Looking for Canadian input : Survey on the treatment of Lyme disease outside of Canada [that Canadians have had to seek due to lack of help in Canada].

16 Comments

1. I have been getting treatment for Lyme disease for the past 2.5years in the USA. I am nearly symptom free. I have been treated terribly by the medical system here in Canada. Thank goodness there are health care professionals in the US that are willing to treat. It has been a great financial burden on myself and my family.

2. Have to spend thousand of US dollars.Have to go to Platsburg every six months to see a Lyme specialist.o

3. My son sees an LLMD specialist in the states. After 12 years of being misdiagnosed and terribly treated by the medical system in Canada, he was relieved to find someone who understood exactly what is going on — and he has hope he may become fully functional again. After suffering significant symptoms in the fall (dismissed locally), my US lyme test has come back positive and I will start seeing the same US specialist to beginning in March. The personal financial burden is immense (not for the specialist, but for the regular travel, the US pharmacy prices and our lost income), yet necessary. The waste in the Canadian medical system due to misdiagnosis on our cases alone must total well over 300k. Surely, someone in Ottawa and our provincial health systems can start doing the math on these human and economic costs to Canada and Canadians.

4. Canada does not seem to care in providing proper testing for Lyme Disease. Blood needs to be sent to iGenex Lab in the U.S. , and/or Armin Lab in Germany, for proper testing. To this day there does not seems to be any interest in treating this awful disease. The good ‘ol Elisa test is still being used for diagnosis, when it is always comes with a negative result. Shame on you Canada! and shame on Canadian MDs, who are not interested in helping Canadians.

5. You are totally right I am so disappointed that canada has Sooo many people leaving for treatments no help! I’ve gone over 10 years without diagnosis and finally self diagnosed myself! Thanks to avril lavigne she helped me by telling her story! No help no support and no treatment is so frustrating and time is not on our side so I am pretty sure I have irreversible damage already and feel lost!

6. I have been recieving Lyme treatment in USA since 2013. I was misdiagonsed in Canada and didnt believe i had fibro. I was infected @ turkey point in Ontario while camping. Could not work or get out of bed within 6 months.
   I go to the Morrison clinic in NEw York City.
   Dr Moreno is wonderful.

7. Missing from this otherwise excellent discussion is the reality of poverty. What Canadian/Ontarian is going to get treatment in the US when they start out disadvantaged? Or when years of medical denial has landed them on Disability?

   What follows is a sketch of my story. I share it only to add it to these similar records & to extend the discourse. It pains me to contemplate how many are out there, too sick & underdiagnosed to express anymore. At least I’m still fighting – blessed with one person, my mother, who though elderly has never ceased to be supportive.

   For 11 years I have been immediately (& surprisingly rudely at times) shut down by various gp’s & specialists when I try to bring up the fact that a black-legged tick of the known Lyme type, life stage, and even sex, was embedded in my scalp for 24-36 hours. I no longer press the matter. I’ve learned better. I just stop talking & let them keep to their comfort zones – the best strategy for accessing care and staying off their nut list.

   The thing they never get to hear is that I actually extracted this tick myself, still alive, & took it to my original GP in a baggie, alarmed. He THREW IT OUT & informed me nonsensically I’d “probably been bitten by them lots of times”. I had an eerie sense that something was seriously going off the rails in that appointment, but I also knew I had no experience or knowledge to understand where or how. So, knowing nothing then & never having seen a tick despite growing up outdoors & full of nature lore on a small farm, I decided to go with his version for the time being. Back at home I looked up the insect online carefully, learned what it was, called the Lyme Association, and was advised to get amoxicillin asap. I literally had to fight verbally with that GP for the Rx. He’d left for weeks of holidays when I discovered his Rx was for 5 days only. Yet given the fight I’d already had to wage, I saw that it was the best I was going to get. I later found out he was actually supposed to have submitted my tick for Public Health testing. He did do the standard [discredited] blood test, with a negative result. When I became very ill a week later with inflamed eyes & a severe sinus infection (so it seemed), + fever , fatigue, & weakness, he told me it was unrelated to the tick because I had “no bull’s-eye rash” and my illness “didn’t have the right symptoms”.

   Skip ahead 3 years – I’ve developed neuropathy, intermittent astonishing fatigue, recurring kidney infections, IBS, poor balance, poor memory, brain fog, inexplicable depression, joint & muscle pain. He suggested it was menopause, but investigated me for MS & ruled that out. He gave me an IBS Rx that partly helped but notably worsened some symptoms. At that point I saw there was not going to be any great help forthcoming. I let it go and focussed on surviving, fighting fatigue to exercise & changing my diet. These greatly reduced the depression & IBS, now what I would call “in remission”, but couldn’t stem overall gradual decline.

