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, May 15, 2017

My Open Letter to Dog Lovers About Lyme

In the middle of my first year of recovery with Chronic Lyme, after being misdiagnosed, I decided to get a puppy.  You spend so much time alone and feeling ill that many sufferers find comfort in a furry friend.  Our previous beloved pet was a Border Collie and Labrador Retriever mix.  She loved to run with me, hike, kayak, atv, many of the things I could no longer do.  But we decided a similar dog mixed with a quieter breed would be appropriate and fell love with "Aggie" a Border Collie/Great Pyrenees cross.

Having a dog was great motivation to get up and go for a walk most days, regardless of how sick I was.  She was great company and would just hang out beside me when I was too ill to do much else.  One day following a hike, I discovered an engorged black legged tick on her.  Unfortunately, it was days before her 3 month appt where she would have started the preventative tick/Lyme treatment.  I saved the tick to show my vet and she felt it was not a concern because it was not engorged (although it did seem so when it was attached).  Regardless, it was too early to test and I was sent back home with preventative meds and the tick. 

After a month I became concerned with her loose stool and called the vet, concerned it might be Lyme. The amazing thing about vets is they have the best understanding of Lyme.  The treatment animals receive by the veterinarian community is far superior to what any human receives by the medical community.  While I was serving as a lyme patient witness to the Federal Government, one MP asked the expert Doctor "are you trying to suggest that the data and treatments animals receive are better than what humans receive?" to which the medical Doctor responded, "I am not suggesting, I am telling you it is a fact."

So when the Vet told me loose stool wasn't necessarily an indicator or lyme, I let it go.  I was a little surprised as it can be a common symptom in humans, especially since fever and the flu are early symptoms of Lyme in humans.  But she was a young puppy, eating many new things and new to me, so it was hard to determine what was out of character for her.   I also knew I was probably hypersensitive because I didn't want anyone to struggle as I have with this disease.  

A few months later, I knew it was getting to be too much.  I called theVet and insisted she be tested for lyme.  A quick in clinic test and she reported "I guess your instincts were right - she is positive for lyme."  

And here becomes the very important part of this story:
The Vet then stated "typically we would not treat her with anything since she is not showing symptoms, just the presence of lyme in her system.  So I have to ask why were you so adamant she be tested for Lyme".  That is when I stated it was because she is symptomatic for Lyme.

She is showing many of the same symptoms of Lyme that were missed when I first started to get sick.  

1) She was panting and feverish more and more.  Some nights she would get me up to let her outside to just sit in the cold.  
2) She was happy to go for a long walk and play hard, but seemed to be very lethargic the following day or two
3) She drank more water than any dog I knew
4) Her shedding was increasing
5) Her eyes were bloodshot regularly
6) She appeared clumsy and would trip once in a while
7) Even though she wanted to jump up on a couch or something she seems hesitant and it looked like she had to coax herself to push off to get up
8) Loose stool that seemed like it was getting better, then return

The one thing I remember clearly with this my illness is that just as you think you are getting better, it all of a sudden returns and maybe worse.  It was a cycle, that makes you think you are better, then sick with something else.   So in a dog it is even harder to detect because the cycles make you think they are unrelated and our furry friends can't let us know how much they are suffering.  A dogs natural instinct for survival is to hide suffering as that would make them vulnerable in the wild.  So you can never expect to know how bad it really is and well, Lyme is called the invisible disease for a reason. 
Aggie after 6 weeks of antibiotics.
Symptoms are gone and she is doing well.  

The vet explained that the symptoms they are looking for are limping, stiff joints, loss of appetite, etc.  And that is right, but for me that was three years into my diagnosis.  It is chronic then - recovery is much tougher at that point.  We want to catch this disease early, so it is treatable and responds to antibiotics.  I was adamant she receive treatment.  I was confident the signs were early Lyme and I don't want what comes next in the progression of this illness for anyone, human or animal.  

I share this with you because Lyme is still a very misunderstood disease.  Humans are treated even less than animals in Canada and once its chronic cannot get treatment at all in this country.  It was hard for me to be sure I wasn't over reacting.  She also had Great Pyrenees in her and I was less familiar with that breed.  Some of the symptoms at first could have been attributed to her breeding.  But they progressed and seemed more extensive than they should be.  And I have been there, I too passed them off many symptoms for a while and look where that got me.  I was not going to have the same thing happen to new best friend.  

The other thing I know with Lyme is many of the symptoms seem minor on their own, but they start to build and add up. You need to keep a running list of what is happening.  Minor symptom after minor symptom will start to add up over time and you may have a valid concern.  Lyme symptoms were very hard for me to explain to my doctor for years.  It is close to impossible for a dog to let us know what is happening before its too late.  I wish Lyme was better understood and treated in humans in Canada because I believe this information could also help our furry friends when they can't describe what they are feeling.  

If your dog tests positive for Lyme, please don't assume they are not symptomatic.  It is a horrible, hidden disease.  Vets are not only better diagnosticians than doctors, they are also very willing to properly treat animals for the illness,  yet it is still complex and sometimes misunderstood illness. If anything just be aware.  You don't want your pet to suffer silently. 

