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.  ...

Monday, August 29, 2016

Lessons in Lyme

I have learned it is clearly nieve to think that healing from Lyme is just about restoring your health.  This disease poses so many hurdles that unfortunately it is much more than just getting your body better.   I think it is the same for most challenges in life.  It is never as simple as it appears on the outside, it is harder that it looks to others and no one knows what each if us is really experiencing.  It has been good to acknowledge that for myself and for others as well.  But the real trick is to acknowledge that and move on, not to use it as an excuse.  So that I will do.

When I was really sick I remember thinking whatever this is it has literally impacted every part of my body and every system it operates.  After being diagnosed I started to realize that it not only impacts every part of you, it impacts every part of your life.  And in healing I have come to realize it impacts even much more.  It is impacts you physically, mentally, emotionally, socially, financially, politically, career, family, simply impacts who you are and the legacy you want to leave.

Recent challenges that go much beyond on my health have demonstrated that I have a long way to go to full healing and that the ramifications will be lasting. I can allow these challenges to jade me, wear me down or scar me.  Or I can take  each one, deal with it and learn so that I may help myself and others.  To do that I must take the lesson for each battle and find what is good in.  So that is what I plan to do because here is what I have learned:

1) Everyone is battling something and if we can do anything to help one another it is to share in the pain, share in the healing and simply support one another regardless of what the struggle might be.

2) Because Lyme eluded myself and doctors for so long, I have potentially been sick with many illnesses and tried every trick in the book.  If anything, I have a sense of what we can do as individuals to heal and more importantly, what works and what doesn't.

3) When you body is as weak as mine was, it is very sensitive or receptive to everything you do, good and bad.  It gives a very true sense fo what impacts our body and how some things, like stress (that are often hard to realize) are doing much more damage than we can imagine.

4) That if I can take all that this disease is teaching me and share it, I may not only help someone else, I can remind myself that there is purpose in all bad that happens and keep moving closer to full recovery.

So although, I have come a long way, I still have a long way to go.  Progress is so slow and minuscule that I cannot reflect by days or weeks, I need to reflect in months, to see how far I have come. And I have come a long way.  Full recovery is my goal so I have no plans to stop here.

So instead of providing updates on my recovery, my status and what symptoms persist,  I have decided to turn this whole thing around.  I am going to share what I have learned, especially all the things I plan to forever implement in my life as a result.  If people can take something from it then great, but for me it will help me focus on the end goal of health, not where things stand right now.  It will also hopefully distract me from al the small hurdles that seem to accompany this process.

So my next updates will be what I will refer to as Lessons in Lyme.  I hope people will find value in them. Some of them have changed my life forever.  Lyme has changed my life forever, but I am determined to prove that it was for the better.  I have to believe the purpose in all of this is much more profound than the challenges, or I would give up.  I am choosing the road that is longer, slower, rougher and harder, but I believe that at the end is health and no one is going to cut that journey short.  No one is going to convince me to take what appears to be the easier route.  No one is going to convince me that I am not going to get there.  I have a way to go before I can get there.  But I will not stop my conversation here until I get there.    I will not stop until I get there.

Friday, August 12, 2016

Lyme Action - What's the Province up to?

Thanks to the help of a special friend, I received a call today from a Policy Advisor at the Ministry of Health and Long-Term Care, The Honourable Doctor Eric Hoskins' office.

I suppose if there was anyone I wanted to hear the story of many Lyme patients - those I have talked to, read about, and heard of, including myself, then it was likely her.  She was kind and considerate and was wanting very hard to understand all of the things I had to tell her.

She shared with me a report that was released at the end of July:
Combatting Lyme Disease Through Collaborative Action - Ontario's 10-Step Education and Awareness Plan

FEEDBACK from Ministers Staff: 
She explained that this was the result of a collaborative of many stakeholders giving direction to the Province.  These included many patients and medical professionals.  She explained that these are the first steps the Province is being directed to take.  

