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. 





Acute Lyme Treatment - What You Must Consider

Image result for motivating others to learn from my mistakesI have spent my last year of recovery desperately trying to figure out what I did wrong and how I fell through the cracks, not receiving appropriate treatment for lyme and missing diagnosis.  It took a while to fully accept that I did not fall through the cracks. This is how treatment is missed and ignored in the Lyme world, over and over again. My story is identical to thousands of others.

Author Lori Dennis, Lyme Madness explains more:
https://www.linkedin.com/pulse/doctors-listen-up-lori-dennis-ma-rp?published=t

I think the most important part of Lyme is that each patient should have all the information so that they can seek the help of a medical professional and make appropriate decisions knowing they have considered all the facts. Lyme is curable in its early stages, so it should be something that is ruled out first, not diagnosed by process of elimination.

Things to consider:

OUTDATED GUIDELINES
Canadian's are following Infectious Disease of America (ISDA) guidelines which have been noted to be outdated.  They are based on old science.  And since then there are hundreds and hundreds of studies that support a different protocol, that has yet to be considered.
https://www.lymedisease.org/idsa-guidelines-removed-ngc/

OTHER APPROVED GUIDELINES
The International Lyme and Infectious Disease Society (ILADS) have approved guidelines that include science and specialists from all over the world.
http://www.ilads.org/ilads_news/2015/ilads-treatment-guidelines-are-now-summarized-on-the-national-guideline-clearinghouse-website/
They hold regular conferences, share recent scientific findings and collaborate on treatment protocols and success.  The guidelines clearly explain where the old guidelines fall short.
https://www.lymedisease.org/lyme-basics/lyme-disease/treatment/
They typically support a slightly longer course of antibiotics to solve this illness (in its acute form).  Pretty simple solution if you ask me.  Scroll down to Executive Summary: http://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900

THE ONE DAY DOSE DILEMMA
Many people do not receive treatment after a bite, but if they do it is often two doses for one day of doxycycline.  It should be known that this is based on one study that is over 10 years old and only shows treatment of the lyme rash, does not prove to kill the Lyme bacteria.  Oh and it only cured the rash in 80% of a very small test sample.  I enquired about this further with a Chief Medical Officer and was told, it is really considered a prevention (assuming Lyme has not yet entered the body), not a treatment.  Many people believe they are being treated.
https://www.lymedisease.org/single-dose-doxy-tick-bite-prevents-rash-not-lyme-disease/

Another thing you have to make note of when accepting the one-day dose is that it will likely mask or delay many of the Acute Lyme symptoms that would warrant treatment.  It is meant to alleviate the rash and that is the one symptom that will encourage doctors to treat Acute Lyme.
http://vermontlyme.com/2017/04/24/problem-single-dose-doxycycline-tick-bites/

EARLY LYME IS ALMOST IMPOSSIBLE TO DIAGNOSE
I lived it myself and I hear it all the time.  The early symptoms, typically after 30 days, are incredibly easy to pass off, make excuses for or consider part of aging.  They are so subtle they are often mistaken for a stressful period, being overtired or the feeling that you are fighting something.  It never amounts to enough for anyone to get concerned.  My best suggestion is if you know you had a tick bite, you should demand treatment with the tiniest, most subtle change in your health.  It is likely related and with a course of antibiotics early on, it is very easily cured.  Don't waste time and wonder, because it can become too late.  Note: More than half of Lyme patients, don't even know they were bitten (that's a whole separate conversation).
https://www.canada.ca/en/public-health/services/diseases/lyme-disease/health-professionals-lyme-disease.html
See guidelines for appropriate treatment:
http://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900


DO NOT WAIT FOR TESTING
Not only has the testing proven to be too inaccurate to provide a diagnosis, it is not recommended for 4 weeks after the bite (it tests for antibodies that take time to develop). At that point early treatment would have already resolved he issue.  The Ontario Minister of Health sent a letter to Doctors last year starting that testing is to only support a clinical diagnosis.  You must rely on symptoms and risk to determine treatment.
http://ocfp.on.ca/docs/default-source/default-document-library/minister-letter-to-docs-re-lyme-2016-07-29_english.pdf?sfvrsn=0

24-36 HOUR RULE
See my previous blog on Prevention to learn why you do not want to rely on the 24-36 hour rule to wait for treatment. This is a protocol many doctors and hospitals insist on that; the tick was attached for that time before treating.  Science is showing that is not reliable and you should not assume you have not been infected in less time.  http://outofthewoodz.blogspot.ca/2017/04/lyme-prevention-what-you-want-to-know.html

