could a teenage bout with the epstein-barr virus have led to ms for michele clarke?

on her usual jog home from work in victoria one drizzly day in 2004, michele clarke stumbled, which was not usual. feeling dizzy, she walked the rest of the way, looking forward to a warm bath on that cool day.   

“i also felt sick, my vision was a little wonky and i was getting a migraine,” she says. “i hadn’t had severe headaches like that before. i went to work the next day and my head was pounding so much i couldn’t see my computer screen clearly.”  

since her regular doctor was away, she went to a walk-in clinic, where she says the doctor diagnosed an ear infection — without checking her ear — and sent her away with an antibiotic. when that didn’t help, she went to a different walk-in clinic, where that doctor also diagnosed an ear infection — also without checking her ear — and prescribed a different antibiotic.  

after a week, her gp returned and did a neurological exam. suspecting a tumour or aneurysm, clarke, who was 30 at the time, was admitted to hospital immediately for further tests. “apparently, my eyes weren’t moving together,” she says clarke.  

the next day, she was told she had multiple sclerosis (ms), an autoimmune disease in which the body’s immune system attacks its own tissues. nearly everybody with ms experiences different symptoms — among them are numbness or weakness in one or more limbs, tremors, lack of coordination, blurry vision, fatigue, and dizziness — which is why it’s so hard to diagnose, why there’s no cure, and why its cause is unknown.  

michelle clarke’s dizziness and vision problems were first diagnosed as an ear infection. supplied

the epstein-barr connection 

there are many theories as to what causes ms, everything from genetics to environment to temperate climate (such as canada’s, which has one of the highest ms rates in the world) to low levels of vitamin d and being a smoker, to having another autoimmune disease, such as thyroid, anemia, psoriasis, diabetes or inflammatory bowel disease.  

but now, an old theory is getting renewed focus. recent results from a study at harvard’s t.h. chan school of public health that tracked more than 10 million u.s. military recruits over 20 years suggests ms is caused by the epstein-barr virus (ebv), a type of herpes that can cause infectious mononucleosis, known as the “kissing disease” because it’s easily spread through saliva. in fact, according to biomed central, a portfolio of peer-reviewed journals, more than 95 per cent of us are infected with ebv. not all will contract mono, and very few will develop ms. some will simply carry the virus and not even know they have it.  

clarke did have a bad case of ebv in her late teens, which required a few trips to the doctor as well as the er, a grim harbinger of things to come.  

although the ebv-ms hypothesis is not new, alberto ascherio, harvard professor of epidemiology and nutrition and senior author of the study, said in the report, it’s “the first to provide compelling evidence of causality.”   

and it’s a big deal, because most cases of ms, the researchers believe, could be prevented by first stopping ebv infection. targeting ebv with a vaccine or antiviral drugs, in turn, could lead to a cure for ms. but vaccines have been in development for decades, with discouraging results. now that a connection has been made between ebv and ms (and several cancers), there’s extra incentive to go back to the drawing board. in fact, both moderna and the national institutes of health are currently conducting clinical trials for an ebv vaccine.  

dr. robert carruthers, clinical assistant professor of neurology at ubc, says the most exciting prospects in ms treatment are in stem cell transplant clinical trials. supplied

because ebv is so common and ms is relatively rare, and onset of symptoms typically begin a decade after ebv infection, determining the connection has been difficult. but this new study’s findings “cannot be explained by any known risk factor for ms and suggest ebv as the leading cause of ms,” said the report, which also noted that the risk for ms increased 32-fold after infection with ebv.  

but if 95 per cent of us have ebv, why don’t more of us have ms? another study from stanford school of medicine theorizes that ms patients have antibodies that bind to an ebv protein as well as a protein in the brain and spinal cord, which the immune system mistakenly attacks.    

so, while we wait on that vaccine, there are standard disease modifying therapies (dmts) to reduce inflammation and other symptoms. during a clinical trial soon after diagnosis, clarke, who has a type of ms called relapsing-remitting, was put on a daily injectable drug called copaxone. she quit that in 2008 when it started to cause skin damage.   

she suffered a relapse in early 2009 that landed her back in the hospital, and on various meds via intravenous and central catheter. she also underwent plasma exchange (plex), where plasma is removed, separated from your blood cells, mixed with a protein solution, and put back into your body. clarke says that did help, to the point she was discharged after two months to undergo physical rehabilitation.  

‘my ms is not progressive, it’s aggressive’

but a month later, a severe relapse put her back in hospital for more plex treatments, with only minor improvement. since a clinical trial for stem cell therapy had closed, she was put on a monoclonal antibody called mitoxantrone, which reduced inflammation and symptom severity. in 2015, she underwent treatment with the drug lemtrada, which required five consecutive days of infusions, with effects lasting a year, then a follow-up with three more days of treatments. but because her ms is aggressive relapsing-remitting, she had a third series of three.  

 “[my ms is] not progressive, it’s aggressive,” says clarke, who’s no longer able to work and relies on her former company’s insurance. “when it wants to fight it performs ufc style.”  

stem cell therapy may well have won that fight. dr. robert carruthers, clinical assistant professor of neurology at ubc, says the most exciting prospects are in the ongoing clinical trials with autologous mesenchymal stem cells (msc) underway in nine countries, including canada.   

the potential of these cells led to a joint venture between researchers at ottawa and manitoba universities called mescams (mesenchymal stem cell therapy for canadian ms patients), which aims to reduce inflammation in the brain and repair the central nervous system.  

stem cell transplantation without the chemo

unlike a previous trial using bone marrow transplantation, these participants aren’t required to undergo intensive chemotherapy. carruthers says mscs “are used to reset the immune system and, in a way, have people’s immune systems forget they have ms. there’s little doubt that they’re highly effective [for] people who have very aggressive ms.”  

although the therapy is open to anyone who qualifies, the criteria list is short. dr. sarah donkers, assistant professor, school of rehabilitation science at the university of saskatchewan’s college of medicine, says, “it works well for people who [are] a bit younger, have impairments in multiple systems, and where other dmts haven’t been as effective.”  

multiple sclerosis as a way of life

while those with ms await the results of these various studies and trials, the best ways to manage symptoms are through their prescribed therapies, as well as lifestyle improvements. the wahls protocol , a diet named for the doctor who developed it for her own ms, leans toward meat, fish and leafy green vegetables, and away from dairy, sugar and grains.  

donkers says that while there is no one diet that has shown to be the best, she advises following a proven nutritious regimen, such as that recommended in canada’s food guide which, she says, is “evidence-based and centred around an anti-inflammatory diet.”  

donkers says while dmts help the disease course, those combined with physical activity, walking and balance training are more effective in the long run. “we have some preliminary evidence [showing] people who are more active can decrease their rate of progression. they have a slower loss of walking speed over time.”  

michele clarke was so convinced of the benefits of physical activity that she not only joined the ms society of canada’s time at home program , a free online fitness program for people with mobility challenges, she helps facilitate it. “it’s been one of the biggest parts of my recovery from being laid up in the hospital for months,” she says.  

currently in remission, clarke stays optimistic with what she calls her four p’s: perseverance — “i’m not giving up. i’m stubborn, in a good way;” planning — “come up with a plan, execute your plan;” patience — “change doesn’t happen overnight;” positivity — “you can find the positive in any situation if you try.”  

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