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.

First Do No Harm...I will take just listening?


I know when I was bitten; it was on a 300km hike, through a high tick infested area with one day resulting in 7 ticks on me, one engorged and attached.  It was in a tough spot to reach, next to one of my shoulder blades and I was alone and had difficulty removing it.  As a profession, I managed 50 parks and natural areas and was annually trained on tick and Lyme prevention.  I was always told, "just let them know your profession and you will be treated for Lyme instantly".  I promptly got sick after my hike and was sent to an infectious disease specialist.  So, how is it that I ended up with Chronic Lyme?  I can blame myself a little but I also have to lay some blame on the "system".  It fails people with Lyme every day.  If it can fail me, no wonder it is failing hundreds of thousands annually.

Initially, I thought the breakdown was the fact that after 2.5 years of my family doctor sending me to every specialist around, she went on leave for a year and a half.  She always took me seriously and often referred to the fact that she felt I played down my symptoms.  I think I did so because I was embarrassed to always be going in to see her with a new issue.  I went years without seeing her before and all of a sudden everything seemed to be going wrong.  I was always very active and loved adventure and endurance sports. I took very good care of my body and ate incredibly well in an effort to prolong how long I could do these types of activities.  Months after she left on leave, things started to decline rapidly.  In two years I went from participating in a half Ironman to having trouble walking for more than 5 minutes on a treadmill, slowly.  I had lost feeling in many areas of my body and the pain and stiffness felt as if I ran a marathon daily.  

It was when it hit my brain that I could no longer deny something serious was going one.  Inreflection, I should have acknowledged that fact years earlier but when professionals keep telling you how healthy you are, you start to think its all in your head.  Who was I to argue with cardiologists and internal medicine?  At that point, I was resorting to memories from decades before, as if they were recent.  I used old email addresses, went to old work locations and would forget something before I even picked up the pen to write.  I couldn't remember directions to a location I had gone to for years and seemed to have no control of my left arm.  I had trouble speaking because words escaped me and then the thought would leave while I searched for the word.  I should have been more concerned with the physical symptoms but as anyone who participates in endurance sports knows, pain, stiffness and mobility issues often come with the territory, so I started to tell myself that the years and events had caught up with me.  Regardless, not be able to walk first thing in the morning, because your feet and legs won't support you, should have been a sign.  I would walk down the hall holding both walls until I was able to get better mobility to get down the stairs.  

It was thanks to a colleague who directed me to a specialist in the US. I was told that I could seek treatment there, I would just need the support of my GP back in Ontario.  I went into my clinic asking to see the Doctor filling in for my GP.  I have to admit, I never expected the encounter I had, in my wildest dreams.  it was the sort of thing that only happened in movies.  I had been warned that Doctors in Ontario and parts of Canada don't agree with Chronic Lyme or Lyme treatments, that they may hesitate to support me.  I thought " but they will see the years of specialists I was sent to and think, well it worth investigating", right?  Wrong!  She snickered when I spoke to the cognitive issues.  She asked me "why do I want it to be Lyme?"  To which I replied " I don't.  But it's something and I need to resolve before it gets any worse."  She suggested we start back at the beginning and redo three years of specialists visits.  I said to her "in those three years I have gone from running seven hours to walking minutes - do you not think something is really wrong with me?"  She responded "yes" and started to walk out of the office and stated, "I hope you find what you are looking for."I started to cry and wished ever so badly my doctor wasn't away.  
I went to the US and was diagnosed with Lyme and 2 co-infections.  I traveled to another clinic in the US, that also supported that diagnosis and spent most of my savings on treatment.  As I recover back in Canada, I had asked the Executive Director of the Clinic for another doctor.  They refused and insisted I see the same doctor.  After several attempts to talk to him about it, my emails were ignored.  Shortly after this, I heard that Doctor was gone and another was replacing her/my doctor.  So I booked an appt to see her.  My blood tests were showing issues and she quickly told me I had to stop the meds I was prescribed in the states.  She stated that "In Ontario, they treat Lyme with two weeks of Doxycycline" to which I responded, "yes, for acute Lyme.  But this is Chronic Lyme, I've been battling it for over 3 years." She stopped typing, but did not look at me and shook her head (ever so slightly).  I had brought all my paperwork from the US and she scolded me saying, "I don't have time to go through all of this, You will have to make another appointment."  Thankfully she did go over a brief portion of the history and made some notes in the computer.  

The one major credit I will give this doctor is she called me back in the following week because she had done some research.  Not research on Lyme but on the medicine I was taking, since it is not available in Canada.  She felt it was too strong and I should never take it again.  In consultation with my US doctor, we waited for my blood tests to return to normal and I decided to resume the meds because they were the first thing I had done that was making a difference with my cognitive issues. 

