Sunday, May 29, 2016

Letter to my Canadian Medical Clinic

I have been wanting to write this letter for a while.  It has softened since the day I first decided I would write it.  I am trying hard to not put in anything that makes assumptions.  But I can tell you the doctor that day came across very flippant, patronizing and clearly wanted out of the discussion.  I remember saying at one point "I get the feeling you are not supporting this idea?"   I can't prove what was said, I didn't record it.  It is impossible to prove the tone and body language.  But with all the tests, specialists and doctors I have seen over this, I was never left feeling the way I did that day.  

All of the pieces in blue italics will not go in the letter.  They are just context. 

Dear 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 problem 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 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 order 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 also told by another Lyme Doctor that: indirectly doctors have been charged for treating Lyme in Ontario.  The prescriptions of many antibiotics, over a lengthy period causes them to be flagged and they are investigated and charged with something somewhat related but not directly the Lyme prescription.  Some have lost their license.  One of the best Lyme doctors in Ottawa will not take new patients because of being charged and challenged over this.  How sad. 

I was diagnosed in New York with two strains of Lyme, Borealis and Bartonella.  They also brought to my attention 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 to taper 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?
I hope now with all the media attention it has gotten since I left and the Conference in Ottawa, that it will be.  The answer would be an indirect "no" if I asked this question weeks ago. 
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 have been on 5 waiting lists over the last few months with potential doctors open to Lyme.  These doctors are either having to hide the fact that they treat it, are open to it or have a waiting list so long they can't get to everyone. 

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

I should also reiterate the difference between Lyme and Chronic Lyme disease.  Doctors will treat immediately after a tick bite if they feel the patient is at risk.  This immediate treatment can combat Lyme easily and quickly with a regular term dose of antibiotics.  Chronic Lyme is Lyme that was either not treated effectively or at all and has surpassed an approximate timeline of 6 months.  The Lyme then morphs and binds so that it is not effectively killed by a regular doss of antibiotics.  Some of the bacteria cells that are hard to kill are thick celled ones that the antibiotics can't get through.  

What is also interesting is the proteins in the bacteria at this point bind and ball together and that is apparently why the type of blood testing that is done does not read or reveal it properly.  So the longer you have it the less likely you will test positive for it. 

As well, over time the bacteria hides in the yeast in your body.  So the antibiotics cannot find it.  That is why both clinics I have been to in the US are adamant about a zero sugar diet.  I can verify this is true because as my symptoms declined rapidly my sugar cravings did too.  I am normally pretty careful about mostly sticking with natural sugars, but at the end, I was seeking anything and everything sweet.  I was told the bacteria feeds off the sugar and yeast, so not only does it receive your symptoms at the time (mostly because it is not focussed on all your other organs and functions) but you then create a vicious cycle of relief and making a bad situation worse.  







Sunday, May 15, 2016

Lyme Symptoms - My progression

Lyme Symptoms I experienced over a 2-3 year period

Some of the symptoms can be experienced by many individuals, but with Lyme it is the majority of these over a short period of time, with a severity or frequency more than normal - many are chronic. 

weakness
flu
diarrhea
weightloss
chronic sinus infection
reoccurring cough & throat infection
stabbing pain between shoulder blades
fatigue
upset stomach
fever
muscle aches
headache
breast pain & swelling
chills
trouble breathing (air hunger)
heart palpitations
chest pain
intense anxiety
nerve pain
hot sensations
twitching
tingling
vision blurriness
poor balance
numbness
cold sensations disorientation
hearing problems/ringing
aching hands and feet
acne
hair loss
hormone imbalance
more intense body odour
perspire easily
intolerance to smells
heartburn
joint aches
vertigo
joint swelling
lightheadedness
unexplained, rapid weightless or weightgain (can be both)
loss of appetite
cravings (salt & sugar)
paralysis in portions of the body
lack of coordination
memory loss
cognitive impairment
changes in sleep patterns
mood changes
sadness (periodic)
irritable (more frequent)
feel jittery and shaky
tremors
fatigue after meals
frequent urination
difficulty losing weight
dizziness when standing up
afternoon fatigue
wake up very tired
poor muscle endurance
frequent thirst
lack of motivation
mental sluggishness
nervous & emotional
emotional numbness
night sweats
irregularities in menstrual cycle
inability to concentrate
cysts/boils - Baker's cyst
feeling lost
difficulty swallowing
floaters in eyes
light sensitivity
extreme stiffness in morning (not sure joints will support you)
bad breath
nerve sensitivity (everywhere)
constantly clearing throat
dark circle under eye
brain fog
cuts heal slowly
bruises stay
indecisive
facial paralysis
facial swelling
low back pain
wheezing
low exercise tolerance
frequent sighing
swollen glands
rib soreness
neck stiffness
muscle twitching
confusion
difficulty with speech
reversing numbers/letters
word finding problem/or mix up words
lack of short term memory
head congestion

