Tuesday, November 24, 2009

Tick bitten child rushed to the vet

A mother in the UK discovers a tick bite on her 19 month old son and does what any normal parent would do, she takes him to the vet. After first going to their local hospital the mother, Vanessa Marsden, grew impatient and worried as the nurse, not knowing what to do, left to go ask for other doctors opinions and look up how to treat the tick bite. Not wanting to wait, Marsden called the local vet who saw them within 10 min and knew exactly how to remove the tick. Many of us know that most doctors are unprepared to deal with ticks and Lyme and it's great to see people searching out other options from qualified professionals, even if they are unconventional.

Oscar gold maybe in the future for Lyme doc

Could it be that Under Our Skin, the brilliant new Lyme documentary, could win at the Oscars? In the recent unveiling Under Our Skin has made it to the short of nominees for best documentary,. This could be the push that the film needs to get a major US distributor and finally spread the important message that Lyme is a serious and rapidly spreading pandemic. I know it's cliche to say “it's great just to be nominated,” but in this case it is. This could be the impetus to get many people out to see the documentary that normally never would have heard of it. I know the competition will be stiff but lets keep our fingers crossed that this documentary will finally make it into the lyme light!

Tuesday, November 17, 2009

Yay for Lyme coverage!!!

I'm not sure why there is suddenly so much interest from the media about Lyme Disease but whatever the reason, I'l take it. CTV's investigative journalism program W5 will be featuring an in-depth story on Lyme disease in Canada. It is set to air Saturday November 14th at 7pm eastern standard time. Canadians from across Canada will be talking about how having Lyme has affected their lives. Make sure you tune in!

Considerations For Controversial Blogging

Have you ever considered starting a blog? Many people have, yet few stop to consider the possible repercussions of what they post online. How will this impact my life? Will this impact my family? What impact could this blog have on the topic or the people involved? These are very important questions to consider especially when writing a blog on sensitive an often controversial topic such as Lyme Disease. I wondered if other Lyme bloggers had the same concerns as I did so I sought out the opportunity to talk to Jennifer from “Living the Lyme Life”. Jennifer who has had Lyme disease since 1995 started blogging in March of 2008. Here's what she had to say on the topic.


What was your motivation for starting your blog and what do you hope to gain for yourself or your readers by writing?

I began my blog as away to create memories for myself. I was struggling during my treatment to remember things and after reading several non-Lyme blogs I began to ponder starting my own in order to journal the memories. I wanted to write down not only Lyme Disease things, but also normal activities as a sort of diary for myself. However, I also knew that others would eventually find my blog. I hoped that it would give them knowledge that those with Lyme can get better even though I was still struggling with Lyme at the beginning of my blog. I wanted to share my good and bad moments with others so they could get to know me better as well as others with Lyme Disease. I wanted to bring Lyme to the lime light and wanted my friends and family to understand what I was going through.


How do you manage having a blog while balancing other aspects of your life like relationships, social life, hobbies, work and your treatment?

If I have a few ideas for upcoming blogs about information, I immediately write a basic post and schedule it to post a month or two in the future so I can work on them daily until they are ready for publishing. I currently have four posts waiting for publishing. Some are completely ready to post while others only have a title. I try to post a variety of things which include my relationships, social life and hobbies. I have to be careful about my specific treatments because I am seeing a controversial Lyme doctor. I am very cautious about protecting him and his practice. I would never want to compromise my doctor because of something I say on the blog. As far as work and family, they are pretty much an off limit topic on my blog. When I am at work, I rarely think about my blog or my Lyme for that matter. My family knows I maintain a blog and in fact they read it. It keeps them up to date with what I am doing and it allows us to talk about other things. Currently, my treatment is limited. I am essentially just on supplements that help me maintain my energy level. Some months I write more than others. Sometimes I get so busy in regular day to day life that there aren't enough hours in the day to devote to my blog writing. I also choose to work on the blog when my husband is still at work.


