Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Thursday, November 27, 2014


Below is an article from thestar.com from November 26, 2014.  Wow, it's great that they are continuing to spread the word about Lyme disease.....and in the winter!  However, there are a few missing details in the article.  Frankly, the article reads like an overly simplified statement that the public health unit might make.  Sadly, the public health unit doesn't have a full understanding of the gravity of this illness.  Within the article, I have taken my "teacher red pen" and added or corrected information.  Please read so that you are not misinformed as well.

Ticks carrying Lyme disease bacteria found in Rouge Valley

Health officials warn the public of ticks and Lyme disease becoming "established" in the area.

Health officials in Toronto, as well as York and Durham regions are warning the public after blacklegged ticks in the Rouge Valley tested positive for the bacteria that causes Lyme disease, according to Toronto Public Health.

A statement released Wednesday said public health units searched for blacklegged ticks, which are the only type of ticks in Ontario that can carry the disease, after receiving reports from members of the public.  My LLMD (Lyme-literate medical doctor) told me that he believes that mosquitoes and black flies can carry the disease, too!  Officials then sent samples for testing and identification. Some tested positive.
Although the ticks are more likely to infect people during the warmer summer months, Toronto Public Health warn the bugs and the disease “are becoming established in the Rouge Valley,” which has been a low-risk area for Lyme disease.  As far as I'm concerned, Lyme has been here for a while.  What else would explain the hundreds of Lyme patients left with no care after a Toronto infectious disease doctor closed his door to Lyme sufferers in 2011 (due to threats from the medical board)?  This caused a mass exodus of patients to the U.S. in search of an LLMD there.
Health officials are advising the public to reduce the risk of getting bitten and infected by taking precautions, including: wearing long-sleeves, long pants, socks and closed shoes; tucking pant legs into socks, and wearing light-coloured clothing to make ticks more visible; using bug spray with DEET on clothes and exposed skin, as well as checking skin and clothing thoroughly after activities in wooded areas.  DEET is not effective in repelling ticks!  I would not rely on it.  However, there is a spray called permethrin that is used on clothing (not skin) which does repel ticks.  Also, you should do a tick check on your body when you come in from the outdoors, as well as shower right away.
Toronto Public Health says early removal of ticks will prevent possible infection, as the transmission requires the tick to be attached for at least 24 hours.  There is much controversy about this. Many Lyme specialists say the time is much shorter than this.
Early symptoms of lyme disease can be treated with antibiotics.  Very true!  But if you are bitten and do NOT have symptoms, GET TREATMENT ANYWAY!  My LLMD would provide 3 weeks of antibiotics with a bite in the absence of symptoms.  If early symptoms have developed, then he would give 6 weeks of antibiotics.  If you are sick for a long time before diagnosis, then LLMDs would prescribe antibiotics on an ongoing basis until symptoms have resolved. 
Symptoms include fever, headache, muscle and joint pains, fatigue, and red bull’s eye rash.  Yes, these are often the symptoms of early, acute Lyme disease.  But not all of us produce these symptoms.  Only 50% of people bitten develop a rash, and it isn't always a bulls-eye rash.  In my case, I had NO early symptoms!  I developed all sorts of strange symptoms, including neurological symptoms, many months later.  (It might even have been a year or two later.)

In this article, there is no mention of the fact that the baby ticks, called nymphs, are the size of a poppy seed!  You might never know it burrowed into you.  And apparently, the tiny ones are highly infectious.

The article also doesn't mention that you may have to FIGHT with your GP or the ER doctor to give you antibiotics!  Some doctors will want you to send your tick to the lab for testing before antibiotics are prescribed.  My advice......DO NOT WAIT!  It could take a week or two to get the lab results back, and by then the bacteria may have spread to other organs.  Insist on treatment right away!  It is not worth the risk!

Finally, be sure to remove an imbedded tick properly, otherwise the tick is more likely to inject you with the bacteria.  See my tab above called "Protect Yourself from Ticks" for the safest methods of tick removal.

The Toronto Star gets a "C" for this article.  They need to do their homework better.  The public needs more information than this.

Thursday, November 20, 2014

A Medical War

One thing is for certain......we are at war.  There are casualties.  And there are some survivors.  Many are hovering in no man's land.  There is anger and there is misunderstanding.  Right now, it's messy.  And dangerous for many.  But I do think my side is gaining ground.

It's the Lyme war. 

People ask me, "Why can't you get treatment here?  Why don't doctors understand about this illness?"  Here is one LLMD's answer to this question.  You can check out his wealth of knowledge on his blog LymeMD.  This is what Dr. Jaller posted yesterday.

