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Ashamed of our Canadian Healthcare System & the draft Federal Framework for Lyme Disease

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Posted 2/11/2017 11:55 PM (GMT 0)
Today, I'm even more ashamed of our Canadian healthcare system and federal government.

As a Canadian who is experiencing Lyme personally (and slowly recovering) and in a family member (who is not recovering and his life has been decimated), I had been hoping for some progress out of the completely dark (black out!) situation for the treatment of those with Lyme by our health care providers. I was awaiting the guidance of a federal framework on Lyme, being worked on since last May - where so many Canadians came to tell their Lyme stories in 5 minute sound bytes that sessions were jammed and extra ones ran non-stop.
[Here is one link to their posted youtube stories; if you query around you'll find many, many, many more:
https://www.youtube.com/watch?v=amhDAYgJY8s )

Well, the draft was just released for our review, following 8 months of compilation following last May's consultations in Ottawa.

https://www.canada.ca/en/public-health/programs/consultation-draft-federal-framework-lyme-disease/draft-federal-framework.html

It's a travesty. An utter travesty. Are they completely blind to everything? NOTHING has changed because we have the same folks upholding their same position. A person with "chronic lyme" will never be able to get treatment here.

The #'s they have in the report are laughable -- My son and I certainly aren't in any count and neither are the over 100 Canadians that I've met face-to-face in the last year (who all go to the US for care).

The most laughable part of the draft "framework" is an input report from a group of "experts" that gathered together last June and actually had the opinion of themselves to refer to their one-day session as the "Best Brains Exchange." It was a doozy of a day if you read the notes with those involved and the messaging tightly controlled, with the same old roadblocks put up.
http://www.cihr-irsc.gc.ca/e/49713.html

This framework is a complete invitation for the provinces to continue to do nothing.

Did the folks writing this draft document miss the public forums? Are they completely blind to the clinical evidence that is so clearly out there and the very respectable physicians that are treating Lyme in the US, along with clinical research and Lyme care programs slowly penetrating the leading US research hospitals?

I'm so upset by this. Especially given the current situation with my son where he is in dire need of someone local who could support getting him through treatment. Not an ounce of support to be found here.[url]

There IS a tsunami hitting here .... with absolutely no help.
Posted 2/12/2017 12:13 AM (GMT 0)
It's unfortunate that so many countries of this world model their social programs after the U.S, particularly where we are so sluggish to the point of moving backwards.

I do applaud the very small parts of the medical communities here, and in Germany, and in other pockets of the world for continuing to do their best to help us in spite of persecution.
Posted 2/12/2017 12:24 AM (GMT 0)
LymeMother - I was optimistic when Green Party leader Elizabeth May pushed to get the senate to pass Bill C-442 back in 2014...but as time went on...I realized nothing much was happening.
There was supposed to be a group set up - to improve the testing, diagnosing and treatment methods for those with Lyme disease.

This is a joke. Follow the IDSA guidelines.

What has really changed? pitiful.



my husband and I aren't in the count either. I tested negative with the CDC test...so my number isn't counted...and my husband didn't bother testing with 'our' test...he just did Igenex.

Is there any hope that the ND's back East will get pharma prescribing rights? That has been the answer here in B.C. We do have treatment options...and LLND's who have the option of prescribing antibiotics...and other meds that a 'regular' GP wouldn't prescribe because they don't believe anything is wrong - according to their 'tests'.
Posted 2/12/2017 12:26 AM (GMT 0)
The map shows my area is an endemic area...but there has been NO education...no mention of it...nothing..

No-one I know thinks it's a risk...except for one smart friend I have...who takes precautions...not one other person I know is concerned about it.
She is perplexed that the Veterinary is concerned about her dog getting it, but the GP's are clueless.
Posted 2/12/2017 12:29 AM (GMT 0)
"Unlike other areas in Canada, blacklegged tick populations have remained stable in British Columbia over the past decade. "


That is ludicrous. Really? B.S.

How did they determine this?
Posted 2/12/2017 12:45 AM (GMT 0)
Hi Girlie
Yes, bless Elizabeth May - she must be so disappointed in how this has turned out.

I haven't heard that NDs here on the east coast will get pharma prescribing rights...the system is very dark ages and "proper medical doctor" controlled. Education of family and emergency doctors (especially, functional evaluation of a patient) is critical, but that isn't going to happen if the infectious disease and other docs doing the educating here "don't believe in it."

