Are we out of the woods yet?
By Sarah Anne MacPherson
CONNECTICUT—People affected by Lyme disease are turning toward cannabis to relieve symptoms after unsuccessful treatment with antibiotics.
For 49-year old Mr. Bob Stevens*, a self-described “straight-laced guy” and builder/developer living in Connecticut with Lyme disease since 2013, smoking cannabis to fight insomnia has been life-changing. While remaining anonymous, Bob believes that relaying his experience may provide hope to others.
“I was so happy after not sleeping for more than nine months that I have become a true advocate for the stuff, ” he writes.
Bob does not recall ever being bitten by a tick. Five years ago, he developed severe headaches that he attributed to migraines or stress. Most of his time is spent outdoors, just three counties over from where Lyme disease was first reported in a small group of arthritic children and adults residing in Lyme, Connecticut, in the mid-1970s.
Lyme disease can develop after a bite from a blacklegged tick harbouring the “cork-screw”-shaped bacterium, Borellia burgdorferi. Ticks ingest the bacteria when feeding on deer or mice in established Lyme-endemic areas. From the tick bite onward, symptoms, diagnosis and treatment is an unfair crapshoot with varied outcomes.
Lyme disease can develop after a bite from a blacklegged tick harbouring the “cork-screw”-shaped bacterium, Borellia burgdorferi.
If the tick is removed within 36 hours, infection can be avoided. If the bacteria is transmitted, however, an expanding hallmark “bulls’-eye” rash develops in 70%–80% of cases. Early signs of infection include fever, chills, headache, fatigue, muscle and joint aches, as well as swollen lymph nodes. Late disease symptoms may take months or years to develop: severe headaches, neck stiffness, arthritis, and heart palpitations, and as well as numbness or tingling in the face, hands or feet.
Bob recalls swollen lymph nodes, neuropathy, and abdominal pain in the early days of his mysterious illness. He was misdiagnosed with mononucleosis. Most importantly, unrelenting insomnia affected his decision-making on the job and he made novice mistakes. Mounting anxiety regarding his livelihood led Bob to try many over-the-counter drugs for sleep. He also tried herbal remedies without success, and he began to worry about getting hooked on sleeping pills.
An incident that could have cost him a lucrative land deal finally forced Bob to seek more medical advice. He was referred to a Lyme disease specialist who ordered more lab work and blood tests; eventually confirming that Bob had Lyme. Off the record, his doctor suggested marijuana for his insomnia.
Black legged ticks prefer moist locations. They thrive in sheltered forests and leafy underbrush.
Patients are diagnosed with Lyme disease after inspection of the rash or after blood tests and protein assays that detect an immune response against the invading pathogen. The infection is treated with antibiotics. That being said, tick bites often go undetected if the bulls’-eye rash is not present, and current diagnostics are substandard. Vague symptoms can lead to misdiagnoses, and months or years might pass before one seeks medical attention. Furthermore, not everyone responds well to one standard course of antibiotics, while prolonged use of antibiotics can lead to further and more serious complications.
Lyme disease can be treated successfully when caught early. Yet a significant percentage of individuals (10%–20%) suffer from what has been termed post-treatment Lyme disease syndrome, or PTLDS. People with PTLDS commonly report greater fatigue, pain, sleep disturbance, depression, and over all, a lower quality of life. This condition remains controversial, as many health care practitioners struggle with the terminology and how to best treat patients with persistent symptoms with no signs of an active infection. For some, PTLDS infers that the disease has been eradicated and the cause(s) of the ongoing symptoms are unknown. As such, these people are frequently dismissed.
Now accurately diagnosed, Bob is still symptomatic despite been treated with antibiotics for almost a year. His Lyme disease specialist is following a pulse dosing approach, in which escalating antibiotic doses are followed by a prolonged antibiotic-free period. Bob has also lost weight, which he believes might be due to extended antibiotic use. “My body is just exhausted. I’m really tired. The only relief I get is from marijuana,” he says, the frustration evident in his voice.
“For years I shunned cannabis as a hippy drug, and never really had a good experience with it in my twenties or thirties. But, I was willing to try anything to get relief, anything because I was running out of patience.”
Unofficially, cannabis has become Bob’s go-to drug for getting sleep. At first, it was difficult to get his hands on the substance without a prescription. Talking about it with colleagues or acquaintances proved difficult, as Bob feared professional retribution. However, sleepless nights easily trumped stigma and misconceptions. “For years I shunned cannabis as a hippy drug, and never really had a good experience with it in my twenties or thirties. But, I was willing to try anything to get relief, anything because I was running out of patience,” he states.
For Bob, smoking cannabis every night to relax and rest works. “So much so I told those close to me, and once they knew I was sleeping they were on board.”
For sleep, a THC-dominant Cannabis indica strain is recommended.
Physicians that advocate cannabis for Lyme disease patients with persistent symptoms recommend finding the dosage and cannabis strain that works best for them. If smoking isn’t for you, vaping, edibles, oils or sublingual extracts present other options. To sleep, for example, a THC-dominant Cannabis indica strain has been suggested.
In Bob’s case, his specialist is aware that his patient smokes cannabis for insomnia, but he is unable to provide a prescription due to state licensing laws. Moreover, late Lyme disease or PTLDS symptoms do not qualify as ailments that afford legal protection. In contrast, card-carrying Canadians are federally licensed to possess and use medical marijuana, but a licensed health care practitioner must determine if a patient might benefit from its use. While anxiety, arthritis, chronic pain, and sleep disorders count among the accepted potential therapeutic uses for medical marijuana in both countries, Lyme disease does not. To be considered, high quality clinical trials demonstrating its safety and efficacy must be conducted.
In this way, most research organizations and health agencies are lagging. A search of completed and ongoing clinical trials yields dozens of Lyme disease studies. However, the majority investigates prevention, diagnostic tools and novel antibiotic therapies. For PTLDS, search results are dismal; one study regarding trans cranial electrical stimulation for memory loss, one for pre-treatment expectations versus outcomes of people living with PTLDS, and another investigating the benefits of meditation and stretching.
Ultimately, studies showing the benefits of cannabis will likely make very little difference to Bob or others fighting stubborn Lyme disease and persistent symptoms. Relief and improvement on quality of life while affected by the disease is needed now.
For Canadians, this relief may come in the form of countrywide, legalized recreational marijuana use, effective this October. Accessing marijuana for medical purposes that are not yet recognized by Health Canada will be made easier. Conversely, one might argue that this, in turn, could lead to a population of self-medicating cannabis users, using the inappropriate cannabis strains for the wrong reasons, under unsafe conditions.
At this time, wouldn’t it be wise to further public health research, educate health care practitioners, and quicken our understanding of the potential benefits of cannabis for Lyme disease symptoms and other ailments?
Sarah Anne MacPherson is a Montreal-based medical and science writer with a doctorate in microbiology and immunology.
*Name has been changed for privacy.
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Originally published August 2018