Home Forums General Discussion Article on BC Lyme/Chronic Disease Clinic

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  • #306745
    kater
    Participant

    We are still waiting for this to open and HOPING it will be progressive. We need proper Lyme care in Canada!!!!
    http://blogs.vancouversun.com/2011/12/06/bc-womens-hospital-named-new-medical-centre-for-lyme-chronic-fatigue-and-other-complex-diseases/
    have a great day!
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #363551
    Maz
    Keymaster

    Kate, fingers and toes duly crossed for you all up there on this!

    My sister just sent this from the Guelph (Ont) Mercury:

    http://www.guelphmercury.com/news/local/article/724482–songbirds-contribute-to-spread-of-lyme-disease

    This article is urging folk not to think that ticks adhere to geographical boundaries, as birds are taking them everywhere.

    #363552
    torontogirl
    Participant

    We definitely need better Lyme recognition and medical care in Canada! If this clinic opens, I wonder if they will accept out-of-province patients. There is nothing remotely similar here in Ontario. I have been wondering whether it is worthwhile to travel to New York and pay out of pocket for treatment from an LLMD.

    I have a holistic MD here who believes in the infectious theory of rheumatic diseases and is willing to prescribe Minocycline… but he thinks Lyme Disease is sort of a fad. He said he used to used the Igenex test for patients who had symptoms that could be attributed to Lyme, but the test came back positive more than 90% of the time. He called and spoke with the lab and they told him that the high positive rate was because so many people have been exposed to Lyme and when testing symptomatic patients one would expect a high percentage of them to have the disease. I’ve heard this concern raised before about the labs that specialize in Lyme testing.

    I was bitten by a tick and never treated, but I tested negative on the ELISA/Western Blot. I can’t decide whether to go through with the Igenex test and then the LLMD route if positive… It would be impossible to find anyone in Ontario willing to treat other than perhaps with 2 weeks of Doxycycline. My neurologist is the one who ordered the ELISA/Western Blot and as he was writing the requisition he said, “Now, if this comes back positive it won’t really make any difference in your treatment.” It’s frustrating.

    #363553
    Lynne G.SD
    Participant

    Hi Toronto Girl;
    I see Dr. A. in Ottawa and she sure knows about lyme as she had it.In her opinion Fibro/Chronic Fatigue is Lyme and she desperately wants to get the word out about Lyme and is even thinking of approaching the CBC T.V about it.her phone is 613 721 9800 but she can have a long waiting list.My vet is all too aware of Lyme also and says we have only seen the tip of the iceberg.
    Lynne

    #363554
    matv
    Participant

    toronto girl! how are you! Did you know there was a “walk for Lyme Awareness” in Brampton’s Chinguacousy park during the month of May? I was sad because I moved back to Victoria so I couldn’t participate. But, that shows that it’s getting a little bit better, awareness-wise. There’s no LLMDs in Ontario, but luckily here in BC Naturopaths are allowed to prescribe medication so we can get our prescriptions from them now.. (The college of Physicians can’t come down on them because Naturopaths aren’t part of that organization, according to the Naturopath speaking at the lyme meeting here, so that was good to know!!)

    Anyway it’s good to hear from you. It’s been a while!

    #363558
    torontogirl
    Participant

    Hi Mat,

    How are you doing? No, I didn’t hear about the walk for Lyme awareness. It seems like it is getting a lot more press and recognition recently. Actually, I went to my family doctor about some ongoing symptoms and got another doctor in the office. I was complaining about my same-old-same-old symptoms of migrating joint and muscle pain, diarrhea, fatigue, neuropathy, etc. Stuff that my rheumatologist has not been able (or willing) to help me treat. She told me that it could be caused by something other than UCTD and that I should see my family doctor first to rule out other causes. I told her that the family dr would just tell me it was all part of having a rheumatic disease and that the rheum was the one to treat it. Anyway, she firmly said NO, get family dr to rule out infections, thyroid disease, cancer, etc.! But the office set me up with another doctor in the practice when I called to make my appointment. He was very sympathetic and obviously was looking at my situation with new eyes. He said he wanted to test for Lyme and Epstein-Barr. Hallelujah! Someone who recognizes that these rheumatic symptoms could also be an infectious/viral process.

    But… he could only run the ELISA/Western Blot which I’ve already tested negative on so he looked disappointed (because he thought he was on to something with the Lyme suggestion!) and just ran the EBV titers. Haven’t heard back about that yet.

    Anyway, I hope you’re doing well in BC. I don’t think naturopaths can prescribe drugs in Ontario, can they?

    #363559
    torontogirl
    Participant

    @Lynne G./SD wrote:

    Hi Toronto Girl;
    I see Dr. A. in Ottawa and she sure knows about lyme as she had it.In her opinion Fibro/Chronic Fatigue is Lyme and she desperately wants to get the word out about Lyme and is even thinking of approaching the CBC T.V about it.her phone is 613 721 9800 but she can have a long waiting list.My vet is all too aware of Lyme also and says we have only seen the tip of the iceberg.
    Lynne

    Thank you! I will look into that. She is the first doctor I’ve heard of in Ontario who openly talks about Lyme and tests for it!! And presumably treats it too?

    #363557
    Maz
    Keymaster

    @torontogirl wrote:

    But… he could only run the ELISA/Western Blot which I’ve already tested negative on so he looked disappointed (because he thought he was on to something with the Lyme suggestion!) and just ran the EBV titers. Haven’t heard back about that yet.

    Anyway, I hope you’re doing well in BC. I don’t think naturopaths can prescribe drugs in Ontario, can they?

    Hi TorontoGirl,

    Just a thought…if this new doc is so open to testing you for Lyme and coinfections, do you think he’d run IGeneX Lyme testing for you, which is more sensitive and includes more antibody bands? You just call up IGeneX and ask them to mail you the testing kit to your home. You then fill out the paperwork in the kit, get the doc to sign off on the tests and then mail the test requisition and your bloodwork in the return mailer provided. A basic western blot is about $200 (IgM and IgG). No test can rule out Lyme (it is such a tricky organisms), but most doctors don’t realize this. It has to be a clinical diagnosis, but there are some antibody bands that are so specific to Lyme that a more sensitive test like the IGeneX ones that LLMDs use in the US provide much more info. While Lyme is generally the test that people run for “Lyme,” it shouldn’t be overlooked that other infections are passed by ticks, too, that are becoming extremely prevalent, too. Usually, the sickest patients are coinfected with other insect vector-borne infections.

    NDs are currently unable to prescribe in Ontario, but I recently spoke with an ND in Whitby and she told me that this could well change in the next few years. 🙂

    #363555
    Lynne G.SD
    Participant

    Hi Girls;
    Did any of you see the news report last Wed. night on CTV at 11p.m.Quite a bit of an expose on Lyme here in Canada and they even talked about chronic long standing Lyme.You might be able to pull up the broadcast from CTV archives.

    #363556
    Maz
    Keymaster

    @Lynne G./SD wrote:

    Hi Girls;
    Did any of you see the news report last Wed. night on CTV at 11p.m.Quite a bit of an expose on Lyme here in Canada and they even talked about chronic long standing Lyme.You might be able to pull up the broadcast from CTV archives.

    Hi Lynne,

    Was this the show?

    CTV: “Lyme disease experts fear explosion.

    http://www.ctv.ca/CTVNews/Health/20120619/lymedisease-tick-season-120619/

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