We Are All Learning About Lyme Except for the Ignorant

On March 9, 2017 I was interviewed by CBC radio along with another very knowledgeable and passionate Lyme Advocate. She was well versed in a lot of the studies which made for some interesting and revealing discussion. It reiterated a lot of the details that scientists and Lyme literate doctors had expressed to the Federal Ministers of Parliament during the roundtable I was involved in, in the House of Commons in December 2016 as a patient witness.  

The next day I found out CBC had done a phone interview with the President of the Canadian Association of Microbiologists and Infectious Disease (AMMI) in response to my interview the day before. I had no idea that was happening.  At first glance it was very upsetting to to hear her denial of most everything we said.  But with more consideration, for a microbiologist,  she didn't have any explanations and seemed very unaware of all the science that had been completed in the last decade.

Now, I will never pretend to know more than a microbiologist, but this lady was just plain wrong in her statements.  I was upsetting because it basically took away any validity to what I was saying, even though she was wrong. It had the Lyme community up in arms and several scientists and doctors came forward and wrote letters to CBC, citing a host of studies stating her claims where inaccurate. Basically they told CBC “regrettably, during the interview Dr. (from AMMI) made 8 statements relating to science, of which 6 were factually incorrect.”  

I was very grateful to the Canadian Lyme Science Alliance for publishing a rebuttal article in our defense:  https://www.facebook.com/notes/canadian-lyme-science-alliance/lyme-in-the-media-fact-checking-ammi-president-dr-caroline-quach/1502680299762884/
I know if I made statements in my profession that were mostly false, I would be fired.  How is it that a medical professional, where people can become chronically ill or die based on their information, can say such flawed statements with no repercussions what so ever. 

CBC was considering following up on the story and eventually came back stating “they had shown both sides of the story and felt it necessary to leave it there”.  Well, I might no be a microbiologist, nor a journalist, but when you show one side of a story, then give the second side a chance to rebut all the issues but don’t allow the first side a chance to explain further, that is not showing both sides of the story.  In the radio interview, they would actually play things I said and then let the AMMI respond.  Where was my chance to respond?  Why wasn't I told that was happening? 

It has taken some time but I have gathered some of the data, proof, and responses to show that not only are they spreading false information and putting people in harm's way, but I deserve a chance to defend myself, that it fair journalism.  So here goes (in blue): 

CBC: We heard from Kristy Giles yesterday she says that she, and many people like her, are paying out of pocket for treatment in the US, some people are getting no treatment at all because their diagnosis isn’t even recognized in this country.  How would a new framework help people in a situation like Kristy?

AMMI: Well I think the goal of the framework was really to try and better understand what’s happening with Lyme Disease in terms of prevention, education, and research, and that’s why it had been put together um by the Public Health Agency of Canada.  And, soooo what we just had seen um on the internet recently in terms of posting for public comments was the first iteration of the summary of that conference.

You will notice she says nothing about diagnosis and treatment.  The Framework was lobbied to improve diagnosis and treatment and ended up having absolutely no reference to improving early treatment or helping those already infected.  

AMMI: In fact what happens is that um currently there is no scientific evidence in the medical literature that Lyme Disease can become chronic.  So, whether it is from the American er um er Infectious Diseases Society of America (ISDA) um or the erm Canadian Association of various physicians and including AMMI Canada.

Actually, there are 700+ peer reviewed scientific studies suggesting it can become chronic among other Lyme related information. If you haven't done a literature search, you should not state that there are no studies. 

Too bad you weren't aware that a formal medical definition for Chronic Lyme Disease was being written and was published in a medical journal two months after you made this statement.  http://www.prweb.com/releases/2017/05/prweb14305710.htm

AMMI: What we know is that Lyme Disease is transmitted by a tick bite – that it has, you know it can show up as an acute illness or a later um disseminated stage, but once treated with antimicrobials for um a maximum of 4-6 weeks, sometimes with a repeater treatment, there’s no evidence that it actually becomes chronic. 

There are too many studies to mention here on the persistence of Lyme. I will direct you to two of the most recent at this link: http://outbreaknewstoday.com/lyme-disease-borrelia-burgdorferi-survive-28-day-course-antibiotics-months-infection-according-study-47121/

There are numerous studies completed by many different researchers, that used a variety of methods, in vitro, in vivo, in mice, monkeys and humans, all showing that persistence of Lyme following infection and treatment.  You may disagree with some but to say there is no evidence is a complete lie.

AMMI: Now, what’s very complicated is that some patients who have had a diagnosis of Lyme Disease um will report symptoms that will become chronic. So, fatigue, um pain, joint pain, muscle pain, that will, that have been diagnosed in the US by an alternative lab and by clinicians without any lab tests, as chronic Lyme.  But that actual form of chronic lyme or Post Treatment Lyme Syndrome is not recognized currently by the medical community.

Clearly, she is unaware that the vast majority of Canadians do not receive any treatment what so ever, so it is a misdiagnosis and mistreatment of Lyme that is also the problem (as in my case). The International Lyme and Associated Disease Society (ILADS) refers to this as late, undiagnosed Lyme.  