Months later my blood tests were showing other issues not related to the medicine but likely related to the Lyme.  I made another appt with the clinic and was pleasantly surprised to find out my Doctor was back.  Oh, what a relief!   I had waited a year and a half and finally, someone who knows me will be able to help.  I figured she would be shocked at what it turned out to be and even more shocked to hear how bad I had gotten from it. I have to admit I was so thrown off by her reaction that I was not prepared to ask for an explanation, that I still would like to this day.  She was ever so friendly and acted happy to see me.  She asked what I wanted to talk about, to which I said, "well, its a really long story."  She replied, "no, I read through your history, so no reason to go over that."  That "history" would be the quick notes the last doctor made while in a hurry to not go over my 15-minute appointment. I was a little stunned, so responded with "well, then I guess we should talk about my blood tests." I referred to the Lyme and how supplements can affect the Lyme.  She responded with "that's between you and your US specialist." I sat stunned and it was at that very moment I realized how abandoned and in crisis patients were in this province/country/world.  

I had traveled through 8 months of treatments and recovery, praying for the day my doctor would return. She knew me, she believed in me, she never let me down...till now.  How could anyone deny I had Chronic Lyme, the treatments were helping.  It couldn't be in my head, I was improving.  I wasn't asking for help, just support.  At that moment, I realized that all the other stories I had heard about Lyme patients being abandoned, shamed, ignored and mistreated by their own doctors were true.  If my doctor, the best doctor I had ever known, could not even care to listen to me, hear me or find out what was going on, any doctor could.  I have to admit at that moment I should have asked for an explanation, but I was too stunned.  This isn't even close to how I expected this appointment to go.  I also knew this process had made me harder, because I at least made it to my vehicle before I started to cry.    
There are a lot of theories out there as to why Doctors are so scared to deal with chronic Lyme.  I personally know of two in Canada who have been charged or warned for treating Lyme and others who diagnose and believe in it but have to send patients to the US to avoid losing their license.  The Minster of Health sent a letter to the College of Physicians and Surgeons of Ontario stating that Doctors are to diagnoses Lyme based on clinic information because they have finally realized that the blood tests are not accurate.  They Canadian blood tests only detect one of over 33 strains in Canada and three strains in the US.  So it only makes sense that there are so many false negatives.  But this letter is not enough.  The fear, the charges and the risk of losing their license is so great, they don't even want to hear a patient speak of it.  How are they to learn the hundreds of symptoms that evolve over time if listening scares them?  Does that not constitute neglect?  You have a patient in pain, losing their mind and declining at a rapid rate and you don't want to hear a word of it?  You don't even want to listen to their story even if you do or don't believe it? If anything, do we as patients, not deserve to be listened to?  

In all but one of those appointments was my blood pressure, temperature or blood oxygen level checked.  All of which had been problems in the past.  But that's okay, like the majority of Lyme patients I have learned to check those things myself, much like finding help and treatments.  But I still believe if there is anything I deserved in this process it was for someone to just listen to me for one minute, to hear what the symptoms are, what treatments I was seeking or how I am doing now. But no one in the medical community will listen, truly listen.  We are so far away from "first do no harm" if no is willing to even listen.  

If you don't believe me, you just need to listen to Lori Dennis, a Registered Psychotherapist who just released the book "Lyme Madness".    Unlike many Lyme patients who are just too sick or tired to fight, she lived the craziness through her son's battle and was so horrified at the medical community that she wrote about it.  She is able to articulate what seems so confusing to us patients.  IN her book she states " Thanks to the CDC and IDSA, Lyme sufferers are forced to be warriors on this medical odyssey - navigating this disease primarily, on their own, with very little guidance.  It's time the medical community stop negating and debating the existence of this chronic disease and start listening to the sufferers and their suffering.  Before long, they too will be affected. Maybe then they will get off their high horses and pay attention to this undeniable level of anguish and affliction." 

I really don't care what Doctors believe or don't believe.  I really don't care what the big agencies say about Lyme disease.  At a minimum, as a Canadian Citizen, who pays into a provincial health care system, I deserve enough care that someone takes the time to listen.  At a minimum, do I at least not deserve that?  

The front of Lori Dennis' book "Lyme Madness" summarizes it best "WHERE MILLIONS ARE SUFFERING...AND FEW ARE LISTENING"

Its Not Just About the Lyme


It may sound crazy to you but there is no one in this world praying harder that they will be sicker than sick - than me.  Who would wish that on themselves...well, me for one.  But for a very good reason and future health being the main one.  Let me explain.

I finally have a Canadian doctor working with me that is part of the ILADS group.  That stand for International Lyme of Associated Diseases Society.  ILADS who promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.  They hold conferences and share cutting edge research and information among themselves to treat Lyme but also similar illnesses.


I guess I'm not sure why every general doctor would not want to be involved in this if Lyme is becoming and epidemic?  Regardless, I have finally been accepted by a medical doctor in Canada who is part of this Lyme literate group.  It is the same group that my doctor in NY is involved with and the naturopath in Ottawa.  So everyone is on the same page.  But the Ontario doctor gives me access to the Ontario Health System and is obviously much more accessible geographically.  However, the wait has been a year and she is so booked up it is 4 months between appointments, so I still need to get my family GP on board, who hopefully returns next month (fingers crossed - she has been away for a year and a half of this journey).


