Still "no Lyme disease in Alberta or BC"...so may be back to having no GP

I've moved recently, and tried to find a new GP in Canada. It's really hard to find ANY doctors accepting new patients, but I found one a couple of months ago.

I decided lying wouldn't be in my best interest, and so I told her my history with Lyme disease and that I was under treatment still. She said she didn't know much about it but in school they teach to treat even the suspicion of Lyme disease. But she wanted to refer me to a "specialist".

Well..I guess the specialist was an ID doc who called her up to say that he had specialised in Lyme disease in both Alberta and BC and had seen no evidence of Lyme in either province (even though there are news articles about finding Lyme in dogs and rabbits in both places everywhere, and even though coastal BC is supposed to be Endemic), so he wouldn't even see me unless I had a positive ELISA and Western Blot through Canadian labs.

My Igenex was negative, so I'm doing the test, but I don't have much hope.

I didn't say very much - I wish I'd said more but I got too emotional. When I told my doctor that "my dog can get Lyme disease in Alberta but not me" her response was that this other doctor was the expert.

Then she went on to tell me how she'd test for Rheumatological stuff (I've been tested for everything a million times. Always negative for everything) and refer me to a Rheumatologist. I told her that I'd never tested positive for anything, and she said you treat the patient not the blood test. Oh! So you treat the patient EXCEPT when it is Lyme, and then you do anything but.

I don't even know what to do now. I don't want to get labeled with Fibromyalgia or crazy-disease, or waste more time with specialists when I KNOW WHAT IS WRONG. But a) my doctor seemed good until this and b) I NEED a GP. I am not sure exactly what I want to do. I guess I could book an appointment for next week and go back and talk to her...but that means missing even more work. But if I refuse to see the Rheumie and keep treating Lyme, I am worried it will desultory whatever faith my GP has that I am a normal reasonable person...and maybe even make her dump me.

I am so frustrated. I can't believe the SPECIALIST is refusing to see me! This pretty much crushes any hopes I might have had of ever getting a Canadian doctor to treat me.

I'm AB, and there is an ILADs trained ND I see. So I do get treatment for Lyme, and I am not going to stop doing that. The problem was I didn't have any sort of doctor at all- I was going to drop-in clinics all the time, which was terrible. So I FINALLY found a GP AND she was a woman (I had been looking for more than 8 months for a doctor), and I decided if I was getting a GP, I probably shouldn't start off by lying, so I told her about Lyme.

So then she wanted to refer me to a specialist, since she didn't know much about Lyme....and that is where I am at now. I was hoping she would treat me. Now I feel like she won't (the difference in the way she talked to me before and after talking to the ID doctor was HUGE), but I don't want to lose her as a doctor entirely, or have her get a negative opinion of me that affects how she treats everything else I bring to her.

So i don't know what to do...Doctors appointments stress me out a lot, especially when I suspect they won't go well. And I can't seem to get any better at taking a doctor telling me I'm crazy, or making fun of me...so if I had a choice I wouldn't do any more referrals, but I wonder what that looks like from my GPs perspective.

The issue isn't the Lyme treatment, but everything else, and my future in the Canadian medical system...

Yeah...I need to have a good sit down with my GP and see if I should go back to looking (which could mean a year or two with no doctor) or not. I thought the Infectious Disease doctor appointment would be bad, but I thought I was prepared. However, even just learning he wouldn't see me sucked...I didn't say nearly as much as I wanted to because I was crying. So I will have to go back when I am calm.

At the least, I am going to phone and ask my GP to add on tests for Bartonella, Erlichiosis etc., since they are all on the form for the Lyme test (but Lyme isn't. They have to write it in. Because that is how rarely doctors even TEST). If I get a positive test in ANYTHING it won't help with the ID doc I think, but it will probably help with my GP and just for me too.

I just can't believe doctors are allowed to act that way. If I didn't have my ND, or couldn't afford to pay for treatment through her or an LLMD in the US, I think that appointment would have done in my in. It would basically have been a sentence to slow death via-Lyme disease. THAT is why suicide is so common with Lyme patients, and THAT is why I don't understand how doctors can get away with it?? In what world is that ethical?? In what world is that HELPING me in ANY way?

