CanLyme donates $304,000 for Lyme Disease research

The Canadian Lyme Disease Foundation, a registered charitable organization, is pleased to announce that it has made a donation of $304,000 to the G Magnotta Foundation for Vector Borne Diseases, Ontario, Canada.

The donation will be used primarily for a human tissue research program being developed in conjunction with the Humber River Hospital, Toronto, Canada.  Research will entail studying tissue and fluid from various patient groups whose symptoms mirror Lyme Disease.

Approximately 2 million Canadians are diagnosed with conditions of unknown origin including multiple sclerosis, Alzheimer's disease, chronic fatigue syndrome/ME, fibromyalgia, Parkinson's disease and other conditions that share symptoms with Lyme Disease. We know that a percentage of these are in fact Lyme Disease, or triggered by Lyme Disease.  This research program will aide in understanding what that percentage is.

Many Canadians have been diagnosed with one of these diseases of unknown origins only to find out later that their illness was Lyme Disease all along. Treatment for Lyme Disease followed, and their quality of life improved greatly, allowing many to get out of wheelchairs, get out of bed, return to work, return to school, and enjoy life again.

As reported by Health Canada in October 2012, current tests used in Canada to test for Lyme Disease are incapable of detecting many of the bacterial strains that causes Lyme Disease. In order to understand the prevalence of the bacterium in the human population, researchers will employ various technologies, including advanced DNA sequencing techniques, microscopy, and serology.

In August 2013, in a press release by the CDC (United States Center for Disease Control), it was indicated that they have been inadvertently under-reporting Lyme Disease for decades; instead of the approximately 30,000 cases reported annually, the real incidence is estimated to be closer to 300,000 cases annually.  Most cases are within a few hundred miles of the Canadian border, suggesting that Canada likewise has a serious, under-recognized problem and the Canadian Lyme Disease Foundation has been emphasizing this for a decade.

This new research program will help give Canadians a better understanding of the impact tick-borne disease is having on the health care system.

The Canadian Lyme Disease Foundation has also now released its venture grant policy for students and researchers.  Grants of up to ten thousand dollars are offered to qualified applicants.

Background: 

The Canadian Lyme Disease Foundation was founded in 2003 by Jim Wilson.  The mission of the foundation is to promote awareness, education, and research into tick borne diseases.

Lyme Disease is a bacterial infection acquired from tick attachments, and is endemic in all provinces of Canada. Migratory birds, like robins, finches, and other passerine birds carry the disease in their blood and transport the ticks, depositing them randomly across the country.

FASTEST GROWING INFECTIOUS DISEASE

Lyme Disease is the fastest growing infectious disease in the Northern Hemisphere.  In August the United States published a press release stating they have been under-reporting cases of Lyme Disease by a factor of ten, putting estimate annual cases at 300,000.  Canada has a similar situation of under-reporting and the cost to our health care system is enormous.

If caught early Lyme Disease can normally be dealt with by a few weeks of antibiotics, but once it becomes disseminated throughout the body treatment is much more difficult and can require long-term antibiotics.  Unfortunately, in Canada, early diagnosis is uncommon in part because doctors are told that the overly emphasized bull's eye rash occurs much more frequently than it does.  Current research suggests that only a small subset of the Lyme bacteria will cause a rash of any kind.

Also posted to Yahoo Finance pages 

A petition, a new Lyme book and a Community event

How did it become November already, and almost halfway through it, at that? I'm sorry for the lack of updates. Things have been really busy, and I've had a few setbacks, health wise, which didn't help. Short-term antibiotics for a raging infection which had me writhing and rocking in pain. BUT --- it is the first one in months, so no complaints! When I told the doctor-on-call that it felt as if I was "sitting on a baby's head" his eyes hopped up on stalks. Poor man. My regular doctor is used to the weird descriptions and just take them in his stride. I'm so grateful to him! And dr. M, if you are reading here, you know how I appreciate your care and concern.

Back to the post. Because of the lack of updates, this post will contain three really important separate issues. I'll try to keep my part short, but please click on the links in the highlighted lines if you want to read more about any of them. Or if you want to drop by on Saturday for a visit, fresh, warm crepes, and more! Each of the links will open in a new page or window so that the blog will remain for you to return to.

1. Petition
2. New book on Lyme disease
3. EXPO with Lyme table

PETITION: Randy Hillier, MPP, Lanark, Frontenac, Lennox-Addington, is putting forward two motions on Lyme disease in the Ontario Legislature this coming Friday, November 15th, 2013. He would like to have 2500 signatures by Friday, and at this point there are about 200 still needed.

SIGN THE PETITION: Link 

2. Book: Why Can't I Get Better? - by Dr. Richard Horowitz

From the Marketing Manager: "In his new book, Dr. Horowitz, a board-certified MD specializing in Internal Medicine, has mapped out a 16-point Differential Diagnostic Map to treat patients with Lyme disease, and those suffering from overall chronic illnesses.  He introduces MSIDS, or Multi-Systemic Infectious Disease Syndrome, which provides a new lens on chronic illnesses that may prove to be the missing link in an effort to decrease the number of Lyme cases, and chronic illness sufferers, in the US.  And, he covers in detail Lyme’s leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders."
ISBN: 978-1-250-01940-0, $29.99 US.