ILADS President, Samuel Shor recently presented to the Tick-borne Disease Working Group in Washington D.C. on a study by Stricker, Hodzic, and Embers, where short-term antibiotics failed up to 71% of patients with chronic and late-stage manifestations.

CBC: How are those labs making a diagnosis without testing?

AMMI: So, right, so – there’s a lab in the US erm that has an alternative test that is not recognized by um the medical community and for which we have no evidence in the literature that it actually detects Lyme.  

“Alternative Lab” is definitely not a scientific term, so what lab she is speaking of is not clear.  Most likely she is referring to private Lyme disease testing which includes serological diagnostics based on ELISA and Immunoblot (Western blot) testing. These methodologies are well established and routinely used in Borrelia testing, as well as for the testing of many other diseases. Exactly the same as used in Canada.  

Its funny because for decades the CDC has been saying the blood testing is accurate, yet this year they finally came out stating that you may need several blood tests to detect Lyme.  
But no formal press release to the medical community and I can't find a reference on their website.  Seems to be highly valuable information that should get out there.  What about the hundreds of thousands of doctors and patients that relied on that one test and are now infected?  That was me!  

AMMI: And so, that laboratory when you pay for your test to be sent there will diagnose you with Lyme, whereas it wouldn’t be picked up in and not diagnosed because it's not Lyme in all our laboratory in Canada and in the US.  

No laboratories provide a diagnosis. The test is sent to the doctor, who makes the diagnosis. Payment is simply for the test, not the result. The payment is not altered by the test result and to suggest that people purchase specific test outcomes is a rather malicious suggestion.  

If we are to assume she means the western blot from IGeneX, which many have been known to send to for testing, she should know they are an internationally famous, tick-only lab, with seven laboratory certifications.  I am also assuming she uses the term “alternative” to take away from their credibility. What scientist explains her issues with lab by calling simply it “alternative?
There are so many studies showing the inaccuracies of the testing, but let usnot forget our Provincial Health Minister, our Federal Framework on Lyme Disease, the Centre for Disease Control among a host of medical professionals all now agree with the great level of inaccuracy in our testing.  Isn't it time to stop making erroneous claims about another testing when yours sucks.  

AMMI: What happens though is that some physicians in the US who call themselves Lyme Literate will diagnose patients based on their symptoms saying that they have Post Lyme Syndrome.  The problem is those symptoms are really not specific which means that a ton, you know, a lot of various illnesses can present that way and that’s why there’s confusion there.  And that’s why also when patients are being put on long-term antimicrobials – antibiotics – oftentimes intravenous, erm, there’s no support for that and there’s no way to get that treatment in Canada.

First of all: “Lyme literate” is a general term sufferers use for doctors who were treating Lyme patients and who with the help of current research and clinical experience were developing treatment plans.  Every Lyme Literate doctor and hopefully most doctors know that more research and clinical information is necessary but that is no excuse not to try to help people.
Secondly: the only guidance Canadian doctors are given is no treatment at all.  Would it not be conducive to at least follow what the solutions are in the US because it is curing thousands, including me.  Instead, you just ignore it, do nothing and try to criticize what the “Lyme literate” doctors are doing daily to save lives. 
Thirdly: Post Treatment Lyme Disease is a more common American term because they sometimes get treated for Lyme or a tick bite but it is not adequate enough and the infection presents again.  But what she doesn't acknowledge here is that many Canadians never get treatment at all, like me even though they present symptoms.   So what do you call or blame it on when they get sick after a tick bite, don't get treatment and just get sicker.  
CBC: It seems to me that there is still a disconnect between what patients are experiencing and what the health policy is.  How do we close that gap?

AMMI: I think we need to have better research and I think we would all agree on that.  

So in the meantime, you just neglect patients, ignore doctors who are successfully treating Lyme patients and do not review more recent science than what is in the guidelines from 2006 that you support? Well, that sounds proactive and professional.  

You keep saying there is no evidence of all of these issues but then state more research is needed. If research is lacking then I would suggest it is more than a little negligent to keep stating there is no evidence of these things.  The absence of evidence is not evidence of absence.  I think I learned that in Grade 4 science. 

AMMI: Um what we need is the understand and also um try and find, you know, why these patients are having these symptoms, because they are suffering, I mean we’re not saying that these patients have nothing – on the contrary, if people go to the extent to go to the US and try to find treatment that costs them their retirement savings, it’s because they have something.  Now the question is how do we figure out what is wrong?  

Why not ask the doctors or the patients that go to the US to find help? People are getting help and finding answers, why not start there.  

Of an additional note that AMMI may not be aware of or they would better understand the multitude of symptoms is the fact that rarely is Lyme an infection on its own.  Ticks and other vectors carry many infections and many patients are being diagnosed with more than one infections but many different combinations referred to as co-infections. 

