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

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  ...

Sunday, June 26, 2016

Recovering from Lyme - Is it possible?

While going through Lyme treatments, I was told of a man that was always very vague when he provided updates on his recovery at home. I now understand why, after I had a phone check in early this week with staff at the clinic where I reported many, many days of feeling great.  My energy may have been low and I had to nap a lot but I was pretty sure that it was because I was doing much more than I had been able to in months.  However, shortly after reporting this good news, I was bedridden with a couple of the lowest days in my recovery.  It was all I could do to try to do my treatments; many of which were not able to be completed.

Regardless of how many times the clinic warned me this would happen, it still caught me by surprise.  I think I was most shocked by how low it got.  I think I assumed as I got better, the bad days would be in proportion.  I was wrong.  I regretted providing such a great report and wondered what the real cause was.  I figure it is one of three things:

Setback - I may have tried to do too much when I was feeling better.  Trust me, I was being gentle with myself  and tried to add little bits at a time.  But it is possible I am still underestimating how little I can do.

Bad days - maybe the bad days can be this bad?  It is possible that as your good days improve, your bad days can still get as low as they always have.  It's a cycle your body has to go through; building its immune system, fighting the Lyme, then dealing with the die-off and repeat.  I suppose your body should never feel good when dealing with the die-off and will always be at a low when it is doing so.  It has to be a good thing that your body never does well with that.

Herxes - I have some amazing people in my life that went to a lot of trouble to purchase and have shipped one of the machines from the FAR Clinic.  Of course, it happens to be the one I disliked the most lol.  But they were told it was the one that would speed up my recovery the most.  And as it turns out sometimes our bodies have herxes which are reactions to the die off and can be managed by how hard we push our recovery, how intensely we increase the supplements and how well we take care of ourselves through reovery.  So it is possible that this machine is so effective that after two days of using it, it boosted my recovery that the intensity of the die-off was more than I was ready for.

No matter what the reasoning, they are all good signs.  It just was a shock when my motivation was at an all-time high with how my recovery was going.  It reminded me of symptoms, I really had forgotten and gave me a little slap in the face, that I cannot get carried away with feeling good, I am still recovering.  This is hard to remember when you feel better than you have in years. And if any of this sounds like I am feeling bad for myself, I am most definitely not.  I am mostly recording this for anyone else who may go through this.  Everyone tried to prepare me for the lows, and yet, it really got me down in more ways than one.

I also know I feel lucky, because in the short time I have been dealing with this, the people that I have met that have dealt with Lyme in many different ways, are not always seeing success as we imagine they should.  Some have given up on the process or wanted to.  Others have given the process all they had but still struggle with many symptoms to this day.  And some who thought they were healed found the returning symptoms too much to bare and have resorted to many drastic solutions to resolve.  I am extremely saddened by all of this.  These are people who have helped or motivated me.

I believe there are mild symptoms that may remain for me and I am okay with that.  I haven't seen much change in them since the beginning.  So, I have accepted they may stay, but still, work to alleviate.

- Mild paralysis - on my left side.  It only affects certain movements with left arm and I think possibly my hip flexor.  I can still do most things.  You just may not want me to carry your grandmother's fine china with my left hand.  lol

- Anxiety - hard to associate it with much.  I think could be related to when my body tires.  I know it is most prevalent when I have chest tightness and trouble breathing.  Makes sense that it is mostly physiological.  It seems to have lessened as my chest/heart symptoms have improved.  These symptoms come and go, so it is hard to know if they are working their way out or if they may always present themselves now and then.

- Cognition - I know this is related to when my body tires. So I think I still have more improving to do as my energy improves.  But I assume I will always need to manage it if I overdue things, get stressed or tired, in the future.  It just comes in the form of not being able to absorb or compute certain things going on around me or the short term memory thing.  My memory has come a long way.  It just fails me now and then.  I think I have to assume it will always be bad and then it can be a nice surprise when it isn't.

What comforts me most is that the route I decided to take at the FAR clinic is far from over.  I still have two more months of improving to do with home treatments.  I also have the ability to do what many patients of the clinic are doing and that is to continue the treatments at regular intervals such as, once a week (after the two months).  It is a small sacrifice to make to ensure that the headway I have gained can be maintained.  But certainty is not something any Lyme patients have these days.  Really every process is a trial.  No treatment has proven to be 100%.  And patients using many different remedies who thought they were cured, are finding out otherwise.

I believe that the FAR clinic was most definitely the best option for me and will give me the best life moving forward.  But the clinic is not for everyone, nor is it possible for everyone.  I believe this is a sad realization for Lyme patients, especially when it is something that could have easily been cured with early diagnosis.  I don't see any movement governmentally, past the fact that "they are looking into it".  It's taking too long and politics are overruling.  The numbers are increasing by the day and that is with multiple misdiagnosis still happening.

Two things need to happen and they need to happen yesterday:

1) The medical profession needs to listen to the experts on Lyme because there are many consistencies that will help with diagnosis.  The experts are the New York Dr., Clinics doing research like the FAR clinic and the Lyme patients.  No one is collecting and collaborating with these people enough to look at the 50+ symptoms that can show Lyme just in their sheer number or the very simple consistencies that are found; body temp, low O2 with mild exertion, movement from one major body system to another, the fail and recovery cycle, pain locations...and the list goes on.  Experts in the field have described these to me to a perfect degree of what I experienced.  Why is this information not be shared immediately with medical professionals everywhere???

2) Immediate treatment is being postponed or not being made available to people even showing a bullseye rash after a bite or only those showing the rash.  I never had a rash, or at least that I noticed. No one feels the right to demand treatment, but we need to start.

- The tick can be tested if there are concerns.  But from the tests that were done in the four large parks that I manage: all showed many different strains of Lyme and a multitude of infected ticks.  Those parks are hundreds of kilometres apart.  Let's just assume if it's a tick -it's infected!

- I have never been a fan of antibiotics, but is a short course of antibiotics that may prove unnecessary not a far lesser risk than finding out three years down the road that it's too late or tens of thousands to fix?

