Of Prayer Shawls, Doxycycline and Vets

Prayer Shawl for a friend

Yesterday I was privileged to pass on a blessing to another friend in the form of this lovely shawl. Prayer shawls - I've found warmth, support, love and emotion in the shawls given to me.  There is one everywhere I go, ready at an instant's notice. The people who gave me the various shawls I use and have used, are special, close to my heart, supporters of my life. It is a gift to share with others, through the many people who spend hours knitting and creating these unique gifts.  

Prayer of Blessing: May God's grace be upon this shawl...warming, comforting, enfolding and embracing.May this mantle be a safe haven... a sacred place of security and well-being...sustaining and embracing in good times as well as difficult ones.May the one who receives this shawl be cradled in hope, kept in joy, graced with peace, and wrapped in love.Blessed Be!

 © 2013 All rights reserved.

By: Janet Bristow - 2000

  www.shawlministry.com

The next bit of this entry is a whine ... so please feel free to skip and start reading at the next bold line! 

My apologies. Disconnect. I'm feeling totally adrift and it has been increasing the last few days or two weeks. Noises from the neck again, which is stiffening up some nights. Sleep problems. Weight ballooning again. Had some weird bruises just appear. Hip pain. Nothing serious or like they were at the height of my Lyme fight. I've been off antibiotics now since February 8, was declared "in remission" on May 8. Everybody tells me how good I look. But I feel as if I'm no use to anyone and as if doing anything is a huge stretch. I try to walk every day, keep moving, even if just up and down stairs several times, but mostly outside to the mailbox on the corner and a bit down the street and back. 

Daily emails come in from people who have been bitten, or sick, or looking for treatment, desperately trying to find a doctor in our area. I'm so sick-and-tired-and-ashamed to write over and over again, there are no MDs available, and all the LLMDs are in the USA. Ours have been pushed out. And then to face the inevitable, "But why????" I'm ashamed because I've had treatment and that there's no easy answer to give to others who are struggling.  

My apologies, my good friends, if I'm absent or seemingly aloof. Don't mean anything by it but am helpless to stir myself. Just find days slipping away, disappearing while I sit and do nothing. Sit in the sunshine on a parking lot. Sit on the bed and almost watch TV. Sit in the car and watch the clouds. Sit with the laptop and look through hundreds of old pictures, but not reading emails or facebook, and not catching up with things like housework. Thanks to the friends who want to go out and meet for coffee, or enjoy a newly discovered place, or spend time at a friendly ball game, or plan to go away for a girlfriends' weekend. The joy I have while being with you, can never be explained. Thanks to my family for not moaning about the lack of vacuuming and dusting. 

Thank you for that and slap me out of my stupor somehow! 

Two upsetting articles to share

Maybe you know about this, maybe not. The first article here below really upset me. I checked with my pharmacy and found that the general price for Doxycycline in our area would be just over $1 per capsule ($82 / 100). A friend in South Africa checked and said the price there is about R25 for two weeks' supply, which translates to about $2.56. 

Now read this: Doxycline prices in the USA suddenly jump through the roof.
Article: Summer is Lyme Disease Season. The price of the drug to treat it just exploded.

Infection of Lyme disease through blood transfusions have long been a question I've asked, but it has always been waved away. A few months ago I spoke to a woman from the Canadian Blood Transfusion Clinic about Lyme disease. She said that someone who knows about a tick bite, should not donate blood for a few weeks, but can donate after 6 months because "the infection would then have been cleared from their system."   

I've now been sick since 2007, and been treated for very much longer than 6 months. Some people have been treated twice as long as I have, and they are still not well. I refer again to the Embers report which was mentioned on this blog in the post from October 25, 2012. 

Quote: "A new study by Drs. Monica Embers, Stephen Barthold and colleagues has found that the bacteria that cause Lyme disease, Borrelia burgdorferi (Bb) persist in monkeys after antibiotic treatment."  Read more 

Ehrlichiosis, Rare Tick Infection, Spread To 9-Year-Old Boy Via Blood Transfusion

 Article in the Huffington Post 

Warnings about tick populations exploding in the USA -- to vets, but not to humans? And any articles I've seen, even talking about Lyme disease, gives information about how to prevent tick bites but say nothing about how to find treatment. According to emails I've received, doctors are still showing patients the door when they come in to ask about Lyme disease. One man said he went in with a bulls eye rash and the tick still attached but he was assured it was nothing. 

