Lyme disease (Borrelia burgdorferi) is a bacterial infection spread by tick bites and is estimated to cause more than 300,000 illnesses each year in the United States according to the Centers for Disease Control and Prevention (CDC). In comparison, breast cancer is diagnosed in about 200,000 women yearly. The CDC also notes that Lyme disease (LD) “is the most commonly occurring vector-borne disease and the sixth most commonly reported notifiable infectious disease.”
Regarding its economic impact, based upon results of a national study, the CDC estimates that testing for LD in 2008 was $492 million. Given that the number of LD infections for 2017 (the most recent data available) was the highest recorded by the CDC, that $492 million number is likely an under-estimation in 2019. Many people are contracting LD and the associated costs are astronomical and climbing. We have gathered enough information in a few weeks of research on LD to fill at least one book, but others with significantly more knowledge than we possess have already done so. A Google search will fill your screen with options.
Early symptoms
Early LD symptoms resemble flu symptoms, including fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. The most prominent early telltale sign is an expanding bullseye rash at the site of the bite. However, according to research reports, the rash doesn’t appear in approximately 20-50% of those infected.
A partial list of more impactful symptoms includes partial paralysis, facial palsy, nerve pain, inability to use your limbs, and cognitive impairment. Such symptoms typically appear in individuals who have Chronic Lyme Disease (CLD, as referred to by sufferers) or Post-treatment Lyme Disease Syndrome (PTLDS, as referred to by the healthcare complex).
There is debate about these designations (CLD or PTLDS), but that discussion is for another time and place. Given what we’ve read and heard, we don’t think the approximately 36% of those who experience symptoms and the degeneration of their quality of life, beyond or without treatment for LD, care about bureaucrats arguing about what to call their ailments. These “Lyme warriors” just want to feel better and to have their plight acknowledged.
Diagnosis
By all accounts, LD is difficult to diagnose, in part because the bacteria attack the autoimmune system, which provide other infections access to the body. What might appear as relatively mild symptoms early on can morph into debilitating ones if not treated soon enough or if the treatment isn’t successful.
Meet Mark
Feeling better is what this piece is about. It was because our friend Mark (pseudonym) expressed his joy at feeling better about his quality of life since using cannabis that we began investigating the relationship between LD and cannabis-as-medicine. Given the prevalence of the cannabis movement around the world, we have been aware of the “cannabis-as-medicine” phenomenon, but we haven’t been engaged with that knowledge. Mark’s expression of relief from CLD symptoms, which he attributed to cannabis, engaged us; it made us wonder if others had experienced and/or could experience similar relief.
“The first time I smoked medical cannabis, I cried. Tears streaming down my face, all I could say was that I’d never felt that good. It was within minutes that all of the pain melted away and there was such a switch flipped in my mind…”
The research
We scoured the internet for information about LD and about cannabis-as-medicine. We reached out to various LD support groups and organizations, and we had some exchanges with people whose lives have been drastically changed by CLD and, subsequently, by cannabis. The stories we heard are stories of hope, survival and revival, which dovetail perfectly with the mission of Revive Magazine.
Despite the profound relief our story protagonists experienced, there is no way to determine if and how cannabis will react with any given individual. Whether it is being used for medication or recreation, every individual is different and will respond differently to cannabis intake in its various forms. It is always best to consult with a physician, preferably a Lyme Literate Medical Doctor (LLMD), and someone knowledgeable about cannabis and how it might be helpful to symptom relief.
Back to Mark...
As alluded to above, we spoke with Mark, who talked about going from “…kayaking to being unable to pick up a pen.” Mark listed a litany of ailments that persisted over an almost-two-decade period: A tumor in his neck, pain in all areas of his body, the inability to sleep, even surgeries that he believes might have been unnecessary.
"I just wanted help."
As we talked, Mark touched on a theme that seems to resonate throughout the CLD community: The unwillingness and/or inability of the medical establishment to successfully recognize and treat CLD. In outlining his journey, Mark relates, “I’ve seen lots of doctors, prescribing pain meds, and other meds for liver disorder, No one would look at what was wrong with me. All I wanted was some help and nobody would help me. I was dismissed so many times until one of my friends told me to get checked for Lyme.”