RULE OUT LYME FIRST
Lyme is an illness that should be considered first.  It is very easily treated early on with a very common dose of antibiotics.  Patients often seek treatment after they have gone years ruling to everything else.  That is when it is too late and at that point doctors cannot legally prescribe in Canada, the dosages that are required for remission.  This is one disease you must be your best advocate for. If you do then you will not have the same regret I do, when I let doctors belittle me and convince me I was crazy when I questioned Lyme.
http://www.prnewswire.com/news-releases/delayed-diagnosis-of-lyme-disease-has-devastating-effect-on-patients-300091001.html

I hear it time and time again...patients are told they are self diagnosing, reading into their symptoms or don't understand Lyme.  Learn from me and millions more who ignored their gut instincts and let the professionals convince them differently.  They were wrong. Unfortunately, with this illness, when it gets bad enough to prove you were right and they were wrong, its too late.  Just remember, if the professionals are wrong, there are no long term consequences to them.  The only one who suffers for the rest of their life, is you.  If I could do it all over again, I would never give them that much power.  Trust you, trust that you deserve better for you and your health, trust that you deserve respect. That's my basic desire for those suffering with this illness (now and in the future) - the respect they deserve.

Lyme Prevention - What you want to know


There is so much wrong and misunderstood about Lyme, especially when it comes to chronic lyme. And while many are lobbying for things to change, as they have for decades, the professionals insist that prevention is the key.  I always agree prevention should be a mighty tool and yet there is no comfort in this because the prevention information we are receiving is not only wrong, many pieces are missing.  So I am writing this blog to share beyond the traditional prevention tips that are out there.

Removal is key


Regardless of time attached, proper removal can be mean infection or no infection.  So I strongly encourage people to learn proper removal.  Many tools have been developed to eliminate the human factor.  They are supposed to protect us from making human error when removing a tick, but they dont always work in every situation too.  Many suggest that tweezers allow for human error, but I disagree.  I believe regardless of what you use you must understand the key principles to removal:

1) You must not stress, push, pull, twist, drop oil on the tick.  That will only cause it to get upset and possibly regurgitate the bacteria in to you.
2) it is more important to take you time to remove it properly that to rapidly rip it off however you can. 
3) You must get as low as you can to the attachment site to make sure to remove the whole tick, including the head.
4) If using tweezers apply consistently pressure and pull directly up. 
5) Clean the area with an antiseptic such as alcohol https://youtu.be/AmM5NmQMHVo


Aside from removal there are a few things we can do to prevent ever having to remove a tick.  I share these with you as they come from one of the most renowned Lyme literate doctors in the world.  And these are his recommendation for prevention that are not shared in Canada.

Permethrin

There is actually a product that is not only a deterrent, it will kill the tick on contact. It is not meant for use on your skin, but is highly recommended for spraying on your clothes.  It is an insecticide and as such, should not be inhaled.  But if you take your clothes to a well ventilated area (like outside) and spray with permethrin, it will dry within 2 hours and will bind to the outside of your clothing leaving no residual vapours that can be inhaled.


Health Canada does not approve this product for human use, so it is not as easy to obtain.  Yet the Canadian Paediatric Society recommends it (with the above qualifier from Health Canada).  It has been used in the military for years.  Ironically, it the same ingredient you will find in horse spray (and applied by humans) at a percentage of 50%. 

Since this is not promoted by Canada it is not always as easy to get, but not impossible.  So a few suggestions to acquire it: 
1) I have ordered it through Amazon, a few came to me no problem, but one product was held up at the border.  However, I have the same issue with many of my vitamins.
http://www.tickencounter.org/prevention/protect_yourself
2) There is a company in the U.S. that you can mail certain articles of clothing to and for a reasonable fee they will spray them for you and return them.  They are considered sprayed for up to 70 washing (which I am told is past the life of most clothing).  They will ship to Canada, however you must be aware that you will be responsible for ship both ways and duty. 
www.insectshield.com
3) You can buy pre-sprayed clothing at some outdoor stores (but mostly in the US). 
http://sectionhiker.com/treating-your-clothes-with-permethrin/
4) I am also told you can buy the clothing spray at some outdoor stores such as Bass Pro.


I understand the spray is very harmful to cats, as a word of caution.  There is no pretending, it is a chemical, so it must be something you consider all of the options, before using.  For me, I will be spraying all my families hunting clothes.  The alternative for me has been a lifelong, once debilitating disease that is not treated in my country (using most of my retirement saving).  Not really a question in my mind.  Here's more info for you to decide for yourself.