So, in my second visit, I learned that there was new research being shared.  It was not published yet but had been presented at the last ILADS conference.  The finding was that there is a parasite wreaking havoc on the babesia strain (one of the co-infections I am still battling with).  You may remember it being referred to early on as "that bastard".  It affects you neurologically, overtakes your blood and nervous system and is very, very hard to attack.  You may recall the thick/double walled cells it develops and the biofilm that surrounds it that makes it hard for the antibiotics to penetrate the cell.

Well, the finding is that the biofilm is actually created by a parasite that infiltrates the same cells as the babesia.  I was actually shown a picture of the cells with the parasite within (microscopic pictures of course). Pretty cool when a doctor involves you enough to show you that.  So what this requires is a medication added to my existing protocol and a few more supplements.  The protocol I am on is exactly what both the US and Canadian doctor recommend for me.  So, the addition of an antibiotic  that I rotate with the existing one, should attack the parasite.

Its been interesting to me, because I am part of a forum where a Lyme literate doctor, in Calgary has been one of the leading experts in Lyme but seems to specialize in many chronic illnesses and mysteries.  He often refers to many parasites and how they are the problem or add to the problem.  It has shocked me how many parasites are out there and can wreak havoc with our health.  It seems to me if that is a major cause of many of our mysterious illnesses, we are actually doing worse than 3rd world countries who seem to have a handle on common parasites and treat accordingly when they can.  The trouble is sometimes they dont have the means to.  We can - yet we dont go there????  Anyway, I would recommend to anyone in the west with a strange or chronic illness to check him out.  I think his wait time was three years but might be closer to 1 now.  He seems to be amazing at investigating the multitude of reasons why an illness is going under the radar.  He has been known to direct many people in the forum in the right direction.  He has an incredible sense and understanding for the struggles of thousands. He has a lot to offer if more doctors would listen.

I am told as I add this med, I will get quite sick from the die off.  But in one sense the sicker I get the better it is working.  So like I said, "no one is wanting to be sick more than me."  It seems silly to wish that but continues to be a pattern, in this recovery.  It is interesting this recovery.  Its a long road and no joke when they say the recovery is almost worse than the disease.  I really thought by this point life would be back to normal.  I am so happy it's not where it was 10 months ago.  I just became so consumed with healing and life being normal that I have dont nothing but since then.  But I guess I still have a piece to go, so my be my time to reflect and adjust my mindset.

I am trying to let go of controlling this outcome.  I need to live despite where this illness finally takes me.  I heard a speaker once when speaking about her cancer remission say she does not say she overcame cancer, she says she lives with cancer.  She said that way there is no fear if it "comes back" or what it is doing to her.  She chooses to live a happy, healthy and successful life with cancer.  I didn't like that thought process at the time but now understand it.  When I said earlier that I was going to win the war with these bastards, it meant I was going to be Lyme free some day.  I realize now the war is not won when I am Lyme free, the war is won when I live a happy, fruitful, successful and quality life.  And that I am going to do.

So here's to much sickness ahead and much healing further ahead.  I still am on route to win the war...those bastards are not going to get me down.




Back on Track - Fighting Lyme

I think it's fair to say the last few months really challenged my motivation to win or even keep up this battle.  I believe it is mostly because I had imagined life being fairly normal by now and it has been anything but.  In one aspect my recovery seemed to be going backward all of a sudden and it seemed to be a train I couldn't stop regardless of all the tools I had at my disposal.  It was out of my control, so secretly, deep inside I wanted to find a reason to give in.

Maybe it was the doctors disagreeing on the meds or the promises of new doctors that I would be better when I only got worse.  Maybe it was the meds and supplements that kept adding up and only making me sick each time I took them.  Maybe it was the insanely strict diet, the expensive organics, the time-consuming specialty recipes and smoothies that didn't make a difference.  Or maybe it was the depleting energy that didn't allow me to do the exercises and routines that I faithfully did month after month only adding to the depleting energy.  The anxiety that was becoming insurmountable when I thought it was improving.  I just started giving up and making bad diet and health decisions then adding to my guilt...but I am back!

I think sometimes in life we have to fall off the rails, to figure out the track we want to be on.  It made me reevaluate a lot.  With Lyme you try everything, no one knows the answers but people know that they tried these 20 things that seemed to help. You never know which of those things helped but somewhere in there may be a solution, so you add it to the pile.  And after a while it all seemed to be too much, your days, life are spent trying to get better and all you seem to be doing is getting worse.

I literally said fuck to it all....well partially on doctors orders because they could not figure out what was causing my irregular blood tests.  Admittedly, my fatigue increased, many symptoms started to return, depression seemed to settle in and I sat with that for a few days to see what would happen.  And then it happened.

I slowly started to add back a few things that I thought might be helping and really evaluated the others.    I cancelled any obligations or appointments.  And consulted with two main doctors on what I should do about the meds. I even saw some friends laughed and acted like there was nothing hanging over my head.  It was great and as I sit here today:

I start my new protocol of meds and feel convinced this time I can manage them better with all the little tools I have learned.

I am only taking 8 supplements (twice a day) instead of 24 and am convinced these are the ones making the difference.