- Doctors in Ontario are being coincidentally investigated and charged with something unrelated after treating patients for Lyme.  So much so they have stopped taking Lyme patients.  Stop it, stop the madness.  These doctors are trying to stop an epidemic.  What the hell is wrong with our system that they are investigating and charging good professionals because they are putting their patient's health first.  I feel mad even stating this, but this is what is happening.   If you don't believe me, you should know that I still do not have a medical doctor and my efforts still continue with my clinic.

- There are naturpoathic clinics that can help early onset Lyme.  If people are uncomfortable with antibiotics then there are more natural paths to take, they just need the assistance of the medical profession to diagnose.  Because if they go through all the specialists and tests like I did before pursuing other options, it can be too late to effectively treat this way.  We need medical professionals to look for Lyme first.  It can't hurt.

- Screw the blood tests.  They don't prove anything one way or the other.  I was tested three times.  One test finally showed the presence of Lyme but not at a degree high enough to be considered "positive" for Lyme.  The experts now know that the tests are only able to detect 1-3 (Canada is 1) of 10x that in possible lyme strains.  They also know that the tests are proving ineffective.  The longer a patient has Lyme the less likely the test is going to pick it up because of how it develops.  Many States have decided the only way to diagnose Lyme is by clinical diagnosis, not a blood test.  People need to know this.

I am no medical expert but these seem like simple steps that can be happening NOW, while they are "looking into it".  Have politics overtaken us so much that they rule before the wellbeing of human kind?  I guess so because there are believed to be hundreds of thousands going through a similar struggle as me and I see absolutely nothing happening to help them.  I see simple, harmless solutions not available to North Americans because they are not FDA approved?  But they are harmless.  Patients need to be able to make informed decisions for themselves, without putting another doctor's license on the line.  In many cases, our only option is a mentally and physically crippling situation, if not death.  How many other options can be worse than that?  Even when begging a Lyme patient is not able to get treatment to avoid that in a very progressive country.  What the hell is wrong with us.

I promised to write about my experience but swore I would not get political.  I guess that is not the case anymore.  This is no longer about me.  It is estimated in two years, 80% of our population will be infected with Lyme or develop into Chronic Lyme. This is about our friends and family...our children.  This is a fight that belongs to all of us.  I don't want to see the same games as Cancer happen here.  But unlike Cancer the solutions are simple.  It will take the lawmakers to quit worrying about saving their own ass and worry about saving the ass of a Lyme patient.  I have no idea what it takes for that to happen.  Once again, I feel helpless.

Wednesday, June 22, 2016

Travel Bug to Tick Bite: the fateful day of infection

I know the day because it was a clear day of tick infestation with over 7 ticks presenting themselves at the end of a long hike.  So how could it be that Lyme would go undiscovered for three years?  Shockingly easily, I am afraid to admit.  A hard lesson to learn.

I had decided to do a 300km hike through along the Rideau Trail from Kingston to Ottawa.  It was a mix of urban trails at either end with more unmanaged wilderness trails for sections in the middle.  I had heard of others doing it in over two weeks. I decided I didn't have that much time and always like to push myself, so I decided for one week.  This would require hiking 40-55km/day with a 40-50 lbs backpack.  I planned the trip so distances were shorter on the sections that were more rugged; with a lot of climbing.

People often asked me why I wanted to do it.  I had been thinking about it for a few years.  The reasons accumulated to the point that I really had no was the obvious thing to do.
- I had torn my MCL and meniscus so had many months of recovery where I could run, so I did a lot of walking and hiking
- I have always been a travel bug but am a big believer we should explore our native areas as well as distant lands
- I manage some of the parks that this trail travels through, I felt it was important to get to know it intimately
- I had a friend who had lost a lung to cancer and thought she could join me in training of the walk
- But most of all: I was struggling to get over the loss of my father three years earlier.  It felt like losing him was crippling me living my life.  I had decided that if I spent 7 days, tirelessly walking by myself, alone in the bush, I would be forced to face my sadness.  I could not longer ignore it, stay busy and avoid it.  I would be forced to feel it and figure out how to deal with it, or so I thought.

In my final weeks of preparation, a few friends decided they would join at points along the way. So I began the walk on Father's Day, seemed appropriate but was really picked to be after black-fly season, before deer flies, not too hot and not hunting season.  There really are not a lot of options left after you factor in these considerations.  Three of us walked that first day in torrential rains, cold weather and some directional mishaps.  At one point I have to travel ahead because of a hip injury and a foot injury occurred by the other two.  They were picked up a very loyal friend who always seems to know the right time to swoop in and save the day.

The next day I hiked on by myself.  I had enjoyed the company but knew if this challenge was to really serve its purpose, I also needed the challenge of doing it on my own.  I headed off the second day, knowing this would be the toughest section of the trail.  But there was a freedom, being in the middle of nowhere all by myself, that really motivated me.  I walked with a smile on my face and a restful heart because somehow this felt like what I was supposed to do and was where I was supposed to be.  For a few kilometres in Frontenac Provincial Park, I walked on well established trails, with a true peace of mind.  Until later that day conditions changed, the conditions around me and the conditions within.  The trail was flooded in most parts, so badly that often there was no way around it.  And if I did get around it, it was through thick bushwalking which I knew was going to put me back hours and energy.  So after many hours, I decided to walk through it, which proved to be a very fateful decision.

It took me over 13 hours of solid walking that day (I remember stopping once, for 5 min.) to make my destination.  After getting lost the final section required me to cross a river, which under normal circumstances would have been a stream with planks to cross, but I could see the planks downstream and had no choice but to cross water up to my waist.  The last few kilometres, were the longest of my life.  It was triumphant to reach the campsite.  I had promised my husband to stay at an established campsite when I was alone vs. just setting up camp along the way, just for safety and security.  I believe that was mostly to avoid bears. I had walked down to register, to a less than favourable reception.  I am not sure why?  They were listed as a campsite for this trail.  I started to wonder if maybe the bears would have been friendlier.  I started to set up camp at a spot near the entrance, took off my shoes to soon realize not only were they very swollen, the wetness had started to make many parts of my feet raw.