One other note about Lyme: don't assume that because they were treated with an antibiotic that the illness is gone.  The vet told me that day she had a dog who was treated but the illness returned.  She wasn't sure whether the dog had been bitten again or not.  I explained to her the there are many scientific studies proving the persistence of the Lyme bacteria.  Treatment can attempt to kill it all but fall short.  The longer someone has the illness the harder it is to treat.  It is possible for someone to recover with antibiotic treatment but have it still return.  It just means not all of the bacteria was killed off.  So monitor for symptoms long after treatment, just in case. 
This letter is dedicated to our previous, lost, loved dog, Keesha, who we now know suffered in silence, for years, with Lyme.  I am sorry my friend that you struggled more than we knew.  If I knew better, I would have done better.  Now I know better.  You are so missed. 

Tuesday, May 2, 2017

Acute Lyme Treatment - What You Must Consider

Image result for motivating others to learn from my mistakesI have spent my last year of recovery desperately trying to figure out what I did wrong and how I fell through the cracks, not receiving appropriate treatment for lyme and missing diagnosis.  It took a while to fully accept that I did not fall through the cracks. This is how treatment is missed and ignored in the Lyme world, over and over again. My story is identical to thousands of others.

Author Lori Dennis, Lyme Madness explains more:

I think the most important part of Lyme is that each patient should have all the information so that they can seek the help of a medical professional and make appropriate decisions knowing they have considered all the facts. Lyme is curable in its early stages, so it should be something that is ruled out first, not diagnosed by process of elimination.

Things to consider:

Canadian's are following Infectious Disease of America (ISDA) guidelines which have been noted to be outdated.  They are based on old science.  And since then there are hundreds and hundreds of studies that support a different protocol, that has yet to be considered.

The International Lyme and Infectious Disease Society (ILADS) have approved guidelines that include science and specialists from all over the world.
They hold regular conferences, share recent scientific findings and collaborate on treatment protocols and success.  The guidelines clearly explain where the old guidelines fall short.
They typically support a slightly longer course of antibiotics to solve this illness (in its acute form).  Pretty simple solution if you ask me.  Scroll down to Executive Summary:

Many people do not receive treatment after a bite, but if they do it is often two doses for one day of doxycycline.  It should be known that this is based on one study that is over 10 years old and only shows treatment of the lyme rash, does not prove to kill the Lyme bacteria.  Oh and it only cured the rash in 80% of a very small test sample.  I enquired about this further with a Chief Medical Officer and was told, it is really considered a prevention (assuming Lyme has not yet entered the body), not a treatment.  Many people believe they are being treated.

Another thing you have to make note of when accepting the one-day dose is that it will likely mask or delay many of the Acute Lyme symptoms that would warrant treatment.  It is meant to alleviate the rash and that is the one symptom that will encourage doctors to treat Acute Lyme.

I lived it myself and I hear it all the time.  The early symptoms, typically after 30 days, are incredibly easy to pass off, make excuses for or consider part of aging.  They are so subtle they are often mistaken for a stressful period, being overtired or the feeling that you are fighting something.  It never amounts to enough for anyone to get concerned.  My best suggestion is if you know you had a tick bite, you should demand treatment with the tiniest, most subtle change in your health.  It is likely related and with a course of antibiotics early on, it is very easily cured.  Don't waste time and wonder, because it can become too late.  Note: More than half of Lyme patients, don't even know they were bitten (that's a whole separate conversation).
See guidelines for appropriate treatment:

Not only has the testing proven to be too inaccurate to provide a diagnosis, it is not recommended for 4 weeks after the bite (it tests for antibodies that take time to develop). At that point early treatment would have already resolved he issue.  The Ontario Minister of Health sent a letter to Doctors last year starting that testing is to only support a clinical diagnosis.  You must rely on symptoms and risk to determine treatment.

See my previous blog on Prevention to learn why you do not want to rely on the 24-36 hour rule to wait for treatment. This is a protocol many doctors and hospitals insist on that; the tick was attached for that time before treating.  Science is showing that is not reliable and you should not assume you have not been infected in less time.

Lyme is an illness that should be considered first.  It is very easily treated early on with a very common dose of antibiotics.  Patients often seek treatment after they have gone years ruling to everything else.  That is when it is too late and at that point doctors cannot legally prescribe in Canada, the dosages that are required for remission.  This is one disease you must be your best advocate for. If you do then you will not have the same regret I do, when I let doctors belittle me and convince me I was crazy when I questioned Lyme.

I hear it time and time again...patients are told they are self diagnosing, reading into their symptoms or don't understand Lyme.  Learn from me and millions more who ignored their gut instincts and let the professionals convince them differently.  They were wrong. Unfortunately, with this illness, when it gets bad enough to prove you were right and they were wrong, its too late.  Just remember, if the professionals are wrong, there are no long term consequences to them.  The only one who suffers for the rest of their life, is you.  If I could do it all over again, I would never give them that much power.  Trust you, trust that you deserve better for you and your health, trust that you deserve respect. That's my basic desire for those suffering with this illness (now and in the future) - the respect they deserve.