Anyway, things aren't all bad. I just REALLY need a public system GP, but am pretty burned out. I went almost 3 years with no GP and it was terrible. If anything actually goes wrong, it is incredibly difficult to find out what it is and get help. But I can and will keep treating for Lyme. Just not in the Canadian health system.

Oh yeah- and to make the day better, after work, my old supervisor (who I like and get along with) called me up to say he could see some facebook posts that looked "sensitive" and that were in Lyme groups and I probably didn't want public.

I have NO IDEA what he could see...I mean, he could see stuff I posted on people's walls, but I thought that was it. My sister even checked and hardly saw anything. And I am very careful about what I post on facebook. So I think it was something pretty innocuous, but because it related to my health he wanted to call. I don't think HE had a problem with it. He was just being nice. But it sent me into a good 2-3 hour freak out about what was so wrong....and it made me want to drop all the plans I had for Lyme advocacy. I was just starting to think that it was time to screw trying to keep my name out of things and raise some heck...but now I feel like I can't let my name pop up in association with Lyme anywhere!

Plus, I am having a 4-week flare. So overall, today was a pretty horrendous day. Especially going back to work and trying to hide the fact I was still in tears from my appointment. Tomorrow will be better. This isn't the end of the world- it just seemed like it today

Yeah...I thought I had him on super strict setting. Obviously I didn't. He isn't an official supervisor- he is actually a pretty low-level engineer, but he was assigned to mentor the brand-new engineers in his group. So the potential ramifications are pretty small...but I had just been extremely worried about something like that, and so when he called I totally freaked out...I didn't want anyone at work to know I had Lyme.

I got my sister to help me and I figured out my security settings now. Not sure what went wrong, but now all he can see are my status updates, which are never about Lyme.

Zeusy hi, I have a GP but would like another and I dont know how to find one.
I was bitten by a tick years ago and had what I now know is a a bullseye rash. Textbook stuff.
Despite having mountains of symptoms - almost all of them it seems, that went away with 2 1/2 years of treament in the USA, my gp says its not lyme. And that he went to a 'do' in Vancouver where they said that chronic/longterm/late stage lyme simply does not exist.
There is a good ND in our town who treats lyme and has several lyme patient. However the cost is huge and I simply cant afford it.
My gp looks at me on our near weekly visit, bogged down with all my 'issues', and says he doesnt know whats wrong.
I am so sick of our Canadian system. I have been hung out to dry but have not yet learned my gp wont/cant help.
I wish you good luck with your search. hugs

Thanks Traveler.

Yeah- my intention was to see if I could get my GP to treat, but mostly just to get a GP to do GP stuff! But she wanted me to see the specialist as soon as I mentioned Lyme. So I will be going back to sit down and talk to her, and explain my situation and ask her if I get treatment from another doctor for Lyme, would she be willing to keep seeing me, and would she be willing to NOT write me off as the crazy patient. And my psychologist has volunteered to phone in support of me if I need. I'm not getting my hopes up, but I am going to try.

I thought about lying, but the truth was not only am I ON antibiotics right now, I was on them for 2 years. That is a significant bit of my medical history, and I didn't want to leave it out and handi-cap my doctor. But if this doctor dumps me I will be leaving out the Lyme bit.

Concordefan

I hear you. The situation is the US is pretty terrible, but Canada's is even worse!!

What province are you in? The advice I have gotten, or can give you from experience is that a) South African doctors are more likely to be open minded and b) sometimes younger/brand-new doctors are less likely to be biased. But in my doctors case, it also means they don't see the bias that exists in the medical community.

I could try to help you out to find a more affordable ND...The one I see treated Lyme (ILADs trained), and charges about the same as other NDs. She also uses a more "traditional" approach (aka antibiotics). But I know she mentioned several NDs have popped up where I am who all use alternative treatments (like HBOT) that are CRAZY expensive. My ND is quite a bit cheaper than seeing and LLMD in the US. There are limitations to what she can do, but she CAN prescribe antibiotics.

Zeusy, It is documented in the BC Health Guide that Lyme DOES exist in BC. I would say to that stupid doctor: "I thought it was common knowledge, since it is clearly stated in the BC Health Guide that Lyme is in BC."

Having said that, I saw a GP in West Vancouver who said to me! "There's no Lyme in Canada. Maybe in the Dakotas, but not here."

