Showing posts with label Dr Murakami. Show all posts
Showing posts with label Dr Murakami. Show all posts

May 19, 2013

A PERSONAL INVITE

local friends, a lyme awareness evening is coming to tsawwassen, BC and you are invited to attend! it is an evening that is designed to raise lyme awareness and educate GPs, vets, and the community at large.


Thursday, May 30 at 6:30pm
The "Little" House
5061 12th Avenue
Tsawwassen, BC

good friends of ours, sharon, mike and karen, have worked very hard to make this event a possibility. this invite is accompanied by sharon's personal story. she has given me permission to share her story.

but first, a bit of background.

sharon and mike have become good friends. we came to know them when they quite literally arrived on our doorstep one afternoon feeling as though they were out of hope and out of options. they suspected that sharon's debilitating symptoms were caused by lyme. after all, she had been bit by a tick in nelson, BC and had had a peculiar rash. yet, doctors dismissed this finding when her Lyme test returned a negative result.

i remember our first meeting as clearly as if it were yesterday. sharon's pain and suffering were palpable - and i was all too familiar with the desperation, the confusion, the sense of abandonment and the fear that her and her husband felt in the face of her desperately declining health and not knowing where to turn for answers or help
and 
i didn't know how to help. at that time the only viable treatment options were south of the border. it was a difficult day. it stayed with me for a long time. 

to see your life or the life of your loved one slipping away and be abandoned by your doctor and medical system is nearly inconceivable. yet, this is the reality of a lyme patient. 
this. must. stop. 
yet, as long as lyme is regarded as a four letter word in our health system and the general public is not adequately made aware of the risk, sharon's story will not be the last.

preventing this from becoming someone else's reality is the fire that fuels those of us with lyme to so doggedly and determinedly spread awareness and educate the public.
please come out and show your support and learn how to protect yourself and your loved ones. 
ticks know no boundaries. 
everyone is at risk.



SHARON'S STORY


Dear friends and family,

As many of you know, I have been unable to work since February 2011 when a mysterious ailment had me in emergency room with excruciating pain, leading to a substantial decline in cognitive ability thereafter.    

Hundreds of tests were run for every obscure disease under the sun.  I was hospitalized twice: once for four days, and then again for a two week period where doctors ran intensive tests.  Eventually at one of the many specialist visits, Lyme disease was suspected.  The standard initial Canadian Lyme test was done and came back negative (we have since learned that this particular test is highly inaccurate).  After seven months of going from specialist to specialist, a friend who had gone through a similar experience consulted with me.  Mike and I ordered the tests he recommended from a private certified lab in the USA.  We reviewed them with the Doctor from the lab and were informed that I was 98 percent positive for Lyme disease.      

In the process of trying to get help, we lost our family’s doctor of 20 years.  Doctors are reluctant to treat and most lack the knowledge of how to do so.  At a time when I was in immense pain, I felt abandoned by the Canadian health care system.  Mike’s employer gave him permission to work from home three days a week in order to care for me, with family and friends filling in on the days he couldn’t.  It was a very difficult period.  We will be forever grateful for the people that organized and helped us with meals, prayers & errands during this time.      

We were advised by others that I would need to go the United States for treatment by a Lyme literate medical doctor, but I was too ill to travel.  In September of 2011, Mike and I found a Naturopath who could prescribe antibiotics (plus support supplements) and since then I have been receiving treatment.  Getting better is not an easy process.  If my medication is reduced for any length of time, I rapidly regress.  Some people never recover and others spend decades trying various expensive treatment protocols.  Our own costs have been substantial.  However, there are a few bright moments such as this past weekend.  Accompanied by Mike and others we traveled to the Victoria Legislature Buildings for a Lyme awareness event.  I met others with Lyme disease and spoke with Elizabeth May (MP), Lana Popham (MLA), David Cubberley (retired MLA) among others.  The drawback to a day such as this is many days afterwards in bed.  

I am not alone in this situation.  There are hundreds of people with Lyme disease in BC.  Many never saw a tick or knew they were bitten.  It's not just a disease that attacks campers and hikers as people have been infected in their backyards gardening, on school field trips or just walking their dog.  We know of people in every area of the lower mainland with Lyme disease.

A friend of mine, Karen, whom I met through The Vancouver Lyme Support Group, was the interior designer of “The Little House” in Tsawwassen.  They have graciously offered the use of the building and their assistance to hold a “Lyme Awareness Evening”.  

On Thursday, May 30th at 6:30 pm we are inviting Dr. Murakami (a retired BC Doctor and Lyme expert) to speak.  The evening is designed to explain preventative methods, early signs and symptoms, late symptoms, how to properly remove a tick so that it doesn't infect one further, treatment protocols, et cetera.  Gwen Barlee, the policy director for the Vancouver Wilderness Committee, will speak to the political issues surrounding the disease.  Mike has been asked to speak to how this specific disease affects a family.  There will also be a Q and A.  A poster with more details is attached.  

It would mean a lot to me if you would come out to show your support.  Thanks for your time.  

Sharon

May 26, 2008

LYME LIFE FLIGHT

We’ve made it safely to California and I’m exhausted. It has been a day rife with a wide range of emotions. Fear. Relief. Sadness. Joy. Pain. Disbelief. Stress. Surreal.

Surreal... probably sums it up best. The whole day has just felt felt really surreal.

It's hard to wrap my mind around the fact that it has really come to this...leaving my country for another country in order to get the medical treatment I so desperately need. And then of course, flying out in a Lear jet amidst a media circus certainly adds to the unreal quality of this reality.

Just shortly after noon today we flew out of a private terminal near Vancouver airport. We were met at the airport by TV cameras and reporters. As well, several folks from our LD Support Group showed up to send us off in style. I was overwhelmed with the support of these folks especially given that most of them are sick and lacking the medical treatment they so desperately need too. I feel guilty about having this opportunity when there are so many others who could use it too.