When my son first started treatment in the US, we did get assigned a young family physician here who was very supportive, saying she could arrange this support and that. A month later, when we came back to update her on our most recent trip down to the states her demeanour had completely changed. You see, she did the great thing of signing up for a local workshop for doctors on Lyme disease put on by the infectious disease doctors here. However, the message she basically got, and passed onto us, was that the US doctors were money-grabbing physicians just taking advantage of folks like us -- and that what was wrong with my son couldn't be Lyme. All sense of support from her was gone. She didn't quite notice the irony of her deriding my Infectious disease physician in the US (who only charges 300 for a two hour appointment, which is more thorough than anything!) -- while at the same time she has about 10 posters in her office advertising for the botox service she offers for a fee over and above her fee-for-service payments for her family practice.
Posted 2/12/2017 12:59 AM (GMT 0)
My husband was born in Ontario, his family is there. He latched onto me for US healthcare OK jK! I know ohip is good to it's residents.

My in-laws are completely isolated from Lyme.
In their minds. It's all around them. My husband's grand daughter runs through the tall grass along the rivers.

When the family came to visit over Christmas, they looked at me, just being released from the hospital, as sick as I was, like I had 10 heads. They have no reason to "get it". YET

Until epidemic numbers are reached worldwide, and someone who has Lyme knows someone who has Lyme, there will be a general feeling of indifference.

I am constantly posting things related to Lyme on facebook. Never a comment, never a thanks for the heads up!

Canada is different in some respects but one thing where it is definitely the same when it comes to paying for pharm.

Here it's the insurance companies. Canada would be the govt. Denial comes easy..
Posted 2/12/2017 1:49 AM (GMT 0)
Yes, Purrrsiankitty,

I'm surrounded by folks around here who have symptoms of Lyme which have diagnosed as all the usual suspects, MS, ALS, Fibro...etc...and just in normal conversation I'll speak of our experience, the types of misdiagnoses that happen and it doesn't click with them, they don't pursue otherwise. One of them actually said that if she stays with the MS diagnosis she'll be able to stay on disability.

I agree with you that Canada's healthcare system is acting like the US insurers by denying - but the continued drain on our health and social services systems from misdiagnosis or no diagnosis (doctor after doctor for their 5 minute fee for service transaction) is insane waste. And they complain about spirally healthcare rates. Our area has some of the highest rates of MS and ALS in the country. What if...?
Posted 2/12/2017 2:12 AM (GMT 0)
Let your anger motivate you into activism....be a small ax for their big big tree...the you tube collection is a great start ...microscopy and alternative treatment modalitys are the future .they cant ignore proof and nor stop the internet .
i am so greatful i didnt buy into the als ms bs here. .here is a guy who was diagnosedwith ms ..he found the spirochetael source of his misery with his own borrelia cultures ...
bless you and your son .../www.youtube.com/user/tylerks279/videos?sort=dd&view=0&shelf_id=0
Posted 2/12/2017 2:22 AM (GMT 0)

LymeMother said...
Yes, Purrrsiankitty,

I'm surrounded by folks around here who have symptoms of Lyme which have diagnosed as all the usual suspects, MS, ALS, Fibro...etc...and just in normal conversation I'll speak of our experience, the types of misdiagnoses that happen and it doesn't click with them, they don't pursue otherwise. One of them actually said that if she stays with the MS diagnosis she'll be able to stay on disability.

I agree with you that Canada's healthcare system is acting like the US insurers by denying - but the continued drain on our health and social services systems from misdiagnosis or no diagnosis (doctor after doctor for their 5 minute fee for service transaction) is insane waste. And they complain about spirally healthcare rates. Our area has some of the highest rates of MS and ALS in the country. What if...?

if only they could see it that way....Denial, the easy way out, for now.. It certainly can't last ... I pray every night for every suffering soul on this forum
Xoxoxo
Posted 2/13/2017 1:54 AM (GMT 0)
Bump for more Canadians to view
Posted 2/13/2017 6:49 AM (GMT 0)

bluelyme said...
Let your anger motivate you into activism....be a small ax for their big big tree...the you tube collection is a great start ...microscopy and alternative treatment modalitys are the future .they cant ignore proof and nor stop the internet .
i am so greatful i didnt buy into the als ms bs here. .here is a guy who was diagnosedwith ms ..he found the spirochetael source of his misery with his own borrelia cultures ...
bless you and your son .../www.youtube.com/user/tylerks279/videos?sort=dd&view=0&shelf_id=0

Thanks for the blessing, bluelyme. Imagine having to be our own diagnosticians! - I thought that's what we paid doctors the big bucks for. My son was very critical tonight so I caved and took him to the hospital; I gave a background, laying out the treatment he'd been having for Lyme (after many years of no diagnosis), including providing a clear photo of his bullseye rash (which emerged 6 months into treatment). The doctor said (couldn't wait to leave the room) -- "well, we'll run some bloodwork and see what's going on." And I said, "Given that the current Canadian blood tests are part of the whole controversy that's not likely to be very productive is it?"

