MEET THE GOERTZENS



"As a family, we firmly believe that in the face of life's greatest trials, we have a choice to make. We can either focus on what Lyme Disease has taken away or we can choose to look beyond all that has been lost and find what is to be gained."


Graham

Graham is in his late-forties and does not have Lyme disease. But wait there's  more! He's also a youth worker for a non-profit Christian youth organization in Vancouver.  He's keen on bikes, and prefers descending to ascending trails with his riding pals and his children before they got sick.

Even without a PhD, he can attest to the problem of Lyme disease here in southwestern British Columbia. Seeing first-hand how this crazy disease has pretty much ruined his wife's life since 2006 - and then unleashed its fury on his boys in 2009, he's determined to do what it takes to see them back to health and doing their chores. Until that happens, he's had to pick up the slack and wear many different hats...often times, he's both mother & father, as well as chauffeur, cook, nurse, house keeper, school teacher & dog walker. Along the way, he keeps his family entertained and laughing with his creative uses for medical gloves and various other
shenanigans.


As brutal as this whole Lyme thing is on so many levels, Graham is choosing to trust in God.

"When sickness and suffering unleashes its fury, some might think of it as God playing some sort of cruel joke... I choose to see a merciful God whose plans are so amazing - so complex and perfect. We are blessed - even through this!"


Shannon

Shannon initially contracted Lyme at around the age of 16. She became critically ill at the time, suffered partial paralysis and was hospitalized. Her condition baffled mainstream medical professionals. She was never properly diagnosed or treated. She walked with a cane for 3 months, suffered from migraines, had profound fatigue and brain fog. She eventually recovered from her "mystery illness" after being under the care of a naturopathic doctor over the course of a year. For the most part, she remained more or less healthy, until June 2006. Then, after years and years of holding this stealth infection at bay, her immune system shut down and, to put it mildly, all hell broke loose.

Eventually, every system of her body was affected - from the top of her head to the bottom of feet. At her sickest, Shannon was bedridden with agonizing joint pain and nerve pain. She was unable to count to 10, remember her children's names or how to sign her name. She was unable to read or process information. She developed arrhythmia, intense sensitivity to light and noise, OCD, hallucinations and panic and anxiety attacks. She had drenching night sweats, bladder issues, shortness of breath, migraines, the list is endless.


"There’s something that happens in our lives and in our minds when [we] get into a place with a heightened sense of vulnerability and diminished sense of power, when life is not turning out the way [we] think it should, when [we] start to make this assumption – that God has abandoned me. 



But God is most powerfully present even when he seems to be most apparently absent. He calls us to have a radical trust in Him."
~Pete Wilson, Plan B

From onset of symptoms in April 2006, her journey to the correct diagnosis of lyme disease took 9 months. She was diagnosed in Canada by Dr Murakami. At the time, he was the only doctor in western Canada that was Lyme literate and had the expertise (and willingness) to treat patients beyond what the restrictive Infectious Disease Society of America (IDSA) treatment guidelines recommend.
Graham and Shannon with DR M
The roiling controversy created by these guidelines led to active persecution of Dr. Murakami by the BC College of Physician and Surgeons. After 8 years of what can only be called harassment he was forced to into retirement by the dogged pursuit and harassment  Yet to this day, he remains extraordinarily passionate and committed in the fight for change and in assisting patients with getting the treatment they need. (Visit the Dr E Murakami Center for Lyme: http://www.murakamicentreforlyme.org/)

Before DR M retired, he did assist Shannon in obtaining IV treatment with an infectious disease doctor. Unfortunately, despite the showing signs of improvement with IV, the ID doc refused to extend her treatment past the 3 months treatment recommended IDSA guidelines. The Goertzens desperately tried to find another doctor who would extend her IV treatment. They tried, in vain, for 2 months. Shannon did not receive any treatment during those 2 months and as a result, her symptoms all returned with a vengeance. She began to lose her vision and become increasingly debilitated. Finally, a doctor told them,

"Your level of disability is severe but there is no doctor in Canada who will risk losing their license in order to treat you. I recommend that you go to the USA for treatment."


The Goertzens left that appointment deeply discouraged and despondent. They knew that Shannon was in desperate need of treatment. That night they received a phone call and (through a miracle) were offered seats on a private flight that had been hired to take another critically ill patient to see a Lyme specialist in California. The flight garnered much media attention and was deemed "The Lyme Life Flight". And indeed it was, Shannon and the other 2 patients that were on that flight have all made great strides on their road to recovery.


Shannon continues to be treated by DR H, who is a board certified, licensed doctor in California that specializes in Lyme Disease and tick borne infections. Her treatment requires that she fly to California to see DR H every 3 months. In addition, she has monthly phone appointments with him. She also sees an additional, USA LLMD, DR D who partners with DR H in providing care and treatment for Shannon. DR D practices in Seattle, WA which is a 3 hour drive from where the Goertzens live.

It has taken 6 years of treatment, including 4 consecutive years of IV therapy to get Shannon to a place in which her disease is more manageable. She has made remarkable progress and has come along way since falling ill in 2006. Much of her treatment has not been covered by insurance. In the early years, treatment for her and her boys exceeded $50,000 per year in out of pocket expenses for the family. Currently, she now has a Canadian doctor who is partnering with her USA LLMDs to provide care. This has helped to reduce out of pocket medical costs to between $20,000 to $30,000 per year. 

TAYLOR


Taylor's health struggles began at the age of 17, during the fall of 2009. He began to struggle with profound fatigue, headaches, nausea, and muscle fatigue and weakness. All of this was triggered when he got the chicken pox (yes, chicken pox at 17!) and contracted a mono-like viral infection called CMV.

