literally never go to restuarants or drink alcohol, so it evens out). The co-op often prices the exact same food– same brand, same date, etc.– much higher than the chain store, and while I like to support local, I don’t have unlimited funds to do so.
Now, though, I can’t take the risk of hitting the chain, so I reconfigured my idea of staple foods to my my co-op experience as affordable as possible while still buying things that won’t make my health decline. Potatoes and strawberries are my main sacrifices right now. I simply cannot afford to pay $8 for a small box of organic strawberries that I normally pay much less for at the chain. Same with potatoes. They’re a rare treat now.
Evolution of the Shopping Experience
When all the coronavirus panic began, I wasn’t sure what to do or what to buy. I didn’t want to be a hoarder, but I also didn’t want to have to make unnecessary trips to the store. On my first trip to the co-op, I bought a lot of frozen organic vegetables and canned tuna. On my second trip a week later, I relaxed my concerns a little and focused more on fresh foods, especially those that could be cooked rather than eaten raw. I went for a mixture of sturdier items like carrots and more quick-perish items like chard. The co-op, like all stores, has its share of empty shelves. With a little improvisation, I mostly got what I needed. By my third trip, I really got the system down.
I only go shopping on a weekday morning, but not immediately after the store opens when I suspect there’s a crush of people vying for soap and toilet paper. I go about an hour after the place opens. First and foremost, I make sure I don’t forget my paper list. Next, I take off my wedding ring and watch and leave them safely at home. Then I take my license and credit card out of my wallet and zip them into the waistband pocket of my shorts. I get a paper mask– we still have a few from pre-virus yardwork– and a small bottle of hand sanitizer. Then I try to enjoy the simple act of driving and listening to music. Admittedly, I’m not finding the trip very enjoyable these days.
Once I’m at the store, I park next to a cart return corral as far from the store as possible. Usually no one else parks out there, which adds a little reassurance to my routine. I drive a pickup truck with a camper shell over the bed, and I open the shell and the tailgate before going inside. A tiny bottle of hand sanitizer sits in a corner of the truckbed for when I return with groceries. I zip my key into the pocket with my license and credit card.
The mask goes on when I’m about twenty feet from the entrance to the store and take one last breath of unfiltered fresh air to calm myself down before donning the mask. I remind myself that I’ll see people on every part of the spectrum, from terrified to arrogant, and that their actions have nothing to do with me. Then I grab a cart and sanitize it with the spray that the store provides. Finally, I start shopping from my list.
Nowadays, I’m buying much less frozen and canned food than I was when all this started. I’m still hesitant to buy anything prepared, like my beloved kale salad, but maybe I’ll get back to that one day. Some fresh standbys include: bananas; carrots; onions; lemons; apples; and cabbage. All of those things have relatively long shelf life for organic fresh produce.
Canned standbys include: tuna; salmon; garbanzo beans; and kidney beans. I grab soy milk from the fridge for my wife and Nutpods coffee creamer for me. I get whatever nuts are on sale from the bulk bins– last week it was pecans!– plus split peas and lentils and oatmeal. I buy frozen fruit if it’s on sale. Lately it hasn’t been. I choose whatever is a decent price from the butcher, which nowadays is a mystery until I see what’s in stock. I try to buy things that will go together to make good meals but it doesn’t always work. We’ve definitely eaten some weird but nutritious combinations lately.
Once I pay– the checkout process is always the most tense, since that’s where I encounter the most people and have to use the communal credit card machine– I sanitize my hands before leaving. Then I wheel the car to my truck and put the bags in open bed. I return the cart to the corral next to my parking spot, then sanitize my hands with the sanitizer I leave in the truckbed. I lean over the passenger floorboard of my truck, pop the earpieces loose from my mask and let it fall to the floor, sanitize my hands again. Then I try to relax for the ride home.