I am slowly starting back into the routines:

a) I walk outside every day, and work on my breathing. There is no better way to expand your lung capacity and improve your oxygen content than by consciously working on your breathing in a clean air environment.

b) Do immune boosting exercises with oxygen therapy ever second day.  Its a fine line with these exercises to not go past your adrenal capacity.  You want to boost the enzymes that support your immune system but maintain your energy resources. Its a very cool scientific approach to a workout.  Which is also very beneficial to helping women maintain better hormone balance _ who doesn't want that.

c) I do a hyperthermy bath every second day - body temp to 102 degrees.  I gave this up after I had finished the 4 month protocol. I also found it hard to do as I got sicker on the meds.  But I believe this practice to be one of the most significant factors in killing off the bacteria I have decided to keep at it.  It seems to be when I see the best results.

d) I drink a 30 ingredient medical smoothie 5 days a week - made from scratch
- Make a vegetable juice drink twice a week

e)  I drink lemon water every morning to help detox what my body fought off through the night.  I have sweats and chills most nights still.  Means my body is working hard to fight and detox.  You want to make sure you get rid of what it did first thing in the morning before you do something that dehydrates it or bogs down your digestive system (that's why fruit is helpful too).

A few new things that I am adding that should help with the meds and detoxifying the bacteria as it gets killed off. This is key and is vital to being able to handle the meds and manage the side effects of the "herxes - die off".

1) Drink dandelion coffee (natural and caffeine free).  Regular coffee makes you dehydrated so it will not help eliminate bacteria or any toxins that your body is trying to get rid of.  The caffeine is likely intensifying the anxiety, so definitely want to minimize that.

For a specialty drink, I sometimes add french vanilla stevia with coconut cream to the dandelion coffee.  I have come to love this but it may be because I have not had something prepared or refined sugar in 7 months...lol. I wouldn't know better.

2) I eat natural fruit in the morning.  I even have to be careful with the amount of fruit I eat, even natural ones feed the yeast in your body which feeds (and hides) the Lyme.  This is hard for me.  So I limit to breakfast and one snack.  My two favourite breakfasts are:
- berries with organic natural yogurt (this supports the good bacteria I need that the antibiotics are killing off of with the Lyme).  I sometimes add some natural vanilla since the taste can seem really blah at times or I even as a small bit of raw honey once in a while.
- I have found the PC organics peanut butter to be as close to the processed sugary brands we are used to.  It doesn't separate like most natural ones do.  I often eat this with banana chunks.  A little bit of sweet with an awesome source of protein.  BTW peanut butter should have peanuts as the only ingredient...it doesn't need to have all the added stuff to take away from what a great food it can be.

3) I drink lemon water every morning to help detox what my body fought off through the night.  I have sweats and chills most nights still.  Means my body is working hard to fight and detox.  You want to make sure you get rid of what it did first thing in the morning before you do something that dehydrates it or bogs down your digestive system (thats why fruit is helpful too).

4) My goal is to eventually be able to apple cider vinegar shots.  I find the smell horrible and it makes me sick, but they swear there is no better detoxifier in the world.  I found a recipe that masks the taste and smell and will do this until I become more courageous.

- warm water
- 2 tbsp apple cider vinegar
- 2 tbsp lemon juice
- 1 tsp ground ginger
- 1/4 tsp cinnamon
- 1 tsp raw honey (optional)

On top of this I am also taking 3 supplemental detox tonics.

5) No news or Facebook.  Although it has been helpful to do research and belong to a medically led forum on Lyme, it is also really discouraging.  People are really suffering and the medical system is cruel and impossible on so many levels.  I find its too much to take right now. Maybe when I am better, I can better advocate for these people.  I first must focus on all thats good and when I am better and can focus on what still needs to be done.
So there covers, just the start of my day.  Start of my next round at healing.  Its a new day.  I feel good, the changes are good and so it begins.  Here I go!
















I'm Not Gonna Lie...Lyme Sucks!

I'm not gonna lie...this is not how I pictured this healing process to go.  It doesn't fit with my muscle through pain attitude, get over it and move on.  It lingers, it gets worse, it hits you when you think you are doing better and gets better when you finally accept it won't.  Its a roller coaster to say the least.

I'm not gonna lie...the recovery is worse than the disease.  The saying is true.  Except for the fact where the disease will eventually take you.  I now know why the girl who helped me get help, did not show the same relief as I felt with the diagnosis.  She knew all too well, the endurance test that was ahead of me.

I'm not gonna lie...it's lonely. I know I have said this before. But you get sick of hearing yourself talk about it, so you can only imagine what it is like for others.  Yet, you feel the need to explain to everyone why you are not yourself, why you let them down, why you think you can do something and then find out you can't, why you look okay, but are doing horrible inside.

I'm not going to lie...I wanted to keep a brave face, but the effort is wearing.  I wanted to smile, remain motivated and positive that I could do this.  It just goes on so long.  One day, you are sure you are going to beat it and then next trying to picture your life hurting, feeling this sick and tired forever.