I'm an economist by training and was thinking yesterday of how during the "financial crisis" a few years back all of these renowned economists missed the mark by a mile - many claiming there were no issues and that everything was solid, while those "on the ground" knew better. [ http://knowledge.wharton.upenn.edu/article/why-economists-failed-to-predict-the-financial-crisis/ ]. Within the linked article it says: "We trace the deeper roots of this failure [to predict the crisis] to the profession’s insistence on constructing models that, by design, disregard the key elements driving outcomes in real world markets"

Sort of reminds me of what's going on here. We're in that tsunami I mentioned in another note and the doctors -- who should be seeing clear signs & big neon billboards left right and centre -- well, I don't know where their heads are at but definitely they're not in the real world. Girlie's probably right that they've got too much at stake with threats on their current gravy train to not reinforce the Canadian health care system's denial of treatment for chronic Lyme.



Posted 2/13/2017 11:37 AM (GMT 0)
We see this all the time, I was told i had progressive idiopathic neuropathy and ms. I live in VT a lyme endemic area. I repeatedly talk to my neurologist about lyme but because I tested neg. on the elisa he said it wasn't possible, and never ordered anymore testing. I tirelessly sought dr's and 2nd opinions. If I had listened to my 1st neuro I would be on immune suppressants and getting worse all the time. When my bartonella FISH came back positive I burst into tears, of relief to finally have proof of what is wrong with me! I was spending most days on the couch sleeping, getting up for an hour or so but all the while just wanting to lay back down. Now Im making huge gains, starting to excersise again,some days I can do it 2x per day. I can stay up for hours at a time now with out taking a rest break, my mental state is improving all the time and I can control my anxiety again. I was reading yesterday about bartonella and how it can cause transverse myelitis which looks just like ms in testing, spinal lesion and o bands in csf. Both of which I had. Weather your in the us or canada you have to be your best advocate and you really have to take charge of your health care
Posted 2/14/2017 7:04 PM (GMT 0)
Girlie here it is!
Posted 2/14/2017 7:06 PM (GMT 0)
I don't think that's what I'm looking for...it had more information. I think there was a link to an article..

EDIT: Maybe I just have lyme brain...and it was just that post...lol
Posted 2/14/2017 7:08 PM (GMT 0)
K sorry
Posted 2/14/2017 7:09 PM (GMT 0)
I edited my post PK


it may have just been that post.
Posted 2/14/2017 7:26 PM (GMT 0)
My family doctor actually sympathizes for my chronic illness but he says I'm sorry I understand the situation but unfortunately there is nothing I can do to help you with this. He did get me a referral to a functional internal medicine doctor specializing in infectious disease.

I'm going to bring him Doctor Horowitz book, give him and explain the situation to him... lol I will say "either provide treatment or sign me up for assisted suicide! You take your pick! Or I will be issuing a complaint t!" Haha well I am angrily joking of course but the thought does cross my mind. But ya I'm fed up with the system too ... I think the doctor knows they are opening up a whole other can of worms if they deal with one, it's they don't want to take the ownership and responsibility of a situation and illness they don't really understand.

Even if they did take ownership the quality of the treatment won't exactly be of typical LLMD quality in the US... the closest thing would will be seeing an LLND in BC. I heard there was a Doctor in Calgary that has taken this on though. And ya he basically opened the can of worms now he is really back logged with patients!

Anyways been off antibiotics for close to a full year now and not sure it is the answer after being on them for so long so I really don't even see how they could help unless I choose this new dapsone treatment.
Posted 2/14/2017 7:42 PM (GMT 0)
I think that Calgary Dr. is an ID Dr....am I right, LP?

He treated a lady with LD after she was hospitalized...


I know one LLND who is very, very busy in B.C. (You know him too)...and my last few appt.s were 15 minutes...lol.
Posted 2/14/2017 7:43 PM (GMT 0)
LP - how are you - being off them for this long? Are you feeling well on most days?
Posted 2/14/2017 7:44 PM (GMT 0)
Was it Dr. J who said in Emergence - "The lie is too big to confess?" or something like that?

It will open up the floodgates...and then what? all the people applying for disability...
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