My review on GoodReads will be updated and added to as I read: LINK 

*****************

LYME info table at SouthFields Village EXPO on Saturday
I'll be greeting visitors at one end, with a table full of information about Lyme disease at the
SouthFields Village EXPO, at SouthFields Village Public School (110 Learmont Ave., Caledon, ON) on Saturday, November 16th from 10 am to 4 pm.
Come early, and come hungry!

Here's a short list of what you might see, experience or enjoy on Saturday:

• Fresh crepes will be available for sale
• Purchase door prize raffle tickets. 
• Glen Echo has generously donated a gift certificate for a live Fraser Fir Christmas Tree.  
• Help decide who wins the Chef Challenge.
• Yvonne Ibarra will be doing a live Zumba demo first thing in the morning 
• Birthday party on stage 
• A magician at noon and 
• Games and crafts all day long 
• There’s even a mini-arcade with cake and please do bring a present. We’ll gladly make sure that your new, unwrapped gift will make its way over to kids who would otherwise go without birthday or Christmas presents this year.
• Anybody can drop in and try their hands at the pottery wheel. After the show Wendy will take the pieces home to fire and glaze them for you so that you’ll finally have that special work of art on your mantelpiece.
• Farmers’ market and a local small business showcase. 
• A really cool speakers’ series with half a dozen speakers covering a wide range of subjects from how to take the perfect holiday photo, planning your next home reno project to hunting for the paranormal. That list is already available online at caledonspectrum.com.
• Mark Grice will start with a blank canvas and finish with a beautiful painting within 3 hours. You can watch him paint and even get to bid in the silent auction for the finished piece. 
• Several established, professional artists will be joining us in a gallery space and lounge area where you will be able to explore the art and relax with a cup of hot apple cider, care of Spirit Tree Estate Cidery. Light refreshments will be available or you can bring in something from the food vendors in the main hall. Meet and chat with the likes of Merle Harstone, Cory Trepanier and more as they exhibit their work.
• Both Sparky the Firedog and Caledon Community Designated Driver Association’s Home James will be on hand. 
• Live mannequins will be modeling one-of-a-kind Hattitude Jewellery and other pieces from Chic a BOOM.
• Dignitaries have been invited to partake as judges in the chef challenge (to take place around 11am) but the general public is also going to have a chance to pick their favourites throughout the day.
• Show proceeds will go toward supporting music and arts programmes at SouthFields Village Public School & Mayfield Secondary. Other proceed recipients will include Family Transition Place, Caledon Meals On Wheels, CCS, Cystic Fibrosis and more, as there will be a number of non-profits represented at the show and various elements to support them. But don’t think we’ll be there just to get your money. 

Admission is free, parking is free, the speakers’ series is free (but seating is limited and will be on a first come first serve basis), and so are the crafts and games at the blazin’ birthday party.

SouthFields Village EXPO: Nov 16 - 10 am to 4 pm: LINK 

Tick or Treat Invitation in Brampton

If you are in or around Brampton and looking for an outing around Halloween while supporting Lyme Disease and getting out more information, please share this public invitation! Note - this is not our house ---- but I stopped by two weeks ago and stood amazed at what they already had on display!
Visiting hours are during the day as well as evenings over three dates, starting this weekend. See information, address and notes below.

Please bring along some folding money or change and look for the wooden box marked for Donations,  pick up some brochures, and bring along friends, neighbours and children of all ages. Every day I receive more emails from people newly diagnosed or struggling with Lyme Disease. We need to share as much information as possible. Thank you to Jeff and Martine for putting on this show!

INVITATION

Greetings from THE KING AND QUEEN OF HALLOWEEN :)

LYME DISEASE IS GROWING IN A "SCARY" WAY IN ONTARIO AND CANADA!!

This is a public invitation to come and visit us for our Halloween Haunt Fundraiser called "TICK or TREAT" for Lyme Disease. ALL proceeds going to CanLyme (Canadian Lyme Disease Foundation). PICTURES ONLY SHOW YOU A SNEAK PEEK!!!
We've been featured on CTV, Breakfast Television and Rogers TV in the past. We'll have a professional make-up artist and actors this year.

PLEASE help us raise AWARENESS and funds for Lyme Disease research and treatment.
YOU DON'T WANT TO MISS THIS SPOOKY EVENT!!
Please note: Before dark we won't have actors or anything popping out. If you have children under the age of 5, we suggest to visit during the day.

