For nearly 11 years, I told people I had chronic Lyme disease. It wasn’t true. Now I tell people I have Post Treatment Lyme Disease Syndrome, but I’m not even sure if that’s true. The one thing I know for sure is that I was a victim of “chronic Lyme” treatment. This consisted of false diagnoses, long-term antibiotics, and other inappropriate drugs and supplements, all based on dangerous pseudoscience.
People who identify as having chronic Lyme usually become entrenched in a cult-like support group community both online and in real life. These Lyme groups are echo-chambers for pseudoscience.= They convince followers that they must see self-appointed and often secret “Lyme-literate doctors” (LLMDs) who will treat them for chronic infection. These groups empower their marginalized members with validation, support, and the ability to even treat themselves by comparing notes when there is no access to a LLMD. Their multiple conspiracy theories mirror those of the anti-vaccine community in many ways, and both movements overlap. As it is with cults, it doesn’t matter who you are or how educated you are, anyone can get sucked in. However, this community is disproportionately female. I suspect one reason is that more women report not being taken seriously by doctors, and perhaps many women have little choice but to look to the fringes for help out of desperation. Once you’re marginalized, vulnerable, desperately ill, entrenched in online pseudoscience and conspiracy theory echo chambers, and wooed by the nicest quacks you’ll ever meet, you’re a Lyme Warrior. If you or someone you love is a Lyme Warrior, then please learn from my mistakes.
In 2006, I was 28 years old and had already been diagnosed with various intestinal infections, fibroids, ovarian cysts, dysmenorrhea, allergies, anxiety, and asthma. I lost several jobs from missing work too much due to illness. For years, I didn’t think anyone, including doctors, took my pain seriously. In hindsight, I realize many did and attributed it to physical symptoms that can accompany anxiety, but they rarely attempted to rule anything else out. Any doctor I saw about my pain would respond by saying I looked great. I perfected the art of dressing for doctor appointments. If I looked too put together, they would not take me seriously, and if I looked like a slob, then they would not take me seriously. They would always immediately tell me some people are more sensitive to the aches and pains of everyday life. I also got the feeling doctors thought I was fishing for pain medication, although I never asked for any because I was scared of them thinking this. Finally, in 2007, I underwent an exploratory laparoscopy after begging for one for years. My surgeon found and fixed several intestinal adhesions and diagnosed endometriosis.
Soon after this procedure, I started to have problems with joint pain and fatigue. I had previously lived on a ranch in Texas hill country, upstate New York, and Minnesota, and I had been bitten by numerous ticks in all those areas. I liked to walk in the woods and worked with animals professionally. Because of these things, I asked my doctor about Lyme disease. Since I never had a bullseye rash that I knew of, my MD didn’t think it was appropriate to test. I was eventually diagnosed with fibromyalgia. I tried a couple of different anxiety medications for this but nothing helped. My pain grew worse.
One day at work, my coworker recommended that I see her chiropractor, which I thought was total bunk. She was adamant, and I thought I’d see what it was about since I didn’t know what else to do. I figured it couldn’t hurt. I immediately felt uncomfortable there because he started doing applied kinesiology, and I honestly couldn’t stop nervously laughing because it seemed so ridiculous. He would place objects on my chest and test my arm strength to see if proximity to these objects made me weaker, which he thought would indicate organ dysfunction. This chiropractor told me I had Lyme disease, which caught my attention mostly because of my own suspicion. What’s weirder than the fact that he diagnosed this by placing a CD on my chest with some sort of frequency recording on it, was that he told me to watch out for other people with Lyme disease, because they’re “Victims with a capital V.” I asked him why that is, and he said they are caught up in conspiracy theories. It was all very odd, but I went back to my regular doctor and told her my chiropractor said I should be tested for Lyme, so she finally tested me.