Note: No bullseye even with known bite

General progression of symptoms, tests and specialists
Bacterial symptoms- short term treatment
Infectious Disease Specialist - no findings
Virus symptoms (repeated)- no treatment
Pneumonia symptoms - tests negative
Pulmonary Symptoms - all possible tests negative
Cardiologist - all possible tests negative
Internal Medicine - tests negative - no findings

The other interesting thing with Lyme is you go through periods of decline and then small recovery.  So quite often the symptoms alleviate just enough that you think you are turning the corner and finally getting over this "virus that you caught.  But what you don't realize is each time you decline more than you recover.  So it is a slow decline with hills and valleys, that  you don't realize just how far you have declined.  Many times I thought I was coming out of it.  Now when I look at the whole 3 years together, I can see clearly what was happening.  It is very hard to see when you are in it.

Thursday, May 12, 2016

A trip across the border...one giant step against Lyme. Reflection on the past month - May 11, 2016

I got an email this morning as I prepare to travel to Utah for a new treatment alternative for Lyme.  I am further encouraged by her response and had worried what she would think.  I did not want to take away from what she had done for me...I feel she truly saved me at my most desperate time and I will be forever grateful for the day we met.

At my worst, two good friends picked me up, took me across the border and waited while I met with some very knowledgeable Lyme specialists.  The clinic had become mostly Canadian patients travelling to the closest resource that would help them, which meant travelling to another country, as sad as that sounds.  After 3 and a half hours of assessment, I was told I had two strains of Lyme, babesia and bartonella.  It would require up to 5 antibiotics and double that in supplements, with an incredibly strict diet for up to three years, to battle most of the disease but never fully conquer it.

At the end of my appointment, I sat there not able to speak and the nurse said to me "what are you thinking" to which I responded " I really have no idea, I just feel stunned.  And not in a bad way, as if I got bad news, just stunned or numb."  She said to me "I know exactly what you are feeling because it is the same thing everyone feels at this point.  It is shock, but shock that someone actually listened to you and somebody said I believe you are very sick."  I was not able to express it myself, but that was exactly it. For the last three years, I just wanted someone to believe that I wasn't okay, but all people ever told me was how healthy I was.  So much so, I didn't even believe myself anymore.

As I headed home that day, I was on a high.  I finally had a reason, a solution and a plan.  I could start living my life again.  I remember very well letting my colleague (who had been treated for Lyme as well) know my diagnosis.  I remember thinking how little enthusiasm she had for me and I wondered why.  I told work that I may be sick for a bit but I intended on working on my good days.  I was prepared for the decline before you get better and the detox reactions they warn you about, called herxes as the bacteria gets killed off in your system.  That was no concern for me, I was prepared to take on anything as long as it meant I would get better.  Or was I?

The first week seemed fine and into the second week I started to wonder what all the warning were about.  Man, do I regret my cocky attitude, because before the second week was over, things declined very rapidly.  I have never done well with antibiotics, and as I added new ones to my regime, I had more and more trouble keeping them down.  I couldn't eat any sugar (refined or natural), any grains except for brown rice, no root vegetables, only some fruits, and organic meat.  I had to protect my liver because it would be in jeopardy with all of the antibiotics and anything that would feed yeast would feed the bacteria.  If the antibiotics couldn't get at it for the yeast, it would not be able to kill it off.  So I could eat very little, I could keep very little down and my fatigue and pain skyrocketed.  And well, I only had three more years to go.  Regardless, I still felt very blessed that I had a solution and this time no one would take that away.

A very good medical friend did not quite see it the same way and felt I was putting too much at risk by continuing the treatment I was on.  He found a new treatment regime that was being offered in Utah based on years of research and test cases.  They had refined a treatment regime down to six key systems.  It was three weeks intensive treatment and then three months at home treatments and a cautious regime forever but the potential for full recovery.  Full recovery had never been an option till now.  So what did I have to lose other than my retirement savings ;-)

When I started to investigate the idea and spoke with the clinic on several occasions, it became clear to me that this was worth trying now and would only help me even if I had to revert back to the antibiotics later.  It was a lot of money and I worried what my family would think, but my husband barely hesitated.  He didn't think he could watch me do what I was any longer and insisted we had to find another solution.