This year we're working on 8 different scenes!!
* Crazy Circus
* Zombie Baby Playground
* Witches Den
* Dirty Meat Locker
* "Off with their heads"
* Cemetery
* Mad Scientist Lab
* Spooky Scare-Crows

We're currently working on our backgrounds. Our props are ready and waiting to be placed in their spots (you can see some of them waiting patiently on pictures)

THIS SPOOKY EVENT IS ON THE FOLLOWING DATES/TIMES:

*SATURDAY, OCTOBER 26th, 2013 (11 am-10 pm)
*SUNDAY OCTOBER 27th, 2013 (11 am-9 pm)
*THURSDAY OCTOBER 31st, 2013 (5 pm-10 pm)

FREE to enter but we're asking to show your appreciation by donating generously in the wooden box (you won't miss it).

**100% of the proceeds will go to support CanLyme (Canadian Lyme Disease Foundation)**

LOCATION: HAUNTED YARD @ 2 WILDERCROFT AVE, BRAMPTON, ONTARIO
(You simply CAN'T miss it!! You will see a 12' Circus Tent in the front yard and a big cat on the roof; corner house from Hinchley Wood Ave.)

We have tons of money and efforts invested in our props.
It usually takes us about 6 weeks to set up.
It's worth the trip to come and have a look!! Maybe you want to park at the plaza on Conestoga and Bovaird and walk down; it is only about two blocks.
FOR THE MEDIA: We're available pretty much any time. We're outside working in the garage/yard every night.

Martine & Jeff (The Halloweenies)

David Suzuki and Elizabeth May about Lyme Disease in Canada

Lyme TV show with David Suzuki from last night (see blog post "Ticked Off") is online as from today. Dr. McShane, who treats many of us Canadian Lyme patients who are not allowed to get treatment in our own country, is featured, said hubby, who watched since I had to be elsewhere. Very conflicting statements, he said . Exactly what we Lymies have to try and wade through.  I've now watched the online program and emotions have been up and down. 

Who is lying and why?  If patients get better with treatment, what is the problem? Why do people like dr. Wormser, about 22 minutes into the video, still deny that Chronic Lyme disease exists? Does he think we ENJOY being sick?

The Nature of Things: David Suzuki presents "The Mystery of Lyme Disease" 

http://www.cbc.ca/player/Shows/ID/2411526805/

Some screen grabs, faces and names of people on the conversation for the program (click to enlarge) 

Why we need a national Lyme disease strategy The Hill Times October 7, 2013 After tabling my bill calling for a national Lyme Disease strategy, my office has received hundreds of heart-wrenching messages from Lyme Disease sufferers and their families. Here is a sample, used with the permission of the writer. Please help us raise awareness of this dreadful illness. “Due to my illness I have lost my consulting business which I ran for 14 years. However I consider myself to be one of the lucky ones because my family fully supports me and has made it financially and emotionally possible to regain my health. We have spent over $100,000.00 to regain my health not including lost wages.” - B. Edwards, Abbotsford, British Columbia Please read my latest article in the Hill Times, sign my petition in support of Bill C-442, and call your local Member of Parliament. I know a health policy briefing should touch on all areas of health policy. We have critical issues ahead as we work to protect universal access to top-notch health care, reduce wait-times and drug costs, and meet the growing challenges of an aging population. The deficits in our mental health programs alone could occupy the House of Commons for the fall session. That I write now about Lyme disease is because it is timely and urgent. One of the first private member’s bills slated for second reading in the next session will be Bill C-442. It calls for a National Lyme Disease strategy, and, while I am the author of the bill, I hope it will not be seen as “my bill,” but rather as a bill every Member of Parliament can champion. [Read rest of article...]

Ticked off: The Mystery of Lyme Disease

The last few weeks have been incredibly busy, with Lyme Disease information sessions at the huge Outdoor Farm Show in Woodstock, the Brampton Fall Fair, and various other events. Every day there are emails from people who need answers about their symptoms or tests, their search for a doctor, and their desperation about not being able to get help. Those are all reasons why this blog hasn't been updated lately! However, please pass on the information below, about Lyme Disease on David Suzuki's program.

TICKED OFF:    THE MYSTERY OF LYME DISEASE Premieres THURSDAY, OCTOBER 10, 2013 8:00 PM (8:30 PM NT) on CBC-TV's The Nature of Things