My husband stopped by to replenish supplies and after he left, what was to be a nice, quiet, restful evening turned into anything but.  I ate my supper and then settled into my sleeping bag to a very unrestful feeling.  After trying to fight the feeling for a bit, I decided to get up.  I opened my sleeping bag to several ticks running around.  As you can imagine, that was enough to explain the restless feeling and I decided to head for a shower and shake out my stuff.  When I got to the shower it was dusk and I realized there were no lights.  So with the light of a flashlight, I examined myself to see over 5 ticks just on my back.  Most of them were easily swiped off, except for one.  It was directly in that spot between your shoulder blades that it is very hard to get to on your own, especially while trying to hold a flashlight up to a mirror for light.  I worked away and worked away at it. I felt relieved when it was removed because it didn't seem engorged and I knew it wasn't attached for more than the vital 24hour period.  So it was impossible for the bacteria to have entered my body, right?  Wrong.

Working in parks management for over two decades the dangers of the outdoors were well known to me and I felt quite equipped to deal with each one.  The organization I work for has always invited in the experts to teach on things such as ticks and related safety issues.  I knew what to do.  I just didn't expect to be in the middle of nowhere, in the dark, late a night, tackling a tick in the only square inch on my body I could not reach or see easily.  But I had thought I did the right thing. If a tick has not been attached for more than 24 hours, it will not be completely engorged from feeding on you.  And it is when it is completely engorged that it will start to release the bacteria back into what it is feeding on.  So I was safe; I had checked myself carefully for all ticks, I removed the only one attached within 24 hours, I made sure it was all out (head included).  I went to bed and would have slept restfully except for the raccoons that managed to get most of my food out of the small drink hose hole in my backpack.  I ended up resorting to sleeping in a small cocoon tent with a 45lbs back pack on top of me...what a night. Yet, I felt content knowing all hazards were averted.

The next day, I thought to myself, there is power in knowing I was bitten by a tick.  At least I know I was bitten by a tick if symptoms start to present themselves.  Many Lyme sufferers don't have that luxury.  So I considered myself lucky that I knew.  In the end there proved to be some very hard lessons on Lyme in the experience, an experience that went from a one week adventure caused by a travel bug to a three-year battle caused by a tick bite.

What took me three years to learn are:
-Without delicate removal of a tick, you run the risk of squeezing bacteria into yourself even if it has only been attached for a short time
- Immediate Lyme symptoms can also mimic many other things such as those expected from the infections I had in my feet.
- Symptoms can subside with a short course of antibiotics (such as was prescribed for the infection in my feet) but only temporarily.  This makes it difficult for you to associate returning symptoms to the tick bite.
- After many months Lyme symptoms are not just the typical flu-like symptoms that they talk about.  It feels more like you catch every infection and virus going.  So the symptoms change all the time. Again, making it hard to relate the illness back to the bite.
- After it becomes Chronic Lyme (6 or more months), the symptoms are not even close to what is described on websites and information sheets.  They become the types of symptoms you are sent to specialists for and they add up, making your list of issues feel endless.
- I also had no idea that the blood test for Lyme was so inadequate.  I was tested for Lyme 3 times and it was always negative.  This gave me confidence that it could not be Lyme.  I have since learned that the US Lyme tests are drastically inadequate, but the Canadian one is even worse.  False confidence is all it is.
- Also the longer you have Lyme the less likely the blood test will pick it up.  So a test that is already brutal can only get worse.  I am told it has something to do with how the proteins bind together and therefore are not picked up in the blood test.
- Being covered up in clothing is not as good of a preventive measure as we like to think.  I had thick running tights on that day, with two long sleeve shirts, a rain jacket and a 45lbs backpack on me.  All of the ticks were under all of that and I sometimes wonder if I had not worn all of those layers, I may have noticed them earlier, or easier or when I had help...who's to know.

The only thing I reasonably could do differently in reflection is to have asked someone to help me remove the tick with tweezers.   That simple task would have changed the course of my last three years.  But many factors that day led to me believeing I did not need to do that.  Rather ironic that an adventure where I was trying to prove my strength and independence, would require me to be more vulnerable, need more help, assistance, and support, than I could have ever imagined.  I actually thought I had learned that on the hike.  I had friends join me and support me in ways that touched me deeply.  I remember thinking after my hike, maybe life is not about being able to do it on our own?  Maybe we are meant to need one another now and then?  Now after three years of misdiagnoses, mental and physical decline and radical measures to save myself, I have clearly answered those questions. Doing this on my own, was never an option.  I now believe life is about asking for help when needed and offering it when you can.  I plan to do the latter in so many ways when I am well again.

I have been supported, blessed and loved beyond belief.

Tuesday, June 14, 2016

A Corner Turned - Recovering From Lyme

I have great news to report!  As to be expected, the second week after treatment, good days are possible and they happened.  I have been waiting a long time to feel like I was "turning a corner" and I think I can safely say, "I have turned a corner".  Parts of my days I feel much more myself and am confident this route was the right one for me.  Secretly, you start to doubt yourself on the bad days, when the treatments make you feel worse than the disease and when the road seems to go on forever.  But when the good days happen finally, it is impossible to deny.

I know this is really just the start and the good days will be come more and more as the weeks go on.  I learned a hard lesson though the past few days.  It is really easy to fool yourself about how good you feel and easy to set yourself back by doing too much.  The doctor in New York warned me that until you were 70% better, you would set your recovery back 30% every time you over did it.  Well, I did overdo it a few times, because it is hard to accept how little I can still do but it feels so damn good to feel myself for a few hours.  I have always thought I only learned by doing and always seem to do thing the why stop now.  I now just focus on my daily treatments, if some days that is all I can get done...the so it shall be.  