And as I prepare for my trip and read that email from the doctor in New York, that started this reflection, I am so happy to know she thinks what I am doing is a great opportunity.  She was aware of many patients that had benefitted from one of the treatments the clinic was doing.   But she knew very little about the other five.  She encouraged me to take a pause in my existing course of antibiotics and try it.  She also encouraged me to bring back as much info as I could to share, it could only help others.  I didn't think I could respect her any more than I already did, but I did.

So I started this blog...


Wednesday, May 11, 2016

Reflecting on the last three years - May 10, 2016

Tomorrow is the beginning of my new life.  I truly feel that my life will never be the same. But for the first time in three years, I feel that is a good thing.

It's been a tough road, doubting myself, doubting the experts and doubting those who love me...to not knowing who to doubt.  In the end, deep inside ourselves we always know the truth.  Just sometimes it takes some really rough roads to learn that and come to love and trust that person deep inside ourselves.

They say Chronic Lyme Disease is the lonely disease and I could not think of a better description.  It becomes so lonely you are not even there for yourself. You don't know yourself any longer, you don't trust yourself and you soon dislike yourself very much.  You aren't who you thought you were and you continually let yourself down.

After three years of trying to convince doctors there was something seriously wrong with myself and convince myself there was nothing wrong with me, it all fell apart.  I finally gave in to the fact that I had no control over my life, I had no control over my body and no one could help me.  A lot of ideas enter your mind at this point, but the thought of a finding a solution was no longer one of them.

I count myself very blessed at this point, when I travelled to a meeting with some colleagues across the province.  I had to park halfway to the meeting to sleep.  I had to use a gps to find my way although I travelled to the same meeting place for over a decade.  I had to take pain pills from sitting too long and was too ill to go to work the next day.  I wondered if it was worth it because I couldn't recall much from the meeting except for one minor detail mentioned in passing.

A colleague  not in attendance had travelled to the United States to be treated for Lyme and she had not even seen a tick.  This had peaked my interest because I had been bitten three years earlier but thought I had removed it before the was any cause for concern.  I had never tested positive for Lyme, so surely that could not be causing all the crazy symptoms I had experienced over the last three years.  That was until she mentioned a few: numbness, loss of feeling throughout the body, significant memory loss, extreme fatigue, facial paralysis, chronic muscle and joint pain.  I thought to myself, how I understood Lyme was flu like symptoms.  I quickly learned that it was very different from Chronic Lyme that an individual might deal with over years.  It attacks every system and part of your body.

By the end, I couldn't wear jeans because my nerves were too sensitive.  By the time I picked up a pen to write something down, I couldn't remember what I had to write.   I couldn't finish a sentence without forgetting what I had to say.  And when I did say something, what came out was not what I intended.  I slept all of the time and had no desire to do any exercise.  I had come up with an excuse for all 50 plus symptoms I had not realizing how much I had declined and accepted as normal.

I had been experiencing muscle and joint pain for years, but two years prior my breathing got so bad that it started to restrict my running.  I had every pulmonary tests known to man and was "incredibly healthy" every specialist told me.  This progressed and I went from completing a half ironman to not being able to walk 10 minutes on my treadmill in one and a half years.  Yet, no one could find a thing wrong with me.

The spring before my anxiety had skyrocketed.  I am certainly not a laid back person, but I was so riddled with anxiety that it was consuming my everyday life and I started to experience such intense chest pains that my doctor sent me to emergency and booked a cardiologist right away.  After months of tests, I was once again told I was one of his healthiest patients.  I walked out of his office barely able to get a full breath and holding my chest because it felt like a strap was being pulled tighter and tighter around my chest with every step.  But I was healthy!

In the fall of 2015 my Doctor said, " I don't know what else to do for you".  So it was decided I would take the fall/winter and take really good care of myself, not push myself and work toward recovery and that is when the rapid decline started to occur.  The less I did the less I could do.  The more i took care of myself, the worse I got.  I simply didn't have anywhere to turn.

The loneliest part of Lyme I think comes from the contrast of what is going on inside to what it looks like from the outside.  To the general person, I looked normal most time.  I knew my face was swollen and not myself, but it looked pretty normal to my friends.  No one could see my pain and no one knew how little exercise I was able to do.  That was just too embarrassing to admit.  I lost feeling in my foot from my new boots, my hands ached because of the way I hld my steering wheel, I couldn't type properly because I was rushing, my memory was bad because I was too busy, I tried to do too much so I was tired all the time, I wore track pants because I like wearing track pants, my left side was weak because I had not been lifting weights, and on and on and on it went.  I had a reason for everything and if the doctors didn't think anything was wrong, why would I.  I just needed to change my attitude and I would recover.  And all the time most people around you think you are doing fine.  So when it comes to the time that you have to admit to yourself something is seriously wrong, it's really tough convincing those around you that there is.  Especially Doctors.




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