September 17, 2013 - Lyme disease, a mysterious tick-borne illness, is the fastest spreading vector-borne disease in the United States, and over the past decade, the tick that carries Lyme has been spreading across Canada with alarming speed. On Thursday, October 10 at 8:00 p.m. (8:30 p.m. NT), CBC-TV's The Nature of Things premieres TICKED OFF: THE MYSTERY OF LYME DISEASE, a fascinating and eye-opening documentary that explores a disease that has devastating effects, is often misdiagnosed and mistreated, and continues to be mired in a medical controversy. More than 30,000 cases are reported in the USA every year, but the real number could be as high as 300,000. And despite hard evidence that the Lyme-carrying deer tick has already established populations across Canada, some people claim that patients here are still being told that they cannot contract Lyme in this country. Doctors agree that if it's caught early Lyme disease can usually be cured with two to four weeks of antibiotics. There are others who believe that if it's not caught early, the infection can develop into a debilitating condition they call Chronic Lyme. Yet unlike West Nile, Encephalitis or SARS, where the medical profession and scientists joined forces to find better treatments or a cure, many patients, who claim to have chronic Lyme, say that they are being denied treatment and left to suffer. So why is this happening? Ticked Off: The Mystery of Lyme Disease tells the stories of Canadians who have experienced years of suffering, misdiagnosis and mistreatment and investigates the cause behind the current controversy that surrounds the disease. From the micro world of the tick and its disease-causing bacteria, to the macro world of human suffering and medical science, this documentary investigates the story behind this current medical mystery.        ____________________________ Ticked Off: The Mystery of Lyme Disease is produced by Merit Motion Pictures in association with the Canadian Broadcasting Corporation, and with the participation of the Canada Media Fund, the Rogers Documentary Fund, with the financial investment of Manitoba Film & Music, and with the participation of the Government of Manitoba - Manitoba Film and Video Production Tax Credit and the Canadian Film or Video Tax Credit. It is produced by Erna Buffie (Smarty Plants, The Changing Sea, Recreating Eden) and directed by Ryszard Hunka (The Battle of the Bag; Love, Hate and Propaganda; The 8th Fire). Merit Motion Pictures is one of Canada's leading producers of factual entertainment programming. Founded by executive producer and industry veteran Merit Jensen Carr, Merit Motion Pictures is known for producing multi-platform programs that amaze, inform and delight. Recent highlights include the documentary specials Smarty Plants: Uncovering the Secret World of Plant Behaviour, Ballet High, and Conspiracy Rising, the multi-award winning CBC co-produced One Ocean series; TuTuMUCH, The Truth About Shoplifting, and Surviving The Teenage Brain. For more information, please visit: www.meritmotionpictures.com  For photography please visit: www.cbc.ca/mediacentre Media Contacts - To Request a Screener, to View Online or Arrange an Interview Please Contact: Jennifer Jensen-Tracy, 226-387-4067, jen.jensen@sympatico.ca Christine Liber, 416-651-4722 x 1, christine@libertyink.ca

Questions: Guest post by Dr. Alan MacDonald

Every day I receive new emails from people who are desperate to find answers about Lyme Disease, flabbergasted to hear that there are currently no doctors readily treating diagnosed cases in Ontario (and Canada), and a growing list of patients suffering from the debilitating effects of a neglected disease. Most times I can only lend an ear, refer to other websites, or to the Lyme Links on the right of this page.

Dr. Alan MacDonald was mentioned in this blog before, under the post where he reported a million new cases in Germany in 2012.

He posted the following questions as a comment to this blog. You can find the answers yourself, directly "from the horse's mouth", so to speak, by watching some video clips online. Most of us Lymies end up with more questions than answers, even after doing hours of research, talking to other patients, and living the life of Chronic Lyme disease.

Dr. Alan says: Test your Knowledge about Lyme Borreliosis

1. What diagnostic functions does the Pathologist provide to the patient and to the patient's physicians?
2. What is the relationship between microscopic presence of a known pathogen in diseased tissue and the causation of the disease?
3. What is the true narrowest of the narrow diagnostic coverage of B31 Borrelia test kits and the 100 GENOTYPES of wild Borrelia in the USA today?
4. What is the current test kit ability to provide laboratory evidence of Miyamotoi Borrelia Infection in human patients?
5. What is the nature of DNA in flux in wild type Borrelia? If the Borrelia DNA mutates away from the DNA structure of the B31 strain, how do current test kits function in discovery of Antibodies which are not picked up by current B31 test kit Borrelia B31 strain proteins?
6. How effective are DNA B31 Borrelia test kits in the blood testing of European type Borrelia infections?
7. What is the meaning of the phrase, "The PATIENT Failed Therapy for Borreliosis complex disease"?
8. Do physicians ever "fail patients" with Borreliosis complex?
9. How many Genotypes of USA Borrelia are now known to be in existence?
10. Do mutations in Borrelia DNA alter the shape of the mutant Borrelia shape?
11. Are mutant Borrelia misdiagnosed in microscopic studies by USA and by European pathologists? Why are Biofilm type Borrelia infections ALWAYS CHRONIC Borrelia infections?
12. Does the CDC accept CHRONIC Borreliosis complex type illnesses in humans?
13. Does the CDC promulgate the notion that Erythema Migrans or the "Bull's Eye" type is the only acceptable skin sign of Early Lyme Borreliosis?
14. Are there at least 17 different Erythema Migrans skin patterns which are encountered more frequently than is the CDC "Bull's Eye" erythema migrans subtype?
15. Should the CDC Rules for diagnosis and therapy of Lyme disease be isolated as a small subtype of the real life wide spectrum of Clinical forms of Borreliosis?
16. If a patient has "Borreliosis-complex", is the patient obliged to follow the "CDC Rules" for the small subset of "Lyme disease" illnesses?
17. Does Borreliosis include cases of deaths, verified by autopsy study?
18. Does the CDC website for Lyme disease include references to ANY DEATHS from Lyme disease?
19. Does Borreliosis Complex include reports of autopsy confirmed Human deaths in European patients?
20. Does the CDC Lyme website include blindness as a possible presentation of Lyme disease?
21. Does Borreliosis-complex include many many reports of Human blindness as a complication of human Borreliosis complex infections?
22. Is there a "Kindergarten simplification" of the Disease presentations of Borrelia and related co-infections?
23. Is there at present research underway in Norway to detect and to directly visualize Borrelia spirochetes in spiral form, Borrelia Cystic forms, and Borrelia String of Pearls forms in human circulating blood by direct Microscopic examination?
24. Are Round Body [Cystic Borrelia] forms capable of causing human tissue injuries?
25. Is the surface Borrelia protein demonstration to the immune system turned "inside out" by Cystic Borrelia?
26. Do round body Borrelia regenerate spiral forms of Borrelia under correct conditions?
27. Is a "clinical " diagnosis of Lyme disease or of Borreliosis - complex ever medically justified? 
28. Did Dr. Allen Steere in 1975-1981 have any blood tests available to him to ratify his diagnosis of any case of Lyme disease?