   Skip ahead 4 more years. I was diagnosed through a new GP & rheumatologist with fibromyalgia & chronic fatigue. I had developed in addition terrible unrefreshing sleep, chronic headaches, and other neurological symptoms including dizziness, sensory hypersensitivity, poor balance, bouts of rapid breathing, & a kind of intermittent global anxiety. Just lately I’ve had an incident of tremor and one of shakes.

   How tempting to label me neurotic, especially because I’m a middle-aged female! I’ve tried on that shoe many times myself – it just never seems a sensible fit. Only lately did I learn that I’ve had MRI anomalies for at least three years. My current GP & neurologist (different & quite fine, but limited by the training allowed), having ruled out MS again, agreed they “don’t know” what these anomalies on my MRI are but that they must be insignificant. Only because out of the blue I had been passionately encouraged to consider that I might have Lyme by a friend who never knew of my tick [and also again by my redoubtable mother, who noted “Your health’s been going downhill ever since that tick bite!”], I decided to go home & revisit Lyme. I started by looking up my gp’s description of my MRI. It’s typical of my optimism that I was actually SURPRIZED to discover, in a peer- reviewed US medical article, that my MRI exactly matches those of patients with neurological Lyme infection. The bug was on my scalp. Is that significant?

   In the past 11 years I have lost incredible ground. Once a vigorous athletic person of amazing stamina, an avid gardener, I’ve had to give up my job, battle ODSP for 2 of those years for support while requiring more & more help with basic paperwork, lost friends, given up many physical activities I loved, ceased gardening, had to let go of social life, struggled to parent well when my motion & cognition become limited, and landed on Disability at last – someplace I never wanted to live. I also kept up basic exercise as I could, meditated, kept up spiritual community, had excellent psychological counselling when I could risk the cost or pay in-kind, practiced careful healthy eating, & fought to keep sharing my gifts – without which efforts I’m sure I would be much sicker. Eleven years later it appears I can only get realistic testing & treatment in the US at high cost. It’s just not an option. Particularly with a special needs child to consider. I see some have run crowd-funding campaigns; my own foray into that arena did not pan out. Possibly due to an increasingly small social circle?

   It’s vital to emphasize: I say all this without self-pity and only for the record. Despite everything, by fierce effort I have maintained my writing brain – once my fulltime job – & with it, my fighting spirit.

   Still, this email has taken hours & I will be done for the day when I finally press Send. So the question stands: What Canadian is ever going to get treated for a curable condition when cures are only available outside the country at one’s own expense, and one is living due to that illness below the poverty line? Where are the Disabled of Canada, some of whom are surely disabled by Lyme denial & inadequate testing, meant to go other than as quietly as possible into oblivion?

   We need to question a Canadian health establishment that’s fine with protecting short-term dollars by engaging outdated guidelines & threats of professional repercussion, while watching possible Lyme patients sink into costly chronic illness. Here’s the problem: an “undiagnosed Lyme patient” or even a diagnosed one is just a Debated Statistic. But a person living with untreated Lyme is a suffering fellow human being with gifts, skills, hopes & dreams whose loved ones also suffer by default.

   We’re fighting to prevent the gifts that we were born to share from disintegrating before our eyes. What is public healthcare in this context fighting for?

8. Hi, I can’t afford to go to states for treatment at this point. Being followed by a naturopath in Ottawa. Saw a infectious disease” specialist” at the Ottawa civic hospital today. Total waste of time. Doesn’t believe that it’s a problem in my area, didn’t ask any pertinent questions such as where I live , where I travel etc . Asked if I ever had a bulls eye rash , then he seemed to want to focus on the fact that I’m on antidepressants ! Also asked if I drink !!! My family physician isn’t helpful either . Good thing for my naturopath. I bet your story is similar

9. Thank-you for sharing, my story is similar. The part that really irks me is the condescension towards middle age females. I hope in our time things change , I can’t afford the States either but I am seeing a naturopath which is a financial burden also .

10. Is there a list of naturopaths that treat Lyme disease or does one just call around? I am considering going to the US but don’t even know where to start calling to set up an appointment. So frustrating.

11. I am so scared…I have just received the Lyme diagnosis..I have been battling rheumatoid arthritis using immuno suppressants for 30 years…on odsp…no clue where to turn..depression is knocking at the door…what to do…where to turn…do you have any suggestions?

12. Call CanLyme at 250-768-0978 Jim

13. Similar story for me. Frustating how canada’s medical system is leaving you standing in the cold. You should expect more expertise in a wealthy country as canada.

14. I have lyme disease and I am being treated in canada at The Centre for Biological Medicine
    I have major parasite invasion
    Lots of photos
    The ontario health care system has completely ignored my number one symptom
    Something moving pinching biting me inside

    Can I still fill survey the Centre for biological medicine is a blessing

15. Just curious
    Where did you go in the states and what are the costs. If you need iv antibiotics how is that done when you ate
    Back in Canada

16. I found a great Naturopath that specializes in Lyme disease in Burlington Ontario! Her name is Kim Townsend:)

Comments are closed.