I am realizing that it actually takes most of my day just to do my treatments.  Motivation and energy are low each day to push yourself physically to do the same thing you did yesterday, without anyone pushing you along.  It makes me reflect on what the wellness trainer Elanda did for me in Utah.  She is so good at her job that I just had to show up, no matter how I felt, I knew she would talk me through it.  She did every day and always seemed to know the right thing to say.  I feel very grateful to her, for pushing me to finish, and finish well, through the toughest mental and physical challenge of my life.  Its always an inspiring experience to come across people who love what they do and do it well...I feel like I have said that before lol.

I also have reflected a lot on the past few years, when things were at their worst and I realized something pretty significant for me; Even on a bad day now, I am in a very good place.  No matter the number or magnitude of any setback, I am so much stronger, safer, supported and blessed, than any day in the last few years.  I have accomplished so much, thanks to the people around me that no bad day can really be that bad.  I finally have professionals that agree there was a major problem.  I was treated with a research based system that clearly moved me months, if not years ahead in my recovery.  I have been equipped to strengthen and support my body so that it can always best deal with this disease and feel like the most loved human being on the face of this earth.  No bad days can take that away.  That my friends, is the quintessential example of empowerment.

So although there are ups and down ahead for the next few months, I feel very privileged to have ups and down.  All of what is going on is a sign of recovery, a sign of improvement and proof I am on the right path.  No matter how bad a day it is, there is always good in every day. I don't say that theoretically.  I mean it literally.  My worst days have so much more good, promise and hope than many of the days in my preceding years.  I almost can't remember how disabling this illness felt or how it wore away at everything I believed in myself.  Each time it took more of my physical abilities away, I decided it would not stop me, until it worked away away my head and affected the simple tasks we take for granted.  I now know, I never have to go back there.  I can just keep working and working until each last symptom is gone for good.  I have the power.

It does make me worry about those that are knowingly and unknowingly battle with this or another disease.  I don't know the answer to those challenges. But, if I was asked for one piece of advice it would be this; make sure you are doing everything, and I mean everything in your power to do all you can to help, build and heal yourself.  Don't stop seeking help, it comes in the strangest ways.  At the end of the day you know yourself better than anyone and if you keep looking you will find the help you need, just make sure it starts with you.

I can now confidently say, I am on the road to recovery.  I have waited awhile to say that and mean it.  Despite the symptoms and challenges that still exist, I know I am on the right path to recovery and that can override anything.  There have been so many people I want to thank along this road, but it would take longer than the recovery.  And as much sadness is still out in the world, I cannot let it cloud the amazing support and love around me. People have the ability to change the world, because what all of you have done in a short while has changed my life.

Friday, June 10, 2016

Confession #1 of a Lyme patient - Laziness

I never wanted to be lazy.  It was certainly ingrained in me growing up that laziness was one of the worst character flaws.  I remember as a teenager never wanting to be called lazy, even though I felt it at times.  I think sometimes I have taken that fear to a whole new level.  I don't sit still well, I hate being bored, I love exercise and stuff like meditation, well that's torture.  Yet at he same time, I didnt learn when to rest.  I would only stop when I got sick.  A rather unhealthy way to be in todays day and time.

I think thats why I started to get into more endurance type sports.  It was the happy medium between the two.  You worked hard but had to rest to make sure you could get up and do it again the next day.  I didn't feel guilty resting, it had a purpose.  I felt accomplished after a hard training regime and could rest with satisfaction.  It was like I had found my happy place.

So when Lyme started to take over my body and I had no idea, it was making my worst fears become true.  At first I could tell myself that training is just becoming a lot so I need more rest.  Then training started to suffer.  I couldn't go as far, I had to take more breaks, bad training day,s skipped training days, to finally calling to be picked up...not in my nature.  I still managed to find reasons why it happened and tried again the next day.  The race happened, it wasn't fast, but I did finish the half ironman.  I was sure a good recovery would bring me around. It didn't.

I spent months trying to softly move back into a fitness regime.  I would get sick, chest pains, fainting spells, breathing problems and the list goes on.  All little things on their own I would try to work through.  But there was something every day.  No amount of rest made me recover.  I never had a good day, where I felt like exercising or things would just go well.  You know you have bad days in training, it happens to everyone, but now every training day is a bad day.  You keep a lot of the details to yourself because you are disgusted by the fact that you cannot motivate yourself to work through this low period.  You know its mental, so get over it, push through and move on.  But it never happens.

I started sleeping more, even in a parked car.  I rushed out of bed when someone came home.  To get a household job done I would do a few minutes, rest, do a few more minutes, then rest...pathetic in my mind.  The smallest job took hours, but no one would have to know.  I would go for a walk and call it a run.  I begged myself to just do 10 minutes a day and I would ask no more.  I couldn't walk outside anymore because I was afraid I would go too far and not be able to walk back.  And then finally, a 10 minute walk on a treadmill became too much.  How embarrassing.  I had finally let fitness fail so badly, I couldn't accomplish the one simple thing that I swear everyone can do despite their abilities.

I said to doctors, I swam 2km, biked, 97km and ran 21km in less than 7 hours, two years ago.  Now, I am lucky if I can make 5 minutes slowly walking on the treadmill (and some days I can't do that).  When the response is, "we can't find anything, you are very healthy", there is only one're lazy.  Doctors didn't say that last part to me, I said it enough.  Lazy to me meant, you are not strong willed, determined, motivated and able.

Three years before I had talked myself through 300 km of rough trails with 40 pounds on my back, camping, by myself, with raw, infected feet. Two years before, I talked my self through a 121 km race with a lot of health issues already active.  And now I cannot make myself go an extra 5 minutes on the treadmill just so I can keep my promise to myself.  I said all I knew to say, every motivational trick in the book, mind or matter you know...And I couldn't do it.  I was lazy.

One of my very worst fears, realized.  I was lazy.