Home Sanitizing Station
Once I’m home, there’s one last round of sanitizing before I can chill. This is the reality of social distancing grocery shopping. It doesn’t really end when the social contact ends, because the germs don’t just evaporate. We sanitize everything with either disinfectant spray and wipes or with soap and water. (Yes, I wash our bananas in soap and water.) I strip under the carport and drop my clothes in our washing machine, and then I take a shower while my wife puts away the groceries. Honestly, it’s a draining process, but I think I’d feel a lot worse if I didn’t do my utmost to protect myself, my family, and our community. I’d rather be safe than sorry.
For those of us with chronic illness, the unprecedented outbreak of the coronavirus presents a challenge with an extra layer of fear and concern. My white blood cell count is already low. I’ve been in relative social isolation for two months, way before I knew anything about COVID-19 (coronavirus). Having something new to fear is ramping up both my anxiety and my fear. Neither of those are good for general wellbeing, especially in someone who’s already chronically ill.
Strategies for Sanity for People with Chronic Illness During the Coronavirus Outbreak
I’ve come up with a short list of things that are essential for me during this time of uncertainty and fear. The spread of the coronavirus and the panic that comes along with it is making life difficult for everyone. I hope this list helps you have a better day.
Go outside, especially when you feel extra anxious. Fresh air (away from other people) is a game-changer.
Breathe deeply. This is obvious, but it’s something I forget almost constantly. When I fear extremely worried, I tend to take shallow breaths. Stopping to focus on taking a few deep, slow breaths really does make a positive difference.
Read. Find books that are totally unrelated to current events and news. I read too much news, but at night, I only allow myself to read non-news items. I’m currently reading the entire 1930s Nancy Drew series.
Document your symptoms and include a few sentences about why you think certain things are better or worse. Documentation is valuable for you as a patient and for any caregiver who may need to know what’s going on with you. Medication, food, hydration, and/or supplements can then be adjusted accordingly to help you live a better life.
Drop any social media that’s causing you to feel bad or inflame existing negativity. I don’t get much good from Facebook nowadays, but Instagram is inspirational and socially connective.
Lyme disease sucks. One of the most frustrating things about Lyme disease in general, and perhaps more so for runners, is the conflicting advice offered by everyone from MDs to herbalists to bloggers. If you’re running with Lyme disease, get ready for an onslaught of “STOP IT RIGHT NOW” from the peanut gallery, combined with other, softer voices that tell you to continue to do what you love. I’ve only been diagnosed with Lyme disease for a couple months, and I’ve already heard more advice (welcome and unwelcome) than I can manage.
All I can speak of is my personal experience. One of my worst, strongest symptoms of Lyme disease is cognitive deficiency. On days when I was able (as in, not exhausted or in too much pain), running literally saved my life. Running became my only outlet for relief. The increased circulation, the endorphins, the outdoor air– I’m sure all these things and more contributed to my improved ability to think on the days I ran. Unfortunately, like many people running with Lyme disease, I hit a point where my physical symptoms became too severe to allow me to run. Reduced mileage wasn’t enough.
Taking a Break from Running
I’m currently in the midst of a break from running. It sucks. A lot. But the muscle spasms in my legs– and I mean every damn muscle from ankle to hip– became so severe that I would wake up in the middle of the night unable to stand up. The pain was incredible. Because the lateral thigh muscles spasmed the hardest, my kneecaps began to track laterally and grind against my femurs. I’m not exaggerating when I say the leg pain became some of the worst, possibly the worst pain I’ve ever felt in my life. There was no way I could run anymore when I couldn’t even walk.
As my legs got worse, I increased my chiropractic treatment frequency, my foam-rolling time, and my stretching routine. Nothing helped. Not magnesium supplements, not a super-clean diet, not topical creams, not ice, not heat. You name it, I tried it. My coworker is a highly experienced massage therapist and referred me to an acupuncturist. I was doubtful, not of acupuncture in general, but of anything helping me. Lyme disease also dishes out a hearty dose of depression and anxiety along with cognitive disfunction, so my cynicism was at an all-time high. I made an acupuncture appointment with little hope for anything more than another pile of confusing advice.
