David Suzuki and Elizabeth May about Lyme Disease in Canada

Lyme TV show with David Suzuki from last night (see blog post "Ticked Off") is online as from today. Dr. McShane, who treats many of us Canadian Lyme patients who are not allowed to get treatment in our own country, is featured, said hubby, who watched since I had to be elsewhere. Very conflicting statements, he said . Exactly what we Lymies have to try and wade through.  I've now watched the online program and emotions have been up and down. 

Who is lying and why?  If patients get better with treatment, what is the problem? Why do people like dr. Wormser, about 22 minutes into the video, still deny that Chronic Lyme disease exists? Does he think we ENJOY being sick?

The Nature of Things: David Suzuki presents "The Mystery of Lyme Disease" 

http://www.cbc.ca/player/Shows/ID/2411526805/

Some screen grabs, faces and names of people on the conversation for the program (click to enlarge) 

Why we need a national Lyme disease strategy The Hill Times October 7, 2013 After tabling my bill calling for a national Lyme Disease strategy, my office has received hundreds of heart-wrenching messages from Lyme Disease sufferers and their families. Here is a sample, used with the permission of the writer. Please help us raise awareness of this dreadful illness. “Due to my illness I have lost my consulting business which I ran for 14 years. However I consider myself to be one of the lucky ones because my family fully supports me and has made it financially and emotionally possible to regain my health. We have spent over $100,000.00 to regain my health not including lost wages.” - B. Edwards, Abbotsford, British Columbia Please read my latest article in the Hill Times, sign my petition in support of Bill C-442, and call your local Member of Parliament. I know a health policy briefing should touch on all areas of health policy. We have critical issues ahead as we work to protect universal access to top-notch health care, reduce wait-times and drug costs, and meet the growing challenges of an aging population. The deficits in our mental health programs alone could occupy the House of Commons for the fall session. That I write now about Lyme disease is because it is timely and urgent. One of the first private member’s bills slated for second reading in the next session will be Bill C-442. It calls for a National Lyme Disease strategy, and, while I am the author of the bill, I hope it will not be seen as “my bill,” but rather as a bill every Member of Parliament can champion. [Read rest of article...]

To the States for treatment again

Last Monday, we had to take the 7 hour trek to the USA again, in order to be seen by a Lyme Literate doctor (LLMD). The doctor who was treating me in Ontario has been forced out of practice for treating "a disease which doesn't exist in Canada". (spit)

I'm so grateful that dr. Maureen McS accepted me as a patient! I first saw her in May 2011, when she also diagnosed me with the terrible twins, Babs and Bart (Babesia and Bartonella). For three months we attacked Bart, and then in August started targeting Babs. 

Dr. McS with me at the Lyme Conference in Toronto.

The hotel where we stayed was quite nice, but food was an issue. Really hard for me to find much, especially breakfast. When you tell a restaurant you need a meal to be gluten free, sugar free, casein free (no cheese), not allowed salad dressings or mayonnaise, and no beverages other than water with lemon juice, they look at you rather funny!

Spent about 90 mins with the doctor. She is generally pleased with my progress, but doesn't like the ugly, deep hurting bruises on especially my legs. More tests to be done.

I would also have to start injecting myself with Vit B shots, to try and get the brain functions back to normal.

She's changing some of my meds, keeping me on some and adding more to the cocktail. This will be hard on me, she said, for the next three months. Now I have to wait to see my GP in Ontario to see which prescriptions he'll rewrite and which ones we must order ourselves.

Some of the pills our pharmacy can't find in Canada any more, so we bought and paid for one kind for two months while in the USA.

That's when I had another diabetic crash. Too long without food, and poor Arno had to drag me to a food court and got some steamed veg and wokked pork with a cup of black coffee. I didn't get as bad as the previous crash, because he got such a fright the previous time, poor guy, and reacted rather quickly this time.

The doctor said I have to eat every three hours to avoid these crashes, and always include protein, which is what I've been trying to do all along. If you see a  woman carrying a little bright pink lunch bag everywhere, say hi! Chances are it might be me ...

Have to continue with the very restricted diet, but might be able to add cider vinegar with 'the mother culture' included. Oh and I can have goat's milk cheese and feta.

Must try to work in more walking, cut down working hours (currently around 30 - 40 per week), and look at another 18 months of treatment to beat the Lyme monster.

Meeting the Lyme warriors in Toronto

What a rush this weekend was! Being able to see, hear, meet, talk to and just observe so many people who have become familiar to me through research about this disease we are fighting, either as patients or as health care givers or family members, gave me energy to fly! Of course, as always, then the crash happens and I woke up this morning with infection in both eyes. And fatigue dragging my feet. But it was so worth it! I'm busy uploading some of the pictures taken this weekend. Below is a collage of some of the pictures that meant so much. I can't pick one that meant more than another, but as a Lymie who have seen the suffering of Mandy Hughes on the film, "Under our Skin", it was particularly uplifting to see her at the conference, and to talk briefly with her and with her mother.

 MORE PICTURES
Too many to name, but the pictures are being uploaded and captioned to Picasaweb. You can see them either from HERE  .... OR if you have a Gmail account and wish to comment on some of the pictures, please go directly to the ALBUM. Hopefully the rest of the pictures will be uploaded today, October 31.

Thank you, to everyone who came and who give us, the patients, so much support, in many different ways!

A very special thanks to my friend Anne, who dragged me along to the conference. Part of the Lyme Brain is that I find it hard to make decisions or to plan ahead. Anne would have none of that. Thank you!!