Videos I II III IV  will assist you in answering these and other neglected topics in the pathobiology of Human Borreliosis - Complex  infections.

Go to YouTube  ------- search for "Lyme MacDonald"--- to find the FREE video lectures or see if this LINK takes you to a collection.

Sincerely,
Alan B. MacDonald, MD
August 31, 2013

Two bites

As stated many times, my biggest concern is about the children getting bitten, getting sick, and not diagnosed until the disease had taken a hold in their little bodies. They don't know the feeling of being healthy; they go through so many changes. And we, as adults, are quick to self-diagnose as growing pains, too much sun, not enough water, and a lot of other explanations.

I'm not saying every little symptom might be Lyme Disease, but due diligence in this case might be really good. Case in point - two bites on two young children, with the parents not knowing where to turn. One day soon, this MUST stop and doctors would be quick to act, unafraid to treat, and the whole system will benefit from it. I can dream, can't I?

FIRST TODDLER - Ottawa region

[Early in July 2013, from the child's mother:]
I went to my family Doctor because of a rash on my son, who just turned 3.  We went camping for his birthday.

Our doctor suspected Lyme disease and gave us a prescription of amoxicillin, 6 ml, three times a day for 10 days. He said it could be that or ringworm, but wanted to be on the safe side and gave a prescription.

I didn't notice an actual tick bite after this trip, but last Monday he started with a rash. I thought it was just a bug bite. It started to get bigger and bigger. I gave him some Benedryl, which did nothing. When it lasted a few days, I thought, maybe a spider bite. Then it just went all over him: his chest, bum, arm, leg. That's when I made the doctor's appointment. He has also since started complaining of sore stomach and legs (he points to knee area specifically). I thought maybe just growing pains.

One month ago we were camping and found a tick in the bed he and I shared. But I checked him over, and everything looked fine.

I am very worried and would like to see a doctor who has more experience with Lyme Disease.

[Reply from dr. Ernie Murakami:]
The rash is more generalized  and large. The dose of antibiotics is correct, but the length of treatment is too short.

[Three days later, from the mother:]
I was able to get 3 additional weeks of meds for my son, so 31 days total. I hope he will have no further complications.

[Two weeks later, from the mother:]
He had been responding well to treatment, but has been complaining about headaches and stomach aches. His behaviour was so much better but has seemed to be erratic again. I'm hoping for the best outcome from his antibiotics, but am still worried.

SECOND TODDLER - Peel region
On the same day as the original email from this boy's frantic mother, I received another email and picture. This time it was a little 2-year old who was bitten.

Quote below:
My son who is 2 years old was bitten by a tick and has the tell-tale target bite on his elbow. We went to our GP today and they gave us a ten day treatment of antibiotics.  I just want to confirm I am doing everything I can do to make sure if he has Lyme we do everything now to make sure he is rid of it.  My brother in law has been living with Lyme for many years and we are well aware of it's harmful effects.

[Reply from Dr. Ernie Murakami:]
"You should insist on 4 weeks minimum on this child with this rash since it is a little larger than usual target rash."

PROTECT YOURSELF FROM TICK BITES

As the August long weekend here in Ontario promises to be sunny, bright and beautiful, please remember to pack care and prevention along with your swim and picnic stuff! Bug spray with DEET, socks covering the bottom of light, long pants, and stay on the path while hiking - those are the three main things.

Check your clothing and pets for ticks because ticks may be carried into the house on clothing and pets. Both should be examined carefully, and any ticks that are found should be removed. Keep the tick by putting it into a sealed baggie with a moist piece of paper towel or cotton wool. Placing clothes into a dryer on high heat for 30 minutes effectively kills ticks.