I'm not gonna lie...I waffle in my posts by trying to make people feel better and making sure I give an honest impression of how horribly frustrating this disease it.  All I can say is no matter how much I write, explain and describe, there is no way to explain the turmoil and fear that goes on inside the head of a lyme sufferer.


I'm not gonna lie...after I say something like that above I feel guilty, because there are people at greater risk, and Lyme sufferers far worse than me.  I am grateful and so blessed. Yet on the really bad days it seems unbearable to imagine keeping this up forever.  I guess I just assumed the bad days would be over by now and wonder if they ever end.

I'm not gonna lie...I do things but the effort is sometimes ridiculous to even describe.  Some days, I do things in 10 minute intervals, because my breathing is that of a 90 year old.  I can sometimes take three naps in a day, trying to accomplish something in between.  It can take me all day to get the mental and physical strength to make supper, and then feel shame that is all I did.

I'm not gonna lie...not every day is a bad day.  Some days, I feel great (and realize that's only relative). Some days, it can turn around in hours and become a better day and some days, the bad days go on for days, for no reason and you just want to give up.

I'm not gonna lie....I had to lose all my physical progress with the Utah treatments to take the meds that will hopefully eventually help my heart and head.  They wore me down, so I am more fatigued and physically weak than I have been in months.  It is so hard to lose one major thing you gained, to resolve another...two steps forward, one step back.

I'm not gonna lie...I am like a kid who doesn't want to take her medicine some days.  I am on so many supplements, that I take handfuls at a time.  I want to gag.  And many times I am taking things that I know will make me sick.  That is hard to do day after day.  I had to stop my one medicine because my blood test were showing problem areas.  I was relieved because they made me so sick when I was on them every second week.  But then I started to get worse and am now relieved to start back.

I'm not gonna lie...I drive myself absolutely insane every day trying to figure out if I am worse because the meds are fighting the bacteria or if it is Lyme getting worse.  I wonder if I ate the wrong thing, should be taking or not taking something.  If I should go back to old treatments, do more or less with supplements, doctors, try new options, stop old ones. I don't know whats working and whats not, if anything is at all.

I'm not going to lie..the chance of recovery I am told is zero.  Yet, I was determined to disprove that.  I am told remission is possible.  So I am going with that. Somedays, I would even forgo remission, if I could just know what each day was like.  But then I smarten up.  The fights not over, it's just harder as you get weaker and you do get weaker, in mind and body.

I'm not gonna lie...people are suffering far worse than me.  I belong to a doctor supervised medical online forum and the stories are horrific.  It is also glaringly apparent that we are so far way as a country from getting even the slightest help for these people (diagnosed and undiagnosed) it is truly demotivating.  The stories of the game that the CDC, testing, doctors and government are playing is disgustingly appalling.  The chance of this resolving in decades is close to impossible.

I'm not gonna lie...I was appalled at how little the new GP covering for my doctor (who I still have yet to see since getting really sick) understood.  To give her some accolades she did some research between my two appointments and came with a very different attitude to the second appointment.  But in the first she was disgusted with the course of treatment I was doing and rolled her eyes.  She said they treat Lyme with a short course of doxyclycline in Ontario, to which I explained she was talking about early Lyme, not Chronic Lyme.  She laughed when she read the notes from the American Lyme Specialist who stated that "Lyme sufferers can experience very "weird" symptoms", to which I shortly said "that is a huge understatement.  And thought to myself, lady, if you have even the slightest idea what this is like, you would not have the gall to laugh at that.

I'm not gonna lie...this is a horrible mess this country is leaving Lyme patients in.  Many dish tens, upon tens of thousands for care and what little is covered often ends because they are not back at work and get rejected for LTD.  This part of the story is true for the majority of people I talk to. There is a huge law firm in Toronto specializing in Lyme because the majority of Chronic Lyme patients are rejected from LTD.  So after all those expenses many have to hire a lawyer.  Talk about kicking you while you are down.

I'm not gonna lie...the biggest lie is what Lyme looks like on the outside.  If you see a Lyme sufferer,all I can tell you is it is the farthest thing from what that person looks like to you.  They are masters at muscling through an event or activity and struggling and suffering for it afterwards.  There is so much more physically and mentally going on inside, than what it appears.

I'm not gonna lie...I could never properly describe to you what Lyme is or the symptoms. I get asked that all the time and they sounds like nothing.  But at the time, I can't even say them all.  It also may seem like there is no one major issue, they are all small issues.  But together they ravage every part of your body and mind.  Not one major thing is wrong, just everything is wrong.

I'm not gonna lie...when people ask me how I am doing, I say "okay".  Mostly because that is what they want to hear, but also that is what I want it to be. And some days I really am okay.  But no one wants to hear someone is not okay, even if that's the truth.  I think the majority of the population says "okay" when they dont mean it.  Its just what we do.  I wonder what our world would be like if we could treat one another as if we weren't okay, no matter what we said.

I'm not gonna lie...some moments I just don't feel I have what it takes to do this forever. Then other moments I know I won't have to do this forever.  I just don't know what that place will look like.  Some days I feel the dreams I still have, slipping away.  They are things that have motivated me to push hard through this process.  I don't know what's smarter, letting them go or hanging on for dear life.  Until I'm sure, I guess I will hang on.