There are far too many studies that suggest reasons for the multitude of symptoms that come along with Lyme.  Not only is it an infection, causing chronic inflammation but it breaks down the immune system leaving someone vulnerable to a host of other issues.  And even more complex is the exact nature of Lyme, which suggests it is more of a multi-system, neurological, post sepsis, OspA driven, immunosuppressive B-cell AIDS.  Some professionals suggest it is the complexity of the illness and the multitude of symptoms that can reveal it is Lyme. 

AMMI: And, um, you’re right, there’s currently a big gap between um patients suffering from um symptoms that are associated with um, that they think are associated with um chronic Lyme, and what is currently being um, accepted as er medically, um scientifically relevant in the literature.  And aside from doing research, and from really, you know, studying patients, making them enter trials, um having Fentanyl clinics????? where these patients could be treated and tested, um I don’t think that there’s a way to, sorry, actually um be able to to to know what’s happening.  

What on earth is the reference to Fentanyl clinics for and the reference to studying patients and having them enter clinical trials? 

If you don't believe we could have Lyme I suggest you read this one recently published study.  If it's all you do to consider the literature that you don't believe exists - read this one study that clearly states after 28 days of antibiotic treatment, Lyme disease was still present in patients.  http://ajp.amjpathol.org/article/S0002-9440(17)30894-5/fulltext

Or maybe this one: http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0189071.  Let me summarize it for you “we observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by the maintenance of specific antibody production by the host.” 

CBC: On yesterday’s show we…heard that it may be possible to transmit the disease in ways not previously considered or talked about very much at least, namely that the disease may be transferred in the womb or through sexual contact or through mosquitoes.  What is your feeling about that?  Can Lyme Disease be transmitted in the womb, for example?

AMMI: Well then again, there’s no evidence that that is actually um happening. And in fact even in animal models, in mice that were infected with Lyme disease did not transmit it to their offspring.  So there are no animal models to support it and hasn’t been any evidence in the, in humans that that has happened, at least not reported in the literature.  I think that as for everything um we have peer review journals that review articles of from scientists and so as long as that data is not available to the medical literature to us at least there’s no proof that it actually happens, so neither from breast milk or from um through sexual um contact or through mosquito bites.  

I could list many of the articles here but an easier way to do that is to listen to this presentation by Sue Faber an RN who has done countless literature searches on this topic.  https://www.youtube.com/watch?v=SLFRYVcGeR4&feature=youtu.be

The simple fact is there are enough studies to suggest that many other modes of transmission are possible.  Obviously these should be studied further to seek better answers, but to suggest they are simply not possible is completely false and very misleading. 

AMMI: Currently it’s really being transmitted through um Lyme er tick bites; that needs to be attached to the human for at least 36 hours, and so again going back to the prevention piece, you know, the first thing to prevent transmission is we need to make sure that when you are walking into a wooded areas where Lyme um is er transmitted through ticks, to make sure that there are no ticks attached to anyone for more than a day.

Not true - there are several studies that show transmission in less than a day. Some infections spread by ticks can be within an hour.  This misinformation is causing people to assume they are okay and not be treated.  This information is causing thousands to become unnecessarily infected every season. 

CANADIAN GOV’T follows AMMI & AMMI follows IDSA - what a tangled web we weave…

In response to a request from the Federal Health Committee that the inconsistencies in guidelines (i.e IDSA vs. ILADS) be cleared up for patients and doctors, the Federal Minister of Health made it very clear where she sat on the issue by stating “the Canadian Association for Clinical Microbiology and Infectious Disease (AMMI) supports the IDSA guidelines.” 

What she isn't being told or I am sure she would not so confidently state such a fact, is that in February of 2016, the National Guidelines Clearinghouse (NGC, a national database of clinical treatment guidelines) removed the 2006 IDSA guidelines from its database, for failing to comply with federal requirements by not updating its guidelines against the most current science.  The only approved guidelines that exist on the national database are the ILADS guidelines which Canada refuses to follow. 

In reference to the same guidelines that our Health Minister established that we follow, in November 2017, twenty-eight patients across twelve states filed a federal antitrust lawsuit against the Infectious Diseases Society of America, eight health insurance companies, and seven medical doctors, because of the IDSA “bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics.

Before that, in 2006, the attorney general at the time, Richard Blumenthal, had filed an antitrust lawsuit against IDSA to determine whether conflicts of interests may have affected the development of IDSAs Lyme disease guidelines. It was the first time antitrust allegations were levied against the developmental process of a medical society’s guidelines.  IDSA, following a settlement with the Connecticut Attorney Generals Office in 2008, agreed to conduct a new review of its guidelines. However, in 2010, IDSA said its review panel found no need to change or update its 2006 Lyme disease guidelines.

I really cannot understand a system that would not look to all science and more recent science as well as all expert information, guidelines and case studies. To insist what was been believed almost two decades ago without any changes, updates or new science is still valid, is completely impossible.  Especially so, when you are talking about a very rapidly, emerging epidemic, there must be more and something new to be done.  

