Lyme Prevention - What you want to know


There is so much wrong and misunderstood about Lyme, especially when it comes to chronic lyme. And while many are lobbying for things to change, as they have for decades, the professionals insist that prevention is the key.  I always agree prevention should be a mighty tool and yet there is no comfort in this because the prevention information we are receiving is not only wrong, many pieces are missing.  So I am writing this blog to share beyond the traditional prevention tips that are out there.

Removal is key


Regardless of time attached, proper removal can be mean infection or no infection.  So I strongly encourage people to learn proper removal.  Many tools have been developed to eliminate the human factor.  They are supposed to protect us from making human error when removing a tick, but they dont always work in every situation too.  Many suggest that tweezers allow for human error, but I disagree.  I believe regardless of what you use you must understand the key principles to removal:

1) You must not stress, push, pull, twist, drop oil on the tick.  That will only cause it to get upset and possibly regurgitate the bacteria in to you.
2) it is more important to take you time to remove it properly that to rapidly rip it off however you can. 
3) You must get as low as you can to the attachment site to make sure to remove the whole tick, including the head.
4) If using tweezers apply consistently pressure and pull directly up. 
5) Clean the area with an antiseptic such as alcohol https://youtu.be/AmM5NmQMHVo


Aside from removal there are a few things we can do to prevent ever having to remove a tick.  I share these with you as they come from one of the most renowned Lyme literate doctors in the world.  And these are his recommendation for prevention that are not shared in Canada.

Permethrin

There is actually a product that is not only a deterrent, it will kill the tick on contact. It is not meant for use on your skin, but is highly recommended for spraying on your clothes.  It is an insecticide and as such, should not be inhaled.  But if you take your clothes to a well ventilated area (like outside) and spray with permethrin, it will dry within 2 hours and will bind to the outside of your clothing leaving no residual vapours that can be inhaled.


Health Canada does not approve this product for human use, so it is not as easy to obtain.  Yet the Canadian Paediatric Society recommends it (with the above qualifier from Health Canada).  It has been used in the military for years.  Ironically, it the same ingredient you will find in horse spray (and applied by humans) at a percentage of 50%. 

Since this is not promoted by Canada it is not always as easy to get, but not impossible.  So a few suggestions to acquire it: 
1) I have ordered it through Amazon, a few came to me no problem, but one product was held up at the border.  However, I have the same issue with many of my vitamins.
http://www.tickencounter.org/prevention/protect_yourself
2) There is a company in the U.S. that you can mail certain articles of clothing to and for a reasonable fee they will spray them for you and return them.  They are considered sprayed for up to 70 washing (which I am told is past the life of most clothing).  They will ship to Canada, however you must be aware that you will be responsible for ship both ways and duty. 
www.insectshield.com
3) You can buy pre-sprayed clothing at some outdoor stores (but mostly in the US). 
http://sectionhiker.com/treating-your-clothes-with-permethrin/
4) I am also told you can buy the clothing spray at some outdoor stores such as Bass Pro.


I understand the spray is very harmful to cats, as a word of caution.  There is no pretending, it is a chemical, so it must be something you consider all of the options, before using.  For me, I will be spraying all my families hunting clothes.  The alternative for me has been a lifelong, once debilitating disease that is not treated in my country (using most of my retirement saving).  Not really a question in my mind.  Here's more info for you to decide for yourself.

Repellant sprays
At the moment DEET is recommended as a direct on skin repellant spray for humans.  The good news is there are newer products on the market that are performing just as well as DEET at a lower percentage (20%) and are considered safer. 

Picaridin (sometimes listed as Icaridin): This can be obtained in Canada, just not everywhere.  You will only find it at 20% and can find at large box stores where insect spray is usually found and I know it is at MEC.  I have also ordered this from Amazon.


Avon Skin So Soft has it as an ingredient at 10% (which just means it many need to be reapplied more frequently).  However, I haven't found it in stores yet, but did receive it by mail quite easily. 

There are other newer ingredients that seem to be performing well.  I have not been able to investigate their acquisition in Canada, but I encourage you to visit the US Environmental Protection Agencies tool on their site.  It will not only help you find the right repellant for you, it will give you all the info you need re: application and longevity.  Great site.
https://www.epa.gov/insect-repellents/find-insect-repellent-right-you


There are natural alternatives but it is hard to say which ones work.  I cannot find tests or studies that compare them. However a natural solution has to be better than none.  I am sharing one for Dr. Josh Axe, a published doctor on the treatment of chronic illness and Lyme disease.  