PERFORM DAILY TICK CHECKS: 

• Under the arms
• In and around the ears
• Inside the belly button
• Back of the knees
• In and around all head and body hair
• Between the legs
• Around the waist

VIDEO TO SHOW KIDS

For those who are squeamish about bugs, watch this short little video talking about this serious problem in a light-hearted way:

Lymies, an Ontario doctor needs education ....

Lyme patients, friends and caregivers, please unite! You might have seen a TV excerpt about Lyme Disease last night (July 18) on CHCH out of Hamilton, Ontario.  Anita, another suffering Lymie (blog below) with currently no hope of getting treatment in Canada, gave an interview to Maria Hayes of CHCH.  They also interviewed Dr. Douglas Sider to get the Public Health Ontario perspective.  His email  address is below, and underneath that I'll quote the letter from Jim Wilson, president of the Canadian Lyme Disease Foundation in response to his statements.

Here are the EXACT WORDS HE USED. My friend Kim (see previous blog entry) used her PVR and made sure she wrote it down word for word.   His comments were the following:

"We are still learning lots about Lyme Disease. It's an infectious disease that we call emerging.  The validated blood tests we use here in Ontario are very effective in picking up the fact that you have the Lyme Disease diagnosis and the treatment is very effective."

There are also a number of physicians not so much in Ontario but across the border who are willing to subject people with ...to my mind are questionable diagnosis of chronic Lyme Disease to prolonged antibiotic therapy and we've got good evidence of the risks versus lack of benefits."

Doug Sider
Medical Director
Communicable and Infectious Disease
+1 (647) 260-7313
doug.sider@oahpp.ca

Lyme friends and caregivers, please send this doctor an email and let's try to educate him with the facts and realities of living with long-term Lyme Disease here in Ontario and also in the rest of Canada. You know my story, about being dropped from treatment in Canada and being back in ER within three weeks. Treatment had to start all over again in the USA, since my body relapsed because treatment was halted too early. I'm not alone in that situation. 

 

Jim Wilson at the Brampton Lyme Walk

Jim Wilson's response to Dr. Sider: 

Dr. Sider, Your embarassing (for government)  interview regarding Lyme disease 

Dr. Sider,

You have just misinformed an unsuspecting Ontario population by going public on CHCH radio in Hamilton with these statements quoted below this paragraph, and as you see we require answers.

"We are still learning lots about Lyme Disease. It is an infectious disease that we call emerging.  The validated blood tests we use here in Ontario are very effective in picking up the fact that you have the Lyme Disease diagnosis and the treatment is very effective."

There are also a number of physicians not so much in Ontario but across the border who are willing to subject people with ...to my mind are questionable diagnosis of chronic Lyme Disease to prolonged antibiotic therapy and we've got good evidence of the risks versus lack of benefits."

In your position representing the Ontario government as a taxpayer salaried Medical Director, Communicable and Infectious Disease, Ontario Agency for Health Protection and Promotion you have just intentionally misled the public regarding a potentially deadly illness.  You are not an uneducated man in the field of Lyme borreliosis or you would not have been put forward to address the issues. 

What was the validation process of your testing and more importantly, how are your tests able to detect the diversity of Lyme bacteria shown to occur in Canada when no other two-tiered serology employed in Canada or elsewhere in the world has that ability?  

Considering the potential harm this may do to many Ontarians who have just heard you, will you provide us immediately with supporting documentation in the form of peer-reviewed, evidence-based research that substantiates your confidence in the "validated" blood tests.  

Also, who "validated" the tests?  Where is this published, as it must be to form public health policy?  We don't want the written policy, we want the science validating your comments and tests.

Obviously a man in your position is aware that Health Canada published a warning last fall about Canadian tests not being able to detect the diversity of Borrelia known to occur in Canada, more and more of which are becoming known to be human pathogens.

Ontario tests are 100% incapable of detecting Borrelia miyamotoi, andersonii, hermsii, americana and many other strains/species that are far enough removed genetically from the strain used in your confirmatory western blot. Many of these are known to exist in Canada so under whose authority have you informed Ontarians that your tests, "are very effective in picking up the fact that you have the Lyme Disease diagnosis"?  Is this an official government of Ontario position?

What evidence do you have that all those thousands of Ontarians who have left the province to get proper diagnosis and treatment are at serious risk? You publicly stated they were at risk, the public requires the proof for informed consent decisions. 

Has even one patient in Ontario been given the evidence to make an informed decision on the risk to benefit ratio? Not at all that we are aware of.

How does your alleged risk of longer term antibiotic treatment compare to the many serious drugs prescribed by Ontario physicians to manage symptoms, one by one, drug by drug, as opposed to addressing the cause of their overall state of health?  How does the risk of longer term antibiotics stack up to Tylenol for example?