I'm not gonna lie anymore...Lyme just really, really sucks!






If it Challenges You, it Can Change You

They say "God laughs when we make plans" but they also say "God has better dreams for you than you could ever dream for yourself".  I certainly have accepted the first to be true and am starting to see/hope the second to be true.

The latest protocol of antibiotics has proven to be a bust.  Even with the week break between taking them, I started to get worse each week.  I stopped recovering when I was off them.  Fatigue increased, muscle weakness, further neurological, hormone imbalances, depression, and general fluy like feeling.  It was like facing lyme decline all over again.  I decided to tough it out because it is often hard to tell when it is herx reaction from bacteria kill off or just decline from illness.  My last blood test confirmed it for me and the doctor.  My body was not handling the drug well and my liver was certainly showing signs of challenge.  I had to stop the drug immediately.

I sat with that information for a while.  It was hard to know whether I was happy or sad about it.  There was a sense of relief that I could stop feeling so crappy.  I had wondered how I would last a year at this rate.  But then I wondered if my last chance to deal with the infection in my heart and head was lost.  But I like to think of it as a chance to regroup.  I need to regain the physical progress that I had made a few months ago.  I retained so much hope at that time.  I want to have that back.

I need to wait a month before I can try anything again.  I need to get my levels back to a healthy place with my blood tests and luckily I have seen a couple of new doctors that have more treatment options to try.  One is a Lyme specialist that has agreed to take me on despite the fact that they were not taking on new patients.  Another is working on a slightly different theory to deal with my remaining symptoms.  I am happy to still have options and very grateful to have som time to regain some health.  My slow deterioration and its similarity to the lyme decline was really wreaking havoc on my mental health, my hope and optimism.  I feel that coming back already.

It has been hard to update this blog partially because I was sick and weak, but also my neurological symptoms were a mess.  I am back to writing a little a day and after a few days, I have an update.  But, I really hope to start sharing more.  I have become part of a few groups and with the new doctors have learned so much more about this disease, health in general and many things we can be doing ourselves through this tough life we live.  Its hard on all of us. So hopefully I can share some simple, effective things we can be doing to make it easier...and trust me, I have tried it all and only plan to share what is tried and true.

So many times in this process I have had setbacks, But each time I seem to find something better as a result.  So I am very convinced that is what is happening now.  I am taking this month to find some balance, regain some health and find new focus for further healing.  But what I have decided to start doing more than looking ahead is to start living now.  So many times in this process and I see it all the time with other lyme patients, we look forward to the next solution, the results of what we are doing or for the Country to finally accept us as part of an epidemic, but none of those things are going to happen soon.  So I am starting to live now.  I want to start living life with the symptoms that exist, find happiness in each day regardless of how it could be perceived and know that no matter what kind of day I am having, it is better than before and better than what someone else might be experiencing.  Just writing that feels good.

So here's to more updates and info coming soon, to health and happiness for everyone and finding good in what may look bad...I'm on my way back.

   

The Anti in Antibiotics

After three years of battling this unknown illness, finally being diagnosed with Chronic Lyme, I was so relieved to not only be validated but to have a course of action to eradicate these "things" that had taken over every part of my body.  I didn't care what it took or how hard it was going to be, I would do it. I just wanted to be better and get on with my life.

The plan was to taper on to the five antibiotics for up to 3 years.  Yes, I know that seems like a lot but after 3 years the bacteria has morphed, developed protective biofilms and moved into all the nooks and crannies in ones system.  At this point you need the different types of antibiotics, you need the high potencies and you need to take them for a long period, just to even stand a chance of killing the Lyme.

People would say to me "my friend got Lyme and they took one antibiotic for a few weeks and are fine".  I heard that a lot and there is a lot of misunderstanding about Lyme vs. Chronic Lyme.  Getting diagnosed with Lyme early (typically within 6 months), usually knowing you were bitten (ironically, I did, so its even more sad that I went three years without diagnosis), or visiting a doctor that is inclined to be cautious with tick bites, often means you will get a short dose of antibiotics.  This can bring the infection under control early and avoid all long term effects that come when undiagnosed.  Not the case for me.

A few weeks into to my antibiotic protocol (4-5 antibiotics up to 3 years), I started to have trouble keeping the meds down.  A medical friend was quite worried about the long term effects of the protocol and started to seek out alternatives for me.  This resulted in me suspending my antibiotic treatment for a 4 month alternative treatment plan involving six modalities (three weeks at a clinic and 3 more months at home).  I found great results physically with this and homeopathic supplements, but still continued to suffer from most of the cognitive issues and some cardiac related ones as well.

While discussing my progress with the doctor that originally diagnosed me she was impressed with how my body was recovering physically.  She suggested I may be a good candidate for a strong antibiotic that well, let's say isn't mainstream, nor available in Canada, of course.  But they are finding great results with is cognitively, if your stomach can handle it.  It is really hard on your system, so it requires an even stricter diet than before and will wear down your system quickly.  As a result, they do what is called pulsing.  You take the antibiotic for 5 days then go off it for 4-7 days, depending on how you recover.  You have to be careful to continue detoxing and keep  things moving in your system.  You take a few new supplements to help with the antibiotics and then some different ones to help you recover on the off days.  I think my count is over 20 supplements right now.

