I’m entering my 5th month of treatment for Lyme disease (suspected 10th month of infection), and I’m having a rare “good week” when I feel normal and my cognitive function seems to be running at about 90%. So I’m going to start talking about it. It needs to be talked about, because once you get it, it’s a very lonely road that you never knew existed.
For starters, every post about Lyme requires a disclaimer: every source of information has stake in the Lyme testing and cure; everyone’s course of treatment is different; doctors tend to stay quiet about their experiences because insurance companies like to sue them for being too expensive; I’m posting links that provide information that is widely discussed in Lyme circles, for your education. These are not proper citations, this is not medical advice, and sadly, I can’t even tell you if it’s true or not (more on that later). So use external links for informational purposes only.
I grew up in Pennsylvania. We’ve all heard of Lyme and “know someone who had it.” What can you tell me about it? It comes from tick bites, you get a big red bullseye rash, the doctor knows what it is and gives you antibiotics, and you’re all better. Sometimes if you don’t act quickly enough it can take longer antibiotics. But a month, and you’re done. Only the elderly and sickly are otherwise affected. So I took the basic precautions. I sprayed with DEET before hiking… sometimes. I checked my skin and scalp. But who actually walks around with their pants tucked into their socks? It’s not THAT serious!
Except now I know, unfortunately by experience, that there’s a dark underbelly to Lyme, and it can be life-shattering.
Lyme is caused by a bacteria transmitted through the bite of a tick. It’s a spirochete – a corkscrew-shaped bacterium named Borrelia burgdorferi (Bb). That handy corkscrew design allows it to drill in and affect ANY and EVERY part of the body – muscles and joints, heart, nervous system, brain, eyes, ears, teeth, feet and everything in between. This causes a huge range of symptoms which, because of their seeming disconnectedness, results in a wide range of diagnoses and treatments that can cost thousands of dollars and not help. But wait! It gets better. Bb can shape-shift, like a sci-fi stealth villain and resist treatment. It can lose its cell wall (so antibodies can't detect it), or hide in an antibiotic-resistant wall of biofilm that will make you think you’re cured, only to burst forth at any moment and attack you with debilitating symptoms…
The typical signs of Lyme are the bullseye rash (which CDC claims affects 70-80% of victims, but other estimates are as low as 20-40%), “flu-like symptoms” (which is like, everything), muscle and joint pain, weakness, fatigue, inflammation, fever, and headache. But it’s those symptoms in the extreme, and much more. I didn’t just wake up feeling like I had the flu. I felt crappy, but the most distinct moment for me was being in the middle of playing the piano and very suddenly feeling like my arms were full of lead. One note, I’m fine, the next, I feel like I can’t lift my arms. Then I had to go to work, where for months I’d been lifting, dropping, sorting boxes, getting stronger, and suddenly it was the hardest job in the world. I was slow, everything was too heavy. Then came the migrating back-ache (one day it was my lower back, then my shoulders, then the middle, then the back, then my neck), the “tennis elbow” from simply using an armrest while sitting… and then the entire lower-extremity and butt numbing from the simple act of sitting, not being able to do my yoga stretches (that used to help my back, but not anymore) because of knee pain, insomnia despite being exhausted, and previously successfully treating adrenal fatigue (I was sleeping better than I had in years, then Lyme cork-screwed it all up), drenching night sweats while shivering with chills, freezing hands and feet, anxiety attacks, incessant crying (literally, days of crying), wild mood swings, that silly feeling of walking into a room and not remembering what you came in for EVERY DAY, being unable to say words, losing my train of thought while speaking, reading and not making any sense of the words (summe cum laude graduate here), gaining 10 lbs of fat despite eating healthier than ever and going to the gym (before I was so sick I had to quit), my thyroid going nuts, despite successful previous treatment, vertigo, more vertigo, and nauseating vertigo, itching and crawling sensations, paper-cut pain where nothing was there, awful pain in my hip (where I’ve never felt pain like that before), blurry vision, sinus headaches, digestion problems, loss of appetite, food sensitivities, stabbing pain behind my eyes, numbness in my head, stiff muscles, sore lymph nodes… and that’s when I remembered finding some ticks on me after hiking, and got treatment. After treatment, which the CDC and insurance company says was enough, many of those symptoms came back, plus asthma-like attacks (or what I imagine they are like – I don’t have asthma; it’s known as “air hunger” and the feeling of not being able to breathe or get enough oxygen), chest pressure and pain when breathing, gum recession, dental sensitivity, random unending muscle twitches, heart palpitations, inability to sleep because of the jarring sensation of my own heartbeat, temple headaches, TMJ, then losing that 10 lbs and more despite getting almost no exercise whatsover. And then widespread yeast infections from the antibiotics and all the awful symptoms that come with that. So, in case you didn’t infer from that list, being dizzy and unable to drive, not being able to stop crying when someone asks me questions, unable to accurately absorb and relay information, unable to stand OR sit for more than 10 minutes, and unable to lift things… I couldn’t work. I had to quit my job because we moved (how I survived an out-of-state move in this mess is a miracle of God and a miracle of marriage), but I haven’t been able to look for a job since. I just can’t be relied upon to show up or do my work properly.