Enter Cannabis
Even after his Lyme diagnosis, Mark had trouble finding any relief using conventional medical prescriptions. Eventually, he tried cannabis. In his own words, “…I just got some regular weed and smoked it, and I went, ‘Are you f*ing kidding me?’ When I woke up that first morning, I was like holy sh*t! I can’t believe I slept from 10:30pm to 7am! I hadn’t slept for more than 20 minutes at a time in like four years. When I first woke up, I was euphoric.”
Meet Jessica
“The first time I smoked medical cannabis, I cried. Tears streaming down my face, all I could say was that I’d never felt that good. It was within minutes that all of the pain melted away and there was such a switch flipped in my mind that I’m sure you could have heard it.
Jessica Donaldson, another Lyme warrior and advocate, openly shares her CLD experience, which has gone on for more than half her life. Perhaps most troubling about Jessy’s story is the winding, spiraling, dead-end avenues she traveled in search of help for her CLD misery. In a Lyme Voice podcast, Jessy shares, “In 2010 my world came crashing down when I was told those earth-shattering words that many of us live to fear, ‘You have cancer.’ Apparently, the result of two biopsies indicated that she had Non-Hodgkin’s Lymphoma.
Later in the podcast, after listing a variety of treatments, she reports, “The next few years were spent in and out of the hospitals and emergency rooms. A list of specialists a mile long diagnosed me with a list of diseases and disorders equally as long. With each new diagnosis or symptom, a new medication was added. It was only a matter of time before my body crashed under the weight of all the medications. In 2013 I was diagnosed with late stage neurological Lyme disease.”
Jessica's cannabis journey
It took Jessy some time to find her cannabis relief as well. In a written exchange we had, she writes, “I had heard about using cannabis but was in pain management treatment, so I was not able to try it. However, I was released from pain management, all of a sudden, when I questioned the doctors’ tactics. And that is when I had two of my doctors recommend trying medical marijuana…
“The first time I smoked medical cannabis, I cried. Tears streaming down my face, all I could say was that I’d never felt that good. It was within minutes that all of the pain melted away and there was such a switch flipped in my mind that I’m sure you could have heard it. This saved my life, there is no question about it. I was able to get off every single medication that had been flooding my system for years.”
The LD Community
Another significant feature of our excursion into the world of Lyme disease is the immense courage and generosity of so many in the Lyme community. Strewn across the multitude of websites, blogs, vlogs, Facebook pages and groups, podcasts, and YouTube videos, are sharings of personal stories, diets, supplements, and remedies that have worked for the storytellers. Suggestions are proffered, recommendations for LLMDs and just about anything else that might lead to a better life for Lyme warriors are offered. This is a community where people actively care for each other and buoy each other through devastating times.
Meet Erica
Erica and Paul Valker are exemplars of this community ethic. There is a graphic 2014 YouTube video documenting Erica’s battle with CLD and co-infections, so we won’t go into much detail here. However, after their long bout with CLD both credit cannabis with Erica’s revival.
“I had more Dilaudid than was needed to drop a horse!” Erica said.
Paul noted, “She didn’t turn the corner until we got rid of the Dilaudid.”
“Yes,” Erica chimed in, “the real progress began when I upped the cannabis dosage and reduced the pain medication.”
Post Erica’s recovery, they are raising an 18-month old daughter and are devoting their business lives to an effort that would contribute to the Lyme community and to others who may reap the benefits of cannabis-as-treatment. Erica and Paul founded Serene CBD in 2016 and offer discounts to LD warriors.
They also give a percentage of every sale to the LymeLight Foundation, whose mission is “…to provide grants to enable eligible children and young adults with Lyme disease to receive proper treatment and medication as well as raising awareness about Lyme disease.”
Moving forward
This initial foray into the world of Lyme disease and cannabis-as-medicine has been an eye-opening one. It is a world of pain, a world of torturous journeys where few, if any, can survive without courage, the support of loved ones, and open minds. If cannabis-as-medicine can make those journeys more peaceful and less torturous for Lyme warriors, we fully support the movement to make cannabis fully available to those in need.