I played dumb and polite then, but I'm tired of stating the obvious. All of these "rules" surrounding Lyme are in place so that insurance companies don't have to pay out.

Our lives do have a price ticket, and Lyme treatment is cost prohibitive. Imagine how much money Big Pharma is ranking in with all of the pharmaceuticals prescribed for pain, depression, nausea, fatigue...

I am seeing an LLND in BC. I also have a GP who I have been with for about six years. My initial diagnosis was with a Rhuemie as Fibromyalgia/Chronic Fatigue. That label has stuck with me and according

to my GP, is the cause of all my symptoms. It doesn't seem to matter what it is, he says "It's part of your Fibromyalgia", as like everyone else, I have been tested inside and out for various things, all

negative. It was this GP who agreed to take my blood and sign my acquisition for Igenex after I had received a negative Canadian Elisa. He agreed after I begged him. He was very good and took my

blood for the test as well, as I am sure he didn't want me to take it to a lab with his signature on it. (of course I would have had to pay for that). The tests came back Igenex and CDC positive IgM and

both negative IgG , and he admitted that he didn't understand how to read the band results. He then set up an appointment for me with a ID in Vancouver, and you all know how that went! What he did

do for me though, was agree to consult with the dear Dr. M. here, and gave me a script for Biaxin and Flagyl for 30 days while I waited for my ID appointment. I thought that was good for a GP around

here. I then researched for a LLND here, and I have been treated by him for my Lyme for the past year. I still see my GP, who knows what I am doing. I let him know what abx I am taking because I

think it is important  that he knows. I go to him with concerns and for lab testing. I don't think I could afford to have all my labs done with the ND as I would have to pay for all of them. He still calls my

conditions "Fibromyalgia", which I just go along with, but I seem to see a knowing look in his eye sometimes, like he is winking at me. Not sure, but once he actually told me he thought I was doing the

right thing!  He kind of said it quick before he left.  I read on Zeusy's comment above, that for some reason South African doctors are more open minded. I was wondering where that came from, as my GP

is South African.

I hope you find a GP who will work with you Zeusy.  Keep looking. 

Post Edited (Hopeful Maxine) : 3/15/2012 1:41:10 PM (GMT-6)

Yes, I have no idea how being South African would make a doctor more liberal, or any other race for that matter.

Isn't it sad that you have to try and find a liberal doctor to treat a disease you have!

Sorry! I wasn't trying to be offensive. Someone at canlyme actually made the suggestion to me that I try to find a South African doctor for that reason- that is where it is coming from. I hadn't heard it before, and I don't know where they got it from, but I assumed they had some sort of experience to back it up. I don't think it has anything to do with race so much as education. (In fact, I think that while South African is a nationality, it is no more a race than Canadian is. There are the original inhabitants of South Africa, the dutch settlers, Other settlers...all different races).

Canadian and American doctors are trained in very similar or identical ways, but other countries have different educational methods. I kind of assumed that maybe South Africa is more open to Alternative medicine. While the basics of medicine are generally the same everywhere, the details and what is focused on, or accepted, changes a lot from country to country. so while being of a certain race wouldn't be a good indicator of how liberal a doctor was, where they were trained would be.

And my GP refused to consult with Dr. M. in fact, when I went back, she refused to listen to anything I said. She said that while she wouldn't stop me from getting Lyme treatment on my own, the expert had spoken and whatever information I had was not as reliable.

My health coverage sucks, so my ND is not covered. But I am lucky because she trained with ILADs and follows their guidelines (including antibiotics)

The real kicker- this "expert" also told her that the combo of ELISA and Western Blot is 100% accurate- it will catch Lyme 100% of the time. I tried to argue with her on that, but once again, the "expert" won.

Hi Zeusy,

No apologies are necessary! I am admittedly oversensitive because I had a doctor in the past who was South African Dutch, who I thought was quite liberal/open-minded until Lyme disease entered the picture. During his absence, I saw a locum family doctor who suggested Lyme as a possibility, and recommended that I see Dr. M.

Also, I have been meaning to respond to you prior, which I should have initially; however, I'm now strapped for time. Since Lyme has affected my brain, I will have to re-read this thread, but your case is interesting.

Regards,
Cara