3. It’s not just Lyme.
When a tick bites you, it doesn’t just inject Bb that causes Lyme. It often gives you more bacteria, fungi, viruses and parasites. You’ve heard of Lyme, but have you heard of Babesia, Bartonella, Ehrlichia, or Tularemia? I hadn’t. These are called co-infections. They cause much of the same symptoms as Lyme, but since they have different causes, they require different treatments. And this makes up the cocktail of medications many Lyme patients have to try for months or years. The problem with these infections, besides being deadly to your immune system, is that, like Lyme, testing is inaccurate and inconclusive. A single blood or urine sample cannot always identify the infections that are hiding in parts of your body. I also have Babesia, a protozoan parasite that infects red blood cells, and Bartonella, which infects the blood vessels. Because the tests are so unreliable, these diagnoses are based on symptoms and can only be treated with trial and error.
4. My disease doesn’t exist.
According to half the doctors and researchers in the world – the half that the government and insurance companies agree with – I’m making it up. My blood tested positive for an immune reaction to certain proteins of the Lyme bacteria… but not positive ENOUGH. It’s a cry for attention, an excuse not to work, and all in my head. How I wish that were true – my insurance covers psychological help; Lyme is isolating (would you want to hang out with the person with the above symptoms?), and I am feeling like an incredible failure as a wife and as a human being. I’m bored to tears of not being able to work. Imagine my glorious life if all I needed was to “snap out of it.” I’d do it in an arrhythmic heartbeat if I could.
5. It’s politically controversial.
Yes, a disease – that is estimated to affect over 300,000 Americans per year (not to mention the rest of the world) has a name, has a spirochete, has a test, and has a treatment – is one big conflict of interest and has ignited a war among scientists, doctors, insurance companies, and government agencies. Each side says the other just wants to get rich. The insurance companies are inclined to support research and donate to members who deny the existence of persistent or chronic Lyme and Co. It’s too expensive to pay for years of antibiotics, tests, and alternative treatments for antibiotic-resistant forms. Doctors who use extreme measures (IV antibiotics, long-term large doses, therapies, etc) are being sued by insurance companies, and leaving their patients, many of whom are only alive because of them, without hope. As much as the nation rages over pre-existing conditions and birth control, swine flu and Zika, you’d think Lyme would be a bigger deal. Because…
6. It tears your life apart.
You can’t work or study under these conditions; if you manage to hang on, you’re nowhere near the top of your game. You can’t nurture relationships. You’re a drag to your social circle so you just butt out. You’re afraid of grass. You’re afraid of traveling. And you’re an absolute nightmare to live with. Kids are a pain in their parents’ rear. Parents are neglecting their children. Wives and husbands are reduced to raging lunatics. All this stuff I’ve been through enumerated above is me being the lucky one. I don’t have to work (we’ll see how long I can get my student loan deferred), and I didn’t have a career to lose. I have the single most patient husband in the entire universe. I don’t have kids to harm. I’m not paying tuition on a wasted semester. I didn’t go through with the notion of killing myself (that popped up more than I care to admit). Many others have lost it all because of Lyme and Co.
So that’s what I’m dealing with. And here’s what I want YOU to know in light of it:
1. I hate me too.
I’m a party pooper, I’m anti-social, I don’t listen, I don’t remember, I’m offended, I’m offensive, I’m a failure, I’m useless, I’m a whiner, I’m weak, I’m a bore. Don’t take offense at what I say to you in these times. I understand if you distance yourself, but if you’re up to it, I really do appreciate invitations and company. Sometimes I feel almost normal. I “don’t look sick” because if you’re seeing me, it’s a good day. On those days I soak up as much as I can, so please don’t stop reaching out. Even if I refuse every time. And likewise, don’t think I hold a grudge against you if we’ve lost touch. I store my hope for a future where we all start over.
