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Posted 2/28/2012 2:15 PM (GMT 0)
Hi all,

I'm usually over on the Fibromyalgia site, but recently my GP and I have suspected that maybe what I've been suffering from is Lyme.

I was Dx'd in March 2011 with Fibro and started on Cymbalta 30mg a day.  The Rhumetologist isn't convinced that it's Fibro, and neither is my GP... I somewhat of a conundrum as far as they are concerned.  I went back with more new symptoms to my GP 2 weeks ago and we talked about the possibility of Lyme.  I can't recall a tick bite, however I did find some kind of insect that looked a whole lot like a tick in the shower with me about 3 months before all my health issues started.  I've visited the Canlyme site and have experienced/am experiencing about 45 of the list of 70 symptoms.  The two things that really caught my eye was the recurrent infections (i have never ending sinus infections and bronchitis on a regular basis), and the chest and rib pain, which neither the Rhumey or the GP could figure out.  I'm in a lot of pain, and so my GP decided to do a Titer test for Lyme (which I now understand is less than conclusive, and I had been on antibiotics 3 weeks prior for a sinus infection and am worried that also might skew results).  Is anyone out there aware of a LLMD in Ontario that I might get a referal to from my GP?  I would appreciate the assistance, even if we need to take the conversation offline to protect privacy issues.

Thanks for any suggestions or assistance.

Kristo

Posted 2/28/2012 3:27 PM (GMT 0)
http://www.health.gov.on.ca/english/public/contact/phu/phuloc_mn.html


Lots of listings here with a phone #.
Posted 2/28/2012 9:26 PM (GMT 0)
just a wild thought but I believe drs in NY ie Buffalo will and can treat canadian patients. Obvioulsy insurance may not cover..but i have a friend who is going to have some blood work done in buffalo labcorp with life extensions as its cheaper and reasonably close
Posted 2/29/2012 12:08 AM (GMT 0)
Hi Kristo!!
Welcome over to this spot on the forum!!! I'm so glad that you chose to not ignore the possibility that there could be something else going on. I have several of the tick-borne infections, and have been given the diagnosis of Fibro - even though we all knew at the time that I had Lyme! It was just because I had 18 out of 18 points, they didn't care that I had pain all over the rest of my body as well!

I would like to suggest that you start by reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

You will need to seek out a Lyme Literate Medical Doctor (aka LLMD) in order to be properly evaluated for these infections. Infectious Disease docs are not up to speed yet with all of the complexities of these diseases, so you will be better served to stay with a LLMD, as these are incredibly complex infections.

These are links we generally offer to our US patients, but you might still want to give them a try! For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at: [email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You need to enable your email in your profile so that members that have suggestions can speak with you off line, as dr names aren't supposed to be posted in any forum here on HW.

I have the name and contact info of a Naturopathic doc in Montreal, Quebec if you are interested.

We are here to help you make sense of the info, answer what questions we can, and to help you through this time!!!
Posted 2/29/2012 2:39 AM (GMT 0)

LLMD's are no longer allowed to practice in Ontario.  There are two LLMDs practicing in upper NY and I think one in the Detroit area.  If you check the Canlyme website and click on the world-wide support finder the volunteer in Ontario can direct you to the closest one.  We go to the one in Buffalo and she has worked wonders with my 10 yo daughter.  Best of luck to you.

Posted 2/29/2012 4:09 AM (GMT 0)
Hey Kristo,

I would not rely on the government of Canada website. Mostly because I live in Canada, and i know there is not a single LLMD here. There is 1 (one for all of Canada!) ND in Calgary, Alberta.

Go to the states. Honestly- I have spent so much time fighting with the health care system, and it is just not worth it to do until AFTER you are better. Don't allow yourself to get more sick while you waste time with doctors.

The so called Lyme disease specialsit (infectious disease doctor) for AB refused to even see me because you can't get Lyme disease in AB or BC.

Go to Ilads.org. They have a link where they will send you the names of LLMDs near you. Get the names of an LLMD near you in the US.

You could also maybe see an ND. I know there is a big push to get NDs educated about Lyme in BC. But NDs can prescribe antibiotics in BC- can they prescribe in Ontario??

If you go to the Canadian Lyme Disease Foundation (www.canlyme.com), they will also be able to give you the names of LLMDs in the US near you.

I know that there are some Canadian Pharmacies that accept prescriptions written by US doctors and re-write them. I had to pay to see my LLMD, but all the prescriptions were covered by blue cross. If you see an LLMD with lots of Canadian patients, they will probably have a system. If you need it, I know a pharmacy in Vancouver that will do it and mail your prescription to you. I used them. Let me know if you want their information.