During the initial evaluation, the acupuncturist told me she wasn’t going to target Lyme disease, but rather would target other problems to help with overall health. Her approach made sense to me, and she immediately noted a major deficit in my circulation. I had no doubt she was right, since I’d been spasming so much and my hands and feet are always ice-cold. She told me that, at least for a while, running with Lyme disease should not be on my agenda. I’m not a crier, but I came close to sobbing in front of her. Running was my last grasp on sanity, or at least it felt that way at the time.
I made a deal with her to stop running for a week (not that hard, in some ways, since my leg spasms were so severe). She wanted more time, but I only agreed to stop for a week. She explained that acupuncture, like most natural medicine that works with the body, takes time. I was essentially undoing her work if I kept depleting myself by running while in such poor health. I protested a bit more but eventually agreed to work with her twice per week. There was nothing to lose besides a little time and a lot of money. (The money is for a different post, but as anyone with chronic pain or chronic disease knows, it ain’t cheap to survive, let alone thrive.)
Fast forward to three acupuncture treatments later, and I’m doing better. It’s not just acupuncture– I take more supplements than most people will in a lifetime, wear compression garments, and use epsom salts– but I really feel a difference. It’s not fast, definitely not immediate, but something good is happening. My hands aren’t so cold, and my feet are a little less cold. My spasms decreased to the point that last night, for the first time in weeks, I didn’t wake up in agony or use compression garments in the middle of the night.
Of course my goals are to get extremely healthy, feel great, and beat Lyme disease. At this point, though, I want to get back to running. The reality is, I have to stop for a while so I can start again one day soon. I was well enough yesterday to slowly hike for a couple hours at the national seashore near my house, and that’s a major victory. I want so badly to run again, but I’ve had so many setbacks over the past decade that I’m trying to look at this as just one more temporary speed bump.
My next appointment with the acupuncturist is tomorrow and I actually look forward to it. It’s working, and that’s what matters. Anyway, if you’d like more info on herbal aids for the fight with Lyme, I’ve gotten a ton of help from Stephen Buhner’s book, and his website is archived at this link: Buhner Healing Lyme.
I’m sure I’ll run again, and probably sooner than later. Lyme disease is rarely completely curable unless caught immediately, so “running with Lyme disease” is pretty much my new reality. Running with herniated discs, running with dystonia, and running with fibromyalgia have all been my reality, so here’s another one for the list. I’ll get back out there, just not tomorrow. In the meantime, I’m going to walk, hike, and do as much as I can to stay strong and relatively healthy. It’s pretty cool to say I have a good acupuncturist on my side now. I’m cautiously hopeful and wildly dreaming of running again.
I write about serious health stuff a lot, but I also love to talk about lighthearted and upbeat topics. Life’s about balance, right? So, along with my very serious Lyme disease post, I’m also finishing 2019 by writing a quick highlight of three of my favorite pieces of running gear that I acquired this year.
I was ridiculously devastated when Altra decided to discontinue their Intuition, but their new Kayenta helped dry my tears. They’re different from any shoes I’ve ever worn, but once I got over the novelty, I fell in love. They’re lightweight, flexible, (zero-drop like all Altras), and shaped like my feet. I like the colors, too.
I spent 2019 as a first-year ambassador for Team Headsweats, and it was such a cool experience. Not only did I get to connect with other outdoors-loving athletes, but I also got some really awesome gear from Headsweats. It’s hard to pick my favorite, but their Bigfoot collection wins in my book. I usually run in their high-visibility race hats and hike in the Bigfoot trucker. All of them are comfortable, have a black underside to the brim, and help keep sweat and sun out of my eyes.