Given that Lyme Disease is a very controversial subject what made you decide not to blog anonymously and make your blog more personal? Do you worry that you may be making yourself into a target?

After being a blog reader for several different health issues, I learned very quickly that I was more drawn to those that were more personable. I went back time and time again to those families that posted photos and talked about not only their illnesses, but other things as well. Because Lyme is such a controversial illness, I don't want people to think that I am fake. There are so many fake stories running around on the internet that I did not want to be accused of faking a story to get attention. Essentially while I know that I'm being read, I don't really feel that I am a public figure in the Lyme community. I am a single patient that happens to write a blog. I am a single patient that has happened to write two articles for the Public Health Alert. I don't worry about me being a target, but I do worry about my doctor being a target.


Do you ever worry about being a “non-expert” (ie. Not a doctor or specialist) providing information to the public about Lyme Disease? Do you worry about providing the right information about the disease or possible treatments?

As a Lyme patient, I feel that I'm in a great position to discuss the possible treatments. However, one treatment does not work for everyone. Everyone is unique in their treatment needs. Some Lyme doctors believe that only antibiotics can heal Lyme. I believe in an integrative approach, but also understand that this approach isn't for everyone. I hope that everyone that reads my blog understands that my intention isn't to suggest that Integrative treatment is better than Traditional treatment. I honestly feel that if I hadn't decided to go with the Integrative approach that I would be dead. Some bloggers talk about going to Germany, others talk about the Rife Machine, others talk about all antibiotics and some even talk about going to Mexico. What works for one may not work for another and I just happen to believe in the Integrative Approach.


Do you think it is necessary for people to educate themselves completely on their subject matter before starting to write a blog?

I think that people can start a blog at any point in time about any subject they like. The only thing that ever bothers me is when I find my exact wording on another person's blog. It's only happened once, but it bothered me. I had worked really hard on one of my posts when I had major brain fog. It took me three weeks to compose and a few weeks later I saw it on another blog. Shortly after the person asked me if it was okay. It would have just been nice if she wanted to use the "article" if she had referenced it to my blog instead of just writing it as if it were her own. When I read other blogs, I do look to see if they have knowledge of the subject they are discussing. As far as blogs specifically Lyme related, Lyme treatment and ideas change every day. If we waited until we were all knowledgeable on Lyme, then there would never be blogs on the subject. I wish I had started my own blog prior to getting the diagnosis. It would help me to remember exactly what I went through to get to the point where I mostly consider myself well.

Monday, November 16, 2009

Lyme Disease Lepers

If you haven't seen the Global TV coverage of “Lyme Disease Lepers,” on October 11th, you need to take a few minutes to check it out. Many in the Lyme community have voiced concerns about lack of treatment, poor quality testing, and the lack of recognition of the disease in Canada. This one broadcast actually covers all those concerns and more. It goes even further to discuss the alleged intimidation of Canadian doctors like Dr. Ernie Murakami and Dr. Jozef Krop as well as the IDSA guidelines for testing.

Thursday, November 5, 2009

Ticked Off

After I received my diagnoses in another province, I returned home hoping to find a family doctor who would be willing to treat me locally. I met with many doctors and was told the same thing by all of them. It was almost impossible to get Lyme Disease in Canada!

They told me there was no way I could have Lyme considering I hadn't been to the US and I was not a back woods camper in Northern Ontario. I couldn't believe it! They completely dismissed the fact that I already had a clinical diagnoses from Lyme literate doctor.

“How about we just treat your symptoms individually,” said one doctor after I handed her my 3 page list. I was shocked. I decided to go looking for statistics on Lyme in Canada myself to see what they were basing their decisions on.

“Lyme disease is not a nationally reportable disease in Canada” says the Public Health Agency of Canada on their Lyme Disease fact sheet. This maybe be the reason it has been so hard to find any statistics on incidences in Canada.

The chart below was used at the Vancouver Wall of Hope (you can see it in the news clip in the back ground). It shows that Canada still has a long way to go in recognizing the existence of Lyme.