If you want to fight with the medical system WHILE you are getting treatment from an LLMD, go ahead! That is what I am doing now. But I can tell you that even though I have the support of the Lyme literate ND, and even though I saw an LLMD in the US, and even though I have options other than the public system, the appointments I have had recently with a new GP have been completely devastating. Lyme disease treatment in the US is terrible- in Canada it is just non-existant.
Posted 2/29/2012 1:42 PM (GMT 0)
Wow, thanks everyone for the wealth of informaiton to get me started. This is really helpful and useful information! On a day like today with excrusiating rib pain, I'm glad I have somewhere to start. I'll sift through all the suggestions and also speak to my GP about it at my next visit... I'm very fortuate to have a GP who is open to the possibility and helping me get better... I'm sure this information will be useful to her as well.
Thanks again everyone... will keep you posted on my plight! :)
Kristo
Posted 2/29/2012 2:13 PM (GMT 0)
Kristo,
I would highly suggest that you read through Dr. Joseph Burrascano's paper titled "Advanced Topics in Lyme Disease" as it's a great place to start your understanding, and will help your GP as well. I printed out a copy and took it to my GP, and he was grateful as it covers a lot of the 'basics' of these infections (not just Lyme Disease) as well as some of the options for abx's and some basic nutritional supplements.

It can be found in the 'New to Lyme?' thread, but here's a link:
betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

Hopefully it will help you as much as it helped me!
Posted 2/29/2012 4:06 PM (GMT 0)
Your GP may seem understanding, but he is not allowed to treat using ILADS (long term antibiotic) protocols in Ontario. He will lose his medical licence if he does. He may use IDSA protocols (several weeks abx and treatment is finished). If you have had lyme for more than a couple of months you will probably need longer term abx treatment (as well as alternative treatments which most LLMDs are quite versed in).

Dr Burrascano's paper is wonderful and really gets into the different forms of lyme, and the different types of Abx needed to treat them and the coinfections.

Another great book is Healing Lyme: Natural Healing & Prevention of Lyme Borreliosis & Its Co-infections by Stephen Buhner. Wonderful descriptions of the effects of lyme and coinfections on the body, and the herbal remedies used to treat them. His protocols can be used along with Abx to attack the infection from all directions. Our LLMD uses the Buhner protocol, Byron-White protocol, probiotics and Abx (along with some other things).

http://buhnerhealinglyme.com/

I tried to get several different doctors (walk-in clinics included) to re-write requisitions (originally written by the LLMD in Buffalo) for lab testing so that I would not have to pay for tests out of pocket. This was a problem because tests in Canada have different names and do not go by the numerical codes used by US doctors. You won't get the results for a week and then have to go back to the GP for the results to get for the LLMD. I finally gave up, we were becoming swamped with appointments.

CanadaDrugs.com will fill Rx made by US doctors. These abx are made in Canada, not overseas. My husbands benefits will reimburse for these Abx if the invoice has the drug DIN number on it.
Posted 2/29/2012 6:24 PM (GMT 0)
Hi rowingmom, so are you suggesting going the US doctor route in full and paying for the treatment, or not going that route? I'm a little confused... sorry for the naive response, but this is all very new to me.
Thanks
Kristo
Posted 2/29/2012 6:49 PM (GMT 0)
Kristo, I had no luck finding a doctor in Niagara that would help us with writing requisitions for testing, or Rxing Abx. That is not to say they are not out there. Run it past your doctor, but don't be suprised if he will only help out for the short term, he will not want to forfeit his licence over this. You are lucky to have a doctor that is open to the idea of lyme. That's better than nothing, I suppose. Our doctor used to be the head of the Ont College of Physicians and Surgeons - the group that disallowed use of the long term antibiotic protocol and stopped the LLMDs in Ontario from practicing. He certainly isn't open-minded.

Realize that if you are not fully treated you may have to find a LLMD in the US to continue treatment. There is one Ontario mom on the ACN lyme forum that had a doctor willing to rewrite test requesitions, and until lately, was rewriting Rx for Abx so she was able to charge through OHIP. This doctor is now having second thoughts on the Abx (her children have been on them for 6 months now) and after trying to reason with him, has had to head over the border.

We pay out of pocket for US LLMD office visits ($200/hr), supplements (~$500/month), and testing ($150/month). We are reimbursed for our Abx ordered from CanadaDrugs, but we pay upfront and then send the receipts to my husband's benefits office for reimbursement. It's not cheap, but my daughter's health is at stake.
Posted 2/29/2012 7:06 PM (GMT 0)
Thanks for the clarification rowingmom... I wish the best for your daughter's health.
Kristo
Posted 2/29/2012 7:16 PM (GMT 0)
Another thing, Canada has a two tier testing system.  You have to have a positive ELISA test to qualify for a western blot.  The elisa tests for lyme antibodies in your blood.  Unfortunately, lyme and bartonella and I'm not sure about the other coinfections, depress the immune system and antibodies often don't show up in someone who has a longer term infection.  Infectious disease doctors in Ontario will not treat if there is a negative result. 

