BUT...This post isn't a pity party, because that is an extremely easy trap to fall into when you live with a chronic & occasionally debilitating disease such as Lyme. This post is about how life can still be full of joy, and love, and can teach you A LOT of incredible things when you have an illness like Lyme, Chronic Fatigue, and so many others.
I won't tell you my whole Lymey story right now (it's a long one) but I do know that after over 15 years of cumbersome and strange symptoms, I was relieved to know what was going on when I finally got my official diagnosis last year. Being an herbalist myself, it was easy to come up with strategies to cope with individual symptoms before, but not knowing the WHY really made it difficult to do much other than ease the pain sometimes. The tricky thing about auto-immune phenomena in Lyme and so many other disease, is that symptoms often change with no notice. And what started as chronic pain in your hips and back, can switch on a dime to what?! Migraines? For three weeks straight?! (I'll be over here in my hole, nobody talk to me, just bring me my cat.)
There are so many treatment protocols out there nowadays, so if you or a loved one has Lyme or a disease like it, let's take a moment to be grateful that we do have choices now (other than Doxycycline) and the best advice I can give on finding a treatment, is find one (yes, one) practitioner you like that actually includes you & your amazing human heart in your own treatment (rather than just prescribing it). I say find one, because it's difficult enough to follow one protocol, than to try an reconcile more than one different or even similar treatment plans at a time, and you'll be doing yourself and your body a disservice if you dive into too many things at once.
Find a treatment plan you can stick with for a good long while, because if you're like me, this is probably not going away in a couple months. Perhaps a protocol that's not all about "killing the damn things", but actually offers some deep nourishment, support, and a few lifestyle changes to help you cope on a different level than just squirting a bunch of herbs into your mouth, taking 50 supplements a day, or moping around feeling badly for yourself.
It's easy for me to get all philosophical about our cultural perception of disease, but I will try to sum up my guiding principle in the best way I can: like many of us are finding out, Lyme is here to teach us something. Mama Earth is teaching us a much needed lesson on how we really should be fitting into this incredible community of creatures. The only way to learn the lessons of the earth, and that dern bug that decided to invade your body, is to listen up, and more than anything, stop hating yourself or feeling badly for being susceptible. You got this thing because you are ready for the gifts and lessons it's got for you. You might even be that wounded healer yourself.
Here are some of the things I have learned during my very long & ongoing dance with Lyme and associated symptoms. Most of these are lifestyle & alternative approaches. Some are simple, and some are really much easier said than done, but still incredibly rewarding.
You are awesome and you're going to get through this. You are a beacon of light & hope to others in your community if you can cope with your own disease in a different way than how we are conventionally trained. I wish you love and luck incorporating some of these practices into your life, and I salute you on your healing path.
M E D I T A T I O N
"Wow, really?" you might be saying. Yes, really. This is the one of most important things you can do if you're dealing with Lyme or any chronic illness. I have struggled with this truth for my entire life, because my father and stepmother raised us in a Buddhist household where meditation was the answer to literally everything. Upset about your boyfriend? Go sit. Struggling with your teenage anxiety & confusion? Go sit. Lost your job? Go sit, and then go find a new job.
But this is not an uncommon or novel prescription for dealing with illness and upset, or even when things are going great for that matter. There are numerous studies done on meditation & Cancer, PTSD, and chronic pain. It works, and it's also working on a physiological level by helping to correct and reboot neural pathways, decrease adrenal exhaustion, and generally reduce physical & emotional distress.
Back in October, I attended several Lyme related lectures at the annual American Herbalist Guild symposium, and meditation was one of the most highly recommended tools for coping with symptoms.
At this same conference, Richard Mandelbaum, Acupuncturist & Clinical Herbalist, offered a lecture on the Mental & Emotional Aspects of Lyme Disease that really brought this conversation to the forefront for our community. Lyme disease has an incredibly devastating effect on the nervous system at times, not just because it's hard to have a disease in the first place, but because Lyme spirochetes exist in the fluid and tissues of the nervous system, as well as other parts of the body. These organisms wreak havoc on our emotions, create intense brain fog, and depressive behavior, often referred to as "Lyme Despair".
I have personally felt the lows of this pathology, so I have learned that one of the most supportive things we can do for our own struggle, and for the struggle of our loved ones & clients (if you happen to be a healer yourself) is to validate the suffering wrought by this disease, and then give some real tools to cope with that suffering. The number one tool, of course, being to work with the mind in a way that also creates space around the suffering, because as much as it is real at times, it also isn't! It's made worse by our indulgence in the lows, in the belief that this is forever, and in the belief in our inner dialogue around how we feel and who we are. Richard shared the story of one of his client's who, after beginning to meditate during his Lyme treatment, would come into his office and say, "When I meditate, I no longer have Lyme." This is a sentiment I strongly echo. When I have kept up a somewhat regular sitting practice, I simply hurt less. I feel more in control of my symptoms, and I love myself a little more.
