First off, here's a weighted blanket of a virtual hug. Because I know what you or someone you care for has been through with this unforgiving illness, and I'm here to make living a little easier...
May is Lyme Awareness Month, so I wanted supply you with 25 steps to guide your experience with persistent tick-borne illnesses. To summarize mine, I contracted infections from three tick bites from 2011-2017. During that time, lucky me got Lyme disease and multiple co-infections after being bitten in an endemic area. I was also gifted a bull's eye rash (this is actually considered somewhat of a blessing in the Lyme community). Finally, I reached full remission in 2022 after experiencing many symptoms and treatments, in and out of the book.
No matter where you are in your experience, this list might feel resonant. Hopefully it's helpful to some.
Tips for Living with & Treating Tick-Borne Diseases
1. Don't knock a therapeutic treatment 'til you've tried it. Dr. Rawls created this phenomenal chart that compares different TBD treatments by efficacy, safety and cost. He even includes some that aren't even FDA approved and yet many TBD patients swear by them. I suggest you weigh the pros and cons personally and stay open to eccentric treatments that wouldn't normally be on your radar.
2. Make your treatment regime as gentle and pleasurable as possible. You'll likely be in it for the long haul, especially if you were bitten over 6 months ago. By adopting the mentality of nuking the bugs, you'll also hurt yourself more than it's worth. Remember that two steps forward and one back is progress and that a snail's pace is wise. With that in mind...
3. Vet practitioners thoroughly. Find them on the Lyme literate directories or join support groups and go by word-of-mouth testimonials. Remember that Lyme treatment is very profitable for many practitioners, so make sure the one(s) you choose have integrity and a proven track record.
4. If a treatment protocol is expensive, consider why. Is this health professional or organisation transparent? Do they show sensitivity to your unique situation? This brings me to...
5. Trust your gut, even if it's dysfunctional. In the Lyme world, what works for one person doesn't work for another. If you're not resonating with something, you don't need to have a reason, just put up your healthy boundaries and walk. Aim to surround yourself with a care tream that respects your needs and strengthens your self-agency.
6. Find your friend group and support team. It's an unfair world: especially for Lyme patients. Ableism and isolation can be more harmful than the disease at time. I found my buddies via Generation Lyme and my local Lyme support group through CanLyme.
7. Familiarize yourself with disability justice. Find solidarity with disabled, sick and mad folks. They are your people, because your life will likely not look the same as it did before you were ill, even if you reach remission. Even if your body completely heals, your experience will leave you changed, and you don't need me to tell you that! It's likely that your friends and family won't understand your experience as well as you'd like, so disability justice can give you the language and community to self-advocate.
8. Learn about herbs. Become a novice herbalist. Grow some herbs in containers, indoors or outside. Develop a daily herbal practice that lights you up and switch to another when it gets tiresome. Trust me when I say that you'll find this empowering.
9. Make your mental and emotional health the #1 priority. Your illness is 100% not in your head. However, many doctors unfortunately don't acknowledge the nuances of chronic illness and its effects on mental health. You need to nurture yourself everyday, mentally, emotionally, socially, and probably spiritually in order to pull through this without losing it. If you've always put yourself last and even been a doormat, make self-nurture your top priority and find people who applaud you for this.
10. Find a way to move, daily. Even if it's wiggling your body like a worm. I still have trouble with cardio because of POTS and compromised immunity. However, I like to use 2lbs weights at during my mini strength training routine regularly. I spread gentle stretching and strength exercises throughout my day in little doses. This includes bouncing on the mini trampoline and qigong, which I loooove. I also started dancing around my house, especially during quarantine. It felt awkward at first and then became liberating and soul-nourishing.
11. Don't underestimate the power of your lymph. Find a way to support your lymph glands: Every. Single. Day. You can look for a local lymphatic drainage specialist, dry brush, bounce on a mini-tramp, or buy the phenomenal lymph homeopathic formula in my recs at the bottom of this article. Honestly, it's unreal.