You can read it at this link:

I read through it prior to our call and here are some of the items I shared with her regarding it and my experience:

It focusses heavily on education and awareness - hence the report's subtitle.  I think that is very important and with that, prevention should always be the goal.  So it is good that this is not being overlooked.  But none of the awareness would have changed this situation for me.  Admittedly, I needed to find a better way to remove it when I was alone and it was between my shoulder blades, a tough spot to reach.  But, the fact that it was being removed within 24 hours negated that for me.  That message should be revised.  Generally, I think the basic information is getting out there.

It may be too late to rely so heavily on prevention.  That may have been more important a decade ago when so many people were not already infected.

NOTE: I was wearing socks and shoes.  I was wearing running tights that were secure around my ankle.  It was a cold day, so I have a tshirt, long sleeve shirt and heavy rain jacket on, along with a 40 lbs backpack, heavy on my back, with a thick waist belt and shoulder straps.  I used a spray with DEET and even added Tea tree oil to my lower extremities (I read that somewhere).    I think that sums up most of the prevention recommendations I have read.  And yet at the end of the day, I have 7 ticks on me, 5 of which had made their way to my back. We can't rely so heavily on prevention.

I keep reading the statistics of Lyme reports and I hate to be so blunt, but the numbers are wrong.  I know of 4x the numbers present that go to one doctor in the states, that are from Ontario.  You have to remember, I am still not an Ontario statistic, because my only assistance has been from the US.  I do not have one medical doctor that is assisting me right now or aware of my situation, in Ontario.  I believe if this province knew the real numbers of: patients treated elsewhere, patients still not diagnosed, patients suffering in silence, you would be looking at this disease as a medical crisis.

This is mentioned in a very vague way.  If this is the medical crisis that we feel it is, we need to know very directed studies are happening right now.

FEEDBACK: there is public health research money that is being redirected at Lyme research since Lyme has been established by the Minister as a priority.  

This is good to understand because I didn't understand how we just pay for more research.  But I do know that some research is based on figuring out the high risk areas (geographically).  I am not sure that is important, we need to treat all areas as potential risk.  (I did not have a chance to state this sentiment - recording it here).  I also feel the research should be diagnosis or treatment focussed.  That is where the real challenges lie.

The challenges with the blood test are mentioned here and thats good.  For a few years, I ruled out Lyme simply because my blood test was negative.  But here are a few considerations concerning the blood test:
- there is a better test in the states that you do not refer to.  All medical doctors in the US and naturopaths that I have been to in Canada use this test. Although it is not great, it is better than the one we use here.
- I have been told by a medical professional in the US that the longer you have Lyme the less likely the blood test with show positive, because of the way the proteins bind together and therefore don't reveal themselves.  I hope I am relaying that information right, but I am not a medical professional.  I just know the longer you have it, you reduce your chances of a test picking it up.

FEEDBACK: She did agree that doctors may not have been aware a few years ago about the high incidence of false negatives.  Hence the direction to move to clinical diagnosis now. 

It is nice to see that Ontario is encouraging clinical diagnosis since the testing is so weak. But there are a few concerns that are not being addressed when this recommendation is being mad.
- Clinic diagnosis is being made by eliminating all other possible causes.  Well this took me over 2 years to complete all the test and find nothing wrong.  I was very sick by then and full recovery is not likely possible.
- Lets remember: I had seven ticks on me, one was attached, I got very sick shortly after and was plagued by mounting illnesses for the next three years.  Yet, no one felt it was Lyme.
- The question is - how do you see clinical diagnosis happening?  How are you helping Doctors Diagnose?  If it is by process of elimination, it is too late and too long of a process.  Doctors in Ontario need way more tools than they have to diagnose clinically.