The 24-36 Hour Rule

One last quick and important piece of advice is -  not to assume you are okay by the rule that says you cannot be infected until after 24 hours. The rule comes from the fact that it usually takes 24 -36 hours for a tick to feed and fill up on you.  It is generally understood that is the point where it "overfills" and the lyme bacteria can be regurgitated into you.  But that assumes so many factors, such as: 


1) It was not feeding on something else and fell off
2) It was not pushed, pressed on or moved in any way
3) It was not stressed at any point, when they're known to regurgitate 
4) The removal was perfect 

Image result for engorged tick sizeThere are many studies revealing infection from a tick can happen well within the 24 hour period, such as one that infection was as early as 6 hours. ( I will site these studies shortly) Myself, I believe the tick was attached for around 8 hours and I was infected likely for many of the reasons I mention above.  Another study has shown that some of the co-infections that accompany lyme, infected within 10-15 minutes.  Seek treatment, it is your next best prevention after a bite (another blog to follow on treatment info). 

Among other handy tips that are available on-line, you can always use a sticky roller (white) to see if you have any ticks on you upon return. You can put your clothes in a dryer and do a really good tick check before showering. 

Happy and Safe Outdoors My Friends!

My Message to Senators and MP's about Lyme

On March 6th, 2017 I was invited (by MP Karen Ludwig and MP Elizabeth May) to speak to Members of the Senate and Federal Members of Parliament about my battle with Chronic Lyme disease on Parliament Hill.

Here is what I shared...

Background: 
"Kristy Giles has been in park and conservation areas management for 20 years.  She has a BSc in Environmental Biology and studied the health benefits of nature for her Masters.   She is also a certified Health and Fitness Trainer, who was adamant about fitness in the great outdoors and motivating others to experience all that was possible in parks and natural areas.” 

With my background I had a good handle on tick and Lyme prevention.  Yearly training at work always told me “if you are showing symptoms, let them know your profession, you are high risk”.  Yet, while on a 300 km hike along the Rideau Trail, by myself, it all failed.  

One night, I had 5 ticks on my back and one embedded in an impossible place to reach.  I eventually removed it and promised myself I would go to a doctor as soon as I got back.  I tested negative for Lyme, was sent to Infectious Disease where I also tested negative for Lyme. 

Later that year, I struggled with many illnesses.  My doctor said, “I seemed to be catching everything that was going around”.  Some described me as the unhealthiest, healthy person they knew.  Symptoms continued to build and my doctor became more concerned. More specialists - more tests - revealing nothing.  

I slowly but consistently declined, I lost feeling in many parts of my body, I lost my balance regularly, my short term memory was almost non-existent, as was my reading comprehension. I could barely follow a story line in a tv show. I was reverting to things in my past, getting lost and confused.  When I spoke, the wrong words came out. I couldn’t walk in the morning without support and the fatigue…In a few short years I went from running an ironman to barely being able to walk. 

In one last effort to seek help in Canada, I visited a locum at my doctor’s office, wanting to investigate Lyme further. She wondered “why did I want it to be Lyme’.  After refusing to review my list of symptoms she could only suggest we revisit the tests I had done over the last 3 years and wait for more symptoms to develop in case it was MS or ALS.  This left me no option but to travel to the US and spend (what has now amounted to) 70K of my own money. 

I was diagnosed in the US with Lyme and two co-infections, bartonella and babesia.  I was put on a strong antibiotic protocol for an estimated 3 years.  I sought out complementary treatment and travelled to another clinic in Utah.  I have battled many of my physical symptoms and am now on a new protocol to help my cognitive and cardiovascular symptoms.  

After some recovery, I decided to return to my doctors office to see if they would support or follow my treatment.  A different locum insisted I go off my meds since they only treat with Doxy in Ontario.  I explained I was dealing with Chronic Lyme, which I had for over three years.  No response, no suggestions, no assessment of my basic health indicators. 

A few months ago, my original doctor returned.  Her positive reception gave me hope. I referenced my last year since diagnosis to which she replied, “I read through the history, no need to go back through it.”  I referenced Lyme to which she responded “that is between you and your specialist”.  No questions asked - visit over - third doctor in ON - no basic vitals taken or interest. 

