Chronic Lyme disease can be a tricky disease to beat. Unlike short-term, acute Lyme, which most doctors treat with a few weeks of the antibiotic Doxycycline, there is no standard treatment for chronic Lyme. But that doesn't mean there aren't people beating it every day. The trick is just to experiment until you find what works for you.
"Don't be afraid. How you think about this impacts how you approach it, and thus impacts your prognosis," Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, tells Bustle. "I know —because I've seen it both in myself and in my patients — that a holistic approach which takes into account not only the infections in your body but what you're eating, how much you're sleeping, how much water you're drinking, what you're doing about past trauma, whether you are surrounding yourself with loving, supportive people — all those things matter and are within your control. Optimizing your lifestyle really can empower the immune system to start doing its job again."
To find out what kinds of solutions work for chronic Lyme patients, 13 people who have either put chronic Lyme into remission or drastically reduced their symptoms reveal what they did.
1Jessica, 36
"I started with a much more holistic approach in order to try and avoid all of the antibiotics for as long as possible. Unfortunately, that really didn’t work for me. Now, I do a combination of everything under the sun. I do antibiotic pulsing therapy combined with supplements to support my organs. Additionally, I do cryotherapy (to help with inflammation and joint and muscle pain), massage therapy, and acupuncture.
I work with a licensed clinical therapist and am on anti-anxiety and anti-depression medication because there is a huge link between chronic Lyme and depression and anxiety. I also eat gluten free, dairy free, and soy free due to allergies and complications from my illness. On top of all of this, I work with a personal trainer in order to maintain my fitness because I have to move my body in order to keep my joints loose."
2Angelina, 48
"My healing started by finding a very good, comprehensive LLMD [Lyme-literate medical doctor] team that would become my allies while I worked through recovery. I had already been living a very healthy lifestyle. I was vegetarian [...] I did not ingest toxins on purpose. I did not drink or smoke.
I started with blood ozone therapy in Tijuana along with urine therapy. It helped with some of the detox. I bought an infra red sauna. I found a therapist, and I went every week when possible, sometimes twice a week to help support the grief along with the surrendering and hopelessness that accompanied my new reality. I scheduled somatic experiencing work along with NAET. I had to not only detox physically but emotionally as well as mentally.
I found that when I followed someone else's path to healing, I would suffer. I couldn't handle a lot of things that others were trying. I had to really get quiet within so that I could hear my own wisdom. I was really suffering and there was no one who could offer me relief. It was me. That's all.
I had to rid my house of all things that had mold or heavy metals leaching. I removed most EMF from my environment. I lived off the grid for a long period of time. At first, I believed that I should just follow all the protocols my team set for me. I followed my intuition when it came time to try new things that my team would suggest. Sometimes, I would forgo their advice and follow my own research."
3Kristin, 48
"It required a complete overhaul of my lifestyle, of my thinking, of my career, of my relationship to food, of my relationship to control. And many lessons later, I looked back one day and realized I no longer hurt.
I wanted to be able to eat whatever I wanted, and what I learned through my process of becoming well and recovering was that my body doesn't do well with gluten and pesticides and non-organic foods. It wasn't until I did a comprehensive elimination diet that I learned those things.
I have always had very high standards for myself. When I couldn't meet those standards, it was hugely challenging for me, and moving through Lyme was an opportunity to learn to be patient and loving with myself regardless of the disability I was encountering.
I started off on antibiotics for several months, then herbs for several months...I eventually felt like I could stop all those provoking remedies and focus on detox. I got Lyme again about a year after I got well, but luckily by that time, I had learned about oxidation, which I found to be the most helpful, easiest, and least toxic remedy I know."
4Jenn, 43
"My path to today has been multi-pronged and involves a lifestyle and healing approach that is body, mind, and spirit. I eat a diet that is [...] anti-inflammatory, and rich in nutrients. I continue to ensure that the detoxification pathways in my body are working optimally and that what I put in and on my body is as non-toxic as possible.
I take supplements that support the microbiome, provide the necessary vitamins, minerals and fats needed to thrive, and I recently went to the U.S. for stem cell transplant therapy (umbilical stem cells), which has been a life-giving treatment. Stem cells are known to repair damage to the body and cells, and knowing that Lyme disease essentially attacks and impacts every system in the body, I figured I had nothing to lose. It has been three months since the treatment, and I have seen a significant improvement in my energy, stamina, and cognitive function and decrease in my pain and neurological symptoms.
Additionally, I have ensured that I nurture my spiritual and mental health through somatic therapy, yoga, a dedicated meditation practice, creativity, and honoring and listening to what I need. This also includes moving past the comforts of isolation (yes, isolation can be comfortable when one is chronically ill) and spending time and connecting with people I care about and who care about me. Despite the struggles of chronic illness, it is the support of family and friends that has ensured I got to where I am today."
5Ally, 33
"At first, I tried oral antibiotics, pulsing 3-5 different antibiotics at a time, switching every few days. When that didn’t help, I turned to intramuscular antibiotic injections. After a few years, I became so sick and cognitively impaired, I had to be pulled out of college and move back in with my parents [...] At this point, I got a port implanted into my chest and I began IV antibiotic treatments with an IV drip from home. I was so pain-ridden, I needed help to shower, dress, and cut up food/eat and couldn’t talk. This lasted for about four years. I was virtually a vegetable, unable to live a normal life. I slept for hours on end but was always completed depleted of energy. I’d sleep 14 hours at night and need to continue sleeping into each day. The pain was so extreme and never-ending, I thought I was dying.