FEEDBACK: this proved to be a fruitful conversation since she felt the topic of "process of elimination" had not been brought up as a concern.  I also mentioned a workshop that was being held in the US that brought together Lyme proficient doctors to aid others with clinical diagnosis.  She was going to take both issues back to the Stakeholders group.  We both agreed that clinical diagnosis will be a challenging task for doctors, the more assistance the better. 

Assuming Doctors are able to make a clinic diagnosis more rapidly, Ontario regulations are preventing doctors from treating with the course of antibiotics that is required to actually combat the bacteria.  a few things are happening here:
- doctors are being investigated when treating with high antibiotics over a longer course. They are becoming apprehensive to do so as a result.  Some Doctors who have done this in the past are refusing to take Lyme patients because it puts them in a vulnerable spot.  I am aware of this first hand.
- some patients are being treated with a normal course of antibiotics, but if the disease has progressed this will only knock down the bacteria temporarily.  Symptoms are gone for a while and then when illness returns they are not associated with Lyme or previous illness.
- Some fairly successful antibiotic regimes used in the US have included 5 antibiotics for up to 3 years.  That would never even be possible in Ontario.  And even at that, some patients have some symptoms return.  So it doesnt necessarily kill all the bacteria because some Lyme celled become so thick celled antibiotics cannot penetrate.  Regardless, that course of antibiotics is unheard of here.
-you have no idea the stories I have heard of what some Ontario patients have to go through to get this treatment when they have decided it is their only way.  It makes the average person feel ike fihting for their health is wrong.

FEEDBACK: Protocol for medications was not something she could speak to.  I agree this is a very touchy subject and probably the biggest hurdle to helping patients recover.  My understanding is that presently antibiotic protocol in Ontario will only allow for quantities and longevity that will resolve early Lyme, not chronic Lyme.  

There is a call for a Nationwide framework for Lyme.  The idea is that this will pull together experts from all over the continent and hopefully gather valuable information from the US treatments.  However, (in my lamens terms), there is a protocol you have to follow which goes something like this: The Province working through the College of Physicians and Surgeons, working through the Canadian organization working with the American affiliate, to the form a national approach.  Not an easy process.  

I wonder if the idea of Doctor workshops is a way to share valuable information while the formal approach is happening...?

I will say no one is treating Lyme perfectly yet.  But I am adamant when I tell you, the US is atleast doing a much better job.  Ontario has no idea how many people are travelling there and paying more than $30,000, $40,000, $50,000 for help, knowing it is not foolproof.  That point itself should be proof enough to show how inadequate it is here.  But this has been happening for decades.

With some work, I was able to get short term coverage through the Federal Government , by proving that I had to go to the US for treatment because nothing was available to me here.  Thank goodness for my blog, because it played a huge role in demonstrating that.  But, my point here is if in a round about way, the Federal Government has acknowledged that I could not get treatment here, I would hope that the Province can recognize that.

Yet, I am not able to get medical benefits for any of my treatments through my provincial health care system or private medical benefits that I have at my work because they only cover medical emergencies in the US.  The fact that sufficient treatment (or no treatment at all in my case) was not available here.  A diagnosis was not even possible for me, here.

FEEDBACK: Was an issue that was consistently raised by patient stakeholders.  I was assured they are looking at this issue in more detail.  I have to admit, it is just nice to hear this issue recognized, but I have to be realistic in knowing that for them to acknowledge this should not have happened and is not just, puts the Province in a very vulnerable position.  I will be very impressed if this is ever rectified for past patients.  For now, need to focus on ensuring that fewer people have to resort to this.  And that means resolving the above issues first. 

So when we look at the Provincial Report and apply it to my situation alone, awareness failed me, prevention failed me, diagnosis failed me,  treatment failed me and all possible coverage failed me.  I do feel the report has some good general content to it, it really just needed to be published a decade or two ago.

I can tell you what impressed me the most is the effort that was put into hearing my and many other individual stories.  I will also say the information gathering feels very genuine to me, especially when she was able to reiterate what info was new and would be valuable to the group.  What a great way to make someone feel heard and valued.  I know for many Lyme patients, that is something they are striving for.