Looking back now, it seems ridiculous that was my conclusion.  I knew better.  My advise would have been different to anyone else.  But Lyme is such a silent battle that slowly you tear away at your rationale thinking.  Reason by reason, excuse by excuse is taken away by test results that show how healthy you are. So eventually, rationale thinking is a waste of time, its wrong every time.  So all you are left with are your worst fears.  You're lazy.

The blessing in this illness, that saved me, is eventually it becomes more physical, so you are unable to stand in the morning.  You use the walls to support your walking until things become limber enough to work on their own.  I lost ability to control items held on my left side.  Some start to use a cane and others have to resort to a wheelchair.  I am very lucky that I got just bad enough to convince me there was something more. A part of me was relieved to find out it was Chronic Lyme because it meant I wasn't lazy.

But 3 years of constant thoughts are hard to erase.  You move slowing in recovery, things take longer, you have trouble focussing and its all just harder.  It reminds me of my dad in his last month before Cancer took him away.  Every day he focussed on what small things he could accomplish.  It was just in his nature. He told me even in his weakest days, that if he can just get a few things done, he felt the day had purpose.  I feel much the same way, yet I am lucky to know the end is in sight, things are getting better with time and I will recover.  So until then, I will do what I can do to heal, in his honour, knowing that I AM NOT LAZY!

Thursday, June 9, 2016

A Week Home - Learning from Lyme Continues

They told it would be hard the week after I was home.  They said the travel would wear me out and set me back.  The reminded me that the treatments are hard when life gets in the way.  They said most people are sicker than ever when they leave.  So why on earth did I think I would be any different? I have to believe its my pigheaded nature.  I keep thinking I am above the norm and will be different than the rest.  Or I can choose to believe I have become an eternal optimistic and am determined to believe the best...even when the worst is happening.

In short, its been a hard week.  The treatments haven't gone close to as well as they did in Utah.  One day I was so weak and tired, I was not able to do them at all.  I never imagined that would happen to me.  So I am having to regroup, reassess what I can do in a day (which is shockingly limited and hard for me to admit).  But I made a vow to myself to take care of me first (after 42 years) and I have to keep that vow.  My how I fell off that horse easily.

Despite all of this I have really great news to share.  I went to see a local Lyme Specialist who is a Naturopathic Doctor, but is willing to follow my recovery and work with the FAR Clinic treatments.  And here is the really good news: she also treats with the same supplements the Doctor in NY does (not the antibiotics but you may recall I was also on 12 supplements while on antibiotics).  So we discussed all the ones I was on and she re-prescribed a few that will help with my heart (anxiety) and head (cognitive) symptoms.  She also uses one of the treatments FAR does, the Pulse Electromagnetic frequency (which is the only treatment I can't do at home).  So this gives me much comfort until I decide what to do medically.  Oh and surprise, surprise she wanted to warn me that I will experience Herxes (detox reactions) going back on the supplements...oh and I am going to feel worse before I feel better.  Oh and when that happens it is all good new, because it means its working.  Have we heard that before????  This excitement about feeling shitty is wearing!

So now for the bad news again.  She said research is showing that our country could have up to 80% of the population battling lyme by 2018. How scary is that?  We talked a lot about why and she speaks along the same lines as the FAR clinic in that our immune systems are weaker than they have ever been and unless we do something to improve them, many of us will struggle.  Research has always listed food and fitness as vital to our immune systems.  But the issues are deeper than we think.

So here is a quick summary of what I have gathered as what it will take for us to start to make a difference for ourselves:

1) Movement: we need to move and be active in certain ways. The FAR clinic really showed me this.  As active as I was, I wasn't doing the necessary things, to boost my enzyme capabilities, to drain and recharge my lymphatic systems, to reserve energy when needed, to detox and remove bad bacteria - all of which can be done with the right exercises and activity.  BUT it also has to be daily activity.  I have been saying that for years in my programs, but am even more emphatic than ever that it is the only way.

2) Food: What we eat is killing us and this is a discussion and debate that could go on for ever.  I don't want to get into the fine details of food production and consumption.  Here is a simple fact - we blame producers all the time for how and what they do to our food, but the point of the matter is, we do not eat the right foods for our health regardless of how they are made. So lets quit worrying about what is out of our control and take the first step to doing well what is in our control.

- If we are not eating over half of our daily intake as vegetable and many of those raw, then we have not managed to accomplish the first simple thing we can do for ourselves.  Lets start there.

- Refined sugar is wreaking havoc in our bodies more than we will ever know.  It feeds unhealthy cells, it builds yeast that hides all of our infections, it creates immense imbalances in many of our bodily functions, and it build dependency and cravings that are stronger than drugs. Basically, refined sugar plays a role in every single thing that could go wrong with us.  And lets not go to sugar replacements...that is a chemical...not a food.


3) WIFI - especially at night.  Remember the FAR clinic said that deep sleep is necessary for healing and repair?  And remember they said that there is some healing the body needs that only deep sleep can help with?  Well, your wifi on at night is in impeding this.  You body feels the waves sent out by your wifi while it is sleeping.  Not only is it dealing with it but it is not allowing the body to fully relax, repair and heal.  When I found this out, I instantly went to the store and bought a timer.  It shuts our wifi off at 10 and turns it back on at 6.  How simple is that?

I am quickly realizing that what I have implemented in my health and fitness challenges over the years are vital to restoring our immune systems.  What I didn't realize is how vital some of these things are, how we must do them daily and how we can't risk them not being the biggest priority in our lives.  I plan to share more over the next few weeks.

I have three more months to stick by this program intensely.  Then some of it will remain as a daily practice and some can move to weekly and monthly.  I quickly learned this week why travelling to Utah was vital.  Not only were the treatments intensive to give me the best kick start at beating this, but life and healing don't go very well together.  I am not able to do all the things I wanted and keep up treatments and healing.  Its too much and clearly I still have a battle ahead.  So life, is just going to be on hold a little longer.

I will continue to share my journey, it helps me mentally accept all that is going on and be more patient with the process and myself.  But most of all, I hope something in here helps each of you avoid this or similar problems.  We have a potential epidemic in our future and the good news is there is a lot we can do to help ourselves.