My ELISA test was positive for Lyme, so my MD diagnosed me with Lyme disease and gave me a month of Doxycycline. I honestly can’t remember if she did a Western Blot, which could have ruled out a false positive (I’m on a hunt for these old records). After a month of treatment, there was a lot of improvement, but I was still sick. I was referred to an infectious disease doctor who did a Western Blot, which was negative after my treatment. He said I didn’t have Lyme anymore, and when I told him I still felt sick, he bluntly told me it was all in my head and that maybe I needed a little attention. This was over a decade ago, before I discovered that Post Treatment Lyme Disease Syndrome was a possibility. At the time, I didn’t know various other diseases have post treatment syndromes, too. My Lyme pain felt unique, and I knew it well. Questioning that felt like gaslighting.
My health spiraled downhill, and no one took my pain and new neurological symptoms seriously. I could barely walk or even talk some days. I had joint pain, neurological pain, slurred speech, paresis, cognitive problems, and even hallucinations. I couldn’t work. After I had a spinal tap during an ER visit that didn’t explain my symptoms (and a spinal fluid leak), I started to really look online for other stories like my own. I joined a bunch of online support groups where I became convinced I was still infected with Lyme. I traveled four hours to Dr. John Hoffman, MD, a LLMD in Wisconsin, who was recommended to me by these online groups through private messages. I was asked to keep his identity a secret, lest he be persecuted by medical oversight groups.
Dr. Hoffman diagnosed me with chronic Lyme disease and Bartonella without doing any labwork. I was put on Soma (a muscle relaxer notorious for its addictive properties), various antibiotics that I pulsed for years, B12 injections, probiotics, and Nystatin for yeast problems. He was worried about risks associated with long-term antibiotic use and thought pulsing them would help, which meant doing shorter treatment courses with small breaks between to “build up my gut” again with probiotics, as well as changing the antibiotic type frequently to reduce resistance and target the supposedly different manifestations of chronic Lyme (cyst form, biofilm, etc.). I immediately became extremely ill, but this was justified as being a Herxheimer reaction. Therefore, the sicker I got, the more I was told that meant treatment was working because “Lyme releases neurotoxins during die off.” I felt so sick that I wanted a second opinion.
I went to an endocrinologist and was diagnosed with Hashimoto’s thyroiditis and Vitamin D deficiency. After treatment for those issues, I was only slightly better. A neurologist worked me up but didn’t have any answers. I could not afford to keep going to specialists. My husband is epileptic and was racking up his own fair share of medical bills and work leave, so I started to pick and choose. I chose Dr. Hoffman and more chronic Lyme treatment after some convincing from online groups, coupled with the rude dismissals of traditional doctors.
I continued chronic Lyme treatment but started to develop severe gastrointestinal issues. I decided to go to a gastroenterologist. He first did an endoscopy, and then I went back for a colonoscopy. During the colonoscopy, the sedation did not work. I begged him to stop the procedure because it was too painful. He told me I was in a confused twilight state and would not remember anything even though it seemed traumatic in the moment, and he continued. I screamed repeatedly for him to stop, and he called nurses into the room. He told them I was dramatic, and they held me down while he finished the procedure against my will. My husband was trying to get into the room because of the screaming, and he eventually was let in as they were finishing. They found some ulcers and an issue where my intestines spasmed violently, so I was put on a medication that was would inhibit my intestinal contractions. It didn’t help, so I discontinued using it and never returned because of my horrible experience. I developed extreme symptoms of GERD and was treated for that and possible IBS through my new regular MD (my previous MD had moved). He thought long term antibiotic use was causing the damage, and I said as much to Dr. Hoffman. I planned on stopping treatment, but Dr. Hoffman convinced me that that my GI issues were another symptom of chronic Lyme infection and kept me on antibiotics.
All of my symptoms (except for GI issues and my original shoulder pain) resolved with time. About two and a half years later, I thought of myself as cured and never looked back. I really believed the antibiotics worked and wrote glowing reviews of how Dr. Hoffman saved me. In reality, it was probably a placebo effect and a regression to the mean. I went to him when I was at my sickest and got better after years. Would I have gotten better anyway, perhaps even faster, without the side effects of treatment? Later on, I found out Dr. Hoffman died suddenly in a car accident.