Patients everywhere are screaming that there are potential solutions or at least assistance, but geography, finances, and policy stop them from getting to it.  How is it possible that the top experts in the field can just throw their hands up and say, we don't know what they have, we don't know what can be done but everything anyone else says is wrong. And whats worse is those in areas of responsibility, top levels of government or positions of influence, believe them, repeat what they say without verification and turn a blind eye to the destruction and suffering happening in every inch of our country.  I just don't know how it's possible that this can be happening. 

I think at the end of the day CBC’s questions were never actually answered as are ours in the Lyme world, by these “specialists” in the field.  I think Lori Dennis may have answered the question better with what she writes in her book, Lyme Madness: Chronic Lyme Disease is medically ignored and universally negated, forcing sufferers - for the most part, save for a few heroic doctors - to diagnose, research, treat, and heal themselves.  It’s a do-it-yourself disease.” I think AMMI’s responses in this interview prove Lori Dennis right, without a doubt.  

There is Humanity in Lyme...Just Not Everywhere

There is humanity in Lyme -  like nothing you could ever imagine.  For many that have lived through the hell of this illness this will be very hard to believe.

Rest assured my Lyme Friends, I am not talking about the Doctors that dismissed you, told you it was stress, sent you to psychiatrists, or made you feel like a hypochondriac.  I am not talking about the things you had to do to get treatment, acquire the meds or find the funds to save yourself.  I am most definitely not talking about the insurance companies that denied you, made you fight with the last bits of energy you had to get better, or stole your last remaining funds on legal fees to get what was owed to you.  And of course I am not talking about the way people made you feel like you weren't sick or you should be better by now, or should be doing this treatment and not that.I am simply not talking about the fact that you have worked harder than most and fought with everything you have to get your life back, to be treated as if you have done anything but.  There is certainly no humanity on any of that. Please know I am not talking about the lack of humanity in most of this illness.

As you may know, the lack of human rights in Lyme was formally presented to the World Health Organization by an Ad-Hoc Committee for Health Equity in a report titled UPDATING ICD11 Borreliosis Diagnostic Codes in March 2017.  The following was stated in a supplement to the report: 
"There is substantial peer reviewed scientific research that suggests it’s a serious 
and sometimes grave mistake to deny medical care to patients with chronic Lyme 
disease.  If that research is correct, then adopting a policy that denies medical 
care consigns thousands and perhaps millions of medically ill patients to years 
of untreated suffering and bodily harm that might well have been avoided."     

Despite all of this I still claim there is a level of humanity with this illness that is far superior to most anything I have experienced in my life.  That profound example of humanity, humility, love and kindness comes from the Lyme Community in their treatment, care and help for one another.

Some patients are bed ridden, have chronic intense pain, extreme consistent fatigue and well, a host of other medical issues, far too many to mention here.  They struggle every day to exist and for some its a mental battle to keep trying to get better.  Others are financially burdened so they no longer can afford the treatment that gave them hope. Others lack emergency help or medical care because no one will try to learn about their illness.  But what is amazing is that in this community of Lyme Warriors are people who struggle every day to exist yet will sacrifice their own selves to help another who is struggling just a little more that day.

I have seen people from different provinces work to get someone a ride to a doctor because they are unable that day.  Many have stayed up late at night to talk someone through a rough time. They help with finding the right doctor, explaining symptoms, sharing solutions or alleviating a burden.  Many times I am convinced these people have saved others lives.

Beyond all of these amazing acts of kindness is just the simple character in which all of the help and suggestions are presented.  It is always supportive.  These people have no time or energy for negative comments.  There is never judgment; only empathy, sympathy and understanding.  When so much on the internet turns to horribly negative and sometimes evil comments, these people talk online with only kindness and caring, always.  There is an acknowledgment that we are all different, our challenges vary, the solutions are not all the same, but if we just support and help each other, we just might find our way.  True humanity.

My recovery and treatments have gone relatively well, compared to some.  I have been blessed, yet there are some days I am just not sure I can keep up this endurance test.  Knowing I have a community of people I have never met that understand me more than anyone else ever could, that will only help and support me, never judge and condemn me is an intensely powerful feeling.  I can only imagine what our world would be like if it was like this in every other aspect. We could heal, save and create peace like nothing else ever could.  It amazes to me to think what would be possible.

Early in the process, I prayed to God to give me the tools I needed to make it through.  Although my family couldn't know exactly what I was experiencing, they were given acceptance and sacrifice.  I was then reminded of the community of amazing friends I have that never forget about me and even sacrifice themselves to help me get treatment.  And then I was introduced to this community of Lyme Saviours; the final piece to know that I will not only survive this battle, I will thrive.

As strange as it is to hear myself say this, I have to admit, if I could turn back time, I don't know how much of it I would change.  To have experienced the love, kindness and absolutely perfect example of humanity is probably the most powerful life experience one could have.

These people, these Lyme Angels, this experience will forever change who I am, it has filled holes in my heart that I never thought possible and will forever motivate me to give as they have given.