Like so many, I have been denied any long term disability.  While I go further in to debt legally fighting that decision, I am one of the lucky ones who might go back to work.   Except, I work with and manage many people who work in parks, the outdoors and in the field.  How do I do that knowing I am responsible for their health and safety.  If they are bitten the chance of them getting diagnosed, treated or even acknowledged is immensely low? 

I have been an advocate for the benefits of nature for decades.  How do I do that now knowing I am sending people to a hazard zone, where they will likely suffer physical, mental and financial  trauma. 
How do I send them there when my horror started in one of our famed Provincial Parks and the Provincial Health Care has neglected me at every turn.  This year more than ever, we are all encouraging people to get out into our parks and natural areas.  I hope we are also going to be there for them if prevention fails. 

I agree, the science needs to improve, but first the humanity around this illness must improve.  This is not an illness without a cure.  It just needs to be recognized and treated immediately.  Clinical diagnosis can only work when doctors are willing to learn what Lyme looks like and what the early to chronic symptoms really are.  If the consequences of treating this illness and the fear in talking about it continue to be as severe as it is, the situation has little chance of improving. 

Please take note: I, among hundreds of others I know, are not part of the Lyme statistics in Canada.  Many have tested negative in this country and have been diagnosed or treated elsewhere.  If we had access to all of the numbers, I wonder the epidemic we would be facing. 
I feel like hundreds of thousands suffering are so dependant on the words I choose to share with you today.  You see, the unfortunate part of this illness is that for many decades, too many have been too sick to fight for what is right.  We are at a critical point where those that are able are using what little resources they have to create change.  I plead with you to recognize the desperate need this time.  For many this is their last hope, for themselves and those at risk.  Ultimately, our whole country is at risk.

Lost in Lonely Lyme

This is not how it was supposed to go.  I was very social, loved being out, active and involved.  I was incredibly active, competitive and adventurous.  I managed 50 properties and parks, taught health and fitness, loved the outdoors and inspiring others to do the same.  So how is it that I am sitting bundled inside on a snowy day, grateful for my puppy companion, trying desperately to figure out how I got here.  Is it possible that a one second move, an improper removal of a tick,  derailed my whole life, the existence of who I thought I was and who I was going to become? I dare say, it was.

I don't know this person, who just four short years ago was doing a 300km hike, in record time, by herself, training for an ironman and always rallying her friends to join her in something active and outdoors.  That person is so non-existent now, that it is almost hard to believe she ever existed.

That person now, has used up most of her savings on treatments, has no income, tries desperately to make plans that usually she can't follow through with, has a Doctor in the US that will only treat Lyme, a GP that won't treat lyme and another doctor, that won't treat Lyme, nor someone without a GP and an insurance company that denied her claim because her diagnosis' don't match and a government that for 3 years has promised to do something about this epidemic, but has done nothing. Lost and lonely doesn't begin to describe how that makes someone feel.

I never imagined life in a country where a major epidemic that I suffered from would be ignored, or a doctor who would say "I don't want to hear about it", or decades of hard work and commitment that would pay into a benefits plan that would deny with one quick stroke.  All of those simple promises that were made to me growing up in a privileged country have been denied.  This is not how it was supposed to go.  This is not how I was promised my life would be, not even close.

So I sit here fighting this lonely disease that stops me from doing all the active things I love to do, that keeps me from friends and social activities that I enjoy and makes me feel abandoned by a system that I believed in and yet, I feel blessed.    I have family who have stepped up and helped me along the way.  I have friends who have changed their schedules and accommodated my needs at every chance.  I have co-workers that check in and remind me there is a place when I am better.  Local businesses have offered assistance in amazing ways and community groups that have funded and helped in unusual ways.

As I sit here feeling abandoned and alone I realize I am anything but.  I am blessed. I am not alone. Somehow, at the other end of this will emerge me, the real me.  The new me that will from now on, will believe in my instincts instead of only the professionals that so badly let me down.  The me that now knows I don't live in a country with equal rights and care for all.  The me that will fight for a cause knowing that justice doesn't always prevail.  And the me, that will find a way to help others, much like me, who are lost and lonely.  I look forward to meeting that version of me when I get to the other end of this battle.  Until then, I will have to believe in all of that or I will become bitter and hurt by the system that let me down.