I felt cured, and so I went on to have a healthy baby. I had a truly traumatic hospital birth based on how I was treated and not for any medical reason (that’s another story for another time). When I became pregnant with my second child, I started having panic attacks just thinking about hospital birth because of my first experience. I opted for a homebirth and found (yes, you guessed it) a Lyme-literate homebirth midwife. I filed for bankruptcy due to medical bills alone and had my court hearing while I was actively in labor with my second child. Because both my homebirth midwives did not provide vaccines or newborn screenings, I went to the pediatrician right after birth. Because I had a breech vaginal homebirth (baby flipped during labor-- something that also had happened to my mother), I was lectured to and made to feel quite horrible about so many what-ifs that we had actually carefully planned for. I didn’t transfer to a hospital during labor because it happened too quickly. My baby was out in a few pushes with an Apgar of 9, and I was led to believe that the quick progression was evidence of everything being okay. I dreaded going to the doctor for newborn care because I got lectured every single time in a way that painted me as a bad mother for the decisions I’d made, at a time when I was deeply anxious about getting this mother role right. I came down with postpartum anxiety that manifested as OCD (horrific, invasive thoughts and compulsive rituals that hadn’t troubled me since I was a child). I was scared to tell my doctor. I was scared my chart was flagged for being a crazy person, I was scared I WAS a crazy person, and I became sick again with that old shadow that felt like Lyme. By this time, I had yet another new MD because I had moved. She was treating me this whole time, attributing my symptoms to postpartum hormonal changes that affect joints and postpartum anxiety. I was also eventually diagnosed with carpal tunnel and hypothyroidism when I kept coming back to her with more issues.
I was convinced my Lyme-like symptoms were psychosomatic this time, given my mental health. I went to a psychologist who specializes in postpartum issues. I was treated for postpartum anxiety and OCD, but I was also told that I was not psychosomatic and looked truly ill with what was clearly neurological issues. I became so neurological that my clients at work would wonder if I was having a stroke and insist on ER visits. A different neurologist recommended more diagnostics that I ended up declining due to cost, but I did do an MRI. The MRI was normal, but I was given strict instructions to stop driving based on my neurological exams. My health declined again to the point of not being able to work anymore.
I went to my MD one day when I was so neurological that I was scared. I planned on returning to the neurologist, but there was a wait, and I couldn’t wait for advice. I kept having episodes where I would look down at my arm, and it looked like someone else’s arm. It looked like the arm of a strange man was where mine had once been. It got to point where I wanted the arm off of my body and fantasized about taking it off, so I knew I needed help right away. I had already gotten back into the chronic Lyme groups online, asking if this had happened to anyone else. Of course it had! I told all this to my MD while slurring my speech. I had my children with me, and she was concerned about my ability to care for them despite having help from a spouse, and she accused me of being drunk before examining me. She notified a social worker but apologized later for it. After an argument, she recommended I see a different doctor who supposedly had more experience with “Lyme patients like me”. She referred me to an integrative medicine doctor without explaining what that is. She dumped me onto a quack she thought I’d like (she was right), and I thought I had found the Holy Grail: a legit, mainstream doctor who believed in chronic Lyme and was even covered by insurance-- one who practiced at the chain of hospital-affiliated clinics near me. She diagnosed me as having a chronic Lyme infection despite another negative test. She told me to treat with long term antibiotics again. However, this doctor was uncomfortable prescribing them, so she recommended I see any LLMD again for the antibiotics, but do everything else through her. She also diagnosed me with pyrroluria and treated with countless vitamin supplements, which I had no idea was more quackery. It was only months later that I found out pyrroluria is not a real disease.
