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
To: KRISTY GILES

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.

P
Executive Director

From: KRISTY GILES <kristygiles@storm.ca>
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
613-852-7496

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