2. I desperately want to be healthy.
Because of the puzzling nature of Lyme and Co. there’s a multitude of treatments available, and everyone has a different story. Doctors are quacks, go naturopathic. Naturopaths are quacks, see a doctor. Don’t spend money on testing. You have to get tested or you’re guessing and ruining your body. You need antibiotics. You need to go herbal. Coffee enemas will save your life. Don’t touch anything down there, candida will rip you open. I HAVE NO FREAKING CLUE what treatment option is best for me, and whichever one I choose, I’ve got 3 doctors raising an eyebrow. I go forward with caution every step of the way. But each of those steps has a month or two in between when I am desperately looking for possibilities. I can’t prescribe myself medication, and I can’t drop $800 on a questionable herbal protocol, but the one thing I CAN do for myself is be as healthy as I possibly can. No matter what the treatment, or even diagnosis, I need a strong immune system. And the consensus on all things nutritional is that processed, packaged, nutrient-stripped and fortified food is BAD. I CAN go to the grocery store or market and buy fresh fruits and veg. I CAN buy pasture-raised meat and dairy from a local farmer. I CAN stop eating at restaurants because they put too much sugar and salt and franken-food in their menu (and soybean oil, aka vegetable oil, aka Crisco, aka margarine makes me sick in my stomach for hours… and it’s in EVERYTHING). I CAN cook for myself (most days) and make sure I’m getting maximum nutrition and minimum junk filler. So please don’t judge my jump onto the gluten-free/Paleo/GAPS bandwagon. Inflammation is my biggest pain right now, and I will do anything within my power to reduce it nutritionally (thus the shunning of gluten, dairy, and sugar). And if there’s any chance that commercial soap, shampoo, lotions, toothpaste and deodorant are messing with my hormones, I’m willing to go homemade and organic. I don’t mean to be a chemical alarmist, but my life is pretty alarming, and I will do whatever it takes.
3. I don’t want you to ever have to go through this.
If I had known the mess I’d be in, I’d have spent the $14 on a bottle of Permethrin (military-grade insecticide) and dowsed all my hiking clothes long ago. I’d have worn the silly hat and sweated my way across the mountains in long sleeves. WHEN I am well and return to the nature I love so much, I’m gonna be the biggest pain in your butt about being protected. I’m gonna lecture you about shorts and sandals and I’m gonna nag you incessantly to check your skin and your scalp. Also, part of prevention is health. The healthier you are, the better you can fight this, and any other ailment that can befall you. I believe the Standard American Diet, and the sugar that plagues it, is a poison of the worst degree. I’m sorry if I rant against your soda or donuts or pop-tarts, but they (literally) make me sick, and I believe they make you sick too. On my good days, I feel SO GOOD, I’m eating SO WELL, and I’m losing weight again because I’m eating REAL FOOD. When you find something good, you wanna tell the world. People, vegetables roasted in coconut oil are something good. Amazingly good.
4. I can be melodramatic.
Part of it is Lyme and Co. messing with my brain, keeping me up in tears, fearing my parasites are going to give me a heart attack… and part of it is the conflicting message of even the Lyme advocates. We all want so much to create AWARENESS of the serious and debilitating nature of this disease so that you do more to prevent it, so that the government and medical community take it more seriously. To that end, the dot-org-ers like to share heartbreaking information – another person has died of Lyme; a young life has been ruined by Lyme; a world-class athlete has been bed-ridden by Lyme; the brightest young scholor/beauty queen/entrepreneur has been torn apart by Lyme. And so many people are searching for information and telling their stories of what didn’t work and how long they’ve suffered. It’s scary. And not often enough do I search out the success stories. They don’t come to the forefront. I think part of the reason is that when you’re cured, you charge forward with your new life and never want to look back. It’s a miserable past to have. So...
5. My aim is hope.
Despite the outcome. At first, I wanted to make a success story to inspire others. But as this journey drags on, I realize I need to proclaim joy in the process. No matter how painful, no matter the ending, I want to encourage anyone going through a devastating chronic illness to find any joy left in life and cling to it with every fiber of your being.
The world is your oyster. Find every pearl.
Thanks for sticking around.