Why do you want to keep Ontarians who are chronically ill home in Ontario with no confirmed diagnosis, or another diagnosis due to a negative Ontario Lyme test, but medicated to the hilt with everything but something that will treat the cause of their illness?  Clearly your message signaled them not to leave.  It is not for the greater good, of the public and the related antibiotic resistance issue, while food farmers still use by far the largest amount of antimicrobials including antibiotics.  That certainly can't be an argument of yours?  The only benefit of keeping sick Ontarians at home appears to be in favour of the pharmaceutical industry... we simply state the appearance of what is before us.

What has the province done to measure the improvement of the patient's quality of life after longer term antibiotic intervention (please don't provide us old research that has long since been discredited because they defined the wrong patient groups by the very design of the study using the same limited serology), and, what has the province done to measure the reduction of the need for these out of province patients to be on 'daily symptom management pills for the rest of one's life' paid for by the Ontario taxpayer in an ever increasing amount? 

These public comments you made are very serious statements coming from a person who people expect honest, complete information from, so those statements require very solid evidence. 

In truth, it is our opinion that you have no idea how many or all those thousands of people tested for borreliosis in Ontario in the past 3 decades actually do have the disease because your tests have always been far too narrowly powered.  All research indicates we are correct.

We expect your reply shortly with the supporting evidence because the province through you has just made some very serious statements that will affect the health of Ontario residents.

By way of this letter we are asking the Ontario Premier to intervene by implementing a mechanism whereby Lyme borreliosis patients and their experts have an equal voice at any policy/guideline making level and that current policy and guidelines be immediately thrown out and reworked with our input.

CanLyme can provide expertise at any level.

Regards,

Jim Wilson
President, 
Canadian Lyme Disease Foundation

www.canlyme.com

 ANITA's BLOG LINK ABOUT HER LYME JOURNEY: http://lymefacts.wordpress.com/

Meeting today with Member of Parliament, Kyle Seeback

Posting after a full month of hiatus from the blog, dealing with a heap of extra work, overtime, trying to learn new stuff, and working on a new international project. Thank you if you still stopped by the blog despite a lack of updates.

Today's heat wilted us again, added tornado warnings for an area around us, and had everyone seeking the coolness of air conditioning. I've got pictures taken inside the car, with temps registering 39 C (Monday) and 44 C (Tuesday). All our igloos have melted .... But we are promised relief in the next few days.

We had another form of relief as well, during a meeting this morning in Brampton, Ontario. I'm not at liberty to give all the details yet, but there will be follow-up very soon, and I believe that promise!

Thanks to City Councillor John Sanderson, who arranged for a meeting with MP Kyle Seeback, five of us met today to discuss the problems around Lyme Disease, lack of doctors to treat, patients being set adrift and not enough warnings put out for the general public. The bottom line is still that early diagnosis and treatment usually help to control the disease. If allowed to spread, the cost on all levels can be debilitating.

John Sanderson, me, Kyle Seeback, Rossana, and Kim

Mr. Seeback was very supportive. He knew a little about the plight of Lyme patients, but was suitably shocked and upset about the fact that we are not able to get treatment in Canada, that doctors are sent "on vacation" and that we have to seek help elsewhere. He agreed that we have to get the Federal government on board. He was also aware of the Private Member's Bill being brought forward by Elizabeth May to ask for a National Lyme Disease Strategy.

Rossana, who lost her husband to Lyme Disease and has been an outspoken advocate for years, talked about the new foundation she founded in his name and about what is being planned there. The hope is that the research facility will be open in 2015. [ If you missed that post, here is more, under the heading "New Foundation for Vector-Borne Diseases".]

Kim and I have both been sick with Lyme Disease for years, visited many doctors and specialists in Canada and found no help or correct diagnosis. Eventually we both had to seek treatment in the USA, pay out of pocket, spent years in treatment and still have to deal with the devastating results of the disease running rampant in our bodies for years before that. We are both now in remission. Rossana, Kim and I all and receive emails every week from people who are newly infected with nowhere to turn.

This will stop. But it might take Superman to help us!

Young Evan in his Superman shirt, admiring the Lyme Mobile

BREAKFAST AT APPLEBEE'S on SATURDAY
If you are in the area near the west end of Toronto, Mississauga, Etobicoke, Brampton, Caledon (Counties of Peel, Caledon and Halton Hills), please let me know if you still want a ticket for breakfast at Applebee's on Saturday morning! We have the place to ourselves between 8 am and 10 am. A ticket will buy you a short stack of pancakes with trimmings, bacon, coffee, tea or juice. For each ticket sold, 70% will be donated to the cause of Lyme Disease awareness. Email me through the Contact button above; there are still some tickets available.

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. 

Worldwide Lyme suffering

May is over. This was one of the busiest but also most rewarding months, creating awareness around Lyme Disease. People from all over the world took part in events, told their stories, stood up and asked for support, better tests, the right to treatment and the right to live their lives. I'm so grateful to have met so many people, working together, giving what time and energy, ideas and support they could muster so that others would be spared the pain so many of us had to live through.

