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.  ...

Friday, July 29, 2016

Confession #3 of a Lyme Patient - Sadness...Gratitude

It is hard to know if and when I was sad over the three years I was unknowingly battling Lyme.  I believe there were many days of frustration but the fact that I thought it was something that would pass, generally kept me distracted from the mounting problems.

What has surprised me in reflection is the lack of sadness in the last months that my condition rapidly deteriorated.  I became so accepting of my situation, which seems quite unlike myself.  I did stay very focussed on what I could do instead.  As fitness became impossible, I started walking.  As walking became impossible, I started painting.  As painting became a disaster (funny story for another day), I started putting away at all the little things I could do to keep myself busy.  I stayed focussed on what I could do...until my mind started to fail me.  That became insurmountable because not only could I not think of what to do, I was having trouble just thinking.

Here is the shocking thing that started to happen in this process.  As I fought to find things I could still do, things I still had in my life, things that gave me purpose, I realized I had more than I ever knew before.  As pieces of me were slowly stripped away it unveiled all the things I took for granted. And maybe I didn't take them for granted, but I didn't take the time to consciously consider them and be grateful.  Which in truth is taking them for granted.

As I sat outside wondering where this unknown illness was going to take me, whether I would be walking on my own much longer, I noticed the incredible 100 acres of natural view I had, the mock orange tree my mother in law gave me that had grown into a huge beautiful tree, the willow that reminded me so much of my friends father, the amazing rock terrace my brother in law built, that replaced the pool that my daughter spent countless hours in, the rock sandbox that my son spent countless hours in, the shed, porch, deck that friends and family not only helped us build but spent many days and evenings, sitting in, on or around.  The list went on and on, so many things, the spruce trees we transplanted that acted as goal posts for my daughter billion soccer shots, the open lawn that made way for my son's billion football plays.  Meanwhile, my daughter is out for a jog on the country road and my son is on the tractor helping his grandfather in the backfield, my husband is cleaning his ATV (again lol)...if all I ever do is sit here, I am so blessed.  What I am so sad about, is why did so much have to be taken away for me to clearly see all of this.

I am glad that I had those moments and days of clarity because I was also lucky to have found a diagnosis, support, and treatment shortly after this. I think the saying must be true "to get what you want in life, you must first appreciate what you have."   Although I still have a way to go in my recovery which is filled with highs and lows, I know that I have so much to be thankful for.  I know that if this is as good as I get, I am blessed.  I know I have friends, family and a community that supports me and that in itself, is all I need to have a purpose.  I don't know where this Lyme road will take me, but if all it does is take me to where I am today, I will be just fine.

The really interesting thing about Lyme, especially for women, that I have learned, is how badly it affects their hormones.  My husband will likely say he didn't need to be a scientifist to prove that one.  I understand the bacteria feeds on the hormones and creates incredible imbalances.  For years when I was "googling" all the possibilities of what could be wrong with me, hormone imbalances certainly frequented the list.  So, if this blog sounds like my journey has been all rainbows and lollipops, I am sorry to mislead you.  That is certainly not the case. Funny enough the hormone imbalance became most obvious in recovery.

My first effort at recovery was with antibiotics.  It was clear right from the start that they were working because symptoms started to disappear.  Although the antibiotics would not work for me in the long run because of many adverse reactions to them, they sure made a dent in the bacteria and started my recovery.  Yet, it took me a few days to realize what was happening.  Sometime between 8:30-10:30 every morning, I would cry.  I don't mean for this to be upsetting to anyone, it became a bit of a game with me.  It took a few days for me to realize what was happening. I might be writing this blog, cleaning up something that spurred a memory, something someone said wrote, sent me, did and I would start to cry.  It wasn't the kind of sadness you couldn't hold in, so I just let it out.  I started to accept it was going to happen each day and gathered curiosity in what it would be that would set it off.  It kind of became part of my schedule as silly as that sounds.