When this was first proposed to me we agreed I would wait until my home treatment protocol (the 6 modalities) was over.  I wanted to know what was better with that treatment and have a better idea of what worked and what improved what. Some people are completely against the idea of using antibiotics and of course it would be great to avoid them...but my desperation to fully recover is too strong.   All of these factors seems a little ironic to me these days, because I have since been in contact with so many more Lyme patients and doctors around the world and if there is one thing I have learned it is this:

It is almost impossible to know what solves Lyme, what helps and what doesnt. Every Lyme patient is clawing and grasping as every possible solution to improve their situation even a minuscule amount. Some days you are certain something is working and could be convinced to give it up the next.  You can never be sure what is helping because you get a little bit better then worse, then better again.  You only know that you have come miles when you look back to months before.  And realize you have miles still to go. So you keep clawing and grasping taking on everything someone brings your way.

That I will continue to do, I am striving for full recovery and will stop at nothing less.

So I have been on the new meds for almost a month now.  The first week wore me out but didn't seems so bad.  I didn't realize that even with the pulsing (break in between) each week may increase in intensity.  My second week on, brought symptoms and herxes like I have never experienced before.    Intense hormonal reactions ( I won't go into detail - but wow), my eyesight, brain fog (crazy), loss of coordination, trouble sleeping, extreme fatigue and sick stomach.  I was able to see the naturopathic doctor that helped me balance things out a bit and decrease the reactions.  But at the same time she reminded me what a great sign this was.  It meant the drugs were working.  They were attaching the bacteria in places I was having trouble seeing any improvements.  And that is so motivating to me.  We have found a way to get at it where we haven't been able to before.  The hidden bastards have been found and they are not winning hide and seek anymore.

It strikes me that the next year is going to be quite a roller coaster ride but for the first time since being infected I have some semblance of when I might be sick and when I might have a few good days.  That feels like living again!

I was also told about a cream that contains a protein that Lyme patients lose in the process that iscrucial to good immune system health.  I am trying that one too.  I have spoken with two doctors in Toronto that were able to share some good further treatment options, and have become part of a nationwide group that has a doctor providing tips and direction to patients.  It is also a group that other doctors are encouraged to join to hear stories (good and bad).  They have created a massive drop box library of Lyme information.  I was originally encouraged to avoid Lyme groups because of the lack of credibility of information and instability of the people posting - but one doctor (who has also published a book after helping her some through Lyme) told me this one was different.  What an incredible resource.  I can't wait to share with you the one graphic I found that would have changed this whole thing for me...another blog.

I also have three pending doctors appointments, with doctors I have not seen yet.  One deals with cell  health, another is a Lyme specialist that was not taking on more patients for over a year due to Lyme challenges and the last is a new doctor covering for my family doctor (not the one that dismissed me).  So I will let you know what I find out.

I find it interesting to think back to the four months I was on the Utah protocol.  I was so eager to get to the end. Yet, when the end was near, I started to panic what would happen when I got there and not all was better.  I felt like all would be lost.  But I have since realized we can keep working on this, many little options are out there.  There is no one big solution.  It is slowly, over time building up your system to fight, while killing off the bacteria a little at a time.  I am so grateful for the Utah protocol because I feel it helped me recover physically with some of the best results I have seen in Lyme patients.  My physical mobility is so important to me for my mental health. I love to move and love to get outside, I can't imagine being able to recover without being able to do those two things.  So even when I am really sick, I still have a smile on my face.


Side note: Sorry for the lack of updates recently.  The antibiotics just don't allow me to think and write clearly.  I know you may find some of the details above a little confusing.  But thanks for understanding, it just feels really good to share with all of you again. 

Lesson in Lyme #1 - Stress

Shortly after I arrived at the clinic in Utah, to begin my treatments fighting Lyme disease, I was asked a question that took me a little by surprise.  It was this:

"What was the stressful event that preceded or accompanied the onset of your major symptoms?"

My first reaction was, "I didn't have a stressful event".  Then I thought about it some more and realized there were a couple of things actually.  Not a big, one-time event but more like stressful situations that lasted months.  You know those situations that you think you will just manage for the time being because a solution is more complicated to implement than just dealing with it.  Man, do I ever have a different perspective on that now.

The fact of the matter is that the one consistency the clinic was finding with Lyme patients was the gradual decline was instigated or intensified with stress.

I suppose it makes sense that our immune systems are compromised with stress.  We all know that and have heard that, but it's really hard to associate when you are stressed and you cannot feel your immune system wearing down.  So I think we often forget or find it hard to believe at times.

Many researchers and some doctors feel we should have the ability to fight Lyme disease with our own body.  But the truth is, we are not healthy enough.  Our diets are not rich enough in vitamins and minerals, our lifestyles wear our system down.  Our activities don't make us strong enough and our habits wear out every system we have. We dont support our immune system in such a way that it can help us fight the big fight when it comes around.  So we can't fight things like Lyme and eventually, it gets the best of us. Stress is one of the biggest factors.