Charlotte Therese Björnström from Sweden, who has suffered from this awful disease for 25 years, put together a video from footage, pictures and sound clips people sent from all over to create a small glimpse for others to see and share. There are voices from Australia, USA, South Africa, Spain, Switzerland, Finland, Germany, Canada .... translations are part of the film. For your own education, please take twenty minutes to watch it and to share with others:



The original music used as soundtrack in this video was written and performed by a young woman battling Lyme Disease herself. She is 19, lives in Australia and has been sick for ten years -more than half her life. Her name is Emily Madden*.




Right These Wrongs
We've been through a lot, we've been through it all, 
One day we stumble, the next day we fall.
Like anyone else we had dreams. 

Our lives were alight, once burning bright. 
Now fading each day is an uphill fight. 
And like anyone else, we want life. 

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall. 
To regain our lives and to right these wrongs. 

Identities lost, but only for now 
'Cause through all this pain, a strength has been found. 
And with everyone else, we'll be heard ...

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall
to regain our lives and to right these wrongs. 

We're not disappearing like they want us to. 
We're not going anywhere, anytime soon. 

SPREADING WORLDWIDE
This disease is spreading way too fast, and none of us can understand why we have to struggle so to get tested, diagnosed and treated. If diagnosed and treated early enough, it is completely curable. If left to ravage the whole body, nervous system, and all organs, it takes much longer to get under control. The treatment itself can do damage to the body, just like cancer treatment causes people to lose their hair, nausea and possible damage to healthy cells.

We are not trying to create panic or pandemonium. We want people to be educated and informed so that they can protect themselves. Look at it as giving you a safety belt or a parachute - what you do with it, is your decision.

Next event I'll be handing out information, with the help of friends, will be at Caledon Day on June 15. If you are anywhere near the counties of Peel, Halton Hills or Caledon in Ontario, see if you can drop by. Entertainment is free and ends at 11 pm with a fireworks show.

*Emily's story link: Emily's sick but Australia doesn't recognize her disease

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

About ribbons and books

Diane with green Lyme Awareness ribbon

Change of pace required! It feels as if I've been running a marathon these last few weeks, and I'm sure many others feel the same way. This month of May has surely been a busy one with Lyme awareness being pushed far and wide. Hoping and praying that there will come a change, soon, before more people have to lose their health, their sanity and possibly their livelihood!

I've been sending packages of Lyme Awareness bracelets all over the place and am waiting for pictures to arrive.

Here's Diane in England, a long-time friend who also spent time with her family of growing boys with us. That is almost a decade ago now!

Diane wore her green Lyme awareness ribbon and bracelet to work, making copies of brochures to hand out and generally spreading the word as best she could. Thank you so very much!

More ribbons and bracelets were sent to China, Sweden and elsewhere in Canada. Packages were also sent to South Africa, but oh my goodness, the postal service .... So far, nothing reported as having arrived. A birthday card I sent to a friend in November 2012 "only" took 6 months to be delivered, so I guess we'll have to wait and see.

Book giveaway

If you've been playing around on this blog, you might have noticed the headings on the right side, with favourite books, a personal Goodreads reading challenge, and so on. I've been using Goodreads for some years now to keep track of various books I read and still want to read, and especially of series of books by particular authors. The Lyme brain needs all the help possible!

Daughter-in-law Jenni, a graphics artist, does wonderful work and has been asking me to write down some of the stories I usually bored the family with at dinners or other get-togethers. She enjoyed the stories about growing up with meerkats, chameleons, hedgehogs, various cats and dogs and other critters. Our family was not the usual, I suppose. And I love all sorts of creatures, including bats, snakes, grasshoppers, colourful caterpillars, spiders and such.

So, for Christmas 2012, we put together a little book with about a dozen stories. She illustrated them beautifully, filled with joy and sunbeams. We printed copies to give to family and friends.

Front cover

The little booklets were received with much joy from kind people who supported our work. I couldn't believe how much work was involved and how many times the pages, stories, wording and more had to be redone, reread, checked and changed!

Below is one of the early versions of a page, showing one of Jenn's lovely illustrations. Some pages contain black-and-white illustrations.

If you would like to have a copy as well, three are up for grabs, available to Canada, USA, Australia and Great Britain. We don't choose the winners; they are chosen by Goodreads. Below is the information:

Goodreads Book Giveaway

Tiny Tales

by Marlene Ziehl Spies

Giveaway ends July 27, 2013.

See the giveaway details
at Goodreads.

Enter to win

Various eBook versions
For an eBook version, you can buy a copy or give away as a gift to someone else if you wish. We've kept the price very low in order for more people to enjoy a copy themselves, to read while waiting for an appointment or in line. It is available in all the most popular versions, including Epub.
Buy from Indigo.ca ; or Kobo ; or  Nook  ; or  Certification
Various other formats, including reading online in HTML format: Tiny Tales 

Thanks for reading, commenting or not, and sharing this blog and my journey through the maze of Lyme Disease.