Lyme angel in Sweden

A young girl in Sweden became another Lyme warrior, and my personal Lyme angel. For a school project about invertebrates,  (animals without a backbone), she didn't choose the popular sea creatures or bugs --- she chose the tick.
She's also the one who took a picture of her text book about ticks sucking blood and being dangerous, able to cause serious diseases, and sent it to her mom to send to me (blog post ; down to the heading about Swedish kids knowing more than Canadian doctors).

She's an outspoken young lady, and I felt she became a Lyme warrior, needing some goodies to show her unity with us. Here she is, sporting a Lyme ribbon, Lyme bracelets with the LymeWalkBrampton.ca and "Lyme Disease" inscriptions, and a Lyme Angel pin for her jacket. Check out her phone cover to add to the whole look!

Bea - thank you. I know there was a tick on you not too long ago, but due to vigilance and a supportive medical network, coupled with information on all levels (not to mention your mom!), you were checked and I'm so grateful you are fine!

Through Bea's confidence and sharing about Lyme, more children in Sweden will probably get the message and be even more vigilant about ticks. 

May the day come when we can expect the same freedom of information and most importantly, support from doctors and health caregivers!

TICK PROTECTION ITEMS IN SWEDISH STORES

Nyree, Bea's mom, and I have been online friends along with some other women, chatting online for years. We all share news, good and bad, health stories, hobbies, activities and interests. 

Nyree regularly sends pictures of printed ads in newspapers and on bus shelters, warning about the danger of ticks, their dangerous bites and reminders to get vaccinated in the spring. 

This year, she found items of interest in grocery stores. One looks something like a pregnancy test, in which a tick found on someone could be tested for infection. The other is a "tick plaster", which can be put on an attached tick and then safely removes "the whole tick". She bought these and sent them across to use at the various displays and shows I've got planned for this summer, starting on May 3 in Burlington. 

Last year, she sent a picture of a full-page ad in a newspaper, with a drawing of a tick attached to skin and the inscription, "Tick bite? See how to remove ticks on Vårdguiden.se "

Soon it will be May, Lyme Disease Awareness month. People in more than 30 countries are doing their utmost to raise awareness, to get people involved, to support those who have been suffering the effects of this disease, and trying to change things for others.

One of the young women I met a few weeks ago at a support group meeting for Lyme patients and friends, had her story published in a local paper.
"A cruel twist of Lyme" tells yet another story, too familiar to so many of us.

May this year be one of major change!

Lyme Mobile on duty

The bright and beautiful Lyme mobile has been seen, been commented on, been photographed and is making a splash for Lyme Disease awareness, despite rain and grey skies!

On Friday, for the opening of the Caledon Chamber of Commerce Home show, the Lyme mobile was brought in and opened eyes everywhere.

On Saturday, we woke up to *snow* --- which brought so many people into the show, gathering around the Lyme booth, signing petitions to ask for change in Canada and picking up information. Many commented on the Lyme mobile they have seen outside.

The Caledon Chamber of Commerce Home Show is the first display for the bright and beautiful vehicle for the 2013 Lyme Awareness effort. People would come in, see the Lyme awareness booth, and immediately comment on the bright car outside. They can't miss it!

Thank you to Brampton Colony Ford for sponsoring this vehicle again this year! Sign Central in Georgetown did a beautiful job "wrapping" the Lyme mobile, and Jenni  is the graphic artist who created our distinctive Lyme bug treading lightly with everyone after him.

This year, it is amazing how people know more, are more aware, are anxious for information, asking for speaking engagements and constantly saying thank you for the brochures and for the booth. They sign the petition and support the cause.

I've been trying all weekend to do an updated blog post, but it has been too busy to sit down and write something. Very grateful for all the interest from so many different people. There will be more speaking engagements and awareness sessions coming from this event.

VIDEO: WORLD-WIDE LYME AWARENESS
We are gearing up for World Wide Lyme Disease awareness in May. Some 20 countries are on board with various projects to create awareness. Lisa Hilton created a YouTube video, using pictures of Lyme patients all over the world, grouping them by country: Why do we need World-Wide Awareness

DO SWEDISH 14-YEAR OLDS KNOW MORE THAN CANADIAN DOCTORS?

The picture above is one that my Swedish friend, Nyree sent. Her 14-year old daughter, who is aware of my battle with Lyme Disease, took the picture of her text book and sent on. Translated, it says:
"The most common are ticks. They suck blood from mammals, for example deer and humans. If you are bitten by a tick, it is important to have it removed as soon as possible. Ticks can spread serious diseases that give muscle pain and meningitis."

Nyree asked: Are Canadian doctors less educated that Swedish 14-year olds??

Profound. Indeed.
Nyree's daughter just became another Lyme warrior! I'm sending her some stuff to thank her, and to encourage her to keep talking to others. Nyree has also bought some tick-related items and mailed them to me - as soon as they arrive, I'll do another post to update.

BRAMPTON LYME AWARENESS DAY, MAY 18
Please share the information with others, who might need the support of Lymies. Also the caregivers - those who look after us, need support, help and a way to talk and be understood. We hope there will be many people to take part in the Walk in Brampton, or other events close to home! If you would like to come to Brampton, remember we start on the Friday already, with a bus trip to Niagara Falls to view the green lights and to wear green and be seen for Lyme. Niagara Falls Canada has been immensely helpful, proclaiming May as Lyme Disease Awareness month and with Niagara Falls going green on May 17. People are coming down to stay in Brampton to be at Niagara on Friday and attend the walk on Saturday. it is a long weekend, after all!

