An ILADS list – Over 700 Peer Reviewed Journal Articles

Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases

The following is a list of over 700 peer reviewed articles that support the evidence of persistence of Lyme and other tick-borne diseases. It is organized into different categories—general, psychiatric, dementia, autism and congenital transmission.

 

http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf

 

 

 

 

Rewriting the Public Health Agency of Canada’s webpage on Lyme Disease

What follows is the Public Health Agency of Canada’s webpage on Lyme Disease. I think it needs to be rewritten. Their information is vague, misleading, outdated and, in some areas, inaccurate.

Who am I? I am the mother of 3 children who are all clinically diagnosed, and lab positive (outside of Canada), for Lyme Disease and the co-infections Bartonella and Babesia. I have been fighting everything that is Lyme in Canada for 4 years now. Change is coming, but not fast enough to allow my children to  get their childhoods back.

The entire article from the Canadian PHA’s web page is here. I haven’t taken anything out, I am only adding, in bold italics, some changes that I personally think should be made to their information.

My additions do make the info page rather long… It definitely requires further tweaking but there is no doubt in my mind this is something that needs to happen. I talk to people about Lyme Disease on a fairly regular basis where I work and there are a lot of misconceptions out there.

Feel free to share this with whomever you think might benefit from reading it. If it just gets one more person thinking that change is necessary I’ll consider it time well spent.

Dawn Goodman
Qualicum Beach, BC Canada


 

Public Health Reminder: Lyme disease

We have to get people/agencies/literature to stop using the term “Lyme Disease” and start saying something more accurate like “Lyme Disease and Co-Infections”. People have no idea that “Lyme Disease” is an “umbrella term” and almost always means “Lyme, Bartonella and/or Babesia, to name a few of the co-infections, as well.”

Why you should take note:

Lyme disease is a serious illness that’s present in Canada and spreading. Canadians at risk from Lyme disease include those, who live, work and/or play in close proximity to ticks that spread the disease.

It is true that Lyme Disease is spreading but IT ISN’T ONLY TICKS that spread Lyme Disease AND CO-INFECTIONS. Infection, however, does not solely rely on “proximity to ticks”.  Patients stories tell of transmission via many different types of biting insects (black flies, sand flies, fleas, mosquitoes) and spiders (a tick is part of the arachnid family too), sexually, via blood donation (The Canadian Red Cross really needs to start testing the blood supply for Babesia.), and congenitally. Once some actual research is done, these patients stories of transmission will be scientifically validated.

If not identified and treated early, Lyme disease can cause serious health issues. But there are simple and effective measures you can take to protect against it.

This is also true but the PHA doesn’t go on to explain what steps are involved to get treated early… IF you are fortunate enough to see what’s bitten you, and IF you are fortunate enough to develop that “classic bulls eye rash”, and IF you can get a doctor to take your request seriously and IF you can get 4 week of antibiotics you MIGHT be able to avoid your Lyme Disease becoming chronic and lifelong.

From ILADS – Removing A Tick:
The first thing to know is how to properly remove a tick. Any manhandling of the tick such as squeezing it, putting Vaseline over it, or holding a hot match to it, will increase the chance of transmitting bugs.
The tick should be removed with a fine pointed tweezers, grasping it from the side where it meets the skin, and gently pulling in the opposite direction from which it embedded.

From Dr. Burrascano’s “Managing Lyme Disease“, 16th edition, October, 2008
p37 “The physician cannot rely on a laboratory test or clinical finding at the time of the bite to definitely rule in or rule out Lyme Disease infection, so must use clinical judgment as to whether to use antibiotic prophylaxis. Testing the tick itself for the presence of the spirochete, even with PCR technology, is helpful but not 100% reliable.”
“An established infection by B. burgdorferi can have serious, long-standing or permanent, and painful medical consequences, and be expensive to treat. Since the likelihood of harm arising from prophylactically applied anti-spirochetal antibiotics is low, and since treatment is inexpensive and painless, it follows that the risk benefit ratio favors tick bite prophylaxis.”

As you prepare to spend time outdoors, learn more about Lyme disease and how to prevent it.

What is Lyme disease?

Lyme Disease is a serious illness which can be spread by the bite of blacklegged ticks that are infected with the bacterium Borrelia burgdorferi.

Managing Lyme Disease, page 1 – What Is Lyme Disease?
“Traditionally, Lyme is defined an infectious illness caused by the spirochete, Borrelia burgdorferi (Bb). While this is certainly technically correct, clinically the illness often is much more than that, especially in the disseminated and chronic forms.”
“This includes infection not only with B. burgdorferi, but the many co-infections that may also result. Furthermore, in the chronic form of Lyme, other factors can take on an ever more significant role- immune dysfunction, opportunistic infections, co- infections, biological toxins, metabolic and hormonal imbalances, deconditioning, etc.”