I have to believe there is a greater purpose in all of this. I have to believe that we deserve better. I have to believe justice will eventually prevail. I have to believe that someone with influence will soon listen.  I have to believe action will take place sooner than later.  I have to believe that this insane reality will end someday and solutions will be available.  I have to believe that someday, someone will admit they wronged us.  I have to believe it will all sort itself out, because until then I am lost and lonely in Lyme with only my blessings and my belief.


My Wish, my one and only wish - for Lyme

There is so much wrong with Lyme disease, the testing, the medical system, the insurance benefits, the symptoms, the treatment, the understanding, the financial burden and the list goes on. There is so much wrong that I feel overwhelmed with all that has to happen to find help for (likely) millions worldwide.  And yet nothing, almost nothing is happening.  
I have spent, days, weeks and months through my battle with this disease trying very hard to figure out where and how to concentrate my efforts to find help for those needlessly suffering as I have.  A fight that would not be so hard if people understood this disease better, if doctors weren't being charged after treating appropriately, if the regulatory bodies didn't restrict the appropriate treatment for this illness, if researchers could get the science out showing most tests and treatments are inadequate, if insurance didn't decline those suffering, if we didn't have to travel to another country for treatment, if we didn't have to remortgage or use our savings to find health, if people could truly understand what it feels like to suffer from Lyme.  And that's when I realized what had to happen to solve it all.  
If I had one wish and could only be granted one wish for Lyme patients, it would be  this.  It would be that people could see, feel and understand the symptoms of Lyme. Because if they could then:

- My husband could have felt the pain in my joints and muscles, because he would have not let me convince myself, it was from a workout or lack of
 
- My doctor would have felt how hard I had to work to breath to just walk up my stairs when a year before I had completed an ironman 
- My coworkers would have not passed off my balance, memory and comprehension issues as me rushing, overworked and too busy 
- The cardiologist would not have accepted my maximum 9 mins of stress testing as normal, seeing I could run, bike and swim for 7 hours without fatigue before. 
- The health units would not claim that a tick had to be attached for more than 24 hours, when the Lyme, Babesia and Bartonella entered my body after 8 hours, because I unsuccessfully detached it cleanly. 
- My friends who saw my shaking, twitches and weird illnesses could have known how frequent they were and not let me dismiss them 
- I could have realized how slowly I had declined over 3 years and not made excuses for the 50 plus symptoms I had acquired 
- The list of diagnostic symptoms for Lyme can be realized years before they are so extreme, you can no longer deny what is going on 
- The insurance companies could wake up in my body and know what it is like to not be able to get out of bed easily and need to hold railings and the walls to be sure your body can support you 
- Anyone I encountered could feel a dose of the extreme fatigue, that is unlike anything I have experienced in an ultramarathon, endurance race or the hardest workout, and to know the illness, nausea, dizziness and weakness that follow rest, only making it worse 
- Every specialist could feel the appropriate symptoms that fall short of being detected by the diagnostic testing 
- False positive, false negative and useless testing would be unnecessary 
- Every employee could feel what it is like for their staff to work with so many things wrong and know they are giving all they have to remain committed and faithful 
And if my one wish that others could see, feel and understand the symptoms of Lyme, is too much, then I could make it less.  It would be that I (and other Lyme sufferers) could realize how bad symptoms are before its too late...the symptoms that develop so slowly over time, I was able to dismiss them, to believe the multitude of doctors and specialists who said I was fine and allow me to blame myself for everything that was going wrong.  And in that, to know the longer you deny this disease the harder it is to battle it.  Oh how hard the battle is.

So if I break my wish down into tiny actions, it becomes this: 
- share my mistakes 
- share what is wrong with the system 
- share solutions  
and most of all share hope...
My hope that one day everyone will understand Lyme and not because they have experienced it.  But because they know how it ruins lives, how valid it is and how important it is to believe, diagnose and treat immediately.

First Do No Harm...I will take just listening?


