A lady in her 40s saw her daily life turn upside down after being bitten by a tick infected with bacteria associated with Lyme disease. Overwhelmed by pain and constant fatigue, she is unable to find a treatment to relieve her in Quebec and must turn to Mexico.
Warning: passages of this article refer to suicide.
A mysterious evil
Charlotte Labrie-Gagné cannot say for sure when she was bitten by a tick. It was unexplained symptoms that made him suspect something was wrong.
“I started with a toothache, it progressed to the ears, then it became migraines, she says. I started having muscle aches in different places every day and getting more and more tired.”
The symptoms worsened, to the point where she was no longer able to look at a light source or drive. Some days she can’t even walk.
• Read also: Have you been bitten by a tick? Here’s all you need to do
After three years, a more precise screening test finally allowed him to obtain the official diagnosis: chronic babiesiosis-bartonellosis.
It is a co-infection of Lyme disease, a bacteriological infection caused by a tick bite, explains Dr. Amir Khadir, infectiologist-microbiologist at the Pierre-Legardeur Hospital Center.
“When a tick bites a human, it can transmit different bacteria to them. It could be Borrelia burgdorferi, which causes Lyme disease, but also Babesia and Bartonella.”
Few accessible care
To be able to identify the origin of her symptoms, Charlotte Labrie-Gagné had to pay $2,800 to be tested in the United States. Before the diagnosis, she claims to have had difficulty being taken seriously by the specialists she consulted in Quebec.
“They look at us and we don’t see that we are sick. It’s hard because they don’t believe us. There are times when I said to myself that I would have preferred to have cancer, because at least we know that it exists and the procedure to follow is clear, ”she confides.
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A private infectious disease specialist allowed him to alleviate his symptoms thanks to a long-term treatment with antibiotics, but this specialist no longer practices today.
“If I am able to be minimally functional, it is thanks to these antibiotics. I only have two renewals left and no other doctor agrees to prescribe it for me,” worries Charlotte Labrie-Gagné.
Courtesy picture
Treatment in Mexico
Without a doctor for babiesiosis-bartonellosis for a year, she undertook research to find other treatments. “I found some in Europe, but they cost US$150,000,” she says.
However, it is necessary to be particularly careful with “the treatments developed in the parallel private medicine of certain countries”, insists Dr. Khadir. He regrets that the plight of people who have nowhere to turn is exploited for treatment at extremely high prices and which escape regulation.
• Read also: Why do women suffer so much from chronic pain?
While talking with other people with Lyme disease and its co-infections, Charlotte Labrie-Gagné learned of the existence of a treatment protocol offered in Mexico at a lower price. The treatment, called the Stemaid protocol, aims to revitalize the patient’s immune system through the injection of stem cells, as well as the use of ozone and herbal medicines.
Dr. Khadir declined to comment on the Stemaid protocol, which he knows little about.
To be able to pay for the treatment, which costs more than 60,000 Canadian dollars, the spouse of Charlotte Labrie-Gagné launched . On the campaign page, she informed donors that a place had become available in the clinic for May Day.
“I want to get better to fight for others”
The hope of being able to receive the treatment in Mexico keeps Charlotte going. However, the pain and isolation are hard to bear.
Previously very active, she sometimes spends her days lying in the dark, because migraines and fatigue do not allow her to do anything else.
“I can’t even take care of my dog, my boyfriend has to do everything in the house. As long as I continue to have pain and be useless, I thought of asking for medical assistance in dying,” she admits.
“You just want to stop hurting, you can’t stand being in your body anymore. Just in my group [de personnes qui souffrent de la maladie de Lyme et ses co-infections], there have been six suicides in 2 years. Amelie [Champagne] was the last. There had to be deaths for us to be interested in our fate, ”laments Charlotte.
This is another of the motivations behind her choice to seek treatment in Mexico: “I want to get better to fight for others.”
Why is it so complicated to have prolonged antibiotic treatment?
It is the result of “one of the most stubborn controversies in modern medicine”, according to Amir Khadir: the “”.
During the 1990s, the Infectious Diseases Society of America (IDSA) refused to officially recognize the chronic forms of the disease and, therefore, recommended courses of antibiotics over 2 to 6 weeks.
Although organizations such as the National Institute of Excellence in Health and Social Services (INESS) in Quebec have since recognized the chronic form of the disease, doctors remain reluctant to prescribe long treatments.
However, prolonged antibiotic treatments for more than 6 months are necessary to eliminate dormant bacteria in the patient’s system, says Dr. Khadir. But more research is needed to know the precise number of months that antibiotics should be given, he adds.
Quebec in the eye of the storm
The province will need to prepare for many more cases of Lyme disease in the future.
“Ticks move with the animals they feed on. These animals are moving further and further north because of climate change. If Quebec is not already in the eye of the storm, it will be very soon,” warns Dr. Khadir.
• Read also: 5 things to know about ticks and Lyme disease
In his opinion, it is essential that health professionals be more aware to better diagnose Lyme disease and its co-infections: “For 40% of patients, biological tests will come back negative. Doctors need to know better how to recognize the symptoms.”
IF YOU NEED HELP
Quebec suicide prevention line
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