Repellant sprays
At the moment DEET is recommended as a direct on skin repellant spray for humans.  The good news is there are newer products on the market that are performing just as well as DEET at a lower percentage (20%) and are considered safer. 

Picaridin (sometimes listed as Icaridin): This can be obtained in Canada, just not everywhere.  You will only find it at 20% and can find at large box stores where insect spray is usually found and I know it is at MEC.  I have also ordered this from Amazon.


Avon Skin So Soft has it as an ingredient at 10% (which just means it many need to be reapplied more frequently).  However, I haven't found it in stores yet, but did receive it by mail quite easily. 

There are other newer ingredients that seem to be performing well.  I have not been able to investigate their acquisition in Canada, but I encourage you to visit the US Environmental Protection Agencies tool on their site.  It will not only help you find the right repellant for you, it will give you all the info you need re: application and longevity.  Great site.
https://www.epa.gov/insect-repellents/find-insect-repellent-right-you


There are natural alternatives but it is hard to say which ones work.  I cannot find tests or studies that compare them. However a natural solution has to be better than none.  I am sharing one for Dr. Josh Axe, a published doctor on the treatment of chronic illness and Lyme disease.  

The 24-36 Hour Rule

One last quick and important piece of advice is -  not to assume you are okay by the rule that says you cannot be infected until after 24 hours. The rule comes from the fact that it usually takes 24 -36 hours for a tick to feed and fill up on you.  It is generally understood that is the point where it "overfills" and the lyme bacteria can be regurgitated into you.  But that assumes so many factors, such as: 


1) It was not feeding on something else and fell off
2) It was not pushed, pressed on or moved in any way
3) It was not stressed at any point, when they're known to regurgitate 
4) The removal was perfect 

Image result for engorged tick sizeThere are many studies revealing infection from a tick can happen well within the 24 hour period, such as one that infection was as early as 6 hours. ( I will site these studies shortly) Myself, I believe the tick was attached for around 8 hours and I was infected likely for many of the reasons I mention above.  Another study has shown that some of the co-infections that accompany lyme, infected within 10-15 minutes.  Seek treatment, it is your next best prevention after a bite (another blog to follow on treatment info). 

Among other handy tips that are available on-line, you can always use a sticky roller (white) to see if you have any ticks on you upon return. You can put your clothes in a dryer and do a really good tick check before showering. 

Happy and Safe Outdoors My Friends!

My Message to Senators and MP's about Lyme

On March 6th, 2017 I was invited (by MP Karen Ludwig and MP Elizabeth May) to speak to Members of the Senate and Federal Members of Parliament about my battle with Chronic Lyme disease on Parliament Hill.

Here is what I shared...

Background: 
"Kristy Giles has been in park and conservation areas management for 20 years.  She has a BSc in Environmental Biology and studied the health benefits of nature for her Masters.   She is also a certified Health and Fitness Trainer, who was adamant about fitness in the great outdoors and motivating others to experience all that was possible in parks and natural areas.” 

With my background I had a good handle on tick and Lyme prevention.  Yearly training at work always told me “if you are showing symptoms, let them know your profession, you are high risk”.  Yet, while on a 300 km hike along the Rideau Trail, by myself, it all failed.  

One night, I had 5 ticks on my back and one embedded in an impossible place to reach.  I eventually removed it and promised myself I would go to a doctor as soon as I got back.  I tested negative for Lyme, was sent to Infectious Disease where I also tested negative for Lyme. 

Later that year, I struggled with many illnesses.  My doctor said, “I seemed to be catching everything that was going around”.  Some described me as the unhealthiest, healthy person they knew.  Symptoms continued to build and my doctor became more concerned. More specialists - more tests - revealing nothing.  

I slowly but consistently declined, I lost feeling in many parts of my body, I lost my balance regularly, my short term memory was almost non-existent, as was my reading comprehension. I could barely follow a story line in a tv show. I was reverting to things in my past, getting lost and confused.  When I spoke, the wrong words came out. I couldn’t walk in the morning without support and the fatigue…In a few short years I went from running an ironman to barely being able to walk. 

In one last effort to seek help in Canada, I visited a locum at my doctor’s office, wanting to investigate Lyme further. She wondered “why did I want it to be Lyme’.  After refusing to review my list of symptoms she could only suggest we revisit the tests I had done over the last 3 years and wait for more symptoms to develop in case it was MS or ALS.  This left me no option but to travel to the US and spend (what has now amounted to) 70K of my own money. 

