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 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.
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.