AfterShokz Titanium Mini
Many years ago, I ran with a tiny iPod shuffle and conventional headphones. After almost getting hit by a car– like, really almost getting hit– I never wore headphones outdoors again. I ran the wire up my abdomen and stuck the earbuds in my bra. Turning the volume all the way up basically turned them into tiny, horrible-quality speakers, and I sometimes got little raw circles on my chest from where the headphones rubbed. And then (cue the movie music for the big reveal) I read about AfterShokz, a company that produces open-ear, bone-conduction headphones for athletes. They’re life-changing. This photo is of them in action, not bouncing, rubbing, or making me deaf while I run across an intersection. The sound quality is excellent, although I refuse to admit to some of the bizarre and embarrassing stuff that’s on my playlist.
Did you get any new favorite running gear this year? If so, I’d love to hear about it. And here’s to the new year!
I don’t think there’s such a thing as a 100% bad year, but 2019 came pretty close. Even as I type that, it doesn’t feel true. There were some absolutely awesome moments, from traveling for book tour events to hiking in gorgeous places to running past a bear in a tree. But overall, my health was terrible this year. Scary terrible. I finally got a definitive diagnosis, and it wasn’t good news: chronic Lyme disease.
In the past, the various diagnoses– cervical dystonia, fibromyalgia, relapsing-remitting multiple sclerosis, and the list goes on– ate away at my body and my mental health. Until this year, nothing attacked my cognition, and I can easily say that losing my ability to think clearly– to reason, to comprehend, to remember simple things– is the most terrifying problem I’ve ever had. The week of Thanksgiving, I finally got some clarity in the form of a doctor who spent nearly two hours with me, one-on-one, without interruption. From passing out in the hall in the middle of the night to getting lost in my own neighborhood to crushing headaches to constant exhaustion and a million other awful symptoms, the answer, for him, was simple. Lyme disease. Chronic Lyme disease, to be exact.
I was too sick for a while to fully comprehend anything, let alone a breakthrough diagnosis. I spent my days trying to make it through work at a job that I’ve done for almost nine years with previous relative ease. I spent my weeks wondering when bloodwork would come back (so. much. bloodwork.), and I spent my nights exhausted but unable to sleep. A depression that I can only describe as a feeling of being possessed took over. Migraine-like headaches left me even more exhausted.
Mast Cell Dysfunction
The first problem the doctor began to work on, almost immediately after our initial few minutes of discussion, was what he said is secondary mast cell dysfunction. I’d never heard of that before, and had no idea it could go hand-in-hand with chronic Lyme disease. I hadn’t even made much of a big deal about the symptoms, since they seemed so inconsequential compared to the other debilitating problems that I had. But when I described sneezing, coughing, gasping, and getting congested after every meal, the doctor paid close attention.
I showed him two videos (chronic pain patients know we need proof because practitioners often doubt what they can’t see) of me literally ingesting nothing but water and going into a massive sneezing fit. He diagnosed mast cell dysfunction and told me to immediately start taking Zyrtec every morning. I’m not a fan of Western medicine unless it’s absolutely necessary. I’ve been burned by side effects many times, but I reluctantly bought some store-brand Zyrtec and popped one before breakfast the next morning. No coughing, no sneezing, and barely a sniffle after I ate. It was just short of miraculous.
The Lyme disease diagnosis was not so simple to handle. I’m learning more than I ever thought there was to know about Lyme disease, especially chronic Lyme disease. There’s a big chunk of practitioners who, for various reasons, fight about it, but I’d rather not go into that much. People will always have big opinions and big mouths, but I prefer to only listen to and respect the ones who deserve it. Dr. Richard Horowitz does a great job of explaining all this, if you’re interested. Look up his book called Why Can’t I Get Better for details. The main thing I know is, I’ve been very, very sick for a long time and now I finally know why.
I’m scared. I’m scared for my present and for my future. I wonder if I’ll ever get full cognitive function back, and the idea that I won’t is haunting. I have a binder dedicated to symptom tracking and Lyme disease information, and I’m beginning to solely focus (as much as possible) on majorly reducing my symptoms. There isn’t a cure, and I’m so NOT ok with that that I’m considering going back to school to become a researcher who works for a cure. In the meantime, I’m starting an herbal regimen (Stephen Buhner’s chronic Lyme disease protocol) and managing minute-to-minute fluctuations in energy, mood, and cognition.
