Friday, June 4, 2010

Progress!!!!! Alrighty...so everything has changed!!! While I continue to feel like I'm completely in the dark with regards to my health, help is finally on it's way....I hope anyway!!!
So here is the deal on a few things:
It's a good idea to read your medical tests:
I'm not too impressed with my doc to say the least! Not that he's a bad guy, but he too is caught in a system where there are too many patients and not enough doctors. Upon review of some tests I've had recently, I've discovered that he not only misread my ultrasound report but he also missed that in some of the testing I've had done, the samples were botched and the tests weren't even performed. He only looked for the abnormalities and didn't even look at the actual results. Which is crap! There's valuable information to be seen even within normal range. Abnormal ranges indicated 'disease'. Why do we have to wait till we're diseased before acting on our health. If doctors would even look at the normal ranges they might see that a person is in the lower limits and might be able to help with preventative care rather than waiting till you're in a diseased state. After all, I take time out of my day to run all over the city for these tests, to be poked and prodded, and he can't even take 10 minutes to actually read the results or even read them properly for that matter. I recently heard a report on CBC where a lady had an abnormal paptest showing cancerous cells. However the doctor didn't read the report and she went undiagnosed and untreated. She later ended up in the hospital while hemorrhaging. When they pulled her medical file, they saw the initial report. She now has months to live. I've heard of such stories before but always thought I would know if my doctor was on top of things or not....you just never know. So if you take anything from this....please be proactive with your medical care and review your medical records from time to time. It's your right to do so and it might save your life.

A little recap:
So Monday was awful. Tuesday and Wednesday I spent all day in bed resting and waiting for the swelling to come down. I look like a normal human being again. I'm still puffier than my normal self and somehow in the 3 days that I didn't eat, I gained 5 lbs. My body is holding on to everything. I'm exhausted and every little task I do just makes me want to crawl back into bed.Despite the medication my hands and wrist are sooooo bloody itchy and have reoccurring hives. Additionally, anything that touches my skin causes hives. Even my waistband and bracelet. On Thursday morning my brother Andy, called me and said to pack my bags b/c he had made arrangements to see a doctor in Toronto. Andy had business in TO so we were actually able to fly together which was so nice to have company in such a weakened state. I ate a Tuna sandwich at the airport and it was bliss!!!

Toronto:
We landed in Toronto and the next morning I saw a world renowned doctor that my brother had made arrangements to see. Although internal medicine is not his specialty he is a pioneer in diagnostics and Andy assures me that there is no one better. The doctor was wonderful to speak with. He was patient and seemingly interested in what I had to say. He reviewed my case, my medical history and for the first time I felt like I had a doctor on my team who was interested in helping me. He doesn't believe that this is a case of 'allergies' and that something systemically is wrong and triggering these autoimmune responses. A kind hand on my shoulder and encouraging words to not give up and that we'll figure this out made all the difference in the world today. He sent me off to a lab with a series of test to be run. The nurses drew so much blood that they had to draw from both arms. After my blood work I came back to Julien's (my brother's friend where I'm staying) and passed out for 5 hours. Needless to say I'm wide awake now. The tests we're currently running are: West Nile, Lyme Titre, IgE, IgG, IgA, Blood Culture for Cytomegalovirus, and some others that I can't quite read on the requisition. Oh and 3 stool samples for various parasites (which is funny cuz if you know me well you probably know that there's not a chance in hell I'll be able to shit anytime soon).

Lyme Disease:
Lyme disease was at the forefront of our discussion today. Which is really tricky to diagnose. Furthermore the tests in Canada are far inferior to those in the US. And although there are some very distinct indicators of this disease (presence of a tic, bulls eye rash, among others), they are only present among 30% of cases. Lyme disease tests are inadequate and should not be used to diagnose the disease only to augment a "clinical diagnosis". Lyme disease must be diagnosed and treated at the "General Practitioner" level. By the time a specialist gets involved the disease may have disseminated throughout the body making treatment much more difficult. Sometimes too late. Frustratingly enough I've been having symptoms for the past year, told it's just allergies, and NO ONE has tested me or considered this a possibility until now. My first test for Lyme disease was as per my request when I was in the hospital on Monday. And the only reason I thought to do so was from responses to this blog. PS...thanks Lisa and everyone else who reached out :). And my second test for Lyme disease was today at the request the TO doctor, who suspected it right away. I'm still awaiting results from both tests. And who knows, maybe it's Lyme disease...maybe it's something else. But if you can take something from this read, please educate yourself on Lyme disease.

www.canlyme.com
http://www.cdc.gov/ncidod/dvbid/lyme/
http://www.springboard4health.com/notebook/health_lyme_disease.html

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