Saturday, June 4, 2016

The Far Clinic in Pictures

Rod explaining the science behind
the enzyme training (6 days a week)
Getting ready to do the sprint portion of the
enzyme training (3x20sec sprints)
High intensity - low endurance (only option for lyme patients)
Oxygen after every sprint, while monitoring
heart rate and oxygen levels
Clinic Hyperthermy - 102-103F body heat,
oxygen, PEMF bed (making the temp act like 114F)
to kill bad cells not the good ones 

Oxygen therapy and red face after hyperthermy
Pules electromagnetic therapy bed - Bemer frequency
(effective for affecting lyme bacteria cells)

Clinic Team in front of Health Pod (Nasa Frequency)
up to 2 x 10 minutes standing in pod.
G force machine to left, up to 2 x10 minutes mainly to
help drain and reinvigorate Lymph system 
Mountain views every where you look.  Nice to sit outside,
with this view and write my blog. 

Medical Smoothie (30 plus ingredients of health)
Diet is crucial: NO sugar or common allergens
(milk, corn, wheat processed foods, etc.)
Great friends who not only travel from Canada
 but try out the new diet regime thanks to Chef Hai
Supplements (Serrapeptase among others to detox,
build immune function, repair etc.)

Hotel bed: a lot time spent here.
Countless naps are necessary.
Deep sleep is heavily promoted with the theory that
some healing is only possible during deep sleep.
Deep sleep shortly following treatments is hugely
beneficial and sometime the only option.  Lol  

Short hikes on your day off if you feel up to it.
Never actually felt up to it but managed to come around each Sunday and do a slow short one.

My new workout friends!

Friday, June 3, 2016

Day 23 - Last Day at the FAR Clinic

Its a bittersweet day today.  No one is happier than me to be heading home soon to my family and friends.  Its also a very odd feeling to be leaving a team of people that turned your life around.  Its been 3 very intensive weeks.  More of an endurance test that any other I have experienced.  And I am done this portion.  The work still continues but I can do it while living my normal life.  Its liberating, empowering and the greatest sense of freedom I have ever felt.

My daily clinic team for treatments/modalities. Ashlee, Matt,
Me (rather red faced after treatment) and Lindsay

So I leave with a very heartfelt thank you to people that gave my life, life again.  I want to hang on to this feeling of intense gratitude for the amazing people here at the clinic and the amazing people at home.  Each one played a significant role in helping me get through.  The staff at the clinic made me feel strong, accepted and have worked very hard to help me learn so I can always be in charge of my life. They helped me through some of the toughest and lowest days of my life.  It is impossible to imagine doing this fight without them and scary to think of going forward on my own as well.  But I know they are there if needed and that is good.

Elanda and talked a lot today about working with different personalities with the same disease.  More often that not, I can imagine that Lyme people are hard to read because we have either come to believe or have been told that there is nothing wrong with us or it is in our head.  So when we come to a treatment facility like this, it is very hard to share your symptoms and feelings.  Your first instinct it to say they are not that bad, or make excuses for them.  Elanda got to know me well enough she said she could tell by my eyes, the way I responded or even how I smiled.  She would ask how I was but base the answer more on my actions than my words.  I doubt I will ever change because I can only imagine saying I am not feeling well will become very scary for me.  But I also know I will become more gentle with myself, I don't need to suffer anymore and I don't have to push myself when I don't feel up to it. There was something wrong with me, it was not in my head and if I feel low again, it is genuine and physical and I need to rest.  Its that simple.

Dr. Earl, Lindsay, me and Ashlee in front of the Health Pod -
NASA Pulse Electro Magnetic Frequency
(the one that made me very dizzy at the start)
They also preach on how important it is to surround yourself with caring, positive people because it doesn't take much to revert while your body is still healing.  But they also know I have that covered.  They comment often here about what great friends I have and how amazing everyone at home is.  I may have shared a few stories :-)  And as much as the people here saved my life, so did the people in my life at home.  To experience the love and support I received from so many is probably the most overwhelming and life changing experience I will ever know.  Together with the people in my life and my husband by my side, we overcame a Federal governments resistance, Provincial oblivion, medical defiance, financial obstacles, life and work commitments and a health mystery.  I am definitely the richest, luckiest and happiest person   in the world just because of the people around me.

To top it all off, I am having a good day today. I am sure it is because I made it, I did it and I am heading home.  But more than that I think it is because it is the start of the rest of my life, with a new outlook, a greater independence and a knowing that deep inside ourselves is always the truth.  I no longer need to suffer and no one ever deserves to suffer.  We have the ability to overcome anything as long as we always keep trying.  The solutions will always find their way to you, you just have to keep putting one foot in front of the other, even when you don't want.

So thank you FAR Clinic, thank you friends and family and thank you God.

Thursday, June 2, 2016

Response to "My Letter to My Canadian Medical Clinic"

I have removed the names because I just don't know what is appropriate here.  
So to put in context: 
1) He says he answers my questions, but does not.  No reference to Lyme at all or their ability/interest in treating or helping with it.  
2) He is suggesting I book another appointment with the same doctor I am complaining about below, with no suggestion that she is any more likely to help me.  
I know right now I am not healthy enough or strong enough to go through what I did last time. Maybe when I am a little better, I can make and appointment and see what the outcome will be. 

From: P
Subject: Re: Request
Date: June 2, 2016 at 11:17:19 AM GMT-4

Hello Kristy,

I am sorry to hear what you have gone through over the past few years, it must be a very frustrating experience.  

To answer your questions, the ------------------------ as a medical clinic isn’t in a position to recognize a specific disease state, the physicians will do so or not based on their individual experiences.  I discussed your request for support to work with the FAR Clinic with Dr. _______ who is covering Dr. _______ currently.  I recommend that you make an appointment to with her to discuss your needs going forward.    Dr. _______will return at the end of October this year, Dr. _______ is covering Dr. ______ until the end of August and Dr. _________ is covering her for September and October.

