In honor of Lyme Disease Awareness month which is May, I’ve decided to share with you my story of Lyme and Lyme recovery. It’s one full of crazy treatments and ups and downs, but I know for many out there suffering and looking for answers, it might provide the hope or inspiration and certainly some ideas about treatments and things to try to heal.
I was diagnosed with Lyme disease at age 11, ironically because my younger brother was, and my mother decided to have me tested as well. He was sick with Lyme symptoms, he had joint pain in his knees and learning disabilities/cognitive issues for years before any doctors figured out what was going on. When he was finally diagnosed, my parents looked at me, who had suffered from severe fatigue and short term memory loss for at least a year and wondered if I might have it as well. Sure enough, I did.
Lyme testing is historically very inaccurate if fact the Lyme screening test is falsely negative nearly 50% of the time. That’s like flipping a coin. And the lab quality of where you send the tick for testing varies greatly (check out our article on tick bites for more information on labs). Unfortunately, I was too young to know what kind of Lyme test confirmed I had it, and my mom has since passed away so I can’t ask her and my father doesn’t remember. But with some kind of test, a conventional doctor confirmed I had Lyme. Of course, the next step was antibiotics for I believe several months, which was somewhat standard back then. After we finished the antibiotics, my brother and I both still had Lyme symptoms.
At that point there were no other real alternatives offered by the conventional doctors besides more antibiotics, which my mom decided wasn’t a suitable solution because if you think about, antibiotics wipe out your immune system, and staying on them for long periods of time means your immune system is likely never going to be strong enough to overcome the Lyme, and now we know that the Lyme is super tricky and brilliant and morphs to evade many of the common antibiotics for Lyme, hence why people initially feel better on them, but then feel worse. When we filmed Ally Hilfiger’s Lyme recovery story, she detailed her many rounds of antibiotics and pattern of feeling better and then worse. At that point, my mother began a journey through the world of integrative medicine to get me and my brother better.
We did so many different things in those few years that I was sick. I can remember visiting a Chinese herbalist in Flushing, a neighborhood in Queens, New York, and having to drink some disgustingly bitter herbal teas which had anti-bacterial (Lyme is actually a spirochete which is a spiral-shaped bacteria) as well as immune-boosting properties. It stunk up our whole house, and as you can imagine, put a serious damper on my popularity for playdates.
Also for Lyme, I took supplements with breakfast and dinner and avoided (with some exceptions, I was a kid after all) dairy, processed foods, and gluten, although back then we just called it wheat! About a year after my Lyme diagnosis, I wasn’t getting better and my mother took me to Minnesota to see a dairy farmer who helped us do a treatment called Hyperimmune Bovine Colostrum Therapy (HBCT). Colostrum is the first few days of a mother’s milk after she gives birth (humans and cows alike!). Hyperimmune Colostrum is produced by cows that have received vaccinations against specific disease-causing organisms (in my case Lyme). The Lyme vaccination then causes the cows to develop antibodies to fight Lyme, which then pass into the colostrum, which I then drank. It’s technically still in orphan drug phase (which means the FDA believes it can be effective but needs a drug company to pay for the clinical trials and “sponsor” the treatment to come to market), so it was technically illegal for us to be doing it when we did but we were desperate and my mother had heard that it could be quite effective.
We stayed in a Motel 6 for three weeks in the stifling heat of the Minnesota summer, going back and forth to a dairy farm swarming with flies. I had my blood taken several times (by my mother in a car!) and then packed up gallons of frozen colostrum to take back to New York. I walked around school in seventh grade with a little freezer bag for my colostrum and swished a few ounces around under my tongue every few hours. Needless to say, my twelve-year-old self thought this treatment was pretty insane.
The very last summer that I was acutely sick with Lyme, I was taken to a Hyperbaric Oxygen facility in Lancaster, PA (Amish country) for another three-week stay. Hyperbaric Oxygen Therapy (HBOT) uses highly pressurized air (three times that of normal air pressure) to hyper-oxygenate your blood (via your lungs). The oxygen travels through your body and according to the Mayo Clinic, “helps fight bacteria and stimulate the release of substances called growth factors and stem cells, which promote healing”. I remember lying in this tanning bed looking machine every day for a few hours and just breathing deeply. Finally, my health began to turn around by the time I was about 13 or 14.
My brother took longer to recover because I believe his Lyme had been untreated for longer than mine, and his symptoms seemed more severe than mine. He was taken out of his highly competitive elementary school at age nine and went through less rigorous schools and was homeschooled for the rest of his childhood. Hs joint pain subsided sometime in his mid-late teens and his brain recovered enough for him to attend and graduate from a top tier university.
There is no one kind of treatment for everyone to kill off Lyme disease because it depends on the makeup of your gut bacteria and the strength of your immune system, whether you are battling any other viruses, parasites or bacteria at the same time, how long you’ve had Lyme untreated, whether you also got co-infections in the tick bite, and many other factors. I offer my story and what I did to get better as a place to start exploring if you’re looking for ways to treat Lyme disease, but they may not work for everyone.
I recognize now that many of the treatments my mom researched and tried for us were experimental, but she had such determination to get us better that eventually one or a combination of several (we’ll never know) of them worked to kill off the Lyme and restore my immune system’s ability to keep it from rearing its ugly head. I will be forever grateful for her ability to think outside the box and ferociously research at a time pre-Google (I mean remember Altavista?!) when information about these kinds of treatments, and about Lyme Disease in general, was not readily available.
She taught me these three important lessons: knowledge is power, where this is a will there’s a way, and that the world of integrative medicine, which I previously thought of as “woo woo” and full of quacks and hippies, was really full of (mostly, I can’t speak for all) practitioners and doctors willing to think, learn and treat differently from conventional healthcare providers, sometimes at tremendous risk to their reputation. From these practitioners, I learned the power of courage, conviction, and truth. Lyme can be truly heartbreaking, I feel incredibly lucky to be on the other side of it and will continue to bring attention and advocacy to all of those lying in bed right now, who have been maybe for years or decades, with antibiotic IV drips in their arms and with seemingly no end in sight, no light at the end of the tunnel.
But know this: there is light, you will heal, you just have to think a bit outside of the box and fight for your right to heal in whatever way is needed. And lastly you have to do the work, even though you feel awful and have zero energy and motivation, you have to follow the strict diet, take the supplements, the herbs, get in the tank, whatever ends up working for you (and keep trying different things until something begins to work!), you have to do it day by day, and it will likely take months or years but it will work so have faith! Have you or someone you love had Lyme disease and/or experience with the integrative medicine world? I’d love to hear what you or their experience was or is in the comments section below.
If you’re struggling with chronic Lyme (or think you might be) and need help finding a Lyme-literate doctor and seeking alternative treatments, I can help. Schedule a 1:1 call with me to learn about my holistic patient advocacy services.
Watch my full story here:
The recovery story above is anecdotal and specific to this particular individual. Please note that this is not medical advice, and that not all treatments and approaches mentioned will work for everyone.