What I did learn in all of this is that as the Lyme was being attacked by the antibiotics, the hormones were not being attacked and were gaining a running start at rebuilding, balancing and restoring their normal status (as normal as possible with me lol).  Like clockwork, I assume somehow correlated to when I took my antibiotics, I would have something hit me deep inside and make me cry.  It felt good, was healing and then started to transform into the most profound gratitude I have ever felt in my life.  It started with sadness and then would feel more like gratitude and then it became the gratitude that made me cry... "a good cry" as they call it.  It is a lot for me to admit this. I am usually one to hold it in, hide the sadness, or at least deny the cry. But I somehow believe it to be a monumental step in my recovery.  It didn't allowed me to deny any worries, fears or sadness, it had to come out.

So as I approach three and a half months into recovery, I have to admit it doesn't happen very much anymore.  I guess this is as balanced as my hormones will ever get (oh my poor family hahaha).  But it has made me realize that on the other side of sadness is something we work very hard to achieve in life and that is gratitude despite the situation.  I have seen how the most giving, grateful and generous people are often the ones that have lost so much or had to fight for what they have.  I now realize why, when so much is taken away, you are able to see how much you have.

I have decided to find the gifts in this process and this is certainly one of them.  Sadness, fear and vulnerability don't scare me anymore.  I have gotten better at accepting help and support because I know when I am better, I will give it back.  Somehow deep inside, I feel this disease is going to give me more than it ever took away.

I have also decided to quit waiting until I am better to do things.  I was waiting until my anxiety got better to head out in crowds, for my energy to come back before I went out for any length of time, for my brain fog to dissipate before I just went out.  But I have since decided to live with the Lyme as it presents itself each day.  I have gained many coping mechanisms to deal with the remaining symptoms, so in case this is as good as it gets, I may as well put them into practice.  I can't keep hiding at home waiting for this all to be over.  It just doesn't work that way.  I believe if I can accept where I am today, it will only get better from here.  If I am grateful for where I am will only get better.

Friday, July 22, 2016

Confession #2 of a Lyme Patient - Craziness

I wrote this blog a while ago and never posted it.  I don't want to sound like I am making light of this aspect of Lyme.  I also don't want it to seem that I am trying to qualify "crazy'.  I have been comfortable being described as crazy in my past.  I am different, I do things my way, I do many things others don't want to and I think in a way very unique to me.  I consider that crazy at times and I like that part of me.  But I have been speaking recently to others about what it feels like to mentally be fighting Lyme and I realized there are so many levels to that answer.  Like many battles in life, there is a huge component that is mental.  And not only does this physical disease affect your body, it invades your brain.  On top of all of that, 3 years of misdiagnosis wipes away most of what you know, believe and trust about yourself.  So you begin a lifelong battle to fight for someone you don't trust, in a body you don't know and with a mind that is not in the game.  That feels "crazy".

I recently watched the Avril Lavigne interview where she talks about how people made her feel like she was "crazy" when she was unknowingly battling Lyme for several months.  I can't say anyone said "you are crazy to me" but with the symptoms, side effects of the disease, lack of awareness and misdiagnosis, "feeling crazy" is an understatement.  Now, don't get me wrong.  I have been a little proud over the years to call myself crazy.  But Lyme over a period of time takes crazy to a whole new level, one I was not comfortable with.

Early Crazy - you swear something is wrong with you.  The symptoms are well beyond anything you have experienced before and yet, everyone tells you, you are healthy. This doesn't feel healthy, but they say it is healthy.  I would have sworn there is something more serious going on.  How could I be so wrong?

Continued Crazy - now the symptoms are mounting.  You have decided to accept some as just part of life, but new ones are emerging.  Are you looking for them? Are you somehow doing something horribly wrong to create them?  Have you become a hypochondriac?  Why does it feel like your body is literally falling apart?