In my quest for health and fitness and while training others I started to realize that stressful periods actually set progress backwards not forward.  As a younger person I used to feel fueled by stress, I thought that gave me motivation and drive.  And it does for a while until you survive on that motivation too long and deplete your lymphatic system.  You see when we thrive on stress, we do so because adrenaline is released into our body. It's a jump, a fuel and it gives us that extra push.  But when we continue to depend on that, even subconsciously, we utilize a system that was only meant to support us in emergencies.  We wear it down, we drain it and when we really need it nothing is there to help.  That's was working with stress will do to you.  So if you are one of those people that feels they do better under stressful situations, use caution, you may be falling into the same trap I did.

Now in recovery, I am in what I consider a very vulnerable state.  Just simply existing wears down my body. I am trying to rejuvenate an immune system that was basically shut down with such a fine amount of energy that I can see the effects of everything I do or dont do, everything I experience and every choice I make.  I feel like a true test case for everything good and bad for our health.  And this is what I know for sure.

THOUGHTS
Every thought adds or takes away energy from your body.  So a negative thought tells your body you are in a stressful period and to prepare to protect itself.  Its like telling it to put all of its energy in preparing for war.  And what a waste of energy that thought is if there is truly nothing to protect yourself from.  If it is only your perception of something and not the truth, what a waste of resources for a nonexistent situation.  You just put your body into a false stress.  And how many times do we really need to prepare for war?!

FEELINGS
Every feeling we have takes away or adds energy.  And feelings are much harder to manage than thoughts. They are reactions to many years of experience, to traumas and memories too deep to erase.  But they can be changed over time.  You can't ignore feelings, they won't go away.  You can't work past them, they will keep rising to the top.  So because I have had to work very hard to retain every ounce of energy I have, I have found only one solution to overcoming emotions and feelings that deplete and that is to replace them with ones that fuel us, with these few steps:

a) You have to feel the feeling - notice everything it does to you, what hurts, what feels awful and all that it does.
b) You have to be truthful about what it is - negative feelings are often ugly and it is embarrassing to admit to yourself what it really is, but you must in order to move on.  So if it's jealousy, hate, embarrassment, judgment, call it what it is.  Try to sort out where it came from.
c) Replace your feeling with the thought and feeling you would prefer to have.  This one takes practice and reprogramming.  It doesn't happen overnight.  It's kind of a "fake it till you make it" kind of practice...but with time will be a more conscious reaction. It's worth the effort.

Often times people try to do "c" without doing "a" and "b".  Save yourself the frustration.  do "a" and "b" because that is your only chance to really move on.

ACTIONS:
Often times we actually put ourselves in stressful situations, even when we are not intending too.  We get caught up in the drama, we put too much on ourselves, or we simply don't take good enough care of ourselves to deal with stress.   And when the big stresses of life hit, we don't expect ourselves to handle it, but what if we took better care of ourselves so that when the big stresses hit (the real dramas of life) that we were able to handle them much better because we weren't so depleted?  Now, that is a concept, I have had to learn the hard way.

As I was getting sicker with Lyme (and didn't know it was Lyme) I knew I was not handling stress well.  I tried to avoid stressful situations but found that very hard.  Old habits die hard too.  So, I kept feeling more depleted and finding that I handled less and less situations with calm and confidence, like I once felt I could.  Now I realize my efforts to avoid stress were feeble at best.  Falling into the stress trap is often the easy way because it is how we live these days.  It is what we know best.

In recovery, I am able to really feel what each little thing does to me.  An unpleasant email,  discontented phone messages, lack of assistance, life challenges, they all play a small but significant role in increasing your stress level and depleting your resources.  I can see how ready one small negative message can set back my recovery days.  I see how it instantly depletes energy, how it affects my heart rate, my oxygen intake and how long it takes to return.  It's not worth it.  Stress does far more damage than we realize.  It's always working away at depleting and tearing down our system.  You can't see it, you may not feel it, but it's doing much more damage than we realize.  You can't let it.

Here are some things that are impossible if you deal with significant or chronic stress:
- long lasting weight loss
- good vitamin and mineral absorption
- healing of any kind
- maintain an immune system to support you
- maintain or build energy
- maintain or build mental health
- slow down the aging process
- ability to manage real stress well

What if we managed the little stresses so that our body could thrive?  What if we constantly worked on habits that kept stress under control so that when we really had stress we could cope?  What if we learned to do daily practices that boosted our system, not depleted.

Think about all the time in your day you deal with stress, even the smallest stresses.  Do you do the same amount of work to decrease your stress?  Yes, it does take that to much effort to counteract our stress.  So you certainly don't want to create it where it isn't.  You certainly don't want to make your body think it needs to deal with stress when it doesn't.  But even better than that you want to treat yourself with genuine empathy, be kind, supportive and help it rebuild, so that you can always deal.  Living with even a mild undertone of constant stress is no way to live.  Its worth your efforts to turn that around.  You deserve that.