“I think we are in the middle of a Lyme disease firestorm.”
Jennifer MacLean, left, and Amy Hayne-Desjardins, right, are planning an information session Sept. 6 at the Pictou County Wellness Centre with two physicians from the United States who diagnose and treat Lyme disease.
UPDATE: The September 6 information session at the Pictou County Wellness Centre will take place from 4:30-6 p.m. for Health Care Providers and 7-9 p.m. for the general public.
PICTOU, NS – Amy Hayne-Desjardins’ life took a dramatic turn a year ago when her health started to rapidly decline.
The mother of two small children who lives in Little Harbour, N.S. said she started experiencing fainting spells, loss of peripheral vision, insomnia, constant ringing in her ears, numbness in her hands and feet, brain fog as well as losing her ability to speak clearly.
It got the point that she had to hire someone to look after her and her children.
“After ruling out numerous illnesses including a brain tumour and Lyme disease, and after two separate courses of antibiotics treatments at 28 days each, my physician came to the conclusion that it must be MS (multiple sclerosis),” she said. “As a mother of a one and five-year-old I was scratching at the walls for answers and had my suspicions of an MS diagnosis. I started researching and came to the conclusion that I would send my blood work to a lab in California for a much more sensitive blood test than we have available in Canada.”
Hayne-Desjardins said these tests came back showing she had Lyme disease and two co-infections, but when she took the results to her own local doctor, she was once again told this was not what she was suffering from.
“My local physicians were completely unconvinced that it could be Lyme and told me that I was on my own and in denial and that I should take my health more seriously,” she said. “By chance someone told me about a doctor in Maine who was able to help. A year later, I am not free of Lyme, however, I have reclaimed a huge part of my life and have my health back and now have the energy to advocate for others and my children. “
Hayne-Desjardins made a presentation Monday to the finance committee of the Municipality of Pictou County because she wants others to know that there is help available for people suffering from Lyme disease.
“I am sure there are many other people in the community who had a similar misdiagnoses like mine or have had treatment and think the battle is over, but it is not, “ she said, adding that one of her children was born with Lyme disease because it can be transmitted in utero or through breast milk.
“Up until that very moment I was unaware you could pass it on to a child and it was a devastating moment for me. “
Hayne-Desjardins was joined by fellow Pictou County resident Jennifer MacLean, who unlike Hayne-Desjardins, received a positive Lyme test in Nova Scotia, but is also receiving treatment in Maine.
MacLean said in 2018 she was diagnosed with acute kidney function problems and was hospitalized twice, once in April and again in November. In December, a rash on her arm was getting larger, but nothing was done to look into its cause and when she returned to the local hospital during the same month, she was given more medication to treat a urinary track infection.
“Three days later I went to the Queen Elizabeth II Hospital in Halifax and the doctor there said to me, “I think you have Lyme disease”.
MacLean said she was sure that she didn’t because she didn’t’ remember being bitten by a tick, but a month later her tests came back positive. Since she didn’t have a family doctor, she was told to go the walk-in clinic to receive her prescription for antibiotics.
“The doctor there said, ‘I know nothing about Lyme. I will give you two weeks (antibiotics)’ and I said, ‘that is not the treatment that CDC (Centres for Disease Control and Prevention) recommends for Canada’. I told him I needed at least 28 days and he said he would send me to infectious disease in Halifax. It took me 15 weeks to get into infectious disease without the proper treatment, so I had to leave my province and go to Maine for it. “
MacLean has been receiving treatment from a physician in Maine since February 2019 and her health is showing signs of improvement.
“I didn’t realize how sick I was until I started to feel better. It has uprooted my whole family. My whole Life. It is just crazy how the doctors here won’t even speak about it. I knew nothing about Lyme until that nurse called me and said, ‘you have Lyme disease’. Nothing and no doctors will even talk to you about it,” she said.
The women say that there are currently 17 people from Pictou County being treated by the same Maine physician and 150 people from the Maritime provinces. They know this because every patient that he sees is asked to place a pin on a map in his office.
Both Hayne-Desjardins and MacLean believe the tests being done for Lyme disease in Nova Scotia are old and not sensitive enough to diagnose positive results. They also said the treatment length they give for antibiotics here is not long enough.
“In Nova Scotia, they administer a two-tier test and it has been proven over and over that it is extremely flawed and not sensitive enough. At best it is 50 per cent accurate, but our health care system in our experience is unwilling to acknowledge that and publicly defends the nature of the test as being top notch,” said Haines.
Both women say it has gotten to the point that their own physicians will not entertain any discussion with them about Lyme disease during their appointments so they both continue to drive seven hours to Maine and pay $500 a visit to see a physician who will listen and treat them for the disease. They say this physician has the ability to prescribe their antibiotics in New Brunswick which are then shipped from a pharmacy there to their doorsteps.
“Lyme disease is extremely hard to diagnose in a place that doesn’t have proper testing. Extremely hard to treat when our treatment protocols are out of date and it is extremely easy to catch and have a misdiagnosis. I think we are in the middle of a Lyme disease firestorm,” said Hayne-Desjardins.
To help raise awareness about Lyme disease and the need for better testing and treatment in Nova Scotia, the women are bringing in two physicians from Maine as well as Vett Lloyd, who holds a PH. D from Mount Allison University in New Brunswick and is studying the transmission in ticks. She is currently accepting ticks for testing and more information can be found at https://www.lloydticklab.ca/
“She has opened her own lab for anyone to send a tick to. She will call you back and tell you if it has Lyme,” said Haines.
MacLean and Hayne-Desjardins have booked the Pictou County Wellness Centre for Sept. 6 with the hope that a session can be held in the afternoon for local physicians and another in the evening for the general public. The times and details of the event are still be determined and will be announced at a later date.
“My biggest problem right now is cracking a nut of getting physicians in a room to hear outside doctors speak,” said Hayne-Desjardins. “We get push back from physicians. That is a problem.”
Council unanimously passed a motion to send a letter to the Nova Scotia Health Authority as well as the Aberdeen Health Foundation requesting that local physicians attend the September 6 seminar. A physician with the Nova Scotia Health Authority is expected to speak on ticks and Lyme disease during July finance meeting for the Municipality of Pictou County.
“Your firsthand account of how our system is failing you raises some very serious questions”, said Finance Committee Chair and District 7 Coun. David Parker.