Thursday, October 4, 2018

Finding Purpose in our Greatest Weakness


I received a copy of my book today.  It seems surreal that It has been well over 5 years since I was bitten by a tick and two and a half since I have been treating it.  It seems even more surreal that somewhere in that recovery I wrote about my story, I feel like I can't really recall how or when that happened.

As much as I wanted the book to share the misunderstanding and misinformation about Lyme so that others could protect themselves...It is much more about the lessons I learned about myself and life that are often right in front of us.  We rarely can see them through the crazy, hectic experiences of daily life.  If there is a blessing in all of the loss you experience with Lyme; physical and mental abilities, job, money, often housing and friends and family, it is the ability to see yourself and what life is about much clearer than you ever possibly could before.  I wanted to share those revelations and moments of clarity so that maybe they will help others live a better life too.

But, when the book arrived and I opened it up it became clear, the fact that this book was written at all, was a much greater lesson than anything in the book.  The reason being, I am probably one of the last people who should write a book. I almost failed grade 9 &10 English. I was told I just couldn't write, it wasn't in me and they had tried to help but didn't know how.  I was just not going to be good at writing and I had to accept that.

Thankfully, it didn't end there because of an English teacher who not only restored my faith in me, he taught me a very valuable lesson about life.  He explained that I seemed to have given up before I had tried.  But the truth is I simply believed what everyone was saying about me.  He taught me some fundamentals about essay writing in a way that finally made sense to me.  He gave me tips on how to organize my thoughts, provide more detail, explanation, and context to what I was trying to explain.  But more than all of that he gave me the ability to believe in myself. It would take extra effort and work to write what might come much more naturally to someone else, but I could still do it.  I would never become an English major that was for sure, but I still had something to share and there was value in it.

I am so grateful for that experience in my life because the fact that it was harder for me, helped me to gain the tools that would help me record my story when I was very, very sick.   And the fact that I believed my story was worth something, made sure that I didn't lock it up inside.  It helped me heal, I hope it helps other thrive and most of all I hope it teaches people to believe in themselves, even when everyone else may suggest otherwise.

It also made me realize that maybe our purpose is found in our struggles. Maybe the experiences that seem to tear us down, show our weaknesses or strive to make us feel worthless are the very places we should look to find our purpose.  Maybe, just maybe when we have the hardest time and feel the worst is exactly what we are meant to overcome and share.  Maybe our greatest strength is not what we do best but what has been the hardest and we persevered.  Maybe that's what we each have to offer the world...our very worst.  Because if we overcome that we find our very best. And what if our ability to share our worst shows someone else that it is okay to acknowledge theirs, find help, seek out solutions and overcome.  We don't need to be defined by our weaknesses, we just need to not be afraid of them. With help and effort, they can become the best gift we have to offer the world.

My book, Two Week Window; Living with Lyme and Thriving in Life, is certainly not a literary masterpiece.  But it is real, its true and I do believe my purpose in writing it was to help others, hopefully many.  I also believe we all have a story to tell and should tell it, there is much healing to be gained by delving into your darkest moments and much you can offer the world by sharing.  But most of all, I am grateful for the experience of a teacher that taught me to believe in myself, even when all the evidence suggests otherwise.  This book is available simply because of that. So Mr. Smith (aka Smitty) - thank you!

I hope when you read this book it inspires you to believe in yourself. The fact that it exists is proof that ANYTHING is possible!

https://www.balboapress.com/Bookstore/BookDetail.aspx?BookId=SKU-001191830




Thursday, May 10, 2018

VOCAL - Voices of Canadians About Lyme Speech May 5, 2018 at Ottawa City Hall

I don't need to tell you my story - the fact that you are here (VOCAL) suggests you have either lived it or heard it…Atleast one very similar. 

I was a recreational athlete and a park manager, who loved being active and in the outdoors.  Who, through years of misdiagnosis went from running an Ironman to barely being able to walk and fulfill her job duties.  

Sure it varies slightly from one of us to another, but every story includes some version of 
  • losing most of your money to treatment 
  • having to change or give up your job, 
  • losing a home, marriage or friends
  • losing who you were, social interests and many abilities 
  • and spending years of hell trying to get better
  • And thats if you're one of the lucky ones
You don't need to hear my story its yours or a friends or a relatives.  Its becoming too familiar to way too many.  

Very little is changing what is obviously a glaring epidemic and no one but those who know the torture of Lyme are doing anything about it. 

As you may know, I walked here today. I walked here with many of my tribe, who have endlessly supported me and carried me through the hell called Lyme.  

As you may know, today I started my plan to walk the Ontario portion of the TransCanada Trail.  

I don't know how often I can walk, how far, how fast, I may have to bike or rest, I just cant know.  Lyme will decide every day what I can and cant do.  

But I do know this, I have fought too hard to get to this point to not do what i can to help others.  I don't plan to stop walking until something changes for acknowledgment, treatment and diagnosis of Lyme.  Where that will take me no one knows. 

People say to me why walk? 

I walk because I once had a very hard time doing so and doctors told me I was fine.  
I walk because I promised that if i was ever able to again, I would do something about this medical travesty. 
I walk because the burden of finally understanding where the problem is and not being able to do something about it is literally too much for one person to bare.  


I walk because I cant take one more call from a friend about a child that didn't not get treated after a tick bite.  
Because I cant take one more email from someone who thinks they might have Lyme but no medical professional will believe them. 
I cant take another message from someone who was told they are fine 
- it wasn't attached for 24 hours 
- they weren't in a high risk area 
- or we don't have lyme here

I walk because doctors smirked at me, they told me I was perfectly healthy, maybe stressed, possibly overtraining or needed to wait for things to get worse.  
I walk because I should not have to have used all my retirement savings to get better when I told them something was wrong for years.  