My daughter had blood drawn for the ELISA, which came back negative after 3 months of waiting - "By the way you will be relieved to know that your daughter does not have lyme" - I almost laughed out loud at them.  By this time I had found the US LLMD and had positive IgG results for lyme and bartonella through an Igenex western blot.  Our doctors in Ontario would then not accept this as evidence of infection, and did not recognize Igenex as being a legitimate lab.  The US LLMD will treat clinical symptoms, you do not need to test positive on the blood tests for treatment to begin.  Often after some time, negative test results will seroconvert and there will be some indication of infection. 

Posted 3/6/2012 4:12 PM (GMT 0)
Hi all,

Just a quick update.  Lyme test came back negative... surprise, surprise. rolleyes   Still having a wicked flare of something over this past week... can bearly function or move without major strain.  shakehead Got in touch with Canlyme representatives for Ontario, and as it turns out, nobody is currently treating Lyme patients in the Province.  I have contacted a Dr. in Plattsburg, NY who's practice is 80% Lyme patients.  I'm going to try to get in to see her for an appointment and get a consult on my situation.  Hoping I'm on my way to getting well... I'm at the end of my rope and this week has been unbearable. shocked

Kristo

Posted 3/6/2012 4:17 PM (GMT 0)
Good for you. I have heard that Dr. M is good. If you go to CBC podcasts, you will find a couple of interviews with her on the Current:

http://www.cbc.ca/thecurrent/2010/06/june-14-2010.html
http://www.cbc.ca/thecurrent/episode/2011/09/15/letters-oil-sands-conservatives-lyme-disease/

How long do you have wait for an appointment?

Best of luck!
Posted 3/6/2012 4:36 PM (GMT 0)
Hi rowingmom... yes I've heard those podcasts, adn also watched "Under Our Skin"... but the end my husband was like..." we need to get on this now and get you well, no matter the cost"... so good to have his support too.

After email correspondence this morning, it looks like mid to late June is when she is booking, although she has a cancellation list too. She sounds like she is really LL, and at this point... I'm willing to make the 7 hour trip to get well!

Thanks, and hope your daughter is on the road to recovery.
Posted 3/7/2012 1:11 PM (GMT 0)

Kristo said...
Hi all,
Just a quick update. Lyme test came back negative... surprise, surprise. [img]/community/emoticons/rolleyes.gif[/img] Still having a wicked flare of something over this past week... can bearly function or move without major strain. [img]/community/emoticons/shakehead.gif[/img] Got in touch with Canlyme representatives for Ontario, and as it turns out, nobody is currently treating Lyme patients in the Province. I have contacted a Dr. in Plattsburg, NY who's practice is 80% Lyme patients. I'm going to try to get in to see her for an appointment and get a consult on my situation. Hoping I'm on my way to getting well... I'm at the end of my rope and this week has been unbearable. [img]/community/emoticons/shocked.gif[/img]
Kristo

Kristo, she was my LLMD as well. She's really good and she is also learning natural healing techniques. But I found with her, she rx's way too many abx.
She actually lives in Montreal and works in NY.
I'm the Lyme Literate Naturopathic Practitioner in Montreal Traveler was mentioning. My clinic (not me personally) is doing some work with this LLMD and others.
There are only 2 LLMD's in all of Canada (one in TO and one in BC), but there are many ND's who are learning about lyme.

It's a hard road, but don't despair. You will find your path. I had lyme and went through the gamut of not knowing who to see. I'm happy to say I am free from lyme now.
I did the abx regime for 5 months and realized it was hurting me more than helping. Do ALL the research you can before making a decision on taking so many drugs. It's not always the way. At least it wasn't for me

Jen
Posted 3/8/2012 2:30 AM (GMT 0)
Hi Kristo,

If you can, I would pay to see a LLMD in the US. It will be extremely difficult to find someone to treat you in Canada, and you don't want to waste years while you get worse.

Also read up on Lyme treatment before you see your LLMD, so you know what to expect AND what you want. I decided I wanted to go for a very aggressive antibiotic approach initially. It was hard, but it worked. I suspect that my LLMD prescribed "way too many abx" too, lol, but it was what I wanted at the time. My current protocol is less aggressive because I am using an LLND in AB, and she uses a less aggressive protocol. I think both work, but I am very happy I got the aggressive treatment to start with, and to be honest, I sometimes worry what I am doing is not aggressive enough.
Posted 3/8/2012 2:18 PM (GMT 0)
Thanks for all the feedback guys... I'm well into the research and am just amazed that people afflicted with this have to do so much themselves... I cannot believe that the US and Canadian Goverments are allowing this crap to continue... it's really disheartening, and disgusting.
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