After about a week on some high-quality, Lyme disease-targeting herbs, my energy level increased and I was able to start running again. That was a godsend. Running has long been my sanity-keeper, and the fresh air and trees are the best medicine for everything. I’m already a medical marijuana patient, so I have access to MMJ for sleep, but I also added CBD oil to my regimen. Lyme disease, once it spreads and becomes chronic, can cause an awful condition called Lyme arthritis, so I’m also starting on powdered gelatin. I made Golden Milk for the first time yesterday and am tightening up my diet more than ever. If you haven’t tried Golden Milk, I highly recommend Googling a recipe for it. It’s a warm concoction of anti-inflammatory foods, and while the turmeric can be a little potent for some people, I thought it tasted pretty good.
I started out reading everything and anything I could about chronic Lyme disease. I read studies that showed things like oregano oil and stevia work well to fight the bacteria, and other studies that showed garlic can be helpful. I read and read until knowledge-gathering become too much of an obsession, so now I’m alternating reading Lyme disease-related stuff with fun magazines and running books. Knowledge is power, but it can be oppressive, too.
I go back to the doctor in a few days and we’ll make a plan on how to go forward from here. I don’t know if he’ll want me to start strong, long-term antibiotics or not, and I’m not sure how I feel about that. I’ve talked to so many people who’ve had poor results from antibiotics and/or who had only very short-term success. But I’m sure they work great for some Lyme disease cases, and ultimately I have to decide what’s best for me, not for others.
I’m still spinning from the diagnosis and the fallout– I lived for YEARS with relapsing-remitting MS, except now I know that wasn’t true, and it’s freakin’ bizarre. I have a lot, lot more to say about chronic Lyme disease and how it’s affecting my life, my running, my work, but the brain fog is awful and it makes gathering thoughts quite challenging. For now, I’ll leave you with two of my favorite (so far) resources for chronic Lyme disease patients.
Lyme Disease Books
Stephen Buhner, an herbalist, has done extensive research on Lyme disease. You can buy his books on Amazon and learn a lot from his website. I bought Healing Lyme, and it’s a wonderfully informative, well-researched book. I would LOVE to meet Stephen but I recognize that this is a pipe dream of epic proportions.
Richard Horowitz is a doctor who’s worked extensively with Lyme disease patients. I bought his book Why Can’t I Get Better, and it’s a solid resource for a mixture of Western medicine, anecdotal evidence, real-life examples, and Eastern practices. He seems like the type of compassionate, thorough doctor that most of us would hope and pray would treat us.
It’s not quite Thursday yet, but here’s my TBT to some awesome hiking and trail running this summer. I can’t wait until my iron deficiency clears up and I can hit the trails again! My new Altra Lone Peaks were barely broken in before my ferritin level dropped so low that I couldn’t run, and every time I see them in the closet, they look sad and ready to go. I can definitely relate!
It’s finally cooling down a little here in FL, which means prime trail running weather is almost here. The Florida Trail, which essentially runs from Pensacola Beach to the Everglades, is a great, diverse trail system. My favorite sections to run are through Blackwater State Forest and through the Gulf Islands National Seashore/Ft. Pickens property. I hope I’m well enough to run before November, but if I have to wait, so be it. My Lone Peaks and I will grit our teeth and wait. I’ve been through a lot this year, but I’ve never lost sight of my goals, hopes, and dreams. Onward, friends.
I felt bad for months without answers and had no idea that low ferritin could be the culprit. The first sign or symptom, I think, was when my feet suddenly hurt so bad that I couldn’t walk. I went from comfortably running 12+ miles at a time to being unable to take a single step. The pain in my feet was incredible. A five-week saga involved complete rest, new shoes, custom arch supports, and tons of medical treatments that didn’t work. Then a young chiropractor finally got to what seemed to be the root of the problem.