Remorseful Crazy - you finally admit that being crazy earlier in life is coming back to haunt you.  People told you shouldn't do those adventurous things.  They said you were too hard on your body.  They swore you would break down before you were very old.  Guess they were right.  Of course, you could go from endurance racing to every limb, system and basic function being affected, because you caused it.

Pessimistic Crazy - you used to be so positive and now your negative views are physically affecting you.  If you could just ignore the symptoms and get on with life, they wouldn't seem so bad.  You used to motivate people to be active and adventurous, now you are the exact opposite of what you strive to be.  Quit thinking about what you can't do and move on.

Forgetfull Crazy - Why can't I remember that?  Strange.  Must have too much on my mind.  Got to get myself organized.  Forgetting too many things lately. I hope no one notices.  I will gently ask a few questions and get things sorted out and get my act together so it doesn't happen again. At least I can admit when I make a mistake.  Shit, I did it again.  This is getting embarrassing.  How does that keep happening?

Brain Freeze Crazy - I can't sort out my thoughts to write this email.  Why is something so easy, so hard for me to put together?  I must have too many interruptions.  I need to work at home for a day.  Maybe I need a vacation.  Wow, if anyone knew how long it is taking me to write this email, they would be horrified.   I wonder if it is not making sense to just me or if it will not make sense to the reader?  Why can't my head figure this out?  Maybe I will leave it until the morning when my brain is clear.

Brain Cramp Crazy - oh my, what was the word I going to say?  It was right on the tip of my tongue.  It's gone, wait a second, pause, it may come back.  Now I don't even know what I was saying.  Everyone in the room is looking at me like they are totally confused about what I was talking about.  I can't remember what I was talking about.  This is embarrassing.  Why do you always have to share your thoughts?  Next time, just wait and maybe you will say it more concisely...or not at all.  That would be safer.

Walking Crazy - I couldn't walk this morning.  How odd does that sound to say? You can't tell anyone that  - how dramatic would you sound.  They will think for sure you are exaggerating.  As if you couldn't walk.  Just sit on the bed and move your limbs until they can support you.  See, you can walk.  You were just asking it more than it was.  Good thing you didn't say anything.  That would have been embarrassing.  Except, I don't know if leaning on the wall down the hallway, is considered normal.

Drunk Crazy - OMG I just fell into my desk again.  Is it sticking out too far?  I have to quit rushing.  Maybe I am lightheaded.  Am I drunk?  I feel drunk.  I walk wobbly at times.  It's like I get thrown off balance for no reason.  I have been knocking things over lately.  I have never been very coordinated. I was always called a bull in a china shop.

Dream Crazy - you don't have dreams anymore. I wonder why that is?  I literally don't wake up and remember a dream.  It's been months, maybe years since I have dreamed.  Hmmm I never realized that until now.  But you know, I can't picture my life lasting much longer like this.  If all of this is getting so bad over the last few months, I can't even picture myself a few years down the road.  Not much to look forward to.

Lyme Crazy - why would you argue with a doctor that you want to go the US to be diagnosed by a Lyme Specialist.  Why would you insist you have any idea what's wrong with you.  You can't doubt the blood tests, they were all negative.  Quit trying to make something of nothing.  Who diagnoses themselves and why would you want Lyme?  Oh wait, maybe because that is the answer to ALL of this craziness.

Overthinking Crazy - I would just like to stop thinking about this for a day.  I don't want to wonder about my symptoms.  I don't want to talk myself into something really being wrong, then telling myself nothing is wrong. I don't want to worry about what I say, what people are understanding, why I can't do something, what thing I am going to do next, what new thing will pop up and surprise me, how I am going to cope, how I am going to hide, how I can get it all done, how I can get by just another day without looking crazy.  I just don't know how.

The thoughts go much deeper than these examples.  I think the major point is the thoughts, analysis and self-assessment never stop.  From the outside all looks perfectly fine, everyone tells you it is perfectly fine and it's just a crazy mess inside.  So when you see Avril Lavigne quite emotional about her story, I believe it's partly sadness from a time where she was so helpless, she didn't even have herself to depend on.  But, it is also a release of relief that she can find herself again, she was right that something was wrong and she wasn't crazy.

