Lyme Disease on CTV W5 takes flight!

If you are interested in capturing a glimpse into our lives, CTV W5 has put together an investigative news piece about lyme disease in Canada. Hopefully the Leggett family part of the production will not be too embarrassing…

Dates & Times: Sat. Nov. 14th, 7:00 p.m. — repeated Sun. Nov. 15th, 12 noon (times are EST)

The CTV W5 web site will feature the show, in case you missed it or want to see it again. Once it has been posted, please consider leaving a comment at the bottom of the Lyme show page – I think there will be a link to email W5 directly about the show. The more comments received, the more likely CTV will do other news features or even followup W5 shows on the effects of lyme disease on Canadians like ourselves. Thank you all for your support. With continued effort, more resources will be marshaled against the scourge that is lyme disease. There is hope.

CTV W5 will have to wait …

Initial estimates from CTV were a bit optimistic! October 31st will NOT happen. The W5 Lyme Disease investigation (featuring “yours truly”, Kristine, Catherine and Erin) proved to be more of a complex challenge than anticipated. The producer says we are looking at a likely time frame around early January. It will be a full half hour, and aims to blow the lid off of Canadian inaction on the escalating epidemic of lyme disease. You could be next, so be watchful, learn whatever you can about it, and ask our doctors and governments to treat it seriously. Above all, keep well 🙂

Lyme Disease on Global & CTV

I have been afflicted with Lyme Disease for over 5 years. Getting the word out about the dangers of lyme is difficult at the best of times. It is therefore with a glad heart that October is turning out to be the month that the Ontario and national media are finally beginning to dig deeper into claims that lyme disease is affecting many Canadians and that the medical system is ill-equipped to diagnose and accurately test for it.

In a nutshell:

  • Global – Sunday, October 11, 2009 @6:30 p.m. ET and again @11:30 p.m. ET. The Lyme Action Group has been instrumental in setting up and will be taking part in this “16:9 The Bigger Picture” in-depth nationwide piece on lyme disease and its dangers for Canadians. The day after the broadcast, the story will be available online on the Global site. Right after the live show, Global will be hosting a live blog event for viewers to interact with reporters, producers and guests. This blog event will go live immediately after the program.
  • CTV – end of October. W-Five (date and time still to be confirmed). Paula Todd and the CTV crew came over to our place this past week for about 4 hours, following a number of contacts with the producer over the course of the previous 3 weeks. As well as our involvement, there are a number of other parts to this investigative news piece. More details to follow…

Hopefully this is just the beginning. Quick news pieces don’t do that much to raise awareness of such a complex illness. BUT, investigative news pieces which require a lot of in-depth research on the part of producers and news anchors are just what is needed to convince people that the threat is real and has so far been under-reported and over-simplified.

Summer reflections

IMG_1110.JPG Time flies! Summer was always my favourite time, as I wrapped up my school, ensured that timetables, programs and facilities were ready for the fall, and said good-bye to my staff as they left in stages through early-mid July. Then came the barbeques, golf, the family camping trips, visits to family cottages, and the inevitable return to school mid-August to oversee final preparations to greet students sporting a new polish and shine.

Certainly many things have changed over the past five years! Kristine has been a Mental Health Nursing Practice Leader for over four years, and has been very successful in her role. Catherine is turning 17 this winter and is really enjoying her time at the arts-focussed school. Erin is a proud senior in grade 8 at middle school. As a newly minted teenager, her opinions are seldom unheard and more vibrant than ever 🙂

IMG_1080.JPGThis summer has seen a lot of activity come and go, in spite of my daily needs for attention and care. Erin and Catherine spent about a week or so with each set of grandparents, and even got to see their cousins (Craig’s girls) for almost a week. Devil Lake was never so frenetic! Kristine even got to spend a few days there with her parents and our girls. Catherine spent a month at Ontario Pioneer Camp as part of the Leadership Training program. Erin was at Pioneer Girls’ Camp for two weeks. Both girls had a wonderful time!

Although it pains me at times to talk about it too much, lyme disease has been difficult – any which way you look at it. Being bedbound confines me to a virtual prison. I get to hear about the world and even see it through my window, and that has to be enough for the foreseeable future. Being this way also makes a lot of friends and family feel physically and emotionally awkward. What does one say? Reminders of healthier and more active times aren’t easy for others (nor for me), and often constitute unwelcome intrusions into a life that doesn’t handle the mortal limitations and “surprises” that are part of the human condition. And a bit of a downer to see me like this.