Please let me know if I can do anything to assist you.

Executive Director

Date: Sunday, May 29, 2016 at 1:51 PM
To: P
Subject: Request

Dear P
Executive Director

I am looking for some assistance to seek medical support and guidance.  I was originally a patient of Dr. _______ and I have to say I think she has been an incredible doctor very supportive and personal.  I have always felt quite confident under her care.  As you are aware she has been on leave and will be for some time.  This certainly plays a role in why I am writing to you.

After a very long hike in 2013, I became ill and reported an encounter with several ticks.  I had infections in my feet which Dr. ______ treated and had to alter her treatment because of how it was affecting me.  She did a significant amount of testing, including malaria and Lyme disease.  She sent me to an internal medicine doctor for further investigation, although nothing was found. 

From that point on, it seemed she was always seeing me for common issues but with a frequency  I was not used to.  She would even find problems I was not reporting.  She sent me for many tests such as pulmonary, etc.  She was always very understanding and took me seriously, which was nice.  She even once said "I sometimes think you downplay your symptoms."  She was right because I was  starting to feel like a hypochondriac.  I did my best to try to manage symptoms myself but many times it went on too long or just got out of hand, so I had to seek her assistance.

Early in 2015, I had called her after experiencing heart attack like symptoms, to which she scolded me saying I should have gone to emergency.  She promptly had me see a cardiologist and he did multiple tests which were all negative.  "I was one of his healthiest patients..."

Later that year we had a discussion about what was left to investigate.  I even came in with a list of possibilities from a medical friend who had talked to me in detail and she had tested me for every single one.  We talked about me just taking things easy and trying to give my body a chance to recover.  She was also on temporary leave and since then went on permanent leave.  I took the fall and winter and watched my condition decline rapidly.  Physically, I was barely able to walk at times (I had completed a half ironman two years prior), breathing, anxiety, chest, joint and muscle pain, were among some of the issues.  By the start of 2016 I finally had to admit, my cognitive skills had declined so badly I was going to have to consider that I was not capable of doing my job. 

Just as things had spun out of control, I met someone who had similar symptoms, was sent to the US and diagnosed with Lyme.  She had been on 5 antibiotics for 2. 5 years and had mostly recovered from her symptoms.  She encouraged me to do the same.  I contacted the US Doctor was encouraged to come down but to first co-ordinate with my family physician, for monitoring, blood work and prescription filling.  I called my clinic to see who I could see and was given an appt. with another doctor.

For my appointment, I brought in all the paperwork from the US Doctor.  I understand this is a tough position to put a new doctor in, that doesn't know me.  But I encountered resistance that I did not understand at the time:
  • She could find very little in my medical history to represent how bad I have been?  I felt sure the 35 pages of test and specialist visits I sent to the US should have been enough.  But I also knew there had to be more in a paper file somewhere. 
  • She wondered why I had decided I had Lyme.  I had not, I was investigating every option to try and help myself.  
  • She agreed that I could potentially have something serious but that we would have to wait for more symptoms to develop.  Or we could repeat all the tests that have been done to date. 
  • I showed her my list of symptoms of which there were 50, which she would not look at.  I tried to describe a few but felt I was not making a compelling argument. 
  • I explained that the US doctor asked for the following baseline blood work to be done.  She said she would request some but not all.  
    • She would not do a test for celiac (which was fine because I was already a confirmed celiac and it was highlighted on the top of my file).  Good thing celiac wasn't causing all my symptoms though...
    • She also did not order what is the best Lyme test in the US.  Although I had tested negative for a few Lyme tests in Canada, I now know that doesn't mean much.  I also wish I knew I could have ordered the US test myself. So it wouldn't have been so devastating when I couldn't get a doctor to order it for me.  
    • I also explained that the US Doctor would like her to follow my treatment, monitor with bloodwork and help with my prescription.  To which she responded " don't think I am going to do anything without the proper documentation to support it.'  This sounded reasonable (not sure it had to be said that way) but I was devastated to later realize that likely meant a positive Lyme test.
  • I asked if she would like the paperwork from the US Doctor to review which she would not take.  
  • She got up from the appointment said "I hope you find what you are looking for." and walked out.  

I left that appointment, sat in my truck and cried.  More than what was said, I was shocked at how it made me feel.  But the visit with the US Doctor that followed explained some of the challenges that Ontario Doctors have with helping patients with Chronic Lyme Disease or "hypothetic lyme".

I was diagnosed in New York with two strains of Lyme, Borealis and Bartonella.  They also brought to my attentions symptoms I was not aware of and had not even added to my list: tremors, paralysis on my left side and additional cognitive impairment.  So it should not be said that I was looking for symptoms, I was actually denying them. 

My initial prescription was too aper the addition of 5 antibiotics with the support of 10-12 supplements to assist with the antibiotics and detox of the bacteria as it is killed off., for 6 -36 months.  I have never done well with antibiotics and by the addition of the 4th, I was no longer able to keep them down, daily. I worried about my recovery because this seemed to be the only solution (after three years of seeking and thousands of dollars spent). 

I then came across a research facility in Salt Lake City, Utah that had modified a long standing alternative cancer treatment, that had been showing significant benefit for Lyme patients.  I am now going through that treatment and seeing improvement.  I will continue the treatments for a minimum of 3 months after returning.  It is crucial that I have a medical doctor at home who will work with me and the clinic and monitor my progress.  I arrive home in a week. 

I am writing with two questions:
1) Is Chronic Lyme Disease something that your clinic will recognize?
2) Is there a doctor in your facility that would be willing to support me,  open to the concept of Chronic Lyme and willing to work with the Doctors in Utah at the FAR Clinic to monitor me. 

I will be returning home from three weeks of treatment, a month of antibiotics before that and have been battling this illness for three years.  I need to find a doctor immediately. More than anything I plead with you to let me know if I should go elsewhere, so I don't waste time waiting for a reply. 

Thank you for your consideration.