My Open Letter to Doctors, Nurses and all Health Agencies about Lyme

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  But I was trained annually on prevention, I have a masters in environmental health, I know I was bitten, I know it was engorged, I had a rash, I got sick and yet four years later I have had to use up most of savings for treatment in the US, give up my management position and legally fight for insurance, while trying to regain as much health as possible.

I help people weekly, to try to get appropriate treatment for a bite or symptoms, to save them, so they can learn from what I have learned.  Yet, I fail, even when I send them with all the supporting documentation and studies and guide them as best I know how. https://www.linkedin.com/pulse/human-rights-violations-relapsing-fever-lyme-disease-luche-thayer

So, I have decided to write this letter, so those who care, can read it.  I beg of you,  as a member of the medical profession to just read and consider the following information.  I will reference sources for all of my points and within those sources you will find hundreds of studies to support it.  They say doctors don't have time to read all the latest science and that I can understand.  But you should know there are over 700 peer reviewed scientific papers that are showing more up to date information on Lyme and you are not being told.

Please, just please just consider what if all of this is true? What if a few minor factors in the details determine whether someone you care for ends up with a lifelong chronic illness or if they can walk away and never think about Lyme again?  What if you had the power to make sure those people never had to worry about Lyme or a lifelong illness?  Well, you do have that power doctors, nurses, and public health educators.  You most definitely do.

I write this letter pleading with all of those in health to seriously consider the items I share with you here - to save many from my demise. The solutions are so simple its ridiculous, yet from what I see the fear of Chronic Lyme is going to become a reality for hundreds of thousands more if we don't fix a few small things.

The 24 Hour Rule: If there is anything we do know about nature it is that rules don't apply.  We cannot control nature, it is not exact and we cannot assume it works the exact same way every time.  This "rule" is leaving people without treatment, giving them a false sense of security and are becoming infected every day. 

This rule was established because the tick typically attaches and feeds on a human until full. Once full it can regurgitate the blood with the lyme infection back into the human.  It takes 24 hours or more for this to occur so the rule was established for this reason.

Here is why this rule should not be followed:
1) It assumes that the tick was never attached to another host or partially fed somewhere else.  Studies have shown that ticks have partially fed, detached and attached to a new host. This greatly reduces the time before regurgitation.

2) Ticks transmit more than just Lyme and some infections that are even more debilitating that Lyme.  Studies have shown that some of these infections are transmitted in minutes.  Powassan Virus which can be deadly was proven in a study to be transmitted within 15 minutes.  I can't imagine there are too many ticks that are removed within that window, especially since the tick injects an anesthetic so you don't feel the bite. 

David H. Persing, MD, PhD, chief medical and technology officer for Cepheid, a California biotech firm and a world expert in molecular diagnostics.  "I don't think we know half of the agents that are potentially transmissible by ticks"

3) Lyme has been proven in animal studies to be transmitted within 6 hours.  So it is only safe to assume that is should function the same way in humans. 

4) It also assumes the tick was never stressed.  If stressed it is known that the tick will prematurely regurgitate into the human host.  This could mean pressure on the tick which is possible especially if you don't even know its there.  They like to attach in hidden areas where pressure, scratching and stress would be likely, i.e. armpits, toes, head, etc.

5) Finally it assumes that the removal was proper and flawless.  Who can know whether the tick was stressed during removal and regurgitated before full removal.  Its common for removals not to be perfect and incredibly likely that at some point while preparing for the final pull the tick was exposed to some stress and regurgitated back.

"The bad news is that improper tick removal may increase the chances of infection and disease." Dr. Jorge Parada, MD, MPH, FACP, FIDSA Medical Spokesperson for the National Pest Management Association (NPMA) and infectious disease specialist, Loyola University

6) And...This rule used to be 72 hours, then 48, then 36 and now its 24.  What happens if someone doesn't get treated because its 24 today but you finally get told to apply 6 hours next year. The science is saying so, so you will eventually be told.

Just Ask: Dr. Richard Horowitz, Dr. Laurie Radovsky, Dr. Burrascano, Dr. Nevena Zubcevik, Dr. Liz Zubek, they and many others have written about this.

The Bullseye Rash: It is becoming more known that a very small minority of people with Lyme are likely to see a bullseye rash.  But what is less known is that only 9% of that minority will show the typical bullseye rash.  But people are being told their rash is not a bullseye and therefore do not have lyme - not true.  There are a minimum of 7 types of rashes that are representative of Lyme and a rash suggests infection.  

I know of far too many Chronic Lyme patients that were once told they had a spider bite.  Please don't assume so quickly.  There are some good resources for the different types of lyme rashes:

The One-Day Prophylactic (preventive) Treatment: is based on only one study that was only successful in 4 out of 5 patients and by successful they mean the rash was prevented, not the Lyme.  

