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. 

Tick Tales
During the last two weeks, I've had several people emailing or talking at various meetings about finding ticks on themselves, their children or their pets. The last three events were in the Kawartha Lakes area (found a tick in a child's ear), in the Font Hill area (ticks on teenagers) and in the St. Catharines area (ticks on an adult, twice in one week). Many were grateful for having had brochures or cards from various talks about Lyme Disease and able to take care of the problem. One woman was just walking in a Home Depot when she found a tick in her hair! Remember that ticks can be very small.

Picture from Public Health Agency of Canada

The picture above is from the PHAC website, where there is also an updated list and maps of known endemic areas. No longer is only Turkey Point mentioned in Ontario, for instance. Do stop by and take a look at THIS link and protect yourself and your family.

I'm really excited about the news following below, and which has now been made public!

NEW Foundation for Vector-Borne Diseases

A new Foundation for Vector-Borne Diseases (carried by ticks, mosquitoes, etc.) to support research, accurate testing and proper treatment of Lyme Disease has been founded in Canada. The foundation is partnering with the new Humber River Hospital in Toronto, opening in 2015, to develop a world-class facility in the country.

Rossana Magnotta, who worked hard to establish the G. Magnotta Foundation for Vector-Borne Diseases, says: "It'll be the Mayo of Canada, when it comes to Lyme disease research. We're not out to panic people, just to spread awareness and get accurate testing - that's the biggest hurdle."

Gabe Magnotta lost his battle against this devastating disease in 2009. It took years for him to get diagnosed and even when treatment started, it was too late for his body to overcome the ravages inside. Since then, Rossana has worked tirelessly alongside CanLyme to bring more awareness about the often misdiagnosed disease. The foundation is named in his memory.

CanLyme urges public to be “tick aware” this season

Tick season has begun in many parts of Canada. Ticks are on the move above -2 degrees C / 28.4 F.

Lyme disease is the fastest growing infectious disease in North America. The United States reports over 30,000 cases annually, and estimates the disease can be underreported several fold. Disease carrying ticks are becoming more and more prevalent in Canada and are on the move.

Ticks are found Canada wide. The species of ticks that transmit Lyme disease to humans are only about the size of a poppy seed when they are in the nymphal stage, and only about 3 mm in length in the adult phase. Different species of ticks are capable of transmitting several different diseases to humans including Lyme disease. These ticks are transported randomly throughout Canada by our friendly migratory birds that can also harbour Lyme disease and other diseases in their blood. Remember, no tick is a good tick.

Lyme disease can cause long‐term health issues if not identified and treated early. It can affect the brain, eyesight, hearing, heart, nervous system, muscles, joints, digestive tract, and lymph nodes. Because Lyme disease is a multi‐system disorder many systems of the body can be affected at once, therefore, it can often be misdiagnosed.

Lyme disease is being missed in Canada as doctors are not told of the limitations of blood tests used here, and are not educated as to the complex symptoms that result if not caught and treated early. Lyme disease has been misdiagnosed as multiple sclerosis, Parkinson’s disease, ALS (Lou Gehrig’s disease), several forms of arthritis, chronic fatigue syndrome, fibromyalgia, bowel disorders, and many other diagnoses.

WHERE ARE THE TICKS?
Ticks can be found anywhere that birds fly: in your lawn, on your pets, in tall grass or brush, on logs or
woodpiles.
If outside do not brush up against brush or tall grass, walk in the centre area of trails, and wear a repellent containing DEET.
Pets can carry ticks into your home. Talk to your veterinarian about protecting your pets.

HOW TO REMOVE A TICK
Use fine tipped tweezers to remove an attached tick, being careful not to touch the body of the tick (get as close to the skin as possible then pull backwards). Apply antiseptic to the area immediately. Save the tick if possible and call us, or your local health department. Waiting for blood tests is the wrong way to deal with possible Lyme disease as detectable antibodies do not develop for several weeks, when the disease has disseminated into deep tissue making treatment much more difficult.

Prevention is the best medicine. Be tick aware, NO TICK IS A GOOD TICK!
For more information on prevention please visit www.canlyme.com/prevention.html

Lyme disease is a serious threat Lyme disease is on the rise in Canada, yet treatment and public awareness are largely inadequate. Canadian Lyme Disease Foundation (CanLyme) is dedicated to raising awareness and promoting Lyme research, education and treatment.

**Information from Press release by CanLyme, and from personal discussions with Rossana Magnotta.
** Article in the Toronto Sun

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

Lyme booth at Brampton Fall Fair to Sunday

Things are really moving around the Lyme Front this month!
I've just received an outdoor banner with my friend Fi's design at the top. She's in South Africa, so we have international designers helping with this! I had ordered it some weeks ago but it took a while to be delivered and I was getting antsy .... Hopefully it can help with our displays, depending on where we are.

Check it out on the left - what do you think?

It will be set up today as part of our booth at the Brampton Fall Fair which is on until Sunday. If you want to join us, you can buy passes for only $20 per person, which will give you access all day, any day, until Sunday. You can come and go as you like with that.