Tick populations to explode in 2013

Quote: "For a number of reasons, tick populations in many areas of the country will likely explode this year, according to several parasitologists, so veterinarians should be vigilant about discussing preventives with clients."

Is 2013 the year of the tick?
Article found on the website of a vet's office in Etobicoke, near Toronto in the GTA - once again warning pet owners  LINK


Please be careful and vigilant without being paranoid!  More information always available from the CanLyme website, from the LDAO and other links on those sites. 

Brampton Lyme Walk 2013

What a weekend! So much happened around Lyme Disease Awareness and nothing would have been possible without the help of friends, family and adopted family, Lyme patients and their families and various people who took on the cause as well.

If you haven`t seen them yet, please look at some of the pictures taken the night before at Niagara Falls, when green lights helped to raise awareness about Lyme Disease. LINK 

Saturday morning, May 18, dawned beautiful and slightly cloudy, just right for the hard work of setting up for the Awareness day at Chinguacousy Park in Brampton. Some of the pictures are shared here, but there are lots more to come. At the end of this post is a link to see more pictures in an album if you like.

The view from the pavillion where we were set up

 We started carrying tables and setting up, waiting for others to arrive and claim the spot where they wanted to be in order to talk to people attending the Walk. We had shade, a view of water, a slight breeze - it was gorgeous.

Such a great space to plan the layout! 

 Various friends arrived from towns all around to help plan, move, hold down table cloths, tents, brochures, snacks, T-shirts and more.

Young photographer on duty. Her pictures will follow!

 Rebecca was on duty with her camera, but also played with my cell phone - where she found a filter to only make anything green in colour and the rest in black-and white. Quite an effect!

Jim Wilson and Councillor John Sanderson - with Poutine sweatshirt!

 The Lyme Mobile attracted a lot of attention! Everyone wanted their picture taken with it. Councillor John Sanderson was there from the start, helping us set up and talking to various people.

Registrations 

 Friend Rouxline helped people fill in their registration forms and sign waivers if they haven't done so online, and then another table handled the registrations, bracelets, and T-shirts.

Gathering around the Lyme Mobile for a group shot

 We were planning to start the Walk at 11 am, but so many people walked on to register that we were getting later and later. No matter, everyone was in high spirits and had time to talk to many other people, create support networks, get advice and sign more petitions to ask for a change in how Lyme Disease is handled in Canada.

And they're off!

 People of all ages took part! It was so great to see families out for the event, sharing and caring together.

A stream of green behind the Lyme Mobile

 Kevin grabbed my camera and took loads of pictures as the walkers went around the park.

Picture taken by special request: Val and I with John 

 The park personnel was wonderful, helpful, supportive and eager to bring whatever we needed. They helped us carry the heavy stuff, set up tents and even find a lost walker .... Thanks to everyone, Val!

I wanted a picture with all the guys! Court Steggles, Jim Wilson, Kevin Sherriff and Dr. Ernie Murakami

 Court is the outgoing president of the LDAO (Lyme Disease Association of Ontario), Jim is the president of CanLyme (Canadian Lyme Disease Foundation), Kevin is the president of LymeSavers and Dr. Ernie is the founder of the Murakami Foundation.

Glass pendant made by Sheila in the UK

The lovely glass pendant with rainbow elephants attracted a lot of attention! To see more of Sheila's work, including cards and sterling silver, go to her link Handmade by Sheila. Thanks, Bendoggie!  (We met online years ago, and in person in London, England ... where our group had so much fun that the five-star hotel kept dropping stars and ended as a B&B by the time we all left again!)

Special paintings done in South Africa for the Walk --  limited copies available

If someone reading here would like a copy of the lovely watercolour froggies done by Karin, please contact me and we can work out something. These were sold at the Silent Auction, but more people wanted to buy some. You can also see Karin's other work on her Gallery KC.

All in all - a glorious day, and my dream of having a place where Lymies can find and give support, was very much true. The feedback was very positive, even if we didn't have as many people as in 2012. With the weather so nice, you can't blame people for wanting to go to the cottage!