Saturday, July 16, 2016

Three Months Since Diagnosis - Beating Lyme

It's been a while since I have updated here and it has also been a few really rough weeks.  But as always, I have good news to share so I am back.

I was expecting setbacks, I was told you get worse before you get better, I was told it would be a roller coaster ride.  What I did not expect at this point in my recovery to slip further and further back in my recovery to the point where I questioned if it was working at all.  The clinic kept calling and I just didn't feel up to talking about, as did many others who wanted to help.  I just wanted to push through this phase and get to the other side.  It is so hard to know what is normal and what I should have sought some help for.

It was sorted out in a consultation with my NY doc.  She explained a few things to me, some of which is really great news.

First: She explained that I am showing that I have beaten most of the Bartonella strain of Lyme.  The symptoms I am battling with now are mostly the Babesia strain which is the one they call "the bastards".

Two: She is also incredibly impressed with my progress.  I am way ahead of where I would expect to be with other protocols and she feels the treatments I am doing and have done at the FAR clinic were clearly the right choice for me.

Three: The Babesia strain feeds on iron.  I have eliminated all the other non-essential items from my diet that support lyme, such as sugar, so now it feeding on my iron.  Hence, my extreme fatigue.  The kicker in is that I cannot take iron supplements because that will only strengthen the bacteria.  So it's just a matter of fighting the bacteria until it's gone and fix the iron issue after.  It helps just understanding that.

Four: Since I am still struggling with neurological symptoms I am going to try a new med after I finish the next six weeks of treatments that the doc feels will really kick those on their ass.  That is very encouraging to me.  Not recovering those cognitive abilities really wears on your worry.  It is motivating to know we have something to keep trying.

Five: Even after understanding the iron issue, I kept getting sicker so the NY doc suggested that because my progress is going so well, maybe I am not getting rid of the bacteria as fast as I am killing it.  It was an interesting theory and worth a try.  She upped some of my dosages and added a few to flush the dead bacteria out and bingo!  Within 24 hours, I was already seeing a marked improvement.  It was a turnaround point I had been waiting for.

As much as I still don't have a medical doctor in Canada to help me, I have incredible medical resources that are all willing to work together and support one another's efforts to help me get better.  Everyone has built on the others treatments and all have supported the efforts I am making through the different experts; Research Clinic in Utah, Lyme Doctor in NY and Naturopathic Lyme expert in Ottawa.  Funny enough, all professionals that I have to pay for.  The only help I CAN'T get is from the system I already pay into, the Canadian Medical system.  But that's really okay, I am getting help and support like nothing I have ever experienced before... it's worth every penny.

Oh and to top off this little rant, my short term benefits go through Service Canada's employment insurance benefits but they think they can only cover a week out of country for medical reasons - not my full time in Utah.  For so many reasons I live in a great country but when it comes to this, they suck!  But I do have to commend the staff person that spent an hour on the phone with me trying to build a case.  Although my claim was not supposed to have a two week waiting period,  after two months, I have still not been approved.  He was really trying hard to understand Lyme and the challenges that surround it.  Not many employees would have taken the time or been so helpful.  It was very refreshing and reminds me that a little compassion and patience can make a huge difference.  But as he mentioned there are still rules he has to follow...  There are just some battles not worth fighting.

Speaking of battles, after my follow up emails that apparently got lost in the Director's spam (at my home medical clinic) he asked that we talk by phone.  There were several exchanges with dates and times and the final confirmation never happened, nor the phone call. Maybe that email got lost in his spam again, but at that point, I got really sick and didn't have the fight in me anymore.  I was just asking to see a different permanent doctor at the clinic instead of seeing the one that did not support me and have two different interim ones until my doctor returns from leave.  Seemed like a simple request and only required a yes or no answer.  But it just got more difficult than it needed to be.  Easier to pay for the help and save my energy for healing, than to waste it on trying to convince someone to help me heal.