12. Self-regulate your emotions. Get into meditation or even breathwork to help you do that. You can also use the Muse device or the Emotional Freedom Technique, which is simple and impactful. I've added links to these in the Recs section.
13. Lean on traditional Chinese medicine and acupuncture to nourish your body and brain deeply, boost your immune system and improve blood and energy circulation.
14. Diet restrictions are hard but generally necessary for long periods. Give yourself grace and literally trust your gut, as well as the gut-brain axis, over any test or professional.
15. Super-hydrate. Try drinking electrolyte water and/or mineral rich herbal teas every day, with herbs like nettle, dandelion, horsetail and red clover.
16. Do allergy testing every 6 months to a year, depending on your symptoms. See a certified biofeedback practitioner or try electrodermal screening. Biofeedback devices have lots of names but a popular kind is called bioresonance. You could also try a live blood analysis for similar purposes.
17. Rely on disability aids and devices. Mine were the Sensate vagus nerve stimulator, the NeoRhythm PEMF headband, and my Jala Neti pot. Yours might be Netflix or a wheelchair.
18. Try oil pulling daily. You can use coconut or sesame oil, gargling with saltwater after swishing the oil for 5-20 minutes and spitting out.
19. Don't overburden your system with supplements. I learned later that fewer supplements, sometimes at higher doses, worked better -- for me. This was partly because I could track the cause and effect of what I was putting into my body more easily.
20. Don't neglect your liver. At the very least, drink lemon water, or better yet, lemon/cayenne/maple syrup/salt water for 1-3 weeks every 1-4 months. Use a straw to protect your enamel!
21. Find a LL psychotherapist and/or bodyworker. You can check out FB groups or show up to a Lyme support group for recommendations.
22. Learn how to advocate for yourself, your body and your health. Somewhere down the line you will be called some version of crazy, whether you have mental health symptoms or not. Understand the limitations of the industrial medical system in treating you, especially as a Lyme patient, and learn to work the system.
23. Compare affordability, efficacy and convenience of different treatment methods you're pursuing. Dr Rawls has done this in his book and in recorded webinars.
24. Consider going out of your home country for quality care. Many people visit centres in Germany or Mexico and some could share their experience with you firsthand.
25. Join the FB support groups to get info and recs; follow chronically ill folks on IG and TikTok. Keep healthy boundaries with the FB groups so they don't drain your energy and know that every person's roadmap to stability/health/joy/peace looks different. Balance and perspective are also important!
My Recs
Lymphdiaral - homeopathic drops and cream to help with lymphatic drainage
Spilanthes tincture - for a variety of dental issues
Sensate device - for vagus nerve stimulation
NeoRhythm - an affordable PEMF headband that you can use over your head, legs, arms and shoulders as well as head, for pain relief and better sleep
Nutribiotic GSE - I put this extract into my hand soap and cleaning products to reduce leftover mold spores in my home after remediating it (some folks take it internally but I find it too intense)
Amber tick collars - a natural tick repellant for your pets (and to keep you safe in your home!)
Red Kite meditations - meditations made for late-stage neurological Lyme disease
Jala Neti pot - To relieve any pain or congestion in the head region
Avulux glasses - for photosensitivity and migraine relief
Liquid Light - a natural way to remineralize and detoxify your body with fulvic acid
10 Principles of Disability Justice - by Sins Invalid
Generation Lyme - great support groups for the Lyme community and its allies
Muse - a biofeedback, brain-sensing headband for sleep and meditation
Unlocking Lyme - a free guide to tick-borne illness by Dr. Rawls
A weighted blanket - pick what calls to you
Heating pad - I live on this one
Tapping Solution - a free app to help you with pain relief, sleep and emotional regulation
Lyme Madness - a psychologist's experience caring for her son with persistent tick-borne diseases
Due app - an effective memory aid for pill reminders and anything else!
Nuun electrolytes - some have stevia in case you're avoiding cane sugar
At Hale & Hart, I focus on supporting folks through the mental and emotional maelstrom that comes with chronic illness. If you'd like to share about what you're going through to see how I can be there for you, schedule a complimentary 20 minute tea time with me.