I was diagnosed in the US with Lyme and two co-infections, bartonella and babesia.  I was put on a strong antibiotic protocol for an estimated 3 years.  I sought out complementary treatment and travelled to another clinic in Utah.  I have battled many of my physical symptoms and am now on a new protocol to help my cognitive and cardiovascular symptoms.  

After some recovery, I decided to return to my doctors office to see if they would support or follow my treatment.  A different locum insisted I go off my meds since they only treat with Doxy in Ontario.  I explained I was dealing with Chronic Lyme, which I had for over three years.  No response, no suggestions, no assessment of my basic health indicators. 

A few months ago, my original doctor returned.  Her positive reception gave me hope. I referenced my last year since diagnosis to which she replied, “I read through the history, no need to go back through it.”  I referenced Lyme to which she responded “that is between you and your specialist”.  No questions asked - visit over - third doctor in ON - no basic vitals taken or interest. 

Like so many, I have been denied any long term disability.  While I go further in to debt legally fighting that decision, I am one of the lucky ones who might go back to work.   Except, I work with and manage many people who work in parks, the outdoors and in the field.  How do I do that knowing I am responsible for their health and safety.  If they are bitten the chance of them getting diagnosed, treated or even acknowledged is immensely low? 

I have been an advocate for the benefits of nature for decades.  How do I do that now knowing I am sending people to a hazard zone, where they will likely suffer physical, mental and financial  trauma. 
How do I send them there when my horror started in one of our famed Provincial Parks and the Provincial Health Care has neglected me at every turn.  This year more than ever, we are all encouraging people to get out into our parks and natural areas.  I hope we are also going to be there for them if prevention fails. 

I agree, the science needs to improve, but first the humanity around this illness must improve.  This is not an illness without a cure.  It just needs to be recognized and treated immediately.  Clinical diagnosis can only work when doctors are willing to learn what Lyme looks like and what the early to chronic symptoms really are.  If the consequences of treating this illness and the fear in talking about it continue to be as severe as it is, the situation has little chance of improving. 

Please take note: I, among hundreds of others I know, are not part of the Lyme statistics in Canada.  Many have tested negative in this country and have been diagnosed or treated elsewhere.  If we had access to all of the numbers, I wonder the epidemic we would be facing. 
I feel like hundreds of thousands suffering are so dependant on the words I choose to share with you today.  You see, the unfortunate part of this illness is that for many decades, too many have been too sick to fight for what is right.  We are at a critical point where those that are able are using what little resources they have to create change.  I plead with you to recognize the desperate need this time.  For many this is their last hope, for themselves and those at risk.  Ultimately, our whole country is at risk.

Lost in Lonely Lyme

This is not how it was supposed to go.  I was very social, loved being out, active and involved.  I was incredibly active, competitive and adventurous.  I managed 50 properties and parks, taught health and fitness, loved the outdoors and inspiring others to do the same.  So how is it that I am sitting bundled inside on a snowy day, grateful for my puppy companion, trying desperately to figure out how I got here.  Is it possible that a one second move, an improper removal of a tick,  derailed my whole life, the existence of who I thought I was and who I was going to become? I dare say, it was.

I don't know this person, who just four short years ago was doing a 300km hike, in record time, by herself, training for an ironman and always rallying her friends to join her in something active and outdoors.  That person is so non-existent now, that it is almost hard to believe she ever existed.

That person now, has used up most of her savings on treatments, has no income, tries desperately to make plans that usually she can't follow through with, has a Doctor in the US that will only treat Lyme, a GP that won't treat lyme and another doctor, that won't treat Lyme, nor someone without a GP and an insurance company that denied her claim because her diagnosis' don't match and a government that for 3 years has promised to do something about this epidemic, but has done nothing. Lost and lonely doesn't begin to describe how that makes someone feel.

I never imagined life in a country where a major epidemic that I suffered from would be ignored, or a doctor who would say "I don't want to hear about it", or decades of hard work and commitment that would pay into a benefits plan that would deny with one quick stroke.  All of those simple promises that were made to me growing up in a privileged country have been denied.  This is not how it was supposed to go.  This is not how I was promised my life would be, not even close.

So I sit here fighting this lonely disease that stops me from doing all the active things I love to do, that keeps me from friends and social activities that I enjoy and makes me feel abandoned by a system that I believed in and yet, I feel blessed.    I have family who have stepped up and helped me along the way.  I have friends who have changed their schedules and accommodated my needs at every chance.  I have co-workers that check in and remind me there is a place when I am better.  Local businesses have offered assistance in amazing ways and community groups that have funded and helped in unusual ways.