"IDSA sometimes recommends a one-time 200-mg dose of Doxycycline. The only study supporting a single dose of Doxycycline demonstrated that it could prevent rashes but did not study whether it could prevent any chronic manifestations of Lyme disease." Dr. Daniel Cameron, International Lyme and Associated Diseases Society (ILADS) 

ILADS recommends that prophylactic treatment should be implemented for at least three weeks, with follow-up after a tick bite [as Bb Lyme spirochetes have the ability to penetrate the body and cells in less than 24 hours following an embedded tick bite]. http://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900

I know of people that were prescribed the one day dose many days after the bite.  Both treatment guidelines will tell you thats pointless by then.  But, I just don't understand why a few weeks treatment of antibiotics is withheld based on one, not very successful study vs the hundreds that are showing Lyme persistence.  This is not about whether you get a rash or not, this is about whether you get a lifelong debilitating disease. Please treat the bite...properly. You have the collective ability to save thousands.

And if you do decide to prescribe the one-day dose that eliminates the rash,  please consider that you have eliminated the single, most powerful symptom to diagnose a Lyme infection, the best symptom to tell you, without a doubt, that this person needs many weeks of antibiotics.

A rash and/or flu like symptoms following a tick bite: it's lyme, treatment is needed.  There is no debate here, please treat.  

And if I could ask one more favour here: please talk to your patients about the two different guidelines that presently exist for treatment.  Canada's Federal Framework on Lyme now refers to both treatment guidelines and The Federal Health Committee has formally requested that both be referred to on the Public Health Website (but things move slowly) so I ask that you know both: ILADS & IDSA.  You are not going to find many specialists in Canada that agree with me on that.  There are very few ILADS doctors in Canada which could explain why we all have to travel to the US for help.  You should know: the ILADS Guidelines are presently the ONLY ones that comply with the National Guidelines Clearinghouse and the Institute of Medicine.

The reason I ask that you share both is because one suggests 2-3 weeks treatment and the other 4-6 weeks treatment with symptoms.  It breaks my heart when someone is given 2 weeks with symptoms when 2-4 more could eliminate the fear of Lyme for good.  The only time you can 100% cure Lyme is at the very beginning.  The further away you get from initial infection, the more persistent the bacteria gets and the more irreversible damage is done.

I understand we want to decrease the use of antibiotics.  But at what cost?  Is this the place and time to be stingy?  I can promise you no one dealing with Chronic Lyme would tell you that saving 2 weeks of antibiotics is worth the hell they now live in.  Oh and by the way, my dog was given 6 weeks treatment with symptoms.

And finally, the Minister of Health for Ontario sent a letter last year (2016) to the College of Physicians and Surgeons stating that Lyme should be primarily a clinical diagnosis and not to rely on the blood test to be positive for treatment.  

I think the fact that the blood test is inadequate is becoming well known in the medical community. You may note that just last month (June 2017) the Centre for Disease Control (CDC) finally released this fact and suggested you should treat with antibiotics upon suspicion.  So, although it is too late for me and many others (I was not treated because my blood test was negative) I hope this information may save some.  But you should note the CDC is often who we look to for this type of direction.  They came forward with this much too late and way behind Ontario's efforts.  So what other information might we be getting a little to late.

Just know, the science is there to say the bacteria is persistent, can become chronic and infection can be quite rapid.  Please don't dismiss the patient that was once bitten and treated as they could have a chronic infection. Please don't under treat a patient who is just bitten. You have the power to cure them, then and there, for good.  What an amazing influence you can have on the management of this illness.

Thank you for taking the time and for your consideration.
Yours in fighting Lyme,

A Passionate Thank You to Those Who Have Helped Me in My Battle With Lyme

On June 17, 17 friends and family came together with a most powerful event to raise funds for further treatment and advocacy of Lyme.  It is sad that in a country where medical treatment is to be covered that friends and family must come to gather to support someone who has to seek coverage outside of their country in order to survive.  But I have come to accept that is the way it is for Chronic Lyme in Canada and I couldn't be more grateful for the support I have received.  So I wanted to share excerpts of my thank you speech.  

Thank you to all of you for being here tonight, the hard work of many to put this together and the amazing entertainers who offered their Saturday night and most of all their talent. I also want to thank my friends who called in special favours to to get these amazing musicians, incredible silent auction items, volunteer help with set up, food, tickets, and the list goes on.   Some very special people in my life were adamant that this event happen. 

If I can back up a little on the thank you: I also want to thank all of those who sent private messages, text messages, emails, phone calls, Facebook comments, gifts and love over the last year - thank you.  I hope I responded, but if not just know that I read and was filled with gratitude with every single one.  I reread them on the tough days and they definitely carried me through. 

Did you know - I have the absolute best friends in the world!  All of my life my friends have been family to me.  New and old; they sure made me feel like family this last year with the things they did for me.  You wouldn’t believe what good people will give of themselves when a friend needs a hand.  The most amazing thing about them is that they are not only there for the good times…because they know how to have a good time.  But they have amazing ways of making the bad times feel like good times. 

