It begins with the sensation, head to toe, of ants crawling on his skin, followed weeks later by a sudden outburst of lesions across the body.
Then, the fibres – red, black, white, sometimes, even a bright blue or purple metallic shade – start protruding from the wounds.
“It’s like living in a horror movie, but prolonged, not the 90-minute version from Hollywood,” Lance Tycholaz said. Tycholaz’ symptoms began to materialize in 2009, two weeks after he was bitten by a tick.
The symptoms are not a product of Hollywood, but of Morgellons disease, which is, depending on who you ask, is either a skin or psychiatric condition. It’s not a common ailment – there’s only about four cases estimated in every 100,000 people.
With no widely accepted cause or treatment guidelines, Morgellons has primarily been viewed by doctors as a psychiatric condition. Many believe their patients are delusional, imagining the fibres and, in some cases, mistaking them as parasites. Often, antipsychotics are the first line of treatment.
It was the case for Tycholaz. In 2011, after failing to test positive on a standard two-tier Lyme test, he was referred to a dermatologist, who he said prescribed him antipsychotic medication. He took the medication as prescribed but the bizarre symptoms only worsened. So, before his next appointment, he collected a sampling of the mysterious fibres to bring to the dermatologist.
He didn’t know it at the time, but this strategy is common amongst Morgellons patients, referred to as “the matchbox sign,” and has often been considered an initial indicator of delusion.
The dose was doubled at Tycholaz’ next appointment. At no point, he said, was he assessed by a psychiatrist before being prescribed the medication. He didn’t return to the dermatologist.
About a year later, Tycholaz’ symptoms had only worsened. There wasn’t a day that went by, he said, that he didn’t experience the crawling, itching sensations. The fibres were still protruding from his skin; It was “the epitome of hopelessness,” he said.
In the first few years after the onset of symptoms, Tycholaz says he spent nearly $20,000 seeking relief from homeopaths and naturopaths to no avail, “but I just didn’t know about Morgellons at the time. I didn’t even know the word.”
Then Tycholaz met Marianne Middelveen.
Middelveen, a microbiologist from Alberta specializing in fungal diseases and bacteriology, has been studying Morgellons for more than a decade. She is confident the condition is not psychiatric in nature, but a byproduct of a species called borrelia, the same bacteria that causes Lyme disease.
“There’s a tendency to blame the patient,” Middelveen told the Star, “but just because a person has perplexing symptoms, does not make them delusional.”
While she has never suffered from Morgellons symptoms herself, Middelveen learned of the term while researching her own undetected case of Lyme disease and, through her work as a veterinary microbiologist, recognized it as similar to a spirochetal infection found in cattle.
The idea would set Middelveen on a decade-long research journey.
Soon, she began testing samples supplied to her, Tycholaz’ included, looking to debunk the theory that Morgellons patients were planting the fibres in their own skin.
At first, many of the initial samples came back as environmental contaminants – cotton from clothing, pet hair, or cosmetic glitter – but soon, she found others, brightly coloured and deeply embedded under unbroken skin – were made of collagen.
“Right away, that eliminated this idea that patients have planted themselves with textile fibres, which is what a lot of doctors have accused them of,” Middelveen said.
Middelveen tested skin samples from the lesions, and blood samples supplied from patients, and in both found borrelia. While she still can’t explain the exact mechanism behind the fibre formation, “the underlying infection seems to be the root cause.”
She doesn’t blame patients for becoming fearful or forming false beliefs; “They might say they have a parasite coming from their skin and it’s really a little blue filament, but that doesn’t necessarily mean they’re delusional, it means they lack scientific knowledge to know that isn’t the case.”
Middelveen first published her evidence in the Clinical, Cosmetic and Investigational Dermatology Journal in 2011, featuring Tycholaz’ samples in the study. Since then, she has published more than a dozen peer-reviewed articles on Morgellons. In that time, she says she’s lost count of the number of people who have sought her out for help, desperately looking to rid themselves of their mysterious filaments.
“Many of these patients have gone from doctor to doctor, and have been dismissed, misdiagnosed, or mistreated,” she said. If her research was replicated and more widely accepted, the first course of treatment for patients would very likely be antibiotics, not antipsychotics, she said.
Middelveen isn’t a physician however, and cannot offer any official avenues of diagnoses or treatment. Even if she was, the testing available to patients in Canada wouldn’t guarantee a diagnosis or treatment. The first line of diagnostics, standard Lyme tests are often inaccurate. It’s estimated, as a result, only 10 per cent of Canadian Lyme cases are detected.
“Basically, if you end up getting Lyme disease in Canada, unless you pass the two-tier testing, you’re not going to get treated,” said Janet Sperling, the executive director at the Canadian Lyme Disease Foundation.