In an attempt to heal, I've tried acupuncture, glutathione and iron injections, a strict diet, Meyer’s cocktails, depleting my body of all sources of vitamin D (which it is thought Lyme bugs feeds off of), drinking mass quantities of salt water, massage therapy, Chinese supplements, antivirals, and much, much more. After years in this state, I decided to stop all antibiotic treatment. It took a few years to recover and build up my extremely atrophied muscles. I entered into physical therapy to regain my strength and started treating my Lyme herbally with Samento (cat’s claw) and other supplements meant to support over-all health and wellness.
It was a long road to recovery, but eventually I was able to re-enroll in college and live semi-normally. Therapy, an amazing family, and a support system have all been essential in my ongoing physical and mental healing process."
6Lynn, 42
"Parasite cleanse (done before other herbal and detox protocols, as your parasites will have Lyme disease to and continue to reinfect you), CBD oil (reduces inflammation / pain and regulates sleep cycles), herbal protocols, medical marijuana, hyperbaric oxygen therapy, coffee enemas to raise your glutathione, and weekly Epsom salt detox baths."
7Lisa, 52
“I experienced a period of improvement after a large dose of antibiotics in 2015. Yet there’s not one specific thing that has helped me. A good diet, exercise, lots of sleep, and stress management is my mix for managing Lyme. Limiting sugar and eating lots of fruits and vegetables.”
8Stephanie, 45
"The biggest changes for me came from reducing my stress level and changing my mindset. I began practicing meditation in the mornings, getting regular acupuncture, and spending some time outdoors and in the sun during the day. I began sleeping on an earthing sheet, which is bedding that helps conduct free electrons from the earth, and it’s believed to help ease inflammation and chronic pain.
And then a friend of mine introduced me to Dr. Bill Rawls’ book, Unlocking Lyme, and I started taking the protocol that helped him overcome his own struggles with Lyme disease. It includes herbs with natural antimicrobial properties (like andrographis, berberine, cat’s claw, and Japanese knotweed), as well as adaptogens like reishi mushroom and cordyceps for easing stress and immune support. That’s when I really saw drastic results.
Today, I’m out of my wheelchair and back to doing what I love: I’m doing yoga, being a mom to my son, and working to help support people with autism spectrum disorders at a local nonprofit organization. I’m actually really grateful for what I’ve been able to overcome and for what lies ahead. I still take a low dose of the herbal protocol for maintenance, and whenever I start to feel a flare-up coming on, I increase my dosages to help fend off symptoms before they take hold."
9Ria, 67
"I was teaching a process called The Life/Art Process by Anna Halprin, of which I am a graduate. It is a creative arts process where you draw your body and then let the drawing move through you. [...] As we were all making our drawing of the body, I drew the feeling of the Lyme coursing through my body. My drawing ended up looking like a huge parasite, with fanged teeth, living inside of my torso. [...] 'How do I get rid of you' was my question. It said back to me, 'Stop trying to kill me.' [...] I was floored. [...] I said, 'OK, tell me what you want me to do.' It said, 'Just let me leave.' So I did. I was already standing, weakly but standing, and I simply let go and let it take over. My fever raged up through the center of my body. I was sweating more than before. I could feel it moving up toward my head, and then it divided, and some of it went toward the left side of my body, and some of it went toward the right side of my body and then past my skin on both sides out of my body.
In about 15 minutes, the fever began to leave, and shortly thereafter, I was fine. No symptoms at all. About a year later, I was at a spiritual retreat center [...] with a woman I have been studying with since about 2012. I was lying in bed after our meal, and all of a sudden, many of the symptoms came back. [...] I went out to talk with her and she simply said to me, 'I think your mind has not let go of the Lyme disease altogether.' The minute she stopped talking, the symptoms left, and they have never returned."
10Brad, 42
"Its been around six years battling Lyme, and I can say I feel 100 percent better. I followed the doctor's treatment schedule, which had me tapered down form an assortment of antibiotics to now just a few doses per month.
I made lots of other changes as well. The main things were getting more sleep, change of diet, and supplements. It was very hard to sleep because of the joint pain. I was constantly moving around, so they came up with some meds and supplements that helped me sleep through the night. I went to a gluten free/less diet. After some trail and error, we came up with some supplements that help with other things.
There were also other meds that were prescribed to help support whole-body health. The practice I went to treated the whole body to strengthen your immune system to be able to fight Lyme on its own. So now I feel more energetic, [and] have lower cholesterol [...]"
11Mary, 36
"The pivotal moment in healing from Lyme disease for me came at the lowest of the low moments. Pushed beyond the breaking point by devastating losses, I gave up my right to desire something better for myself.
In that moment, I both surrendered and liberated myself. I was truly able to understand how parasites feed off of the energy of attachment. My pain was their sustenance. We often think healing comes from a perfectly healthy mind. The lesson I stood to gain from this near-fatal experience is that light doesn’t come from light; it comes from the dark."
12Heather, 44
"My husband is an energetic healer. He uses energy frequencies to either tell my body what to do, or he pulls bacteria etc., out of me and into him and than diffuses it off into the universe. I was a bony skeleton losing my connective tissue and ability to walk. I was in remission in two months."
These stories are drastically different, but one thing most of them have in common is that they did not just focus on the physical. Treating Lyme can require you to make big life changes, but often, you're better off for it.