Otherwise, a one-day admission is $10 per adult, $8 per student or senior, and children under 12 are $2 each.

There are all sorts of events going on during the fair. The Ontario Falcon Centre is there again with their birds of Prey, for instance. If you want to see some pictures from last year, here they are CLICK

There are car races, horse shows, a Gymkhana, Welsh ponies, vintage car displays, a baby show on Sunday, rabbits, pigeons and horses, and a lot of baby chicks which children usually love to watch. Below is a PDF schedule of events for the fair, if you want to see the variety of items being presented. And don't forget to stop by the halls! Play a bit of fun on the Penny Sale, and in the Homecraft building, see the display of Antiques, baking, canning, arts and crafts, children's handwork, needlework, photography, 4-H displays --- maybe next year you or your children would like to enter something!

Brampton Fair Schedule

Come on out and visit a little! Stop by the Midway or let the kids play at the booths to win a stuffed toy while you browse the booths.

At our Lyme tent, we have volunteers who will be chatting and answering questions, handing out brochures and sharing information. I'm so grateful to people who are coming to help with that, reaching out to the community. Thank you, my friends.

Dr. Ernie Murakami has arrived in Ontario and will do his first presentation at Fort Erie tonight. He will answer questions about Lyme Disease, the treatment and care and is hoping to help people find answers.
He will be in Brampton on Tuesday evening. The list of lectures and venues up to Kingston and back down to Toronto can be found HERE. There is a possibility that a lecture might be added for Ottawa, if a venue can be found.

All very exciting. Joe is back from the Outdoor Farm Show. See the previous two entries on this blog about that event. He says it went incredibly well and we are already booked again for next year! We'll talk about helpers as soon as the excitement of September has died down a bit.

We CAN make a difference and we CAN help people get the information they need. The petition forms are steadily arriving and adding to the groundswell.

Let's go!

Lyme Day Walk - how far?

Goodness, this Lyme Awareness Day Walk is really taking off, and I'm so grateful for that, for the support and awareness circling out to others!

Right now we are hashing out the registration forms, so that people can register for the walk, order T-shirts if they want them, and get things firmed up. Hopefully registration forms will be on the LymeWalk website by this weekend, Feburary 12th.

But -- and this is the question from many --- how far is the walk? Is it a race? What are the prizes? What is the time limit?

No, it is not a race, as such. No time limit. No expectations, other than your presence and sharing the awareness with others. I'm hoping to offer a good prize to the person bringing in the most funds, though, through collecting donations from friends or family, but that's just a thought at this point and not a firm part of the planning.

The "formal" walk part will take around 20 - 30 minutes or so. See map here below or on Picasa (click the magnifying glass to enlarge on Picasa). Afterwards, there will be prize giving and draws, fun and time to talk to Lymies and families, sponsors, the artist who designed the T-shirt, play the Penny Sale, join the kids in a sack race or face painting, and just enjoy the day. I'm hoping someone from CanLyme will be there as well to share some information. Make sure you talk to the vet who will be there, about Lyme Disease in pets - they can be treated!

However, there are paved paths all around Chinguacousy Park. Those who want to walk more, or even jog a little after the Lyme walk, would be free and welcome to do so! It is a lovely park with lots to see. Remember to visit the greenhouse - it is free. Take the kids to the barn and the petting zoo. Walk around the ponds and enjoy sitting on the grass, looking at the ducks and other birds. You are welcome to bring a picnic and propane bbq if you wish. We are planning activities and fun for kids, and during the afternoon, after our event, the park will have a Midway, so families can really make an outing of it!



Ching Park map - click for larger view

 EMOTIONAL SUPPORT
Truth is, this Lyme Awareness Day is supposed to be a family outing, a time spent learning and sharing about Lyme Disease, of relaxing in the park with a picnic after the walk, and for Lymies and their loved ones to get the emotional support we so desperately need from each other. To know we are not alone, that others are suffering and struggling as well, can mean as much as a load of medication and supplements. And for those who are caregivers and friends, helplessly watching a family member in pain or struggling, this gathering is a way to feel they are doing something instead of just standing by.

Last year when Kim and I went to Ottawa in May 2011 to attend the Lyme Rally on Parliament Hill, it was an uplifting experience for both of us (and the others!) to suddenly see other green T-shirts, to talk and hear stories, and to say, "me too!" Together, we can face this battle. And teach others about it so that they might avoid the struggle we've gone through to get diagnosed, treated and well again.

THE DREAM
Any funds raised on May 19th will be donated to the Canadian Lyme Disease Foundation. Their mission is to educate, to research and to teach about Lyme Disease. The dream is to one day have a testing facility in Canada where people with Lyme symptoms can go for testing, without having to face the battle of disbelief, scepticism and "it is all in your head".

Taking part in our Lyme Awareness Day, be it walking or as spectator, paying the registration fee or adding a few dollars as donation, bring us closer to this dream. Who knows, the next person you talk to, might have undiagnosed Lyme disease now or in the near future, and your information might help them on their journey.