TheSpec - Lyme disease patients at risk in Ontario (Click here for Article)

TheSpec - Lyme disease patients at risk in Ontario

It's unbelievable how day after day I come across stories about how Canadians are treated like a criminal for "daring" to say " I know I have -------!!!", which could be any of the many diagnosis that appear to currently be sitting on Canada's "DO NOT DIAGNOSE LIST".

I discovered the "DO NOT DIAGNOSE LIST" when I was diagnosed with Symptomatic Tarlov Cyst Disease, and now here's a story about how a diagnosis of Lyme Disease can put any other Canadian patient in the exact same position, as those with Tarlov Cyst Disease. The only difference? When you tell someone you have Tarlov Cysts they look at you like you have ten heads and say, "What's that?" But when you tell someone you have Lyme Disease that same person would probably recognize the name, but not suffer the same miraculous look of shock that the Tarlov Cyst name imposes.

I'm sure, or at least hope there is actually no such list, but considering I've been touched by both I am now truly beginning to wonder.

No it not a definitive diagnoses yet, but according to a Dermatologist I'd seen in 2006 to look for treatment for an intermittent, very strange, red, repeated and cycling rash. A rash that I always explained this way. "It's like a rock being dropped into a still pond and the ripples of the water move outward until they disappear and the surface becomes smooth and calm again.". That's my rash, the rash I've had for years on and off, intermittently for probably many years.

The visit to the Dermatologist appeared at first to be a waste of time as during the appointment when at first sight the Doctor had no idea of what it could possibly be! Then he offered to do a biopsy of one of the rash red spots and of course I said a quick "yes"! I just wanted to know what it was and get rid if it... so the biopsy was done and now all I could do was wait for a report.

Several weeks later I asked my Physician what the report said, and I was simply told I just have a sun allergy and I should be using a stronger sunblock and minimizing sun exposure. Made sense to me, and at the time I had not yet hit my "do not trust" limit with my Physician, so I just went along...... and yet again that may have turned out to be another of my extensive list of major mistakes with this Physician.

Today, I was looking through my medical files, which I have complete copies of and I found the Dermatologists report that said nothing about a sun allergy. What it does say as a diagnosis is: "Lymphocytic Infiltrate" with a differential diagnosis of, "Lyme Disease".

When I did my research the extremely similar symptoms of Fibromyalgia, another of my many, non conclusive diagnosis, sounded extremely similar to that of Lyme Disease. However, the most important symptom that quickly connects a diagnosis to Lyme Disease is the Lyme Disease rash; a rash described, intermittent and looking exactly like mine!!! Apparently the presence of that rash is one of the most confirming aspects of a Lyme Disease diagnosis.

So here I go back into research mode, the same type of research I had to do for my Rare Diagnosis of Symptomatic Tarlov Cysts. And what did I find when I started research on Lyme Disease? I found this Spectator article written earlier this year, and many other recent articles just like it confirming that I just might have another difficult time, within Canada, to get properly diagnosed and is once again controversial within the our borders!!!


I was once very proud to be Canadian, but there have been many times in the last year, such as right now, that I wish I could have private health care, be living somewhere else, somewhere less conservative in their Medical thinking. Some place more advanced in their abilities to diagnose, manage and treat these rare and difficult, not to mention detrimental to our health diseases!!!

So here we go again....... down the road of trying to get a rare test done that according to the attached article is not easy. Apparently Canadian testing is not capable of providing a definitive result. Again I may need to look south to get an accurate diagnosis.

There is however one thing that the Lyme Disease has going for it that I never had when diagnosed with Tarlov Cysts....... there is already a long standing, informed and educated advocacy group specific to Ontario and Canada. To me that's a huge positive seeing as with Tarlov Cysts there were no Canadian specific advocates already in place.... but I am still working to change that one. But with my health issues its great to know there's somewhere I can turn for advice, support and suggestions.

The facts I've discovered in this search leaves me with one really big question, "Where is Canada, and our internationally admired Health Care Programs, when I and other Canadian need you most?"

Again, I am forced to say once again. "No Canadian should have to do so much work, or fight so hard, while they are already suffering greatly, everyday, due to the illness they're fighting for recognition for?" 


As with Tarlov Cyst Disease, we Canadians deserve better when living with Lyme Disease,
Please, wake up, smell the coffee.... I'll even make it! But just wake up and see what is happening to us Canadians listed on the "DO NOT DIAGNOSE LIST"!!!!


Enjoy, welcome and I hope you can learn from my learning................... education truly is power!!!
Sherri Jones

Epidurals, Myelograms, Lumbar Punctures; Beware, it may come back to haunt you.. (Click here for video)

On May 19th, 2011, I posted a story supplied by Louise Cabonneau Vermeiren titled,

 "Please Help Raise Arachnoiditis Awareness"

Today, thanks to Sharon Gillece, an Arachnoiditis and Tarlov Cyst Patient, I'm able to connect you to a short, although maybe older, youtube video that helps describe the cause, symptoms and confusion surrounding a diagnosis of Adhesive Arachnoiditis.

Please remember, there are many things our Doctors don't tell us, and not everything comes with a warning label. I hope this post can help prevent you from ever having to suffer the possible, and devastating effects of Epidurals, Myelograms or any other type of Lumbar/ Spinal Cord Puncture. 

We are, and always must be, our own health advocate!  
Please pass it on.........
Sherri