I know when I was bitten; it was on a 300km hike, through a high tick infested area with one day resulting in 7 ticks on me, one engorged and attached.  It was in a tough spot to reach, next to one of my shoulder blades and I was alone and had difficulty removing it.  As a profession, I managed 50 parks and natural areas and was annually trained on tick and Lyme prevention.  I was always told, "just let them know your profession and you will be treated for Lyme instantly".  I promptly got sick after my hike and was sent to an infectious disease specialist.  So, how is it that I ended up with Chronic Lyme?  I can blame myself a little but I also have to lay some blame on the "system".  It fails people with Lyme every day.  If it can fail me, no wonder it is failing hundreds of thousands annually.

Initially, I thought the breakdown was the fact that after 2.5 years of my family doctor sending me to every specialist around, she went on leave for a year and a half.  She always took me seriously and often referred to the fact that she felt I played down my symptoms.  I think I did so because I was embarrassed to always be going in to see her with a new issue.  I went years without seeing her before and all of a sudden everything seemed to be going wrong.  I was always very active and loved adventure and endurance sports. I took very good care of my body and ate incredibly well in an effort to prolong how long I could do these types of activities.  Months after she left on leave, things started to decline rapidly.  In two years I went from participating in a half Ironman to having trouble walking for more than 5 minutes on a treadmill, slowly.  I had lost feeling in many areas of my body and the pain and stiffness felt as if I ran a marathon daily.  

It was when it hit my brain that I could no longer deny something serious was going one.  Inreflection, I should have acknowledged that fact years earlier but when professionals keep telling you how healthy you are, you start to think its all in your head.  Who was I to argue with cardiologists and internal medicine?  At that point, I was resorting to memories from decades before, as if they were recent.  I used old email addresses, went to old work locations and would forget something before I even picked up the pen to write.  I couldn't remember directions to a location I had gone to for years and seemed to have no control of my left arm.  I had trouble speaking because words escaped me and then the thought would leave while I searched for the word.  I should have been more concerned with the physical symptoms but as anyone who participates in endurance sports knows, pain, stiffness and mobility issues often come with the territory, so I started to tell myself that the years and events had caught up with me.  Regardless, not be able to walk first thing in the morning, because your feet and legs won't support you, should have been a sign.  I would walk down the hall holding both walls until I was able to get better mobility to get down the stairs.  

It was thanks to a colleague who directed me to a specialist in the US. I was told that I could seek treatment there, I would just need the support of my GP back in Ontario.  I went into my clinic asking to see the Doctor filling in for my GP.  I have to admit, I never expected the encounter I had, in my wildest dreams.  it was the sort of thing that only happened in movies.  I had been warned that Doctors in Ontario and parts of Canada don't agree with Chronic Lyme or Lyme treatments, that they may hesitate to support me.  I thought " but they will see the years of specialists I was sent to and think, well it worth investigating", right?  Wrong!  She snickered when I spoke to the cognitive issues.  She asked me "why do I want it to be Lyme?"  To which I replied " I don't.  But it's something and I need to resolve before it gets any worse."  She suggested we start back at the beginning and redo three years of specialists visits.  I said to her "in those three years I have gone from running seven hours to walking minutes - do you not think something is really wrong with me?"  She responded "yes" and started to walk out of the office and stated, "I hope you find what you are looking for."I started to cry and wished ever so badly my doctor wasn't away.  
I went to the US and was diagnosed with Lyme and 2 co-infections.  I traveled to another clinic in the US, that also supported that diagnosis and spent most of my savings on treatment.  As I recover back in Canada, I had asked the Executive Director of the Clinic for another doctor.  They refused and insisted I see the same doctor.  After several attempts to talk to him about it, my emails were ignored.  Shortly after this, I heard that Doctor was gone and another was replacing her/my doctor.  So I booked an appt to see her.  My blood tests were showing issues and she quickly told me I had to stop the meds I was prescribed in the states.  She stated that "In Ontario, they treat Lyme with two weeks of Doxycycline" to which I responded, "yes, for acute Lyme.  But this is Chronic Lyme, I've been battling it for over 3 years." She stopped typing, but did not look at me and shook her head (ever so slightly).  I had brought all my paperwork from the US and she scolded me saying, "I don't have time to go through all of this, You will have to make another appointment."  Thankfully she did go over a brief portion of the history and made some notes in the computer.  

The one major credit I will give this doctor is she called me back in the following week because she had done some research.  Not research on Lyme but on the medicine I was taking, since it is not available in Canada.  She felt it was too strong and I should never take it again.  In consultation with my US doctor, we waited for my blood tests to return to normal and I decided to resume the meds because they were the first thing I had done that was making a difference with my cognitive issues. 