As I sit here feeling abandoned and alone I realize I am anything but.  I am blessed. I am not alone. Somehow, at the other end of this will emerge me, the real me.  The new me that will from now on, will believe in my instincts instead of only the professionals that so badly let me down.  The me that now knows I don't live in a country with equal rights and care for all.  The me that will fight for a cause knowing that justice doesn't always prevail.  And the me, that will find a way to help others, much like me, who are lost and lonely.  I look forward to meeting that version of me when I get to the other end of this battle.  Until then, I will have to believe in all of that or I will become bitter and hurt by the system that let me down.

I have to believe there is a greater purpose in all of this. I have to believe that we deserve better. I have to believe justice will eventually prevail. I have to believe that someone with influence will soon listen.  I have to believe action will take place sooner than later.  I have to believe that this insane reality will end someday and solutions will be available.  I have to believe that someday, someone will admit they wronged us.  I have to believe it will all sort itself out, because until then I am lost and lonely in Lyme with only my blessings and my belief.


My Wish, my one and only wish - for Lyme

There is so much wrong with Lyme disease, the testing, the medical system, the insurance benefits, the symptoms, the treatment, the understanding, the financial burden and the list goes on. There is so much wrong that I feel overwhelmed with all that has to happen to find help for (likely) millions worldwide.  And yet nothing, almost nothing is happening.  
I have spent, days, weeks and months through my battle with this disease trying very hard to figure out where and how to concentrate my efforts to find help for those needlessly suffering as I have.  A fight that would not be so hard if people understood this disease better, if doctors weren't being charged after treating appropriately, if the regulatory bodies didn't restrict the appropriate treatment for this illness, if researchers could get the science out showing most tests and treatments are inadequate, if insurance didn't decline those suffering, if we didn't have to travel to another country for treatment, if we didn't have to remortgage or use our savings to find health, if people could truly understand what it feels like to suffer from Lyme.  And that's when I realized what had to happen to solve it all.  
If I had one wish and could only be granted one wish for Lyme patients, it would be  this.  It would be that people could see, feel and understand the symptoms of Lyme. Because if they could then:

- My husband could have felt the pain in my joints and muscles, because he would have not let me convince myself, it was from a workout or lack of
 
- My doctor would have felt how hard I had to work to breath to just walk up my stairs when a year before I had completed an ironman 
- My coworkers would have not passed off my balance, memory and comprehension issues as me rushing, overworked and too busy 
- The cardiologist would not have accepted my maximum 9 mins of stress testing as normal, seeing I could run, bike and swim for 7 hours without fatigue before. 
- The health units would not claim that a tick had to be attached for more than 24 hours, when the Lyme, Babesia and Bartonella entered my body after 8 hours, because I unsuccessfully detached it cleanly. 
- My friends who saw my shaking, twitches and weird illnesses could have known how frequent they were and not let me dismiss them 
- I could have realized how slowly I had declined over 3 years and not made excuses for the 50 plus symptoms I had acquired 
- The list of diagnostic symptoms for Lyme can be realized years before they are so extreme, you can no longer deny what is going on 
- The insurance companies could wake up in my body and know what it is like to not be able to get out of bed easily and need to hold railings and the walls to be sure your body can support you 
- Anyone I encountered could feel a dose of the extreme fatigue, that is unlike anything I have experienced in an ultramarathon, endurance race or the hardest workout, and to know the illness, nausea, dizziness and weakness that follow rest, only making it worse 
- Every specialist could feel the appropriate symptoms that fall short of being detected by the diagnostic testing 
- False positive, false negative and useless testing would be unnecessary 
- Every employee could feel what it is like for their staff to work with so many things wrong and know they are giving all they have to remain committed and faithful 
And if my one wish that others could see, feel and understand the symptoms of Lyme, is too much, then I could make it less.  It would be that I (and other Lyme sufferers) could realize how bad symptoms are before its too late...the symptoms that develop so slowly over time, I was able to dismiss them, to believe the multitude of doctors and specialists who said I was fine and allow me to blame myself for everything that was going wrong.  And in that, to know the longer you deny this disease the harder it is to battle it.  Oh how hard the battle is.

So if I break my wish down into tiny actions, it becomes this: 
- share my mistakes 
- share what is wrong with the system 
- share solutions  
and most of all share hope...
My hope that one day everyone will understand Lyme and not because they have experienced it.  But because they know how it ruins lives, how valid it is and how important it is to believe, diagnose and treat immediately.