Meditation is the real deal. If you don't know where to start, I would recommend finding a weekly or bi-weekly meet-up on basic meditation sitting practice. It doesn't have to be fancy, you don't have to know how to astral project. You can just fold up a blanket on the floor, face out the window, light a candle or some incense, and...
B R E A T H E. Every time a thought comes up, just touch on it, and then breathe more. Keep breathing. It's the first and last thing that we do.
G O O U T S I D E E V E R Y D A Y
This seems like an easy one too, right? It's not. Sometimes my husband literally has to drag me off the couch, wrap me up in a blanket, open the door, and push me out into the sunshine.
For a lot of reasons, going outside is literally everything. Natural vitamin D production is super huge for our immune systems and mood (at least between October - March, then you gotta take your D3, people), but also, it's hard to feel like crap when you're surrounded by nature. That's easy for me to say considering I live in the pristine Rocky Mountains, but even when I didn't, city parks were my thing, and I had nature spots in every place I have ever lived or visited. More of us with Lyme are realizing this disease likely exists in a persistent way because of our relationship with nature as a society. Considering the fact we spent the first half or more of the last century spraying really awful chemicals into the air, water, and land to kill insects, & dowsing our bodies in antibiotics, it would make sense that insect born infectious diseases are coming back with a vengeance, amiright?
Another great thing about going outside & moving is that it can really help with die-off & subsequent die-off reactions, otherwise known as Herxheimer die-off reactions. A lot of folks in our country (and beyond) have stagnation in their lymphatic flow, because we are sitting at desks all day, maybe not exercising enough, and for that reason, it's possible to experience worse die-off because the dead bugs are literally recirculating in your body, making symptoms worse, and also happen to be the inspiration for my upcoming memoir titled "Everything Hurts and My Brain Doesn't Work". Getting your lymphatic fluid to gently move, will help revive your energy and reboot your immune system, moving the toxins out of your body faster than if you're just sitting or laying around. There are also a lot of beautiful & gentle lymph-moving & supporting herbs (aka lymphatics or lymphagogues) that you can take and incorporate into your protocol, but more on that another day.
The last great reason to go and be outside as long as you can, is something that Boston herbalist Katja Swift calls, "rewilding yourself" or "getting undomesticated". She reminds us that, wild animals don't present with symptoms, though it is likely that they have Lyme in their bodies too. Domesticated people & animals DO present symptoms, often for a very long time. Part of her protocol also relates to rewilding our diets (i.e. eating like our ancestors did), looking at our sleep patterns, and more, but just simply being outside is huge, because it really helps to put things into perspective. It's hard to stay grumpy when your lungs are filled with fresh air, or you're lost in the natural scenery. Better yet, go meditate outside.
G E T S U P P O R T
(& GET RID OF PEOPLE OR HABITS THAT DON'T SUPPORT YOU)
This is a tough one, and though it naturally happens to a lot of us as we get older, there are some habits and people that are just truly hard to shake. There is a new article everyday about "toxic" people or relationships, and it's a valid idea. But much like germ theory is perhaps not the best approach we should be taking on immunity, looking at whether this or that person is "toxic" is perhaps not the best approach either. What makes a person "toxic" is your reaction to that person's behavior, or your vulnerability to their behavior. Call it your emotional or spiritual terrain, if you will. The tricky piece to this that I can't ignore, and neither can you, is that whether you're ill or not, you are responsible for the energy you bring into your life.
When I was first dealing with symptoms as a young adult, I was lucky enough to be working with a couple healers, and also doing a ton of research on my own, and I got into some interesting protocols where I had to follow very very strict & limited diets, quit drinking alcohol for long periods, and basically adopt a totally different lifestyle than that of my peers. I essentially turned into a 23 year old grandmother, and definitely felt better for it. That is, until my friends and peers would make me feel weird for not being able to drink, smoke, eat Oreos, stay up until 4am, or whatever "fun" thing they were doing on a given night. When you're in your early 20s, it's already hard being alive in a lot of ways. You're not old enough to know anything yet, but you're not young enough to have an excuse for being stupid, either. I was incredibly vulnerable to the toxicity of not having the unconditional support of my peers, who again, didn't know anything, and it took me a long time to move out of feeling lonely because the friends I had couldn't always support me in my healing. Facebook support groups can only do so much, you need actual friends & family in your life to turn to in times of distress. People to call if you're freaking out and feeling utterly drowned in sadness & pain. This is not an exaggeration in the realm of Lyme & other illnesses, this is actually a quite regular occurrence for many of us dealing with chronic illness.