Near the knee, the sciatic nerve splits into two and becomes the common peroneal nerve and the tibial nerve. Extremely tight calf muscles were compressing the nerves, which in turn sent agony to my feet. The chiropractor used e-stim, heat, and RockBlades on my calves, then adjusted the bones in my ankles. The difference was immediate and shocking and wonderful. I went from no life to an almost normal one, or so it seemed.
But as time passed, my calves stayed tight no matter what, so my feet still hurt almost all day and night. I drank extra water, used a foam roller, a stick roller, and had my colleagues RockBlade my legs, but the pain and tightness always came back quickly. I knew something still wasn’t right, but I was so damn tired of going to doctors and spending time and money that I just decided I might have to manage my calf issues indefinitely without a real answer.
Decreased Exercise Tolerance
That was late spring. As I made my comeback to running and strength training, I never felt right. I was sweating profusely after even short, early-morning runs, my endurance stopped progressing, and I began to feel dead tired after any exercise at all. After so many years of chronic health problems, I wondered if what was happening was a natural progression of the disease process. I also started noticing that I had increasing trouble concentrating, felt exhausted most days, and my usual insomnia was worse than ever.
Things really took a turn for the worse when I drove through eight states to get to Baltimore for a few days of work. What should’ve been a fun, exciting solo trip that involved camping, a super nice hotel, old friends, new friends, and tons of adventure was downright terrifying. The four nights I was in the hotel in Baltimore, I honestly thought I was going to die. I couldn’t sleep at all despite being beyond exhausted. The mental fog was incredible and like nothing I’d ever felt. When I laid down at night, I was so tired and sick that I would tremble hard enough to lift my body off the mattress. I began living on extra coffee and energy drinks and strained to keep up professionally and socially. I had no idea what was happening but was very afraid.
Urgent Care and Primary Doc
I thought I’d start feeling better after I got home, although the justification for that thought was pretty weak and didn’t pan out to be true at all. I continued to get worse and despite HATING going to medical facilities, I went to urgent care one night when I was so lightheaded and wracked with tremors that I thought I might be dying.
My blood pressure was 82/58, then suddenly shot up to 140/92. An EKG showed that my heart was in atrial fibrillation (AFib), and I almost passed out a few times in the exam room. The urgent care doctor wanted me to go to the emergency room, but I refused. After years of dealing with our medical/industrial complex, the last place I want to go is a hospital. I went home and made an appointment with my primary care doctor and crossed my fingers that I’d live long enough to get to the appointment.
I developed all kinds of theories about what was going on, from reactions to supplements to simply, “I’m dying.” My doctor ordered a huge battery of blood tests and said he suspected iron deficiency. He told me to start taking iron pills just in case, and that if the bloodwork results showed I wasn’t anemic, it wouldn’t be a big deal to have been on the pills for a week. I hadn’t eaten red meat in a long, long time and had unpredictable, heavy periods, so his theory seemed plausible. I agreed to the blood draw— my first bloodwork in more than two years (I wasn’t kidding when I say I hate going to medical facilities).
I began taking iron pills every morning and begrudgingly ate beef. I didn’t feel better at all and was too exhausted to run more than a couple miles at a slow pace and with frequent breaks. Eventually, I couldn’t run and could barely even function during day-to-day tasks. My thinking, concentration, and mood got so bad that I felt like I’d had part of my brain removed. Since the doctor ordered such a massive volume of tests, the bloodwork took more than a week to come back. When it finally did, several truths were revealed. I had extremely high testosterone, which could partially account for my months of extreme sweating. My progesterone was rock-bottom, which further signaled major trouble with hormones. My white blood cell count was low as though I were fighting a bad virus, which was unexpected and never fully understood.