My new LLMD was recommended to me by a Facebook Lyme support group. She was technically a NP instead of an MD. She serendipitously was a friend to my midwife and had previously reached out to me for my dog training services. She diagnosed and began treating me for chronic Lyme and Bartonella, based on my clinical presentation. She told me the eczema I had seen a dermatologist for was a Bartonella rash. She started me on countless supplements and three antibiotics simultaneously. She suggested I do this for at least several months, maybe years. I got better with what I now believe to be a placebo effect, right before I got much, much worse. I would projectile vomit after every meal. My Lyme-literate NP diagnosed gluten sensitivity triggered by Lyme, despite having had a negative Celiac test. She diagnosed Mast Cell Activation Syndrome based on labwork showing my histamine was extremely high and new allergic reactions. I had heart issues that I went to after hours urgent care for twice, and both times I ended up in the hospital for monitoring. My LLNP convinced me all these issues were from a chronic Lyme infection, but I wasn’t fully convinced. I was struggling with a cognitive dissonance that I couldn’t reconcile because of a facebook page I liked called “We Love GMOs and Vaccines”. They would occasionally post content about the cult of chronic Lyme pseudoscience. I was furious. They claimed to be science communicators and had gotten one thing so wrong. Or had they? Could I be wrong? I left my Lyme Warrior echo chamber and started following skeptics online instead, essentially “bubble hopping”.
Meanwhile, both my LLNP and my integrative medicine doctor grew increasingly concerned about my son. When I first started treating for chronic Lyme this second time around, I had been grappling with what to do about my son’s chronic pain. For a couple of years, he’d scream in pain for up to hours at a time, every other night (or at least a couple times a week), only at night. He had issues with night terrors before, and we ruled that out. His pediatrician ran cultures, tested for various viruses, sent him to pediatric immunology and infectious disease doctors for a work up, and I threw in a therapist visit for him, too. My pediatrician tested him for Lyme after I asked him to rule that out. My son tested negative for Lyme by normal CDC standards, but positive by my LLNP’s standards. After a few rough nights, I told my husband I was thinking about treating our son for Lyme, but I wasn’t sure if that was the right thing to do-- I just couldn’t watch him suffer anymore. My husband had more doubts than me. He wondered if my son was mimicking my own illness he’d been witness to instead of it really being real. I wondered this, too. We decided to wait and talk to his regular pediatrician more. My pediatrician did a fantastic job of convincing me with perfect patience and compassion that congenital Lyme is pseudoscience. He also went out of his way to research for over a year until he finally figured out that my son had joints that grossly hyperextended (future contortionist?), which could cause this amount of pain and nightly pattern of pain while growing. Physical therapy was the answer. His pain stopped. My LLNP, on the other hand, was trying very hard to convince me to treat him, which I kept declining. She even appealed to my duty to protect my son from medical neglect, suggesting that I was choosing to medically neglect him. This was when I found myself Googling “is chronic Lyme disease real?” in earnest.
I stumbled on the only comprehensive resource I could find online, Lymescience.org, which links to legitimate science (worldwide consensus) and resources. I sat with this information for a while and spoke again with all of my doctors-- even the one who dropped me after accusing me of being drunk. I reached out to friends, family, and even veterinarian coworkers with extensive knowledge about Lyme in dogs. I was shocked to learn that some people close to me knew this was quackery and didn’t speak up before I did, even feigning support. This was more upsetting to me than if they had argued with me about my illness really being Lyme, which feels like gaslighting for sick people. I watched my son get back to normal with no Lyme treatment. I felt myself getting better off antibiotics. I spoke with others online who are victims of chronic Lyme treatment. I left my integrative medicine doctor and found a traditional MD. I was no longer a Lyme Warrior.
My new doctor has never heard of the cult of chronic Lyme and stared at me in shock when I told her my story. She thinks my mysterious illness is partly damage done, and she is properly appalled that people think chronic Lyme is a real thing. I trust her to tell me the truth, even if it’s not what I want to hear, and I trust she’ll do it compassionately. When you’ve lost everything to illness, you build up a network of support in which to survive it. People who leave the chronic Lyme cult are often still ill, but now they’re without support to boot. They are even attacked by other Lyme Warriors for speaking out. Honestly, if my speaking out means I might indirectly save even one child from harm, then it is worth it. Being able to eat gluten again isn’t so bad, either.