Disappointment and new protocol

Remember the reference I made to the big news we might have on November 7? I didn't want to get too excited ---
We had submitted a proposal to do a presentation at the ROMA (Rural Ontario Municipalities Association) in February 2013, and we had the support of several Councillors like Mayor Marolyn Morrison. We just heard that we lost by only 2 votes. We won't be going to the conference to present Lyme disease and the plight of Lymies in Ontario and Canada. However, she will present the same proposal to the agenda of the AMO (Association of Municipalities of Ontario) for their conference in August in Ottawa.

Disappointed --- but still glad that there was a long discussion around the proposal and that many of the people attending, heard more about Lyme and hopefully will be thinking about it! Every little push helps in the groundswell.

I haven't yet heard back if the write-up I submitted to be presented at the FCM in Ottawa on November 19 needed anything else. But maybe no news is good news! The most important is that the FCM will hear about Lyme, and then we'll hear what next. 

Joe and I will be at the Ontario Federation of Agriculture on November 18 and 19, manning an information table while the OFA has their Convention. Hopefully we can get many of them to notice. We'll be sure to have petitions there - be it the one from Elizabeth May or the one from David Tilson, or the one from the WHO!

NEW PROTOCOL
On another front: I've started my new protocol this morning. That means, back on the ugly yellow Mepron (which gave me very vivid dreams and almost waking hallucinations last time), still on Malarone, adding a Sulpha drug and the Bab-2. Took the first doses this morning. I'm still waiting for the Tinidazole which has to come from a compounding pharmacy and they haven't called yet.
 

New protocol started today, Nov. 9, 2012

People are talking about massive migraines while on Tinidazole. There's talk about the Bab-2 putting strong sportsmen in bed from herxing. So, we'll wait and see what it does to me and my funny body when all things are in! The picture above is of a few of the things taken this morning.

WORDLWIDE LYME AWARENESS
Getting excited about all the activity around the Lyme Awareness planned worldwide for May 2013! People are getting to talk to their towns and cities to ask about possibilities, and thinking about what they can do, get friends and families to help with and to push for more awareness. Canada page  and the Worldwide page if you want to look.

Links to previous posts referred to in this post:

• Success and Support!
•  Delegation to the Region
• Graphic of Mayor Morrison's Column about Lyme this summer (click to see bigger)

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.