I can understand how chronic Lyme is so challenging.  I am incorporating information, treatment and trials from every angle I can find them.  And it is taking all of them to make this process work.  It's true that you can never give up, you have to keep searching, asking, and working to get where you want to be.  Every corner you look, every person you talk to, every article you read is just a little bit more that will get you in the right direction.  The only thing you really have to do is Never Give Up.

So in short, I am finally back on the right track and have decided it's taking a community of friends and family to help me through and a continent of professionals - but it's happening.  There truly is a blessing in every burden.  Its amazing to me how much impact the little things have.  A note, text, email, picture, laugh, quote, hello, or kind words can literally make the biggest impact on someone suffering.  I think many times we think about these things and feel silly or let the idea pass.  Don't.  As each day goes by, if you have a thought of doing a small kind gesture for someone.  Do it. Don't let the thought pass.  It can change the world for that person and you may never even know it.  I have received what might be perceived as the most simple gesture to the giver, but it often comes at the most opportune time.

I know there is a lot of suffering going on in the news and the world.  I find it hard to follow right now. I know it's very sad and painful for many.  But I just can't let it undermine the most amazing gestures of humanity I have experienced over the last few months. This world is also filled with kind, caring and truly loving people.  I think we just need to have more confidence to share that part of ourselves and know it makes a difference.  We may not be able to override the pain the world feels but if we can override one moment of pain for someone close, we do change their world.  I promise you it's true.

Tuesday, July 5, 2016

A Month at Home - Recovering from Lyme

I had really expected this update to be ice cream and lollipops.  I waited for a while because I wanted my setback to pass and this update be full of good news.  I seem to be resistant to learning that is not how things go...Despite that, I still have good news to share.

What I thought was a setback, and may still have been, seems to be a patch of low days that are stringing together to do some major healing for me.  I remember Matt warning me on my last day in Utah that some of the bad days at home could be worse than the bad days at the clinic.  I chose to ignore that warning as I think I believed it to be impossible.  He was right, I am shocked at how rough this phase is but I also find it very different from the bad days at the clinic.

This phase is like a long-term endurance test.  Before you would have good days and bad days.  The good days would rejuvenate you and give you hope and the bad days would set you back.  But if you muscled through the bad days, you knew a good day was just around the corner.  I had a series of good days at home and really saw progress, then when I had a few bad days, I knew to just hang on, good days were around the corner.  Well, I think it starts to function differently, the low days are not as crippling (which is great) but they last day after day and wear down your system.  Some of it is mental I am sure but my body is just so physically      exhausted, I have struggled more than ever with my treatments.

What I find ironic about this process is I am saying the same things in my head I did on the 300km trail hike after I was bit by the tick (and unknowingly infected).  I was sick, had infections, raw feet and wanted to quit.  I used to tell myself, to just get up, start the walk that day, put one foot in front of the other and see where it takes you.  I would finish that day and wake up and do the same thing again and before I knew it, I was done.  I feel like I started my days with Lyme in the exact same fashion I am going to finish them.  I am just going to mentally talk myself through them and before I know it, it will be over.

I promised some good news, and here it is.  I don't have any scientific evidence to prove this but after 10+ days of pushing hard just to do my treatments, you have a lot of time to assess what's going on, and no physical energy to do anything but. I am convinced my body is giving at all it has to attack the infection in my heart.  This setback started with my anxiety at an all time high and now it makes sense.  All of my heart and pulmonary symptoms have returned at an all time high and consistently have been there every day, telling me good things are happening.