Dr. M was there too. He will be flying to California with us in order to provide medical care to Marie during the flight. While we waited to board I did a fairly lengthy interview with a reporter from Global News.


Then it was time to leave Vancouver for Victoria where we were to pick up Marie, her dad and a nurse before we set out for our final destination in California. It was a brief 13 minute flight to Victoria - I must admit that was pretty cool. When we landed near Victoria, we were able to leave the aircraft and head into the terminal for our "30 minute layover". Much to our surprise we were met by an onslaught of media there as well - TV cameras, reporters, several radio stations, and columnists from various newspapers. I was overwhelmed to find fellow Lymies from the Victoria LD Support Group had shown up in full force to send us off with their blessing.

It was all pretty intense...light bulbs flashing, TV cameras looming in your face and questions firing from all directions. Given the circumstances associated with this flight, there was such a high level of emotion bearing down on my overcrowded brain about WHY this was happening as opposed to WHAT was going on. Needless to say the WHY was pretty much my sole focus of the day. However, I must admit, that I did have the fleeting thought that hopping on and off a private jet with media recording your every move must be somewhat like the life of a celebrity. And now, given that I’ve just heard on the news that George Abbott (Health Minister) is making references to the ‘mental’ stability of us Lyme Life Flighters, well I fear the celebrity I can most be likened to is Britney Spears - apparently, we're both nuts and love to shop at Walmart. Ha.

Marie's dad, Jay and Dr M.

The flight itself was more something to be endured rather than enjoyed. For all intents and purposes, each of us Life Flighters (Peter, Marie and myself) are all bound for the great unknown, not by choice but because our hands have been forced by a hostile medical system that is combative and refuses to assist us in our quest for health.

Me and Peter


It is hard to put into words how I feel about this. Anger, disbelief, frustration, panic, dumbfounded…and I can’t imagine being in Marie's condition and facing this all. Marie is in bad shape. She needed constant monitoring and support from Dr. M. Seeing her in this condition brought me to tears several times. I have been where she is and I know what that kind of pain feels like and I can't imagine dealing with it amidst all the emotional upheaval of leaving family, friends, and home.

The rest of our flight went smoothly and time passed quickly (if only I could fly in Lear jet all the time!). Upon landing at the airport, there was a private transport waiting to pick us up. But before we were able to get off the plane, a customs officer boarded our little jet to check our passports and such. He was this gigantic guy with humongous muscles. His intimidating bulk filled our tiny 8 passenger jet. He could barely maneuver as he leaned in to check our passports and verify our citizenship.


He then inquired as to the nature of our visit to the US. When he was told that this was a medical flight, and that 3 of us on board were very ill, a look of sheer panic washed over his face and he broke into a sweat.


"Y'all aren't contagious are you?" He queried in alarm.



We all stifled a laugh. The look on his face was priceless and well, after the tumult of emotions, we needed to relieve some of our angst with a laugh or two.


Sorry, Big Guy, no offense.

The van took us directly to our hotel. And well, I pretty much collapsed in a heap on the bed and several hours later, I'm still lying here, re-living the day, my head spinning, still trying to wrap my foggy brain around it all.

I really can't believe that it has come to this.



January 9, 2008

DEAR DR. MURAKAMI


This is Dr M.

He is the doctor responsible for finally putting a name to the nemesis that was systematically destroying my body, mind and life.
He’s an amazing doctor and an extraordinary person.
I hold him with the highest regard. I don’t just consider him my doctor... I am honored to call him my friend.

For many, many years Dr M stood alone in the medical community waging a one man war against both Lyme Disease and the ignorance of the medical community towards it. He has saved countless lives because he bucked the system and chose to do what is right as opposed to what is convenient.

Dr M has endured and fought against the ignorance of the system for many, many years. The incredible stress of being relentlessly harassed by the BC College of Physicians and Surgeons, finally took its toll on our dear doctor and health issues forced him into "early" retirement. And well, you know, he is 76, so I suppose he's certainly 'allowed' to retire.

Unfortunately, his retirement means that we have lost the only doctor in Canada that was willing and skilled enough to clinically diagnose LD...and then brave enough to buck the system and prescribe individualized treatment.

He's a maverick. He's a genius. He's a skilled physician. His patients were all lucky to have him. And we acknowleged it and knew it.


And Health Canada and the BC College of Physicians and Surgeons were lucky to have him. Too bad they won't acknowledge that or admit it.

But I believe that day will come.

But until that day comes those of us with LD will be forced to look outside of Canada to find a doctor who can properly treat our disease.

True to his character, Dr M has not let retirement stop him in his determination to spread awareness and educate physicians about LD. And even though he is retired and I am no longer his patient, he still takes the time to check on me...in my heart, i will always be his patient and he will always be my doctor.

Dear Dr. Murakami

On behalf of my family and me, we wanted to offer a humble expression of our gratitude for all that you have done. Our lives have been forever changed because of your passionate dedication in fighting Lyme disease.

When we think of what you mean to us, these are just a few of the words that come to mind:

PASSION PURPOSE SERVICE SACRIFICE INTEGRITY GENEROSITY COMPASSION HOPE

Your unwavering belief in my fight has given me hope. Your care and compassion has restored my sense of self and my dignity; and your tireless efforts in helping me regain my life have meant that my husband is getting his wife back and my children are getting their mom back. At my sickest, I was so wracked with pain that I was unable to even endure the tender embrace of my children. But because of your care, I am able to once again joyfully hold them in my arms. There is no gift more precious than that.

Thank you…

You have left an indelible imprint on our lives and you will always hold a special place in our hearts.

Sincerely,

The Goertzen Family