The symptoms! Everybody wants to talk about the symptoms. I view healing as a rhombicosidodecahedron— a shape with 120 edges. There seem to be endless tools/ sides and alley ways— all need to be used.”Symptom-bonding” is one very small (albeit necessary) part , but if we get stuck there too long then we miss the 119 other aspects of healing. At some point, when I started taking note of the things that zapped my energy vs. the things that gave me energy, I noticed that talking/obsessively thinking about my symptoms was actually a ZAPPER. Trying to “figure it out” made me more sick and more confused. Every little sensation I experienced sent me on a panicked google spree, zapping my energy and ruining my day. Once I learned the hard way, I took a different approach: Instead of googling (and almost never finding anything helpful) I would take a nap, eat some celery, meditate, go to an infrared sauna, laughed out loud at something, or do any number of things that actually took me one step closer to wellness. I stopped talking about my symptoms for the most part, and got busy doing things that brought me joy and wellness, but that doesn’t mean that symptom talk is not a crucial part of the road to wellness. At first, I needed to feel heard, understood, and validated— especially with an illness as elusive as Lyme disease.
I, like many people with Lyme, initially got stuck in symptom research -mania. Of course I did. I was trying desperately to figure out what was happening to me, to gain some sort of control over my body, and I was questioning whether or not I even HAD Lyme disease thanks to the doctors around the world that claim Lyme is not real. I have had doctors look at my POSITIVE Lyme blood tests, hear my symptoms and say, “it’s not real,” or, “I don’t like Igenex so I don’t count them,” or, “Lyme is treated with antibiotics. If you took antibiotics then you have post Lyme disease which isn’t really Lyme disease.” And to all of those MD’s I have said, “So then what do you propose I have?” Only to see raised eyebrows, shrugged shoulders, and a confused response of, “well I don’t know. You’re an interesting case.” COOL. It’s no wonder I questioned myself and my symptoms. It’s only natural to become hyper focused on your “condition” when the world at large seems to resist it. You start googling, looking for validation, looking for a solution and asking any fellow Lyme sufferer—”Did you have joint pain, heart palpitations, trouble breathing, trouble walking, seizures, etc.” Becoming a symptom- fanatic happens in an effort to save our own lives.
At Wellness Companions we work with newly sick people all of the time that want to dive right into symptom-bonding. We get it: the gratification of someone else understanding what you feel, validating what you feel, confirming that you’re not crazy, AND giving you hope that it can/does/will get better is indispensable—especially in the beginning stages of illness. And, yes, it’s extra important when most people in your life probably couldn’t begin to understand what you’re feeling. I got more and more angry the more I tried to describe what I was feeling to others. They didn’t get it, they’ll never get it—how could I expect them to? But I get it and I’m here to tell you: You HAVE the symptoms, you’re not making them up, they are likely Lyme disease symptoms, you can trust yourself, and I suggest you take your power back and get busy doing things and talking about things that actually make you feel better! Trust me, it works.
I’ve decided to list off and describe my main symptoms, list some solutions I found for them, and leave it here for anyone who might need just a little reassurance that what they’re feeling is entirely “normal.” But I have one request: I urge anyone who is chronically ill to shift attention from the symptoms to radical self-care as often as possible. Because I want to see you thrive. And I want to hear your stories about getting well. I am not suffering from many of the below symptoms anymore, but the more well I got, the more I realized I wasn’t making any of it up and the more respect I had for what I went through and how the bacteria ravaged my body. I’d love for this post to be a space where folks can share their symptoms and solutions—feel free to comment below. In the often isolating word of illness, it’s so important to not feel alone.
That “flu” feeling: You know the malaise, the aches, and the sore throat that hit the day before you get the flu? Yeah, I lived with that on and off for a couple of years. I had it early on in my illness, and I kept convincing myself that it was just a very weird cold. I wish I had stopped treating it like a cold and started treating it like Lyme disease. Solutions: REST, Neti pot, infrared sauna.
Extreme fatigue and weakness: Lyme made me hella tired. More tired than I had ever been—more tired than I thought was humanly possible. There were days when I couldn’t hold my head up. There were days where the stairs were too hard. I was too weak. Extraordinarily weak.Driving was scary and I had to pull over more than once to take breaks. Getting dressed was a chore, and I sat down in the shower. My eyes burned, my face hurt. My voice was weak. Cooking for myself was difficult. I was too weak to hold a baby, to carry a grocery bag, or to …smile. Everyday tasks became unreasonably difficult. It’s a very “normal” reaction to Lyme and, yes, I thought I was making it up. Please save yourself from that torture— you’re not making it up. What helped: RESTING, acceptance, prayer, meditation, ozone therapy, IVIG, herbal supplements, BIE, acupuncture, infrared saunas. quality diet.
Insomnia: The Devil’s work. I’d stay awake for 50 hours straight, and when I did sleep, it was rare to get more than 3 hours in a row— I tossed and turned, wept in pain, thrashed out of frustration, and then got up and tried to survive another day. I tried everything: Exercise, no caffeine, massage, meditation, every natural supplement you could imagine, baths, candles, movies, reading, whale fucking music and the list goes on. I tried Trazadone which made me suicidal and Kolonipin which had equally damaging effects.I really am so sorry if you’re suffering through this. It got better for me, and I believe it will get better for you too. What ended up working: Ambien worked OK, Valium was better, and a natural supplement called Tranquil Sleep from Natural Factors, inner-child work, breath work.