You may remember that the breathing issues started over 2.5 years ago and what I didn't know was related at the time, was the stubborn knot in my upper back, the shooting pain down my arm and the numbness into my right hand.  At the time I had a massage therapist trying to work on it because my right hand would go numb on my bicycle or motorcycle.  She then suggested I go to Chiropractor who then sent me to an acupuncturist.  Meanwhile, I was going for pulmonary tests and then on to a cardiologist.  Not thinking any were related to the other.  Looking back now, I realize the pain started where the bite was and all the symptoms stemmed from there.  Funny, how it seems so clear now.

The heart symptoms are a little overwhelming and at the time had my doctor very worried, as they would today, if I didn' know what was going on.  So I think it only makes sense as my body works to fight the infection in one of the major locations of this disease, it is going to wear me down too.  They mimic heart attack symptoms, which is why my doctor was concerned.  It is a combo of shooting pain between your shoulder blades, to feeling like a strap is being twisted around your chest.  Sometimes it feels so tight that you can't take a full breath and if you try the pain is sharp and intense.   Anxiety comes from nowhere and can overwhelm you in a matter of minutes.

Even when I say the symptoms are there all day long, every day, I can feel them shifting too.  The location of the pain changes, the back pain comes and goes and the tightness increases and decreases.  All proof that things are working really hard to change and that change will be dead Lyme bacteria leaving my heart.  So just you wait and see, an upcoming post will be the loss of chest/heart issues...I promise.  Those little bastards (they are little now in size and numbers lol) have been hiding in the trenches of my heart for a very long longer, they have been found and are being taken down.    I just know it!

Many Lyme patients who were very crippled or affected never had the heart issues. One told me they were told it usually hits the heart last.  I have to guess that they hit mine first because of the location of the bite?  I was also told the battle of Lyme recovery goes backwards, starting with your last symptoms, moving back towards the beginning.  So you can see why this happening now is very good news.  We are getting back to the heart of the situation...pardon the pun.  But what's not funny is I heard of a young girl who has a pacemaker from Chronic Lyme.  So, I count myself very lucky that it didn't do permanent damage and even luckier now that my body is able to finally start taking care of it for good.  Yet, it makes me wonder, these are major symptoms, that make me think should have Lyme disease on a list somewhere as a possible cause.

It's hard not to get discouraged when day after day you feel like you are slipping back.  But I have been told and keep telling myself it's part of the process.  And I am very lucky to be in this process. Like the saying goes, "they can't all be good days, but there is good in every day."  I can tell you the nice part of this is I seem to be guaranteed a few good hours every day, so the saying is true more than you know.

When I had a few good days a few weeks ago, a good friend said she saw signs of my old spunk back...a zest for life I have been fighting to regain for good.  I know it's there, so that is very comforting.  I guess we just have a bit more work to do before it's back for good.  And I can tell you, I would rather take the time now, kill every single one of those bastards before moving on. So I am doing all the right things, taking is slow and easy and doing all I can to give my body what it needs to stop those bastards dead in their tracks.

People often ask my how would they know if they have the disease.  They feel the symptoms I mention are quite common and they are right.  It's not the symptoms themselves that are the problem, it is the full list, they just keep piling up.  If you feel some are gone, its just because you are not noticing them anymore because new ones have come around.  It is kind of like when they say to stub your toe when you get hurt elsewhere.  You will notice the pain in your toe, which is more manageable. You will feel like every aspect and part of your body is injured, wearing down or not functioning properly.  Every week, every month, you will have new, major issues which should send you to a specialist and a host of tests.  The old symptoms don't go away, you have just figured out how to manage them, as new ones keep adding up.  It's overwhelming, it's relentless, it wears you down and you become someone you don't know.  I don't know how else to describe it.

So the battle continues, as it should.  Oh did I ever mention I was never a very patient person lol.  I guess the saying is also true that we are given challenges in life that strengthen our weaknesses.  I have a LOT of work to do on my patience, so this may take a while lol.

But, what I think makes me the most impatient is wondering what is going to happen to help others?  I am going to heal but this situation should help others avoid this process, at least cut down the time and effort, but I don't know how that happens...