I walk because I see it happening everyday, I see the doctors ignoring it and I see the patients crying for help.  

Because the only thing I can tell someone with Lyme is
  • prepare to get sicker than you have ever been, 
  • prepare to use up all your resources, 
  • exhaust the support of those around you 
  • and challenge everything you knew about yourself. 
Dr. Sam Donta said it best“if you ever want to torture someone, give them Lyme.

I walk because top medial organizations can use decades old science and very few studies to rebut new science and criminalize the doctors who try to help.

I walk because Canada should no longer be able to promote a treatment protocol based on one very bad study… that was not very successful… but determines whether someone suffers needlessly for the remainder of their days.  

A treatment protocol that is no longer approved by the Institute of Medicine.  
But we still follow it? 

I walk because many politicians asked me to share my story, swore that no patient should ever have to travel to the US again… but then did nothing to change it.

How is it that we all know there is a problem in this country but we continue to do the same thing, the same way - and expect a different outcome - is that not the definition of insanity?

I shouldn't have to explain why I walk when: 
  • Kids are in wheelchairs 
  • adults are dying lyme carditis 
  • most are suffering with crippling pain 
  • and families are losing their homes
AND all it would have taken was an appropriate dose of antibiotics after the bite or treatment when ill 

But I also walk because those suffering are also sharing the studies, challenging the scientific organizations and helping others get treatment.  
Because everyday a Lyme warrior is meeting with an MP and MPP 
They are protesting, raising money, lobbying, educating and fighting and they shouldn't have to.  There is no reason for it - there is treatment - if caught early on. 

I walk because even after diagnosis, treatment and much improvement the doctor that misdiagnosed me doesn't care to know how, why or anything about Lyme.  

I walk because Public Health educates about Lyme with very black and white statements - that are not always true
Because they say - there is no need to worry 
Because they even have the gall to say Lyme patients are fear mongering
I say to public health - walk a day in my shoes and then you will know what to say

So I walk. 

And I make this vow to my friends, those fearless warriors battling this disease. 
I make this vow to all the Lyme advocates who are relentlessly fighting to create change
and I make this promise to present and future generations who are at risk…

I will walk, bike, take a break if I have to and rest when I need to and then walk again until something changes…
I will walk for you, for me and for everyone 
because no one needs to live as Lyme patients have to…there is no need
The only need is change.  

I will walk for life if I have to because it is better than the torment of seeing, knowing and experiencing the misinformation, the misdiagnosis and the mistreatment. 

I will be quite honest with you, I don't know if my body can do this. I hate Lyme for that.   But I got to this point with unconditional support from my tribe, blind will and determination and a lot of help with from God. So with all of that backing me how can I not keep going.  

So for the next little while, you know where to find me: 
On the TransCanada Trail in Ontario,  praying for change.  

Until then….I walk. 

Sunday, April 15, 2018

TransCanada Trek for Lyme Disease

Date: May 5, 2018
Time: 2pm
Start: Behind Canadian War Museum 
Trail: TransCanada Trail/Ottawa River Pathway/Rideau Trail
End: 3pm Ottawa City Hall - VOCAL Ottawa 2018, A Lyme Disease Awareness Event 

On Saturday, May 5th Kristy Wood-Giles will be kicking off her Ontario portion of the TransCanada Trek for Lyme and you are invited to join her for a 3km portion. Five years ago Wood-Giles was on a hike where she was exposed to several ticks, one in particular who badly infected her with Lyme and other co-infections. She now spends much of her time educating others so they can learn from her mistakes. “There is a lot of misinformation and misunderstanding out there about Lyme and ticks and I feel it is my responsibility to do my best to protect others from my demise.” Explains Wood-Giles.  Wood-Giles has decided to start a TransCanada Trek to bring better awareness of the issues with ticks and Lyme.  

“My health has to be my primary concern and when dealing with Lyme you don't know from day to day how you are doing or when you may suffer or fatigue.  On the days that I feel well, I will do my best to walk and share information with others.  On the days that my body needs to rest and heal, I will suspend my walk temporarily, bike or limit my walking until I am better. That’s how life is with Lyme, but I can’t let it hold me back from sharing the truth until things change in this Country.” 
Everyone is at risk of ticks and Lyme Disease and the co-infections they carry.  In 2017 alone, the city of Ottawa was declared an endemic area, the percentage of ticks carrying Lyme Disease doubled as well as the human cases of Lyme Disease (and that does not include those traveling out-of-country for treatment). For the first time ever, the City of Ottawa has proclaimed May 2018 as “Lyme Disease Awareness Month” and the Mayor will be making that announcement at VOCAL Ottawa 2018.
“The fact of the matter is, even with all the awareness that is out there the real information that people need to understand to protect themselves is not being shared, nor understood. There are so many people out there doing good work trying to change things, but change takes time. I can’t just sit back and watch what happened to me keep happening to others. So, I will keep walking…” explains Wood-Giles
Contact:
Kristy Giles
kristygiles@storm.ca
613-852-7496
For TransCanada Trek Walking Schedule Check out: 

VOCAL Ottawa 2018
Lesley Fleming
vocalottawa@gmail.com
613-795-2632

Saturday, March 17, 2018

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.  

Wednesday, August 16, 2017

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.

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Finding Purpose in our Greatest Weakness

I received a copy of my book today.  It seems surreal that It has been well over 5 years since I was bitten by a tick and two and a half sin...