Months later my blood tests were showing other issues not related to the medicine but likely related to the Lyme.  I made another appt with the clinic and was pleasantly surprised to find out my Doctor was back.  Oh, what a relief!   I had waited a year and a half and finally, someone who knows me will be able to help.  I figured she would be shocked at what it turned out to be and even more shocked to hear how bad I had gotten from it. I have to admit I was so thrown off by her reaction that I was not prepared to ask for an explanation, that I still would like to this day.  She was ever so friendly and acted happy to see me.  She asked what I wanted to talk about, to which I said, "well, its a really long story."  She replied, "no, I read through your history, so no reason to go over that."  That "history" would be the quick notes the last doctor made while in a hurry to not go over my 15-minute appointment. I was a little stunned, so responded with "well, then I guess we should talk about my blood tests." I referred to the Lyme and how supplements can affect the Lyme.  She responded with "that's between you and your US specialist." I sat stunned and it was at that very moment I realized how abandoned and in crisis patients were in this province/country/world.  

I had traveled through 8 months of treatments and recovery, praying for the day my doctor would return. She knew me, she believed in me, she never let me down...till now.  How could anyone deny I had Chronic Lyme, the treatments were helping.  It couldn't be in my head, I was improving.  I wasn't asking for help, just support.  At that moment, I realized that all the other stories I had heard about Lyme patients being abandoned, shamed, ignored and mistreated by their own doctors were true.  If my doctor, the best doctor I had ever known, could not even care to listen to me, hear me or find out what was going on, any doctor could.  I have to admit at that moment I should have asked for an explanation, but I was too stunned.  This isn't even close to how I expected this appointment to go.  I also knew this process had made me harder, because I at least made it to my vehicle before I started to cry.    
There are a lot of theories out there as to why Doctors are so scared to deal with chronic Lyme.  I personally know of two in Canada who have been charged or warned for treating Lyme and others who diagnose and believe in it but have to send patients to the US to avoid losing their license.  The Minster of Health sent a letter to the College of Physicians and Surgeons of Ontario stating that Doctors are to diagnoses Lyme based on clinic information because they have finally realized that the blood tests are not accurate.  They Canadian blood tests only detect one of over 33 strains in Canada and three strains in the US.  So it only makes sense that there are so many false negatives.  But this letter is not enough.  The fear, the charges and the risk of losing their license is so great, they don't even want to hear a patient speak of it.  How are they to learn the hundreds of symptoms that evolve over time if listening scares them?  Does that not constitute neglect?  You have a patient in pain, losing their mind and declining at a rapid rate and you don't want to hear a word of it?  You don't even want to listen to their story even if you do or don't believe it? If anything, do we as patients, not deserve to be listened to?  

In all but one of those appointments was my blood pressure, temperature or blood oxygen level checked.  All of which had been problems in the past.  But that's okay, like the majority of Lyme patients I have learned to check those things myself, much like finding help and treatments.  But I still believe if there is anything I deserved in this process it was for someone to just listen to me for one minute, to hear what the symptoms are, what treatments I was seeking or how I am doing now. But no one in the medical community will listen, truly listen.  We are so far away from "first do no harm" if no is willing to even listen.  

If you don't believe me, you just need to listen to Lori Dennis, a Registered Psychotherapist who just released the book "Lyme Madness".    Unlike many Lyme patients who are just too sick or tired to fight, she lived the craziness through her son's battle and was so horrified at the medical community that she wrote about it.  She is able to articulate what seems so confusing to us patients.  IN her book she states " Thanks to the CDC and IDSA, Lyme sufferers are forced to be warriors on this medical odyssey - navigating this disease primarily, on their own, with very little guidance.  It's time the medical community stop negating and debating the existence of this chronic disease and start listening to the sufferers and their suffering.  Before long, they too will be affected. Maybe then they will get off their high horses and pay attention to this undeniable level of anguish and affliction." 

I really don't care what Doctors believe or don't believe.  I really don't care what the big agencies say about Lyme disease.  At a minimum, as a Canadian Citizen, who pays into a provincial health care system, I deserve enough care that someone takes the time to listen.  At a minimum, do I at least not deserve that?  