Here's the thing, you find out quickly who your true friends & family are when you fall ill with a not so straightforward disease like Lyme, Chronic Fatigue, or whatever. People just aren't trained to see that as "REAL", at least at first. But just like you decide what you put into your body everyday, you decide who gets to hang out with you. And if they're rolling their eyes at you and being a meanie 'cus you won't go to the clubs with them tonight, they don't get you. A true friend would push your coffee table out of the way, turn on Prince, and make your living room the club.
F I N D Y O U R P L A N T A L L I E S
& THEY MIGHT NOT BE WHO YOU'D EXPECT
Boston based clinical herbalist Katja Swift is one of the coolest chicks I got to see speak on Lyme at last year's American Herbalist Guild symposium. She inspired me because she's sort of a Lyme pacifist, or someone that isn't all about killing the bug. And she has a point, because Lyme isn't really ever going to go away forever. The "going away" part operates more like a remission in symptoms. How you get into that remission is super important, because a lot of conventional medical doctors & naturopathic physicians use pharmaceutical drugs or intense herbs that are meant to "kill off" the spirochetes as much as possible, leading to a remission, but with an inevitable flare up of symptoms if you don't actually adopt lifestyle & diet approaches that support your body's resistance to future infection and activity against current illness. Katja looks to more nourishing and supporting herbs to treat Lyme, focusing on the actual terrain of the host's body, than on killing the spirochete itself. I think this is a great approach and it makes sense, though I'm still also into following a protocol than incorporates herbs that are selectively antimicrobial (anti-viral, anti-bacterial, & anti-fungal) because Lyme has also made me more susceptible to a lot of other infections, & can itself be introduced to the body with a whole lot of co-infections such as Babesia, Bartonella, and other parasites.
I could go on & on about my favorite herbs for treating Lyme symptoms like pain, fatigue, & depression. But it's also really important than you find what works for you. I am a 28yo, fairly active, "Vata" (cold & dry constitution) female living in the mountains, so what works for me is not going to work for everyone. I have to look at stress management, diet, and sleep as the three MOST significant factors in my health.
A great way to see what herbs might work for you is to start growing some yourself. Often, we herbalists find that some of our best and most effective plant allies are those that grow well in our back yards. Some super easy examples might be in the mint family (peppermint, spearmint, lemon balm, & motherwort, to name a few) or a favorite go to for many of us is Dandelion, whose leaves, flowers, and roots can all be amazing allies for Lyme and associated infections.
Here are some of my personal favorites and why:
1. Holy Basil (Ocimum tenuiflorum or O. sanctum)
Holy Basil, otherwise known as Tulsi, is a wonderful heart & nerve soothing herb. In the mint family, it can be grown easily as an annual herb in part shade to full sun. Tulsi is actually traditionally three separate herbs in Ayurvedic Medicine: Rama, Vana, and Krishna. Mountain Rose Herbs gives a nice little description of each here. I have mainly used Rama Tulsi, and enjoy it's more mild flavor especially when mixed with a little lemon juice and honey. It's a wonderful herb as a tea (or infusion) and can be enjoyed anytime of day, and is also easily mixed with a lot of other herbs and flavors, including some of the other herbs I list here.
Tulsi is a really useful ally for Lyme, and Lyme related fatigue, anxiety, and depression. I prefer it as a tea, because any excuse to get more water in the body is great, and taking time to sit down and drink a cup of tea is a wonderful meditation in and of itself. It can be used on a daily basis and I find that it helps with some of the less enjoyable effects of die-off, such as upset stomach, heart palpitations/weakness, and dizziness.
2. Passionflower (Passiflora sp.)
Passionflower is another effective remedy for anxiety, especially circular patterns of thinking, which is often the case during times of illness. I use Passionflower tincture in small doses throughout the work day, especially when I am hitting a wall in my work, feeling overwhelmed, or frustrated with a lack of motivation. In larger doses (again, usually in tincture form), I find it to be very helpful with certain kinds of pain, especially when it's just general ghost pain that can't really be pinpointed to a specific area of the body. I personally use Passiflora caerulea or the Blue Passionflower, because it grows well in my greenhouse and the leaves are so abundant. The flowers themselves are most known for their medicinal use, but the leaves, buds, and shoots can also make beautiful medicine.
3. Ginger (Zingiber officinale)
Ahhh, spicy, aromatic Ginger. This is an almost daily go to for me. A lot of people don't know ginger is also a potent anti-microbial (especially anti-viral), in addition to being one of the best allies for nausea and both gastrointestinal & uterine cramps. It can also be used to treat pain, and is very effective in this realm when used in a variety of different ways. First, as a tea, this is a nice general anti-inflammatory (much like its cousin Turmeric), and taken in higher doses, has been said to be as effective in relieving pain as over the counter Ibuprofen & aspirin. I also often use Ginger topically in oils, baths, or muscle salves. Because Cayenne is sometimes too spicy for me, I use Ginger to help other herbs penetrate more deeply into the muscle tissue, joints, & fascia. In herb speak, this action is considered to be diffusive.