DONATIONS  (updated May 23)
However, donations are still coming in. Please hit the "Contact" button at the top if you would like to make a donation, no matter where in the world you are. For ONLINE DONATIONS, go to CanadaHelps and choose one or more of the Lyme Links there. You can put in a note that it is for the Brampton Walk 2013 effort, but all goes to the charity.
THANK YOU !!

MORE PICTURES FROM SATURDAY

More pictures taken on Saturday in an online Album if you want to see:

CLICK

Delegate to the Region

As mentioned in the last sentence of the post showing all the ticks found in a Kingston backyard (The ticks of our lives), today was the delegation to the Region of Peel Council. Joe went with me; his support has been and is invaluable. Without him, many of the connections and introductions might not have happened. 

Joe and I in 2011

Delegation went very well. It was started by referring to the ticks Wendy collected in her garden in Kingston --- proof they are here! One of the references made, was about Health Canada's latest newsletter as published on their site. Basically it said that the tests "have some limitations" and doctors should be encouraged to use them as support for a clinical diagnosis. Referred to a presentation at the Toronto and Region Conservation Authority this September. The TRCA is the largest landowner in the Toronto region, and will start information on Lyme disease and ticks to their employees and visitor information systems. That's a great start, but we also need to get information to children, since they are at the highest risk. We need to get to schools, Scouts and Guides. I used a quote from Janet Sperling, one of the authors of a newly printed paper in the Open Neurology Journal, that "if we can put people back to work (even part time) it's better for everyone. People with Lyme want to be working and it's a reasonable thing if we can first treat the Lyme!"

After the presentation, there were several questions - good ones! - with great suggestions. There was a connection to get something presented to the FCM (Federation of Canadian Municipalities) and AMO (Association of Municipalities Ontario). On November 7 we should hear if we are invited to the ROMA conference in February. 

Some links referred to or pieces of documents used: 

• Health Canada's newsletter extract posted on LDAO's website; link on the Home and Archived Articles page. 
• The abstract from the Embers report, and specifically the blog post by Lorraine Johnson 
• The freshly published paper, Evolving Perspectives on Lyme Borreliosis in Canada 
• Toronto and Region Conservation Authority (TRCA) website 
• My own story included just as background (Sept 2012, p 42-43)

WHY I TALK TO GROUPS
When I was asked the first time to talk to a group (Probus) I was very nervous and not at all feeling like the right person for the job! I've never been a public speaker; much better to support those who do the speaking! But they were gracious and supportive. By now it has become something I'm passionate about, feeling that if only one person hears the message at every talk, gets information and can protect or help a child or loved one, it was worth it. Today, it happened almost immediately. 

The Council meetings are on a local TV channel in real time, but there are no nerve wracking TV cameras to be seen. I was aware of the fact, but didn't really think about that during the delegation. However, barely an hour after the presentation, as Joe and I finished debriefing over a cup of Timmies, an email came in. Pina wrote:

"I caught the later part of your deputation at the Regional Council meeting this morning.  I have been feeling unwell for the last 2yrs and have been desperately trying to figure out, what I now call 'the mystery disease'.  Last year I googled my symptoms and lyme disease caught my attention. I proceeded to research the disease and discovered that the testing available in Canada is limited and not accurate. I emailed the Region as well as other Canadian health services and received no help. In a desperate feat I asked my family DR to test me for lyme, knowing that the test was a waste of time.  Test came back negative, of course.
I guess what I am asking is, where can I get properly testing and what avenues are available to me.  Any help would be greatly and desperately appreciated."

We swapped emails and then I sent her my phone number. We spent quite a while talking. She was home with the flu today and was just channel hopping when she caught the Council meeting and mention of Lyme Disease. I dropped everything to take a test kit to her sister, and to share some information.

THAT is what makes it all worth while. That people who are sick, desperate, maybe even without hope and, like most of us finally diagnosed Lymies, thinking they're losing their minds, can find some information, someone to talk to, and support from someone who can say, "Yes, I understand - me too!" 

VIDEO LINK ~~The video of today's council meeting is online, on THIS LINK - from about 32:45 minutes in if you move the starting point forward. We were second on the agenda if anyone wants to try and see a bit. 

To see video of the delegation, click the link above the picture