And, perhaps most telling for my symptoms, my ferritin level was in the basement. (For those who aren’t sure what a ferritin level is, here’s what Mayo Clinic says about it: “Ferritin is a blood cell protein that contains iron. A ferritin test helps your doctor understand how much iron your body is storing. If a ferritin test reveals that your blood ferritin level is lower than normal, it indicates your body’s iron stores are low and you have iron deficiency.”) So, my doctor’s suspicion about iron-deficiency was well-founded, but there were also other issues to address.
My next doctor’s appointment was a few days after the bloodwork came back, but I saw the results online in my patient portal before the appointment. I understood pretty well what was happening but still had tons of questions. I spent a solid hour making a list (yes, an hour for a list, which is indicative of how bad my cognition got) of questions to ask him during the appointment. Every aspect of my life was affected. I was depressed beyond measure, stupid beyond reason, and exhausted to the point of near death. I hesitate to say I’ve never felt worse, but I think it’s true.
Treatment Plan for Low Ferritin
Based on the bloodwork, my doctor quadrupled my iron pills, added liquid vitamin B to my supplement regimen, and sent me to a compounding pharmacy for a custom concoction of progesterone cream. He also prescribed Tamiflu to knock back any viral infection I might have, and ordered me to stay out of the heat and to not overexert myself at all. His reasons for why my ferritin level was so low were speculative but seemed reasonable— heavy/frequent periods, heavy sweating, long-distance running, and lack of dietary meat. He said heme-iron, the kind that comes from animal products, is the most readily absorbed by the human body, and that at least for a while, I’d need to eat meat again.
We discussed an intravenous iron infusion to raise my low ferritin level. He didn’t want to risk me going to the hospital for the infusion with my health history and low white cell count. I struggled to take a deep breath, struggled to walk to my truck, struggled to concentrate. I knew there could be nasty side effects to taking four iron pills per day, but I also knew I couldn’t keep going on a fake-it-til-you-make-it mentality. The way I felt was affecting every aspect of my life. I’d called in sick a few days at work for the first time in years. I don’t have benefits, so calling in sick means losing significant money, which is pretty much the last thing a person needs when caught up in our broken, profit-mongering medical system.
I asked for a timeline for improvement. My doctor said he hoped I’d start to feel better at the two-week mark, but that the 4x daily iron pills might still take six months to restore me to a healthy ferritin level. Six freakin’ months? I tried to focus on his two weeks comment. Two weeks is a long damn time, but six months sounded like something I couldn’t handle. Running and hiking are my major stress relievers. To not be able to do those things during such a hard time was even more crushing. But I’d gotten to the point of feeling so out of it— totally disconnected from life— that I almost didn’t care.
I’m now on day fourteen of taking iron four times a day. I have no way of knowing if my low ferritin level is rising a little, rising a lot, or staying the same, but I feel different. My next blood draw won’t be for another month unless I get worse. I hope it shows a huge rise by that time. I hope I feel so good by then that I’ll almost forget what I’m fighting. At this point, I do NOT feel good and haven’t noticed nearly as much progress as I thought would happen by now.
The side effects of big doses of iron aren’t hitting me super hard, but my period came early and heavy and it’s possibly undoing a lot of the progress that I’d started to make. Heavy blood loss is one of the worst things for iron deficiency. My coworkers, patients, and family say I look better, and that there’s more color in my face than there had been for months. I’m not quite as stupid or exhausted as I was. The hot flashes are coming a little less often. I’m able to do light strength-training indoors with the AC blasting.
I still have zero heat tolerance, am foggy-brained, and very tired, but everything is a little better. One of the biggest changes is the pain in my feet and legs– it’s almost gone! But do I feel good yet? Definitely not. It’s amazing how long this process takes. Hopefully in a couple days, when my period is gone and I’m at the two-week mark on iron pills, I’ll really start to notice a difference. I miss running and hiking. I miss thinking clearly and I miss being sort of smart, but at least I finally see a tiny pinhole of light at the end of the tunnel. Y’all, don’t be like me. Get your routine bloodwork done and don’t try to hide how bad you feel. It can really suck to get caught up in the medical system, but avoiding it when something’s wrong is dumb. Don’t be me. Don’t be dumb.