I love taking ginger Epsom Salt baths. Essentially you make VERY strong tea from grated fresh ginger root, and pour the whole pot of it into the bath with you. This is a really great remedy for sore, tense muscles, or those weird intermittent chills that can sometimes happen with Lyme.
4. Cannabis (Cannabis sp.)
So maybe this one will be slightly controversial, but I live where it's legal. PLUS, Cannabis i.e. Marijuana i.e. Weed/Herb/Ganja is one of THE OLDEST herbs in Materia Medica (Herbal Encyclopedias) from around the world, and I am a proponent of its medicinal use as well as light recreational use. I will not go into reasons you should or shouldn't smoke it here. If you're reading this, you're an adult and can make up your own mind about whether it helps or hinders. I will say, however, that this can be a great pain remedy, but if abused, can really negatively effect Lyme related & general depression, anxiety, brain fog, and that whole lack of motivation thing too.
My absolute favorite way to use Cannabis is as a pain salve. I infuse Cannabis, Ginger root, and often other analgesic herbs into coconut oil, then strain out the herbs and mix the oil with beeswax to make a nice soothing muscle rub. You have to be aware of ratios when making medicine like this, and there's lots of resources online, but just for beginners awareness, typically for oil infusions you're using a ratio of about 1:4 (herb weight: oil volume) and for Cannabis, you'd use about a 1:10. This is not for eating, it's for topical use only. And there's a little more to it, in terms of preparation, but if you're curious, you can get into contact with me or use the Google machine.
Also, just recently, my friend whipped up a batch of Cannabis infused Epsom Salts that will get into those muscles really well too. Great for bathtime, and the magnesium from the Epsom Salt can do a ton for pain all on its own as well.
5. *Bonus: Raw Local Honey
Honey isn't an herb, but it's powerful medicine. I use raw and preferably local honey for everything. Topically, it has broad spectrum anti-microbial activity that's great for anything from zits to sunburn to weird rashes. It's also great as an addition to herbal teas (especially when they might be a little drying on their own), helps soothe the throat, and is great to get your garlic on (freshly crushed garlic in a spoonful of honey is my fave cold cure and daily prevention tip). I also really believe in the power that the bees & other astral forces put into this incredible golden goo.
A lot of folks with Lyme are susceptible to every cold, flu, or illness that's circulating around. It's also common for allergies to get out of control and feel like they're ruining your life, when you have Lyme or a suppressed immune system in general. Your histamine cells are over-activated, and if you're tired, you're going to feel it even more. Honey, used consciously in moderation, can help with a lot of overactive immune symptoms.
I love making infused herbal honeys, and so do my business partners over at Dynamic Roots High Altitude Herbals, we're adding some delicious ones to our product line very soon. It's a little easier and a bit more shelf-stable than a syrup, and also a really great kid-friendly way to incorporate herbs into daily use.
D O N ' T L E T Y O U R I L L N E S S R U L E Y O U
At the beginning of this post, I shared that just yesterday I had to cancel my honeymoon out of the country. It was a difficult decision that my husband and I had to make together at the last minute, just two days before we were scheduled to leave. But the reality was, I never should have planned that in the first place. I haven't been in the position to travel for quite some time, and every time I have to take a quick trip, in or out of the country, I often get sick for weeks afterwards. I went from being really pissed off, bummed out, and a little shocked to being sincerely and profoundly grateful.
Having the privilege to make that call, having the support of my husband, my family, and my best friends is way better and more life-sustaining than a tropical honeymoon retreat (as much as I want to do that as soon as I feel truly much better). I actually feel grateful for this disease. It reminds me everyday that I have the opportunity to make choices to positively affect my health, and also practice what I preach to my clients and to my community.
We healers are often the ones lacking on the self-care front. We all know it, but sometimes it takes a really intense wake-up call to actually digest the lesson and choose to think & act differently next time. This is not the illness ruling you, this is you being awesome and becoming more enlightened with the help of the organisms that live within you. Thanks organisms!
Every illness is a teacher, and in our modern age of seeing illness as the enemy, it is time to shift our perspective and find the gifts in each obstacle thrown our way. I know, trust me I know!!!! That is not easy, and it is not hypothetical. Me telling you this doesn't mean I have risen above this challenge, it means I try, and I want to try, and I'm trying to make that intention public, in hopes there will be more like me and we can all dance to Prince in my living room together.