Wednesday, October 28, 2009

Must see Lyme documentary!

Under our skin” is a ground breaking documentary on Lyme Disease. This is a must see movie for anyone who has or is involved with someone who has Lyme.

I was very lucky to have the opportunity to see it when it came to Ontario at a small screening. I brought some of my extended family to see it with me because I knew that since my diagnoses they have been incredibly sceptical about Lyme. Despite my attempts to explain what I was going through, how it was affecting me and what treatment might be like, I knew they didn't understand. Once they saw the movie, they absolutely changed their minds.

So if you or anyone you know would like to know more about Lyme go see this movie!!!



Lyme 101

In looking for a definition of Lyme I discovered that the definitions are as varied as the symptoms. The most concise definition is given by The Centre For Disease Control. They define Lyme Disease as “A tick-transmitted inflammatory disorder that begins with a characteristic skin rash, and may be followed weeks to months later by neurological, cardiac, or joint abnormalities.” Encyclopedia Britannica gives a more in-depth look at the stages of Lyme and many of it's symptoms both short term and long term.


“In humans the disease progresses in three stages. The first and mildest stage is characterized by a circular rash in a bull’s-eye pattern that appears anywhere from a few days to a month after the tick bite. The rash is often accompanied by such flu-like symptoms as headache, fatigue, chills, loss of appetite, fever, and aching joints or muscles. The majority of persons who contract Lyme disease experience only these first-stage symptoms and never become seriously ill. A minority, however, will go on to the second stage of the disease, which begins two weeks to three months after infection. This stage is indicated by arthritic pain that migrates from joint to joint and by disturbances of memory, vision, movement, or other neurological symptoms. The third stage of Lyme disease, which generally begins within two years of the bite, is marked by crippling arthritis and by neurological symptoms that resemble those of multiple sclerosis Symptoms vary widely, however, and some persons experience facial paralysis, meningitis, memory loss, mood swings, and an inability to concentrate.

Because Lyme disease often mimics other disorders, its diagnosis is sometimes difficult, especially when there is no record of the distinctive rash. Early treatment of Lyme disease with antibiotics is important in order to prevent progression of the disease to a more serious stage. More powerful antibiotics are used in the latter case, though symptoms may recur periodically thereafter.”


This is probably the most clear and concise explanation of how Lyme affects the body that I have ever encountered.


Welcome to Life With Lyme!

I am 28. I am Female. I have Lyme.

Just over a year and a half ago I was diagnosed with Lyme Disease. Both my mother and sister also have Lyme. I contracted the disease from mother who was bitten by a tick when she was 6 months pregnant with me. I am now almost 28 years old and am finally ready to deal with the fact that I have Lyme.

I have had a myriad of heath problems from the time I was born. To date my list of health problems includes but is not limited to the following: Celiac Disease, Bi Polar Disorder, learning disabilities, skin problems, muscle spasms, hair loss, reproductive problems, joint pain, muscle fatigue, and chronic inflammation.

Although I have been given many diagnoses, labels, and suggestions and over the years there was something about them that never felt right. The other problems was that doctors also told me that there was nothing wrong with me and it was all in my head.

I was so grateful when I finally found a doctor who would take me seriously. To hear that there was actually a name for what I had was such a relief. At the same time though, it was also frightening.

As I tried to make my way through the literature on Lyme I became overwhelmed, both at the severity of the disease and at the contradictory information about Lyme and it's treatment. I have come to realize that I need to educate myself more and in turn help to educate others . When I have tried to explain this disease to others I find myself coming up short. I can not explain or articulate how Lyme operates. I can not seem to be able to come up with the medical terminology to explain what is happening to my body. I am even finding it hard to explain when asked how it affects me on a day to day basis since I have no reference as to what a healthy body feels like.

The goal of my blog is to provide information and educate people who have Lyme or for people who know someone with Lyme.

Now my mission is to find out more. More about the disease. More about the medical terminology and jargon. More about treatment. And hopefully, in writing this blog, more about me.