I also know these efforts take time.  It is unfortunate that we are so behind  because time is not something we have.  For many, it's way too late.  Regardless of timing, the Province has decided to make this a priority.  As a Lyme patient, I can get stuck at being bitter or I can continue to seek solutions and offer suggestions and maybe we will get somewhere faster than hoped.

Thursday, August 4, 2016

Lyme Resources - Help is out there, don't give up

I was reminded today of a conversation I had with a recovering Lyme patient right after my diagnosis. I admired her for her tenacity and willingness to share her info. She was also spending her time being an activist for Lyme and advocate for patients. I was so low on energy at the time, I couldn't imagine myself doing that. I told a friend at the time that I just wanted to heal and move on.

What I have come to realize is that as you work through this disease you start to meet people who have traveled a rough road, like yours but different as well. Some are finding success, others not so much. As you heal, you don't want to leave them behind, nor do you want others to suffer. It is very difficult to just heal and move on. Someone saved me because they didn't just heal and move on.

Then comes a helpless feeling. The whole world is starting to talk about Lyme and nothing is changing. Or is it? It is impossible to know what could be or is happening behind the scenes. So, the only option is to keep trying.

I started this blog originally to share my treatment updates with family and friends, while I was away. I knew it would be a personal one and wanted to keep it so. I seem to be opening that circle wider and wider, with the chance that it may help others. The least I can do is share my vulnerable, personal experience if it helps to bring awareness to the disease, the severity, and the challenges. So I will.

Today I was given the opportunity to speak with Kristy and Leanne on CFRA 580, the Morning Rush. The media has been helpful to the Lyme crisis and it seems to be the best tool we have right now. I thank them for all they are doing to bring awareness to the disease.

You should be able to listen online at:

2016-08-04 Hour 3 of the Morning Rush from August 4, 2016.
31:00 mins

2016-08-04 Hour 4 of the Morning Rush from August 4, 2016.
11:50 mins

I realized I shared in the interview the best piece of medical advice I received. I was told to keep a diary of my symptoms when we had run out of options. I didnt like the idea at the time because I felt it made me focus on what was wrong and would fill me with reminders of bad things that were happening. I thought the worry that I was becoming a hypochondriac would be fed with such a list.

What the diary did for me at the end was gave me a snapshot of how bad things really were. There were so many more things happening that I ignored or forgot. But I was also told it helps give the doctors a much better picture of the situation. You are more certain of timelines, severity and frequency, all of which help a doctor diagnose. I realized that I was not focussing on the bad, I was developing the tools I needed to move on. I was helping myself the only way I could, hence helping the medical system help me...regardless of whether it was in the US or Canada.

And with that, I also share this advice:  Make sure you are doing all you can to help yourself if you are feeling unwell. They key things: healthy, healthy, healthy eating, daily movement, tons of rest, stress reduction and seeking help everywhere you can. If you can't depend on yourself to help, how can you expect it of others?   Easier said than done I know, especially when you are already feeling so lousy. But it is the most important piece of the puzzle. It determines how badly you want to heal. 

Some key contacts and resources, many of these were shared with me just before I was diagnosed and helped me get there.  So far through my journey, they still prove to be the most reliable. - Canadian online resource - US online resource

IGeneX inc. - US Lyme testing laboratory - Can be ordered by Canadian doctors and Naturopaths.

Dr. Maureen McShane - highly informed medical professional in Plattsburgh, NY and Lyme patient.  You can just google her and find out a lot

Hampton Wellness Centre - Dr. Marie Matheson - Naturopathic Doctor in Ottawa specializing In Lyme Disease

The FAR Clinic, Bountiful Utah - Research based alternative treatment, led by Dr. Brett Earl.  Their Facebook page has a wealth of info too.