For those experiencing symptoms – either of Morgellons or Lyme disease – Sperling said the first step is finding an informed family doctor. While CanLyme formerly published a list of “Lyme-literate” practitioners, she said the organization had to stop.
In turn, physicians with patients who test negative but continue to present with symptoms are faced with a difficult decision: prescribe antibiotics, sometimes long-term, without a documented medical need, or discontinue treatment altogether.
When a physician makes a decision to do the former, they open themselves up to professional complaints and possible penalties.
“It’s a real problem,” she explained. “In some cases, these treatments are successful but they’re loathe to write that down, because it would put a target on their backs.”
In her time with the organization, Sperling said she’s encountered a number of patients presenting with what she recognizes as Morgellons symptoms.
“I haven’t really been able to put my head to it carefully,” she said. “I just know I find it appalling that people who are obviously suffering (..) are not getting better attention.”
Dr. Raphael Stricker, an internist, immunologist, and the medical director of the Alan E. Beer Medical Center in Los Gatos, California, is one of a handful of physicians in North America known to treat Morgellons and has been doing so for more than a decade.
“This is a real disease,” Stricker told the Star in an interview. “The problem is that so many clinicians dismiss it as psychotic or delusional.”
“I have patients in my practice who are teachers, nurses, doctors, lawyers, you name it – the point being, they’re just as sane as everyone else,” he continued.
Stricker, who’s published more than a dozen peer-reviewed articles on the condition, has also concluded the condition is not of the mind, but rather, associated with an underlying spirochetal infection.
“If there was more awareness or acceptance of that, then I think we’d see more research or investments.”
Fuelling a lack of awareness, at least in part, said Stricker, is a 2012 U.S. Centre for Disease Control study that found no evidence that connected Morgellons to any kind of infection.
“It was terrible,” he said. “They didn’t use the proper criteria (to assess patients) and they basically came up with nothing.”
Despite the study finding no correlation between Morgellons and Lyme disease, it still refers patients who believe they have the conditions to Stricker as a leading expert whose first course of treatment is to assess and, if detected, address underlying spirochetal infections.
“When patients do find someone like me, and there are several practitioners out there, someone who really believes them, they’re very grateful,” he said. “And they normally do quite well after treatment.”
Still, Morgellons remains polarizing for practitioners. One of the most recent pieces of literature on the condition, co-authored by a physician in Toronto, describes the disease as a “delusional infestation” and recommends low-dose antipsychotic agents as the first course of treatment.
While the authors acknowledge a school of thought linking Morgellons and spirochetal infections, they conclude “there is no evidence supporting these claims.” When reached for comment, the Toronto physician declined to answer questions about the paper on the record, citing backlash faced by colleagues.
The controversy surrounding Morgellons has saddled patients with a stigma, said Tycholaz. He believes it’s the reason he is still seeking answers and treatment after more than a decade.
Tycholaz was finally diagnosed with Lyme disease in 2012, when the blood tests he conducted with Middelveen were sent to a lab in New York for private testing. When he brought those results back to his family physician, he was prescribed two weeks of antibiotics. However, having been infected for years, the short course did nothing to alleviate his symptoms.
It took until 2020, 12 years of being on waitlists for varying specialists, until Tycholaz managed to convince an infectious disease specialist in Vancouver to consider further antibiotic treatment; but only if he recreated the private testing that had already confirmed his Lyme disease; first with Middelveen and then again, in a Canadian lab.
Tycholaz got the results of those at the beginning of December, 15 years after he was first bitten by a tick: once again, the testing confirmed an active Lyme infection.
“I should be jumping for joy,” he said. “Every single day, all day, I’m constantly thinking about how to strategize my approach to advocate for myself.” As of publication, he still hadn’t sent the results to the infectious disease specialist. He will, he says; “I’ve just been taking a week to try and put together the exact right words.”
Tycholaz considers himself one of the “most validated Morgellons patients out there,” having been featured in three academic papers on the condition now, but if he still lacks answers, he worries for the outcome of those without access to private testing or the research of a dedicated microbiologist.
In recent years, Tycholaz has penned letters to both provincial and federal representatives trying to secure investments into research and treatment, but has received only standardized responses. While starting to lose confidence, he says he’ll still continue to exhaust all options.
“If this is the story you’re hearing from me, imagine you’re not in scientific studies, your doctor doesn’t believe you or hasn’t seen you go through this,” he said. “If it’s this hard for me, nobody with Morgellons in Canada has a single hope.”
“But, if I keep doing this, if I try everything, maybe I can prove that it’s hopeless and if I prove that, maybe the government will have to do something.”