Why your doctor does not believe in Lyme disease

In his new book, Dr. Horowitz gently discusses the issue. He talks about a paradigm change. This doesn’t answer the question for patients on a visceral level.
I surveyed some physician friend colleagues asked them if they can think of another disease that has been as divisive as Lyme disease.  They always come up empty-handed.  

Your doctor is being bashed by medical boards, ridiculed by other medical professionals, even shunned and ostracized and generally not having a good time (in some arenas, not globally).

You are angry, infuriated, incensed, bellicose or just pissed off. 

Patients new to this world all ask same question.  Why?

There is a war going on. Years ago, I had a conversation with an infectious diseases specialist I thought was collegial; at the end of the discussion I said “I guess we’ll just have to agree to disagree.” She said no we won’t and proceeded to report me to the Medical Board. Doctors don’t usually report their colleagues to Medical Boards. Most follow the rule, “people who live in glass houses shouldn’t throw stones”

Phenomenologically, Dr. Steere and infectious diseases specialists saw Lyme as a vector borne illness causing joint pain or rash: something straightforward. Something easy to treat.

Phenomenologically, Dr. Burrascano and primary care colleagues saw patients in Lyme endemic areas as poly-symptomatic; patients had every symptom in the book.

Dr. Steere, Dr. Burrascano, myself and likely all the physicians I can think of were taught that there is no disease that causes so many disparate symptoms. They have a “positive review of systems,” meaning they have a psychiatric disorder. Easy one.  

Lyme breaks the mold.

Dr. Burrascano and others thought all these patients cannot be crazy; something else is going on. The cohort of sick patients lived in rural areas known to have a lot of Lyme, they enjoyed outdoor activities, they had a history of previously treated Lyme disease, they had a history of tick bites, the had a history of rashes and summer flus, or they just had an insidious, progressive disease. 

First impressions are important. Dr. Steere’s first impression was that Lyme causes joint pain and is easy to treat.

Dr. Burrascano’s first impression was that these were very sick patients, commonly referred to a “train wrecks.” These patients got better when given antibiotics; symptoms returned when antibiotics were stopped; symptoms got better again antibiotics were restarted. The first impression was that Lyme is a complex multi-system disease which is hard to treat.

These two groups were describing something entirely different, something universes apart. Both were called Lyme disease. 

The war began. Steere was reported to a Medical Board. Burrascano was doomed. Once the war broke out the truth didn’t matter. Since Steere and his colleagues are associated with Ivy League institutions they won the battle. They have created educational programs for doctors espousing their point of view and ridiculing the views of the other camp.

I hope the answer to the big question is contained in the above narrative. 

In this war I see the IDSA crowd is calling lymies and their doctors crazy and “antiscience.”  Lymies believe the IDSA crowd is involved in some vast conspiracy. Get a grip.

It comes down to stubbornness, hubris and ego. They call me “antiscience.” A friend once told me: “watch what they call you; that is what they are.”

Friday, November 07, 2014

Sleep, glorious sleep!

Oh my, this fall is passing by so quickly!  Time doesn't usually do that for me; it's usually slooooow, but not this year!  Soon it will be time for winter boots and Christmas preparations.

So how have I been doing?  On the Lyme front, VERY well!  My typical Lyme symptoms are still under control, and I've been able to wean completely off sleep medication.  For that I am so, so grateful.  I've been sleeping wonderfully (i.e., falling asleep easily and sleeping straight through with minimal wake-ups in the night) which is something I was deprived of when I was in the grip of the illness.  That said, I'm not sleeping LONG ENOUGH - totally my own fault for going to bed too late.

For all of the Lymies out there, here is one of the most important pieces of advice......GET ADEQUATE SLEEP!!!  It's important for your healing.  It's also important to help keep the Lyme in remission because our body repairs itself at night and adequate rest improves the immune system among other things.  Wow, I sure notice a difference in my life when I'm not sleeping enough.  I drag myself around all day, feel so lethargic after work, have no motivation or energy for exercise, and crave sugar to give me a boost.  Bad on all fronts. 

If you have Lyme and are suffering from insomnia, I urge you to speak to your LLMD about temporary solutions.  I absolutely hated the idea of being on sleep medication, but realized it was necessary.  I was so afraid of becoming addicted to it.  The sleep medication I used, zopiclone, is not "technically" addictive.  However, your body can develop a tolerance to it and require more and more.  When I decided to try getting off zopiclone, I weaned off very slowly over many months, cutting my pill in half, then in quarters.  Then, I got a lower dosage pill and cut that one into quarters.  By the time I stopped taking it, the tiny bit I had been taking really wasn't doing anything for me anyway, so it was pretty easy to just quit at that point.

On that note, let me wish you all the best in your quest for good sleep.