The front of Lori Dennis' book "Lyme Madness" summarizes it best "WHERE MILLIONS ARE SUFFERING...AND FEW ARE LISTENING"

Its Not Just About the Lyme


It may sound crazy to you but there is no one in this world praying harder that they will be sicker than sick - than me.  Who would wish that on themselves...well, me for one.  But for a very good reason and future health being the main one.  Let me explain.

I finally have a Canadian doctor working with me that is part of the ILADS group.  That stand for International Lyme of Associated Diseases Society.  ILADS who promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.  They hold conferences and share cutting edge research and information among themselves to treat Lyme but also similar illnesses.


I guess I'm not sure why every general doctor would not want to be involved in this if Lyme is becoming and epidemic?  Regardless, I have finally been accepted by a medical doctor in Canada who is part of this Lyme literate group.  It is the same group that my doctor in NY is involved with and the naturopath in Ottawa.  So everyone is on the same page.  But the Ontario doctor gives me access to the Ontario Health System and is obviously much more accessible geographically.  However, the wait has been a year and she is so booked up it is 4 months between appointments, so I still need to get my family GP on board, who hopefully returns next month (fingers crossed - she has been away for a year and a half of this journey).


So, in my second visit, I learned that there was new research being shared.  It was not published yet but had been presented at the last ILADS conference.  The finding was that there is a parasite wreaking havoc on the babesia strain (one of the co-infections I am still battling with).  You may remember it being referred to early on as "that bastard".  It affects you neurologically, overtakes your blood and nervous system and is very, very hard to attack.  You may recall the thick/double walled cells it develops and the biofilm that surrounds it that makes it hard for the antibiotics to penetrate the cell.

Well, the finding is that the biofilm is actually created by a parasite that infiltrates the same cells as the babesia.  I was actually shown a picture of the cells with the parasite within (microscopic pictures of course). Pretty cool when a doctor involves you enough to show you that.  So what this requires is a medication added to my existing protocol and a few more supplements.  The protocol I am on is exactly what both the US and Canadian doctor recommend for me.  So, the addition of an antibiotic  that I rotate with the existing one, should attack the parasite.

Its been interesting to me, because I am part of a forum where a Lyme literate doctor, in Calgary has been one of the leading experts in Lyme but seems to specialize in many chronic illnesses and mysteries.  He often refers to many parasites and how they are the problem or add to the problem.  It has shocked me how many parasites are out there and can wreak havoc with our health.  It seems to me if that is a major cause of many of our mysterious illnesses, we are actually doing worse than 3rd world countries who seem to have a handle on common parasites and treat accordingly when they can.  The trouble is sometimes they dont have the means to.  We can - yet we dont go there????  Anyway, I would recommend to anyone in the west with a strange or chronic illness to check him out.  I think his wait time was three years but might be closer to 1 now.  He seems to be amazing at investigating the multitude of reasons why an illness is going under the radar.  He has been known to direct many people in the forum in the right direction.  He has an incredible sense and understanding for the struggles of thousands. He has a lot to offer if more doctors would listen.

I am told as I add this med, I will get quite sick from the die off.  But in one sense the sicker I get the better it is working.  So like I said, "no one is wanting to be sick more than me."  It seems silly to wish that but continues to be a pattern, in this recovery.  It is interesting this recovery.  Its a long road and no joke when they say the recovery is almost worse than the disease.  I really thought by this point life would be back to normal.  I am so happy it's not where it was 10 months ago.  I just became so consumed with healing and life being normal that I have dont nothing but since then.  But I guess I still have a piece to go, so my be my time to reflect and adjust my mindset.

I am trying to let go of controlling this outcome.  I need to live despite where this illness finally takes me.  I heard a speaker once when speaking about her cancer remission say she does not say she overcame cancer, she says she lives with cancer.  She said that way there is no fear if it "comes back" or what it is doing to her.  She chooses to live a happy, healthy and successful life with cancer.  I didn't like that thought process at the time but now understand it.  When I said earlier that I was going to win the war with these bastards, it meant I was going to be Lyme free some day.  I realize now the war is not won when I am Lyme free, the war is won when I live a happy, fruitful, successful and quality life.  And that I am going to do.

So here's to much sickness ahead and much healing further ahead.  I still am on route to win the war...those bastards are not going to get me down.