Kristy Giles
941 Old Union Hall Road
Almonte, ON
K0A 1A0

Day 22 - At the FAR Clinic

Still going hard and it is harder than ever.  Only one day left to go and the thought is overwhelming.  Did it work?  Did I do enough?  Did I go hard enough?  Did I make any mistakes?  I think after years of misdiagnosis and doubting your symptoms and feeling, you doubt everything about this process.  Yes, I know it was right, I know it has already helped...I just hope and pray, I don't and didn't do anything to mess it up.

The thought of getting on with my life in a few short months is a little shocking.  I really don't know what that looks like anymore and maybe it will be a whole new way.  I look forward to seeing my kids play their sports again and not have to figure out how to rest and save energy so I can do so.  Nor to have to spend the day in bed sick after I do anything like that. I want to go to them when I have to talk to them and not call them into the bedroom.  I want to remember the things they ask of me and know they don't have to worry about reminding me...all the time.  They have been so great to me...helpful, caring, responsible, compassionate and very, very patient.  I no longer want to have to ask so much of them anymore.  I am lucky that they are young adults and able to take care of themselves.  But I am still a mom, who wants to be there for them.  For the first time in a very long time, it looks like that opportunity is near.  Seems too good to be true.

This last grand hurrah of symptoms and challenges brings a lot of things to light for both Brian and I. Since we are able to be together without a lot of distraction he is able to identify a lot of things, that I try very hard to ignore.  So I am not getting away with a lot these  Brian is really seeing my silent struggle to sort out simple things.  I am delayed reacting to what is going on around but in some cases can't actually sort it out at all.

The one symptom I try to overlook, to no avail, is my speech troubles. You know the word you want but you cannot pronounce it no matter how hard you try.  It used to come out as a different word but now I am just not able to say a word at all.  I start it, try, but the word in my head cannot come out of my mouth.  Thats where this disease was going before I got here.  I know of one girl that had to have speech therapy after she started to recover, so she could learn to talk again.  It is incredible the havoc those little bastards can do in your brain.

It may just be a consequence of loss of short term memory but sometimes you just have to stop what you are doing and get your bearings all over again.  It often happens if I am focussing something. Its kind of like, if you focus on one thing, you have to lose all the others.  Its a freaky feeling to say the least.  You all of a sudden realize you need to stop and regroup.  Where are you?  What were you doing?  What do you have to do? Was there something important you were focussing on?  You almost feel like you have to start with the basics, your name, place, was I grabbing something, putting something down, going somewhere...It all comes back in a flash.  You just have to stop everything so you can refocus.  Its like an incredibly brief wave of amnesia...that sorts itself out really quickly.  But you can't sort it out unless you stop everything else.  I would love to learn the physiology behind it, but thats definitely beyond me comprehension abilities right now.  BTW did I mention I DON'T LIKE IT?  (wow doing those words in caps locks were very challenging...)

Today, is much like the last, flu, nausea, fever, anxiety, muscle pain, joint pain, swelling, headache and very limited cognitive skills.  I feel like these are the last few days of feeling this bad for the rest of my life.  Its my one last chance to remember how much I hate those little bastards (I seem to be saying little now. I think they individually are getting smaller but so is their army.) As sick as it sounds, I have identified with these symptoms for a very long time.  I won't ever miss them but I also don't ever want to forget. I never want to lose appreciation for my health.  I don't want to forget how far I have already come and I always want to keep in the front of my mind how lucky I am to be given this opportunity.  So as I sit here feeling shittier than ever, a part of me wants to hang on to this I never, ever forget.
I am sure I am winning the battles with lyme because no one would feel this crappy for no reason!  I no longer feel the need to keep score, whether I feel good or bad, I am winning these days.  Bad days don't worry me anymore.  There is only one more score to keep that will come months down the road and thats the war.

UPDATE: I did get a response to my "Letter to my Canadian Medical Clinic".  Not only does he not answer either of my questions (although he says he does).  The only suggestion is to book another appointment with the same Doctor I was complaining about.  I think its safe to say, they don't want me back.  There is a lot more to this war on Lyme than just what is going on in your body.  Sad but true.

Wednesday, June 1, 2016

Day 21 - At the FAR Clinic

Its clear we are making the most of the treatments before I go home because it is taking every ounce of what I have to keep going.  I have lost most of my strength and balance and my energy is at an all time low. But I am not skipping a step along the way...its not pretty but I'm getting the job done.

As much as my oxygen improved yesterday, it is bad today.  My heart rate is all over the place and I am fighting a fever.  All good signs that my body is fighting and is reacting well to treatment.  But wow, its taking a toll.  Only 2 days left.  So no point stopping now.  Should be interesting to see what I am like in a few days lol.

I was asked today to describe what treatment is like and how much it would impact someone from living their normal life.  There is something about this disease and the treatment is the same in that its just impossible to explain any part of it in a short conversation.  No two days are the same and as soon as you think something is consistent, it changes.  I think that is the single biggest reason why we are not getting any help.  So to tell someone how hard or easy this process is, is impossible.  But I just know however hard it is, it is worth every effort to regain a sense of who I was.  I can't wait.

There is a great notice on the FAR Clinic Facebook page from a person who has experienced a great recovery.  She reports great results with cognition and that gives me much promise.  My head symptoms are at an all time high these days, so I can only believe the battle is going on up there and knocking the bastards down.  I am dizzy all the time (yes, more than normal lol) and my balance is bad.  My head fog feels more like brain smog that includes a bad haze over my eyes and affects my eyesight.  And of course, why not throw in headaches too.  And I can only be ecstatic that I am feeling this before I leave.  I can only hope that this means the return of my short term memory.

I expect things to only get worse for the next two days and will likely feel the consequences for more than a week.  My updates may be short or limited.  Just know its all going well and I have made a conscious choice to go hard before I am done.  The sicker I am right now the more we have accomplished.  No pain, no gain has always been my motto and no time like the present to pull that one out.

UPDATE: still no response from my "Letter to my Canadian Medical Clinic"