I do need to mention a few people individually - my children and my husband.  My kids were great at never making me feel sick…especially when the dishes needed to be done or supper cooked lol.  In all seriousness they carried more weight the last year than many their age, and they did it with grace, I could not ask for more…

Although I got more, in a husband with the tolerance level of a saint.  I know what many of you are thinking, he had to have been a saint for putting up with me before…you are right, but this last year was the ultimate test.   Despite everything he managed to make me feel strong, determined and a fighter when all I felt was weak, lazy and pathetic.  With all we had to give up, he could only focus on our blessings.  How lucky am I!?

Many of you have had to put up with my Facebook warnings, quite a few of you had to listen to a very long presentation in Pakenham, many of you asked questions when you were curious. I want to thank you for all of that.  Who would have thought the one place I loved to be, the place I encouraged all of you to spend as much time as possible and many of you joined me outdoors in fitness and other activities and yet it is the one place, where a small little bug tried to ruin my life. 

 All I can say is this: I am so grateful it was me.  I had no idea that little tick could do so much damage and I had no idea our country was so willing to bury its head.  
But I also want to say this: that tick is not going to ruin my life and this country is not going to get away with this forever. 

Despite all the work and healing that still has to happen and despite Lyme’s efforts to take away everything I was, I still believe it has given me more than it has taken away.  Take a look at this room, how could I not think that.  

So I wanted to share with you some of the things I have learned that convince me Lyme has given me more:
  • I have learned about chronic illness, that it is invisible, you can look fine and be battling the biggest battle of your life inside.  I hope to have more empathy as I go forward that we all are battling things at times that others may not see or understand.  But it could never hurt to just offer a little more empathy despite what we don't understand. 
  • I have learned that sometimes motivation is not always the answer.  [I know some of my boot campers are thinking its about time - she's is finally going to lay off the motivation} I used to believe anything was possible if you just pushed yourself hard enough. What a hard lesson to realize that sometimes in life we are given something to handle that is beyond motivation, willpower and blunt determination.  And that we don't always need someone to lift us up, push us forward or keep us going.  Some days the most powerful words you can hear are “its ok” 
  • I have learned that everyday there are so many little blessings happening and because life is happening so fast we don't have the time to notice them.  And that all of your abilities, all of your passions and favourite things can be taken away and all of a sudden you will have the chance to see all that you were missing.   I know I am blessed beyond belief and each of you have played a role in that.  
  • Random acts of kindness are one of the most powerful tools we have to make the world a better place.  I wish i had the time to share with you tonight about all the incredible acts of kindness I have experienced in the last year.  Maybe i could sum it up by saying living and growing up in a small town is probably one of the greatest blessings anyone could experience.  The businesses, the organizations, people I barely know and the generosity leaves me lost for words…and we know that doesn’t happen often. Sometimes what means nothing to you to do means the whole world for someone else and rarely is anything to do with money.  
  • yes, I did say rarely…because there is a saying in the Lyme world that goes; “money doesn't create happiness, said no lyme patient ever”.  But I am a lucky one, because many have lost houses, cars, savings, marriages, jobs, and many cant fund travel to the US - all while trying to heal.  Yet, lyme patients don't refer to themselves as victims, they call themselves lyme warriors.  They have fought an illness that slowly and quietly takes away their functioning, fought a medical system that either doesn't know how to help or refuses to and a government that moves so damn slowly to resolve anything.  I thank you tonight for joining my team and becoming a lyme warrior.  
You know - A top Lyme doctor in the world said his one message to every lyme patients is “dont ever give up”.  There is no one treatment for every patient, just keep trying and there is no clear cure, but someday there will be.  So, although there have been many points in the process I have wanted to give up…Lyme is an endurance test, its long, its slow and many time it goes backwards - its a lot like life, magnified. So if anything I think its a message to all of us.  No matter how bad it seems at the time, don't give up.  Keep striving for what you love, seeing the blessings that are all around and believe, believe that things will get better, justice will prevail and that with your contribution that world will be a better place.  

Kristy’s Kitchen Party For Lyme Advocacy 
June 17, 2017
Thank you Speech 

My Open Letter to Dog Lovers About Lyme

In the middle of my first year of recovery with Chronic Lyme, after being misdiagnosed, I decided to get a puppy.  You spend so much time alone and feeling ill that many sufferers find comfort in a furry friend.  Our previous beloved pet was a Border Collie and Labrador Retriever mix.  She loved to run with me, hike, kayak, atv, many of the things I could no longer do.  But we decided a similar dog mixed with a quieter breed would be appropriate and fell love with "Aggie" a Border Collie/Great Pyrenees cross.

Having a dog was great motivation to get up and go for a walk most days, regardless of how sick I was.  She was great company and would just hang out beside me when I was too ill to do much else.  One day following a hike, I discovered an engorged black legged tick on her.  Unfortunately, it was days before her 3 month appt where she would have started the preventative tick/Lyme treatment.  I saved the tick to show my vet and she felt it was not a concern because it was not engorged (although it did seem so when it was attached).  Regardless, it was too early to test and I was sent back home with preventative meds and the tick. 

