Canadian Lyme Disease Foundation Bulletin Board

[Denise]

I know there are no LLMD's in BC/AB (other than the ND in Calgary), but are there LLMD's anywhere else in Canada?

Someone recently told me they thought there were some in Ontario. If so, wouldn't it be better to go to them than to go to the states?

Or do we really have no LLMD's at all?

Thanks

[NancyB]

There is an LLMD in Ontario, however he only accepts patients from within the province.

The good news is that there are some family doctors who are becoming Lyme literate so there is hope to get treatment in Canada.

[Mister Scott]

I don't think there are any LLMD's in Canada but I could be wrong. As far as finding an LLMD, I found the following article extremely helpful. After only a few hours of using some of the information in this article, I now have a list of at least 5 LLMD's in a neighbouring state and am anticipating more forthcoming possibilities. Good luck!

http://generalmedicine.suite101.com/article.cfm/where_to_find_a_good_lyme_disease_doctor

[CuterWCurves]

My Doctor is in Ontario...

That said... I think there is a growing awareness. I know of an Ophthalmologist, Pediatrician, and Rheumatoligist in the GTA who appear to have more knowledge then I often hear about but time and experience will tell in those cases. The Ped. actually looks at titres, the Rhumey actually runs the s06 and knows a neg isn't the be all an end all, and the Ophthalmologist has an intense screening form for new patients including a number of TBI based questions.... etc. etc.

All three of these were Physicians I stumbled over so to speak so I would like to say that we shouldn't dismiss all because of the many. More and more are learning about this.

[Lyme Ricky]

In Canada, you will not find some other than one in TO (who can prescribe ABX), who, from reports I hear, will only treat Ontarioans. Some negative stuff from some patients recently too. The only other option is a MP-treating LLMD in Vancouver, who can prescribe ABX. Whether you care to accept his treatment or not, he is an excellent diagnostician for TBIDs.

The ND in Calgary mentored under Horrowitz, and has glowing reports from him and ILADS. HOWEVER, as yet, NDs in BC and AB can't prescribe ABX (not sure about the other Provs).

It has been posted by some that some MDs here are willing to treat their patients, but do you want an inexperienced (and possibly skeptical) MD to be treating you with perhaps some consultation or not, or would you want to see an experienced LLMD with ILADS training, mentoring, and approval - possibly with hundreds or thousands of patients treated?

Some patients here have reported that their GP was going to treat them (with/without consultation), who have cut treatment off suddenly, when they didn't see immediate improvement, lost confidence in the patient having LD/coinfections, saw reports of MD harassment, viewed misinformation reports sent by BC Health/BC College, etc.

Even the newly trained and mentored ILADS LLMDs might not be best for extreme, long time chronic patients until they've had a lot of patients under their belt...

If in Alberta, there are two in Montana, one south of Calgary in Bozeman who did the ILADS training under Dr. Raxlen, and is also a pediatrician. There are also the two ILADS-trained Drs. in Seattle, and another south of Seattle who is a psychiatrist.

It has been posted here (or possibly Murakami's site) that there is a Pharmacy (or was it two?) who will rewrite US Scripts and fill them.

[twinkle]

I would like to say that I personally have found this chat room, Board or whatever to be a wonderful source for all kinds of information. Thankyou for posting it as a Lyme doc reference!
Suite 101.com-- good link and good article. twinkle

[Lyme Ricky]

I neglected to mention in my previous post that I have a list of about 40 ILADS-trained and approved LLMDs (Mostly US) from ILADS, and a few ILADS LLMDs who wish to operate under the radar. I have gotten two Can. patients to see them via referral from two other LD Advocacy Sites.

If you are looking for the US referral closest to you, my email is accessible.
If you tell me the area/city where you live, I can send you the cities of LLMDs closest to you, possibly with some ILADS feedback for them.

[lovetootootoo]

After seeing 24 docs over a period of 4 years, it took me becoming incapacitated with severe vertigo to decide that the best for me was to go directly to New York and see a Dr. "C". I should have done this right at the beginning and saved a ton of money. The first visit costs $475.00 and subsequent visits cost $175 but you can self refer. This doc believes that LD blood tests are a waste of money.

I see an infectious diseases doc in Toronto, who is treating other LD patients, but in my case he looked at the negative Canadian LD blood tests and said "they con't support LD". Then I knew, despite him being a good doctor, I could not talk to him about LD. I continued to see him for my worst symptoms (vertigo and dizziness) - that's it. He and I do not talk about LD.

I am happy with my doc in Mount Kisco, NY, however it's getting quite expensive and GWL Disabiolity just terminated my benefits. So not sure what I'll do now.

[twinkle]

Finding a doctor willing to treat tick born illnesses is a challenge here in Canada. I wish I had known this three years ago - I would have saved myself money, heartache, disappointment and depression if I had just swallowed the painful truth and taken my child to the US - which is what I ended up doing.
Then he ordered dozens of tests at US labs. Again, in an effort to save money I parsed through the requisitions, had my Canadian doctor re-write them - (lucky I had someone I'd educated enough to go along...)only to find after MONTHS of effort in getting several tests done - that many of these tests were "esoteric" to the Canadian labs. They put me through another few months of hassles trying to figure out what was going on...
Again I say - newbies, save yourselves the emotional expenditure and if at all possible just go with the US labs and pay out of pocket (if you can at all see how to do this).
One US lab - Quest - has been the BEST for my family - allowing great payment terms, willing to work on things such as monthly plans for payment, and been very supportive and understanding in extending credit.
Meanwhile, I never could get a satisfactory mycoplasma, and several other tests done in Canada. In retrospect, I wish I had just had them done in the US and paid "on time"l.
That said, it seems that there are some Canadian doctors who are treating Lyme and tick born illness "under the radar." Meaning something like "don't tell don't ask"
Now that I have the US diagnosis, I hope to find one of them here who will see my family (we are all infected) and treat.
They are rare - but that said, it is hopeful news that some are becoming educated enough to help - and if themselves ignorant, at least open to getting advice from Dr. M or the US physician.
I hope this will save some people a lot of worry and anguish. I wish I had this advice before I wasted years trying to "fight the system" here in Canada. all the best,twinkle.