This summer has been insanely hot, and the heatwave started way too soon. By the middle of May, most of us in the deep south were avoiding the outdoors after 10 a.m. if we could, not showing our faces outside until nearly sunset. It’s gotten worse, with “real feel” temps around 106 for our new normal. That’s not particularly healthy for anyone, but especially for those of us with underlying health conditions, excessive heat can be dangerous.
I first tried Greater Than Cool on a boiling-hot day in my parents’ backyard. Even in their pool, I couldn’t get comfortable and felt constantly fatigued. I love being outdoors (I should move out of Florida!) and didn’t want to go back inside while everyone else was outside. It seemed like a great opportunity to try Greater Than Cool.
Filling the Wrap with Ice
My parents have an icemaker, and after extracting a few perfectly uniform cubes—which excites me since we don’t have an icemaker and our cubes are randomly sized—I folded them into ice pockets in the Greater Than Cool wrap. The experience was vaguely reminiscent of making a burrito and was quite easy and user-friendly. My left hand was around 50% numb that day thanks to scoliosis and bad cervical spine discs, but I got the wrap full of ice and around my neck without much issue, which tells you it’s reasonably simple even for someone with less than ideal dexterity.
My neck is extremely sensitive to everything. Ever since I royally jacked it up while working in the back of an ambulance when I was an EMT, I’ve dealt with everything from cervical dystonia to herniated discs to hand numbness and, of course, chronic pain. I was a bit concerned about wearing the Greater Than Cool wrap around my neck, but the weight of it, even when full of ice, wasn’t symptom-provoking at all. My neck got damp when I put the ice straight in the wrap, but I didn’t care. I was already sweating anyway, and it’s not like the melting ice poured down or even dripped. It just made me a little damp. If you don’t like that, try using the small plastic bags to house the ice within the wrap.
The fastener is Velcro, so it’s easy to handle and adjust. According to the manufacturer, “the proprietary cotton polyester multi-layered material is engineered to absorb and distribute cool moisture evenly throughout the neck wrap.” The Greater Than Cool wrap is navy blue, so it looks nice enough with just about any outfit (although I’m looking forward to them considering a unicorn design, hint hint y’all!). You can put the ice directly in the wrap or in small plastic bags, or I guess if you wanted to, you could buy and use re-freezable packs. As of this post, the wrap costs $22.99 on Amazon, which isn’t a ton to pay if it allows you to live a more comfortable, full life outdoors.
Does It Work?
Yes! There’s science behind “central cooling,” which was a term I learned when training at a firehouse in the Florida summer. Since so many of us had overheating issues, our chief drilled the basics of central cooling into us. Essentially, he told us, putting icepacks over arteries is a great way to cool the human body. Greater Than Cool circles around the neck and comes into contact with a couple of major arteries, and I could really feel a difference in my whole-body comfort while wearing it.
The wrap is unlikely to help with major heat illness like heatstroke, but it might help you avoid getting that sick. I was able to stay in the backyard with my dogs and family while wearing the wrap, when otherwise I’d have been forced to go back inside. As my ice melted—which didn’t happen as quick as I thought it would—I simply went back inside for a minute and got new cubes. The wrap could work even if you’re not home, as long as you have access to a few ice cubes, like from a restaurant or a hotel or a convenience store. I filled up all the ice pockets, but if you just want to cool down a little, you can add less.
If you spend time in the heat and need a little help staying cool, definitely give Greater Than Cool a try. They’re a small, family-owned business born from the need to help loved ones participate more fully in life without overheating. They’ll unveil new options soon, like color choices and multiple sizes, but their basic product (blue, one size fits most) is great! Click here to check them out on Amazon.
Disclaimer: I received a Greater Than Cool wrap in exchange for an honest review. I’d tell you if it sucks, but it doesn’t! It’s a solid product and a good choice if you deal with heat intolerance.