For me, the good news is that I have found ways to be useful, especially given the wireless connection over my laptop mac. This blog is one of them – I even dabble a bit with twitter and facebook. Other computer “projects” include keeping the family organized (iCal, OmniFocus, EagleFiler, Circus Ponies NoteBook, Punakea), keeping up with extended family and world news (Mail, Safari, NetNewsWire), converting analog audio/video family archives to digital, organizing digital photos (iPhoto), working on family history/genealogy (need family input!), etc… The limiting factor each day is the profound cellular fatigue which constrains my every movement and portions out only very limited energy at a time. Managing this extremely low energy ceiling is part of every day life. Embracing the challenges seems a lot more useful than moping about it all. I would like to write a blog series on my experience with lyme disease, although I am not sure that many readers would welcome such a personal story and frank assessment of one of the most serious and exploding health issues that we face today. It is quite likely that about 200,000 Americans and 10,000 Canadians are infected each year by the bacteria causing lyme disease (see the Canadian Lyme Disease Foundation ), but this remains largely hidden due to the insurance and medical lobbies and control over the flow of information, a political policy vacuum, inadequate and very misleading official Canadian testing, and a general reticence to tackle such a silent and complex debilitator. It has been quite a journey, from the initial medical confusion, to the inability to lead a school any more, to the long-term treatment failures, to the condition I face now, to the ongoing struggle as we have sought out alternatives that are credible and have helped others.

I look forward to progress along the health front, and memorable times for our family this fall. Maybe I can even find it within me to laugh for no reason at all.

As Norm Papernick said,

Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad.

My old cat

Erin & Even my old cat makes me think about lyme disease.

You can see from this picture, taken just the other day, that our old cat is not feeling so well these days. She is nearly 20 years old. It’s been nearly 191/2 years since she adopted us. I still vividly remember the day I opened the garage of the house we lived in then and saw the slinking bony creature lurking in the dark corner. The can of salmon that we set out for her then sealed the deal in her mind. She’s been focussed on being fed by us ever since.

But being old is not so much fun, even for cats. She’s needed to spend extra time at the vet’s lately. The experiences have frightened her and have been an affront to her dignity. They have to prepare for her appointments. They need two people, long thick leather gloves, towels and a mask, which fits over her eyes and mouth. They are really good with her, but she just doesn’t understand why anyone should have to do such things to her. So, even though I’ve thought about taking her again, I hesitate. She has started having seizures some days and is not herself then. Today she is herself and all is calm. The day the pictures were taken, Erin has the towel beside her, afraid that she is going to pitch over and start thrashing at any moment. We took the picture because we thought we might have to take her and have her put down soon. Erin is quite attached to her puss. We are grateful for some more time with our old friend.

But when the time comes, I will have to find a humane way to get the old cat to the vet’s again. It will be sad to say good bye, but she has lived a long, healthy life. I wish I could say the same for some of us. They have an interesting map posted in the vet’s office. Across the top in big letters it announces where cases of heart worm have been diagnosed in Ontario. In little, unobtrusive letters, it also tells you blue triangles represent where cases of lyme disease have been diagnosed. There are a few triangles in the Toronto area, lots east of Kingston in the Thousand Island region and quite a number up around Sudbury. I didn’t look further. Sudbury is where we were when David was found by an infected tick. I see that even vets are quiet about lyme disease. Probably they don’t want to create a big fuss with their counterparts in human health. But at least they are straight forward about it. They aren’t trying to pretend that it isn’t happening.

My co worker went on a trip this summer to Cape Cod. She got lyme disease and knew what it was, because she has talked with me about David. Very lucky for her, she had the right bands show up on the antibody test, and went to the doctor’s at the right time to get a positive test result. Public Health in Ontario is quite willing to accept her diagnosis, as it was clearly contracted outside of the province. Very few of the people that I know who have contracted it here in Ontario have been so lucky.

Lyme disease guidelines under review

The Lyme Action Group of Ontario has published a great synopsis of the hearing on lyme disease guidelines held recently in the United States.

Last Thursday, July 30th, 2009, was a historic day. A hearing took place in Washington DC to consider a broad range of medical opinions with regard to Lyme disease. This hearing came about as the result of another historic event — the antitrust lawsuit that the Connecticut Attorney General brought against the Infectious Diseases Society of America (IDSA).

[From LYME ACTION GROUP: IDSA Hearing on Lyme – Washington, DC]

My own experiences with lyme disease have made me somewhat skeptical. I have met fierce medical resistance, insurance industry tactics and pressure, and personal health issues that have only allowed for limited high-dose treatment with long-term antibiotics.

On the other hand, every movement toward comprehending and dealing with human problems has to start somewhere. Perhaps this is our tipping point. We can only hope that the doctors of the Infectious Disease Society of America reflect on the oath that they took when they started out.