CANADIANS - How Did You Get Help??

Hello, I am looking to hear from other Canadians that have had diagnosed or treated for Lyme, and whether you were able to get help here in Canada or had to travel to the US. I am not only looking to hear from Canadians, if you have ideas or suggestions I would love to hear from anyone.

I have posted in another thread www.healingwell.com/community/default.aspx?f=30&m=2034765 My symptoms seem to be consistent with the Lyme symptoms, however I am not getting any help from my current doctor. I have been tested for Lyme just recently (after being ill for several years). I have requested to at least try treatment but my doctor refused. I know how inaccurate the testing can be and know that I need to see a LLMD.

My doctor will not refer me to an LLMD because he feels that I don't need to see one. Does anyone know of anyone in Canada or the US that is currently accepting new patients without a referral?

Also, I am interested in going someplace that will take the time to run other tests to see if there is something else going on other than Lyme. I am at the point that I need help or whatever is going on will kill me.

I feel I need immediate treatment if this is Lymes disease, but I am not able to get the antibiotics. Is there any natural treatment that will help in the meantime?

I would really appreciate any and all help I can get.

Thank-you very much.

hi there,

I am sort of in the same boat as you right now, I too live in Ontario and have been ignored by my doctor for years.....pretty sure she thinks I'm a hypochondriac ...I was really tired of that so I went to a Naturopath in Ottawa, she did meridian testing on me and came out with Lyme disease, I had never even thought of that as a possibility, but I was bitten 15 years ago....around the time all of my problems started.
she gave me a referral to a colleaue of hers in New York which I'm waiting to hear from right now. In the meantime I went to a new clinic at my work and the doc there sent me for blood tests for Lyme and lupus among some other things, but I'm not holding my breath for a positive here in Canada. They hardly believe we even have it here. I'll find out if the doctor in New York is taking new patients without referrals when they get back to me and let you know.

So ...I'm wondering if the doc you've been trying to call is the one that I've been referred to because they aren't returning my calls either....very frustrating !!  I'll keep you posted if I ever get in touch with them....:(

I am in Surrey and looking for a LLMD. My family Dr. is educating herself, said she was, and will look for a Dr. I will see her next week and share what I have found out and hopefully she will share with me. Reta, I did try to sign up with Canlyme, sent email to tell me they had received and would send info so I could sign on. Has been over a week and no email. Tried to sign on again and said I was but could not sign up. Did send an email to the 2 emails listed re help with finding a Dr., no email. Will try the phone # this week and let this post know if it works or not. Still looking :), Linda

For those who are seeing docs that want to get educated about Lyme and co-infections, here is a post from the "New to Lyme?" thread:

***Places where your local gp (or any other doc) can get educated about Lyme;

www.ilads.org/lyme_programs/lyme_training.html

And here's the other one;

www.turnthecorner.org/content/physicians-training-program

With so many of us having to find a way to get treatment & end up trying to educate the doc we end up using, I thought this would be a really good post to keep here in the "sticky".***

I hope this helps someone!

Pinda:

I live in Vancouver and like a previous poster I go to Seattle for treatment (different doc though). If your MD has questions you and she can also contact Dr. Murakami through his website, Murakami Centre for Lyme. You'll have to fill out an intake form but then he'll offer his opinion (he's retired, sort of...long story).

IGeneX offers a lot of blood tests related to Lyme disease and other tick-borne illnesses, so I'm not familiar with them all.

My LLMD ordered the Basic Lyme Panel (4090) Western Blot IgG, Western Blot IgM, Lyme IFA that cost $260 USD at the time (in 2010).

To the best of my knowledge, the IFA is the equivalent of an ELISA, but IGeneX will do the Western Blot test(s) if it's included in a panel (like the one above) or ordered separately. There are other "panels" that your doctor might recommend in your particular case and/or order separately.

You're right about Canadian labs using the ELISA as a screening test, followed by the Western Blot only if the ELISA is positive. There may be some exceptions to this, but not one that I've heard or read about yet. In theory (but it's certainly not common practice), doctors in at least Ontario supposedly have the right to order the Western Blot test even if the ELISA is negative:

http://www.thestar.com/article/833115--lyme-disease-on-the-rise

Quote:
Still, “the numbers are increasing,” says Dr. David Williams, associate chief medical officer of health for the Ministry of Health and Long-Term Care.

Quote:
Instead of waiting for test results, doctors “should make a clinical diagnosis” when faced with a patient who displays the symptoms of Lyme disease and has been in an area known to have ticks, says Dr. Allison McGeer, director of infection control at Mount Sinai Hospital in Toronto.

Quote:
Both Williams and McGeer say a doctor can order a Western Blot test if an ELISA comes back negative.


Rita

Post Edited (RitaA) : 4/14/2011 2:44:15 AM (GMT-6)

Re: IGenex: I went to the local blood lab, and they drew the blood and sent it directly to Igenex. It has to be drawn on a M, T, or W so it gets to the lab by Friday. My local lab called their corporate HQ, who knew about Igenex and walked us through the process.

It costs a bunch more, but I think it is worth getting the tests for babesia, bartonella, etc., because it can make a difference in how a LLMD will prescribe abx.

As for finding a GP who will prescribe, that is indeed tricky, but I know in BC a couple of us have GPs who are willing to go with recommendations from a retired LLMD (probably the same one you are referring to). Finding such a GP is a challenge; mine was willing from the start to learn about Lyme so I am very lucky, and don't have any advice on how to hunt successfully. I just wanted to say that it is possible.

In BC naturopaths can also prescribe abx, and depending on where you live in Canada that may be an option, as an ND is usually much more open to new ideas than the average MD.

Good lcuk,
Scott