After a month I became concerned with her loose stool and called the vet, concerned it might be Lyme. The amazing thing about vets is they have the best understanding of Lyme.  The treatment animals receive by the veterinarian community is far superior to what any human receives by the medical community.  While I was serving as a lyme patient witness to the Federal Government, one MP asked the expert Doctor "are you trying to suggest that the data and treatments animals receive are better than what humans receive?" to which the medical Doctor responded, "I am not suggesting, I am telling you it is a fact."

So when the Vet told me loose stool wasn't necessarily an indicator or lyme, I let it go.  I was a little surprised as it can be a common symptom in humans, especially since fever and the flu are early symptoms of Lyme in humans.  But she was a young puppy, eating many new things and new to me, so it was hard to determine what was out of character for her.   I also knew I was probably hypersensitive because I didn't want anyone to struggle as I have with this disease.  

A few months later, I knew it was getting to be too much.  I called theVet and insisted she be tested for lyme.  A quick in clinic test and she reported "I guess your instincts were right - she is positive for lyme."  

And here becomes the very important part of this story:
The Vet then stated "typically we would not treat her with anything since she is not showing symptoms, just the presence of lyme in her system.  So I have to ask why were you so adamant she be tested for Lyme".  That is when I stated it was because she is symptomatic for Lyme.

She is showing many of the same symptoms of Lyme that were missed when I first started to get sick.  

1) She was panting and feverish more and more.  Some nights she would get me up to let her outside to just sit in the cold.  
2) She was happy to go for a long walk and play hard, but seemed to be very lethargic the following day or two
3) She drank more water than any dog I knew
4) Her shedding was increasing
5) Her eyes were bloodshot regularly
6) She appeared clumsy and would trip once in a while
7) Even though she wanted to jump up on a couch or something she seems hesitant and it looked like she had to coax herself to push off to get up
8) Loose stool that seemed like it was getting better, then return

The one thing I remember clearly with this my illness is that just as you think you are getting better, it all of a sudden returns and maybe worse.  It was a cycle, that makes you think you are better, then sick with something else.   So in a dog it is even harder to detect because the cycles make you think they are unrelated and our furry friends can't let us know how much they are suffering.  A dogs natural instinct for survival is to hide suffering as that would make them vulnerable in the wild.  So you can never expect to know how bad it really is and well, Lyme is called the invisible disease for a reason. 
Aggie after 6 weeks of antibiotics.
Symptoms are gone and she is doing well.  

The vet explained that the symptoms they are looking for are limping, stiff joints, loss of appetite, etc.  And that is right, but for me that was three years into my diagnosis.  It is chronic then - recovery is much tougher at that point.  We want to catch this disease early, so it is treatable and responds to antibiotics.  I was adamant she receive treatment.  I was confident the signs were early Lyme and I don't want what comes next in the progression of this illness for anyone, human or animal.  

I share this with you because Lyme is still a very misunderstood disease.  Humans are treated even less than animals in Canada and once its chronic cannot get treatment at all in this country.  It was hard for me to be sure I wasn't over reacting.  She also had Great Pyrenees in her and I was less familiar with that breed.  Some of the symptoms at first could have been attributed to her breeding.  But they progressed and seemed more extensive than they should be.  And I have been there, I too passed them off many symptoms for a while and look where that got me.  I was not going to have the same thing happen to new best friend.  

The other thing I know with Lyme is many of the symptoms seem minor on their own, but they start to build and add up. You need to keep a running list of what is happening.  Minor symptom after minor symptom will start to add up over time and you may have a valid concern.  Lyme symptoms were very hard for me to explain to my doctor for years.  It is close to impossible for a dog to let us know what is happening before its too late.  I wish Lyme was better understood and treated in humans in Canada because I believe this information could also help our furry friends when they can't describe what they are feeling.  

If your dog tests positive for Lyme, please don't assume they are not symptomatic.  It is a horrible, hidden disease.  Vets are not only better diagnosticians than doctors, they are also very willing to properly treat animals for the illness,  yet it is still complex and sometimes misunderstood illness. If anything just be aware.  You don't want your pet to suffer silently. 

One other note about Lyme: don't assume that because they were treated with an antibiotic that the illness is gone.  The vet told me that day she had a dog who was treated but the illness returned.  She wasn't sure whether the dog had been bitten again or not.  I explained to her the there are many scientific studies proving the persistence of the Lyme bacteria.  Treatment can attempt to kill it all but fall short.  The longer someone has the illness the harder it is to treat.  It is possible for someone to recover with antibiotic treatment but have it still return.  It just means not all of the bacteria was killed off.  So monitor for symptoms long after treatment, just in case. 
This letter is dedicated to our previous, lost, loved dog, Keesha, who we now know suffered in silence, for years, with Lyme.  I am sorry my friend that you struggled more than we knew.  If I knew better, I would have done better.  Now I know better.  You are so missed.