Lyme Ontario:
“Lyme disease is a “Borreliosis” which is a multi-systemic illness caused by a spirochete of the Borrelia burgdorferi sensu lato family of bacteria. Our current 2-tiered method of testing is faulty- we currently test for one Borrelia species – “B31”. There is current Canadian research showing a new strain, “Borrelia Miyamotoi” found in ticks across Canada, which also causes a “Lyme-like” illness and there is no current testing for it in Canada. The are many strains or genospecies (subspecies) of Borrelia that cause Lyme disease (borreliosis) in humans. There are over 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.”

In regions where blacklegged ticks are found, people can come into contact with ticks by brushing against vegetation while participating in outdoor activities, such as golfing, hiking, camping and gardening.

Again… It’s not only ticks, and it’s not only the North American strain of Borrelia burgdorferi that Canadians are infected with. People travel all over the world and the ELISHA test is not going to catch an Asian, or European strain of the bacteria. But getting a negative ELISHA test in Canada means that you are not able to have the 2nd tier of testing, the Western Blot, done at all. It needs to be made CRYSTAL CLEAR that Lyme Disease is a CLINICAL DIAGNOSIS and that a negative ELISHA test does not mean that you don’t have Lyme Disease.

It should also be noted that ticks, and other biting insects & spiders, are EVERYWHERE. There is no “region” in Canada where they are not found.

Risk to Canadians:

While not all blacklegged ticks carry Lyme disease, populations of infected blacklegged ticks are growing. This means that the risk of contracting Lyme disease is on the rise across Canada.

Blacklegged ticks can be active throughout much of the year; however, your risk of a tick bite is highest in the spring and summer months. Take steps to reduce your risk if you spend time outdoors in areas where there may be ticks. As ticks are very small and their bites are usually painless, you may not know you’ve been bitten, so it’s important to be on the lookout for ticks and the symptoms of Lyme disease.

While the risk is higher during months of warmer weather it should be made clear that ticks, in Canada, are active year round.

Where are ticks found?

Blacklegged ticks are most often found in forests and the overgrown areas between the woods and open spaces, although it’s possible to be bitten outside of these areas. The following are areas where blacklegged tick populations have been confirmed or are establishing:

Southern British Columbia
Southeastern and south-central Manitoba
Southern and eastern Ontario
Southern Quebec
Southern New Brunswick and Grand Manan Island
Parts of Nova Scotia

Ticks don’t move far by themselves but they can attach to migratory birds, and may fall off far from their original location. For this reason, it’s possible to find infected ticks in other areas than the ones listed above. Surveillance is ongoing to confirm other areas of spread.

Just posting this list , citing only 6 Canadian geographic areas, is rather misleading and gives people a false sense of security. Yes there are areas considered to be “endemic” but you can contract Lyme Disease in every province and territory of Canada. It has been found on every continent except Antarctica. Migratory birds and climate change are thought to be responsible for this change in where ticks are thought to be found. It is no longer an east coast problem.

How to protect yourself:

Canadians are encouraged to spend time outdoors, be active and to remember to protect themselves against tick bites and Lyme disease. Ticks can be infected with more than one type of bacteria that can cause human illness, hence guarding against tick bites will protect you from more than just Lyme disease.

Here are some ways to protect yourself if you venture into forests or overgrown areas between the woods and open spaces:

Wear closed-toe shoes, long-sleeved shirts and pants
Pull your socks over your pant legs to prevent ticks from crawling up your legs
Wear light-coloured clothing to spot ticks easier
Use insect repellents that contain DEET or Icaridin. Repellents can be applied to clothing as well as exposed skin. Always read and follow label directions
Shower or bathe within two hours of being outdoors to wash away loose ticks
Do daily “full body” checks for ticks on yourself, your children and your pets
If you find a tick on your skin, removing it within 24-36 hours usually prevents infection.

It is remiss to say that removing a tick within 24 to 36 hours usually prevents infection without also mentioning that it has been said transmission can occur in less than 24 hours, as soon as 12 hours and in as little as four hours.

ILADS… “While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals, and a recent paper last year documented that this can occur in humans as well.”

Managing Lyme Disease page 12: “After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream.” And on page 19… “Decide to treat based on the type of tick, whether it came from an endemic area, how it was removed, and length of attachment (anecdotally, as little as four hours of attachment can transmit pathogens). The risk of transmission is greater if the tick is engorged, or of it was removed improperly allowing the tick’s contents to spill into the bite wound.”

Symptoms:

Initial symptoms differ from person to person, and some people will not experience any symptoms, which makes Lyme disease very difficult to diagnose. Furthermore, others may experience mild symptoms like fever or a skin rash soon after being bitten, while others may suffer severe symptoms, but not for weeks after the bite.

Signs and symptoms of Lyme disease can include one or a combination of the following with varying degrees of severity:

Fatigue
Fever or chills
Headache
Muscle and joint pain, spasms, or weakness
Numbness or tingling
Swollen lymph nodes
Skin rash
Cognitive dysfunction, dizziness
Nervous system disorders
Arthritis and arthritic symptoms
Heart palpitations
Untreated, symptoms can last years and include recurring arthritis, neurological problems, numbness and paralysis. Although not common, fatalities from Lyme disease have been reported.