Joint pain: It sucks to have arthritic pain. I spent many nights icing my knees and heating my hips. My joint pain moved through my body—it could be there one second and gone the next. It was stabbing and awful. Sometimes, my wrists got it, my fingers, my toes and ankles, but my knees took the hardest hit. I’m sending love to your sweet joints! What helped: curcumin supplements, poke root oil, epsom salt baths, moderate exercise, anti inflammatory diet, TENS machine, acupuncture, ice packs, heating pad.
Myalgia pain/ muscle soreness/ foot soreness: Yes, I was one of the lucky ones who got that all-over pain they talk about. So brutal. My back was indescribably tight at all times— no amount of massage or acupuncture or rolling around on a tennis ball relieved the pain for any significant amount of time. The pain kept me up at night. And my legs felt like I had just done a 30 mile hike every single day. Some things made pain worse especially when herxing. The Cowden Protocol made the muscle pain so much worse that I eventually had to stop it because standing up became way too painful. Stretching and exercise made me hurt more—especially yoga. What helped: anti-inflammatory diet, curcumin, magnesium, infrared, IVIG, Ozone, ice packs, heating pads.
Muscle twitching: Nothing feels like powerlessness more to me than when my muscles twitch uncontrollably. I had it all over my body— my face to my toes. It especially sucks on the face—the eyes. I don’t experience this much anymore. I’ve realized that exercise can set it off. My best solution: Magnesium and/or magnesium with calcium.
Brain fog: This is a sad one. I found myself constantly word-searching, forgetting names for the first time in my life, and walking around in a complete daze. One day, I couldn’t remember how to write out a check. It’s very painful and felt quite literally like I was losing myself, my ability to think. There was a time in my life that I felt very on-point. The brain fog of Lyme made me feel like I was constantly missing the point, the bullseye, just a little OFF and dreamy and tired. It was deeply depressing. What helped: essential oils especially frankincense, Omega 3 and 6, sleep, forgiving myself and trusting it would get better, rest, moderate exercise, meditation.
Heart palpitations: I’ve actually had these for a long time. They got worst with Lyme and scared the shit out of me many nights. What helped: CoQ10, breathing, staying calm.
Breast pain: I was in terrible breast pain every single day for about one year. It hurt to hug, it hurt to lie on my stomach, it all hurt. I’m not sure how this plays into Lyme but for me it came with the illness. Good news: I NEVER experience this one anymore not even much when I’m PMSing. How I fixed it? under wire free bras. That’s it. Or no bras. Let the babies breathe.
Anxiety/ Depression: Read last weeks post for my in-depth experiecne with Lyme depression. My anxiety was just as bad. I will comment on that in the future. Try meditation, supplements like ashwagandha, acupuncture, massage, clean eating, a creative project, gratitude lists, and therapy. If you need extra support from anti-depressants, don’t be ashamed to ask.
Thyroid/hormone dysfunction: Yep, my hair started thinning—quite a lot. I lost weight. I lost my appetite, my periods got much more painful. I lost temperature control in my body, and my circulation was shit. It was very scary. I took naturthroid for a while, but I didn’t love it. A friend introduced me to a supplement called Xenostat that helped me a lot! After I started taking it, my hair started growing again. Also, the progesterone-only “mini pill” or “pop pill” helped my periods and balanced my hormones.
Dry heaving/ nausea: I have done far too much dry heaving over the last couple of years. I have felt extremely nauseous more times than I can count. Super hot. What helped: homemade ginger tea. Add lemon and cayenne for an extra healthy kick. Aloe Juice saves the day—drink it 30 minutes before a meal. Also, try waiting 30 minutes before a meal and one hour after a meal before drinking any fluids. That’s a gem.
Other sensations came and went like intense ear pain (I constantly felt like I had a super painful ear infection.), swollen glands, shortness of breath, and numbness and tingling. Other common symptoms that I’ve discovered from talking to people with Lyme are air hunger, night sweats, dizziness, gastrointestinal dysfunction, bladder pain, seizures, fainting, fever, bells palsy, and headaches—all very common.
Crazy, huh? It’s hard to even remember all of the symptoms because there are so many. But they’re all SO real. How could one disease present with SO many seemingly unrelated symptoms? I don’t know. I don’t question it. I don’t bother. It’s a waste of my time and my time is needed for healing. I just know that the symptoms are 1.) real 2.) treatable and 3.) reversible. I urge you to refer to this list any time you feel alone and misunderstood. I urge you to take note of your pain, welcome it, and then get busy focusing on how to care for yourself. We are so powerless over so much of what happens inside of our body. The best way to heal is to take power where you can get it: self-care, treating the symptoms, focusing on the things that bring you joy. focusing on something like taking a photo, taking a bath, or meditating gave me energy and made me feel powerful!
Feel free to comment here to the symptoms you relate to or to add to the list so that someone else can feel heard. Let’s start the solution revolution.
With fun and love,