Thursday, August 12, 2010

Lyme Disease in Canada

This is another post I didn't really want to write, but once again I've been stuttering in my posts because of avoiding it, so it's obviously something I need to get out.  And I need to do it whether or not it is very upsetting and very difficult to write.

I've been suffering unusually frequent and unusually serious diseases and conditions for the past two years or so.  I've been diagnosed with Clinical Depression, Anxiety Disorder, and, most recently, Fibromyalgia.  I've been asked if I've had a heart attack due to the damage around my heart.  (I haven't.)  And before my DH heard a life-changing story on the radio, I thought I had Chronic Fatigue Syndrome.

These, and others*, are all diseases that Lyme Disease (LD) can mimic.  The Canadian Lyme Disease Foundation lists 76 symptoms associated with LD, many of them mimicking serious ailments, not all of which everyone gets.  The Foundation claims that if you have 20 or more you are at serious risk of having LD.  I personally have close to 30. 

Open and shut case, right?  Wrong.  LD is controversial worldwide.  Many doctors don't even recognize it as a disease.  Here in Canada, the problem is twofold--doctors are resistant to acknowledge the disease, and when they do agree to look into it, they only perform the first level standard test for LD, the notoriously inaccurate ELISA test.  Most of them won't even consider going on to more in-depth, more accurate tests.

The most common recommendation from patient advocates?  Send your blood to be tested in a private lab in the States.  The one I looked for performed five standard tests, continuing with another three if those were inconclusive.  The price is about $500 US, and we'll have to pay for it ourselves, but it would be worth it. 2nd recommendation?  See the one physician in all Ontario who is supposedly sympathetic to LD.

I was all set to try either of these recommendations when I ran into even more snags.  The LD sympathetic doctor needs a referral from my doctor to see me.  The lab in the States needs a request from a doctor to perform the tests, even if I'm the one paying for them.  Neither of these things was particularly a problem--my family physician is, for the most part, really cool, and I figured that even if she herself doesn't believe I have LD, she wouldn't stop me from pursuing it on my own.  So I call.  Or, rather, my DH calls, since one of my LD symptoms involves hearing problems.  At any rate, he finds out that I need to actually come in and see my doctor for either the referral or the request, it can't be done over the phone.  Okay.  No problem.  BUT, my doctor is leaving for vacation tomorrow, and I can't get an appointment to see her until SEPTEMBER 10!  Problem.  You see, I think I'm in Stage 2 of the LD, and I don't know how long I've got until I move to Stage 3, which has some potentially serious side effects such as permanent arthritis and heart problems. 

So, I took the Sept. 10th appointment, but in the meantime I will try and get an appointment with Dr. Maureen McShane, a New York physician who has had LD, and who doesn't require referrals.  She is actually the woman my DH heard on the radio, which led him to put it all together and propose to me that I might have it.

In closing, Dear Readers, beware--You can contract LD anywhere in North America.  The deer ticks that transmit it are also carried by birds, so you can be bitten even in the most urban areas furthest from known tick infestations  Less than 50% of people notice the tick that gave them LD, and only about 30% get the recognized "bull's eye" rash.  Stage 1 is relatively easy to treat, Stage 2 is debilitating and hard to diagnose, and Stage 3 is potentially life threatening.

*Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease


Willow said...

I'm so sorry to hear about your health issues. My mother had undiagnosed LD for 3 years which caused it to move into later stages. This was in 1994. By the time doctors figured out it was LD she suffered long term damage and now suffers from fibromyalgia. Feel free to e-mail me. We live in NY and I can give you information on other doctors in the area that may be able to help you.

CousinLinda said...

Willow--I am SO sorry to hear about your mother's long term damage. Thank you for your offer--I will definitely contact you privately as I am exploring every option open to me at this time.

Linda in New Mexico said...

I am so sorry to hear of your suspected disease but also with the problems with doctors, referrals etc. I will make a statement that everyone who knows me has heard a million times....I hate being sick, but I hate doctors even more. The Olde Bagg

CousinLinda said...

Linda in New Mexico--Thank you for offering sympathy despite your feelings on the medical profession. :)

Willow--please email me through my profile. I couldn't find a way to contact you on your web page.