LINKS TO SHARE:

1. Resident gets ticked off
2. RBG Home & Garden Show, May 3-5, 2013, RGG Centre, Burlington www.rbghomeandgardenshow.com
3. Dr. Ernie Murakami about Lyme Disease, Whitby, May 10, http://www.lymesavers.ca/events/a-night-with-doctor-murakami 
4. LymeSavers Walk / Run, Whitby, May 11, http://lymesavers.ca/ 
5. Green lights on CN Tower for Lyme Awareness, May 11, meet  after dark in the park opposite the Tower, see LINK and graphic http://www.cntower.ca 
6. GREEN LIGHTS ON NIAGARA FALLS: May 17 - bus from Brampton to Niagara Falls at 6 pm, returns before midnight, see info and  LINK 
7. BRAMPTON LYME DISEASE AWARENESS DAY: May 18,http://LymeWalkBrampton.ca  

Swedish Lyme patients have to go to Norway for treatment

Picture from the Swedish radio page linked below

Pioneers Abroad Save Borrelia* Patients.
(Swedish Radio program - translated from this link. Also see the original post on this blog.)

Thousands of people suffer badly without receiving any help from Swedish health care.

After years of fruitless attempts to get treatment they turn abroad and get cured. But the patients have to pay the expensive treatments themselves since it's not recognized and approved by the Board of Health. They discard the treatment as dangerous and unscientific. Every year around 10 000 Swedes get Borrelia after being bitten by ticks. Almost all seek help and are cured by a brief round of antibiotics, if given immediately. But there are also several who do not seek help immediately, so the infection gets a grip on their bodies. A while later they get chronic Borrelia, an illness which, according to the Board of Health, doesn't exist. But in Norway & Germany patients are given antibiotics for up to a year, and get cured.

2008 was a tough year for Andrew, 45-year-old craftsman. His father passed away, he had stress at work, young children at home and his summer was ruined by a virus infection. During the autumn pain began in his arms and legs, and he sought treatment.

Antibiotics should never be longer than 30 days. That is the predominant route of many countries' health authorities. In Germany and at the Arena Clinic Borrelia Center in Oslo the patients are given aggressive antibiotics for a total of one or up to two years. Deadly, claims Welfare. - Not so, says Margaret Gabrielsson, who has just been declared healthy after two years of treatment.

Margaret and Andrew's stories are similar to that of many others. They are met by skepticism and neglect here in Sweden and so they go to the clinic in Oslo where they are met by listening, understanding health care professionals who take their concerns seriously. A whole new world opens for those Swedish patients.

Arena Clinic Borrelia Center in Oslo has helped thousands of people diagnosed with chronic Lyme disease to become healthy. But the costs mount up. Treatment is expensive. Blood sample analysis, dotors' visits, alternative treatments and not least, the aggressive antibiotic regimens were given either intravenously or in tablet form. A typical treatment takes about a total of two years and then the patient has been out of pocket somewhere between one hundred thousand and two hundred
thousand dollars.

In Norway the health authority pleased is pleased by dr. Rolf Luneng's work, but his clinic would never be here in Sweden. Anders Tegnell is Head of knowledge management at the National Board. It is he who gives out guidelines and guidance.

I wonder why Luneng's clinic is not allowed to be here in Sweden.

(*Borrelia: Lyme disease, or Lyme borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.)

Scandinavian Lymies have the same battle!

Why on earth can developed countries not treat and care for their own Lyme Disease Patients until they are well and functioning again? Nobody can understand that.

Friend Nyree from Sweden sent a message this morning, about Scandinavian patients having to go to Norway for treatment, with support from Germany! I'm posting her message with her permission here below:

Nyree wrote: Yesterday I was listening to the radio, and an “investigating” radio show, broadcasting on national level had a program labeled Pioneers abroad save Borrelia patients.

http://sverigesradio.se/sida/default.aspx?programid=3375

Needless to say I began listening more thoroughly & also downloaded the show to listen from the start today.

The program spoke about how difficult it is for Lyme patients to be believed, and to receive the proper treatment since antib’s are only distributed during 30 days here in Sweden, and many are mistakenly diagnosed with MS while they truly suffer from Neurological Borreliosis…They mentioned both ILADS & IDSA in the program.

A Norwegian clinic, Arena Kliniken, http://arenaklinikken.no/ are treating lyme patients based on American findings via a clinic in Augsburg, Germany, and they receive many patients from Scandinavia…

(Translation of the article can be read here on this blog.)

The German Lyme Fighter, Armin Schwarzbach

  Thanks for sharing, Nyree! And I'm pretty sure the Augsburg clinic might be by one of the doctors I met and chatted with in October at the ILADS Conference in Toronto - see his picture on the right.

A petition is online to lobby for removal of the outdated IDSA guidelines. The site explains the reasons. Please read for yourself, and sign, then share the link with others. Countries outside of the USA, skip the box for "State" and just choose your country. It will work that way.

* On another level, the website for the Lyme Walk in Brampton has been registered on the weekend and is being developed. For some reason the site is not live (yet) while I'm writing, so a mirror site is there. The petition is linked on the right side of that site. Please share! We hope to have a sea of green T-shirts there that day! Wear green if you have it, but we are designing and ordering shirts as well.

LymeWalkBrampton website or if that's offline, the mirror site LymeWalkBrampton

 Jenni is working on a better graphic of the jailed tick and more pages, info and links will be added as the weeks go by.