If you develop symptoms of Lyme disease, contact your healthcare provider right away, as the earlier you receive a diagnosis, the greater the chance of a successful treatment. If you saved the tick that bit you, bring it with you to your medical appointment as it may help the doctor in assessing your illness.

Diagnosis:

Getting a diagnosis of Lyme disease can be difficult because symptoms vary from one person to another and may be similar to other infectious diseases that are spread by ticks. Your healthcare provider will likely:

Examine your symptoms.
Determine if you were potentially exposed to ticks by asking about your recent activities.

Asking about your activities is no longer a relavent question. You can be bitten by a tick in a city park or your back yard as easily as you can be bitten while hunting in the forest. But again… It isn’t only ticks that spread Lyme Disease and co-infections.

Your symptoms are a really important part of getting a diagnosis, because lab results may not always detect Lyme disease in the early stages, or if you were recently on antibiotics. Blood tests are clearer when the disease is further along. All lab tests have a margin of error which is why Lyme disease should be diagnosed by a doctor clinically first and foremost. Results of lab tests can be used as supportive evidence.

On page 7 of Managing Lyme Disease it says: “After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed. Therefore, if EM is present, treatment must begin immediately, and one should not wait for results of Borrelia tests. You should not miss the chance to treat early disease, for this is when the success rate is the highest.”

In 2011 the Council of State and Territorial Epidemiologists (CSTE), the American based organization responsible for providing CDC with disease surveillance guidance, stated that the two-tiered test is to be used only for surveillance purposes and not for diagnosis.

Treatment:

Lyme disease can be effectively treated with two to four weeks of antibiotics. Depending on your symptoms, and if you are diagnosed in the later stages of the disease, you may require a longer course of antibiotics.

It is recommended that you treat known tick bites with 4 weeks of antibiotics (100 or 200 mg of Doxycycline twice a day for adults. Amoxicillin is usually prescribed for children.) and for up to 6 weeks if there is a classic bulls eye rash present.

Some people experience symptoms that continue more than six months after treatment. Research continues into the causes of these persistent symptoms and methods of treatment.

On page 12 of Managing Lyme Disease it says: “It has been shown that the longer a patient had been ill with LB prior to first definitive therapy, the longer the duration of treatment must be, and the need for more aggressive treatment increases.”

Personal experience tells me that in Canada, in 2016, people are still only receiving 2 capsules of Doxycycline for known tick bites, if they can even get that. More are told to go home, to “wait and see” if any symptoms develop. By the time symptoms develop it can be too late for that “early, easy cure”.  Ticks are routinely thrown away by medical professionals,  not sent for testing. The public is still being told, all over Canada, that “There’s no Lyme here.”

What the Public Health Agency of Canada is doing:

The Public Health Agency of Canada is committed to working with provincial health authorities and other partners to address the risks to Canadians posed by Lyme disease through a number of activities:

Enhanced surveillance to improve the current data of where the disease is emerging and where populations are at risk;
Collaboration with family practitioners to enhance their knowledge and capacity for prompt diagnosis and treatment; and
Development of information for public health practitioners on surveillance, prevention and control.
The Agency has also recently developed a three-year Action Plan on Lyme Disease that serves to lessen the disease’s impact through continued and enhanced stakeholder engagement, public and clinician education, and enhanced surveillance, as well as research, to improve diagnosis.

It’s nice to read that they are committed to working on addressing the risks but for those who are sick and suffering RIGHT NOW, nothing is happening fast enough. The Green Party’s Bill C442 attained Royal Assent and was made law on December 16, 2014. Nothing of note happened with that until the Conference to Develop a Federal Framework on Lyme Disease happened in Ottawa from May 15 – 17, 2016. In the meantime, people are still sick, still denied treatment in Canada and are paying out of pocket for all their medical expenses. Canadian families are losing their homes and their life savings while time passes and nothing tangible is being done. This is why the Lyme Disease Society of Canada (LDSC) has been formed. The sick and the suffering cannot made to wait for talks to happen at some point in the future… Action must be taken NOW. Some of the people who are sick and suffering are CHILDREN. It’s simply unacceptable.

Additional information

Information on Lyme disease

Media Contact
Public Health Agency of Canada
Media Relations
(613) 957-2983

Who I’d contact before the Public Health Agency of Canada:

  1. The Canadian Lyme Disease Foundation (Canlyme) 
  2. The International Lyme and Infectious Diseases Society (ILADS) 
  3. The Lyme Disease Society of Canada (LDSC) – contact: Liz Rogers, President at ldsocietycanada@gmail.com

 Links in this article:

The Public Health Agency of Canada – http://www.phac-aspc.gc.ca/phn-asp/2013/lyme-0730-eng.php
It is of interest to note that this link was active when I started this rewrite earlier this month, August 2016. Now it goes to “404 file not found” message.

The International Lyme and Infectious Diseases Society – http://www.ilads.org

The 16th revision of Dr. Burrascano’s 2008 “Managing Lyme Disease” – http://www.lymediseaseresource.com/BurrGuide2008.pdf

Lyme Ontario – http://lymeontario.com/about/about-lyme-disease-2/