As the months progressed he did not show signs of recovery and was still struggling with profound fatigue, headaches and concentration issues 3 months later. In February 2010, he was diagnosed with acute CMV, EBV, Bartonella and Lyme disease.

Due to his health challenges, he missed much of his final year of high school. In March 2010, with just 3 months left of his grade 12 year, he was forced to withdraw from school. At the time that Taylor fell ill, he was a Reservist with the Canadian Military with a dream to serve his country on active duty as an infantry soldier in the Armed Forces. Private Goertzen is passionate about protecting those he loves. Before becoming ill, his plan was to enlist in the Armed Forces and leave for boot camp immediately upon graduation. Lyme delayed his dreams and aspirations of a military career. He went to war alright. He spent the next 18 months of his life engaged in an all out battle for his life...this war fought from bed with heavy artillery of antibiotics.

This fight came at an incredibly difficult and challenging time in his life. He went into this fight as a teenager and emerged as a man. He lost many friends along the way and often suffered in silence. He learned that few friends had the capacity to weather the long, hard battle.  Yet, he allowed his fight with Lyme to strengthen and mature him. I might add, that he went into this fight with a fear of needles...clearly, the ink he know sports would indicate that that fear no longer exists. 



He has been off of treatment and symptom free since May 2011! He has spent the last 2 years re-gaining his independence and re-building his body, mind and spirit. His dreams of a military career continue to be in his sites albeit he now has aspirations to join the Royal Marines in the UK. His plans are in full swing and he aspires to fulfill this goal by the winter of 2014. His healing from Lyme was nothing short of miraculous. You can read his story as told by him in a blog post called Taylor's P.U.S.H. Story.


PARKER (aka SPARKY)
(you can read more detailed account at Sparky's Fight)



Sparky became ill in September 2009. His deterioration was alarmingly rapid. Within 6 weeks, he went from being a healthy, athletic, energetic 9 year old boy to being critically ill and often confined to a wheelchair. He quickly developed severe joint pain, headaches, nausea, cognitive dysfunction, tremors and body heat dis-regulation. By December of that year, he was no longer able to attend school at all. 
  
After several hospitalizations, a multitude of appointments with different specialists, and 2 trips to the US to see doctors that specialize in Lyme, Parker was finally diagnosed in Feb 2010 with Lyme, Babesia and Mycoplasma. He was immediately started on an aggressive oral treatment protocol.  In Sept 2010, it became necessary for him to battle this disease with IV antibiotics. This required that he get a PICC line. He has been on IV treatment ever since. His case has been complex and very difficult to treat. It has been further complicated by the political and medical controversy surrounding this disease. There have been many times during his fight that we feared we may lose him. 



Under the USA care of DR H and DR D, he has improved. Fighting Lyme is a marathon, not a sprint. For the first 2.5 years of his fight, there was no Canadian doctor willing to take on the challenge of treating his life-threatening condition. All his treatment came from the USA and was paid for out of pocket. Thankfully, this past fall 2012, BC Naturopaths (ND)were licensed to prescribe and administer oral and antibiotic medications. Fortunately, there is a ND in BC that has been willing to partner with DR H and provide care for Sparky. This has helped somewhat to reduce medical expenses.



Since beginning treatment, he has shown signs of improvement. There are times now when he is well enough to be free of his wheelchair and play and be a kid again. Yet his recovery and fight is far from over. The rigors of treatment and the battle for recovery have been fraught with unbelievable trials and challenges. Yet, in the face of intense suffering, he has never lost his sweet smile.

AVERY

Avery, is currently healthy, always hilarious and has a way with words. She was diagnosed with Lyme in March 2010 however she is asymptomatic.  After much discussion, thought and consideration, her doctors and parents made the difficult decision to not burden her with the knowledge of her test results until she was older. Her parents believe that there is a right time and place for everything. In the spring of 2013, that time came. Avery and her mom were having a discussion about Lyme and life. The conversation naturally gave way to a discussion in which Avery's mom was able to gently share with Avery about her positive test results. Avery took the information in stride and was not distressed by it. Everyone's focus is to keep her mentally, emotionally, spiritually and physically healthy. For now, these goals are being achieved. She is currently being treated with herbal and homeopathic remedies by an LLND in Seattle, WA. Her treatment plan is aimed at alleviating her stressors & worries and building up her immune system so that it can keep her infection in check. 

She worries about her brothers and mom a lot. This has impacted her ability to concentrate in school and at times, she has expressed her fears as a great source of stress for her. As a result, she sees a counselor monthly. In spite of all the adversity she faces she has maintained her joyful spirit. She always has a ready smile...which is often followed by a witty retort and a roll of the eyes. On several occasions, she has been overheard telling people that 

"My dad is a goofball...but that's ok because God made him that way!"


She is also the family's resident cheerleader and has been known to pen some pretty incredible letters of encouragement to her brothers and mom. When her brothers fell ill, she was often brought along to their doctor's appointments with DR H in California. It was a scary and difficult time for everyone and it was determined that some of her worry could be alleviated by being involved and included. As the years have stretched on, it became clear that she played a vital role in keeping Sparky's spirits up on these trips. We once told her that during these trips, she was kind of like Sparky's "pet"....then for the rest of the trip every time he came into the room, she would bark and call him master. We raised a few eyebrows on that trip!



She is quite the girl!


HARRISON


Harrison is the newest addition to the Goertzen household. He arrived in Fall of 2010. There is a special back story behind the how and why he arrived. You can read about it at Praying for Harrison.

Harrison has been a true gift from God. He has been a paws-on companion to each of us through some very dark and difficult days. He continues to be a stalwart comrade for Sparky and rarely leaves his side except when Dad says the word cheese. There doesn't even have to be actual cheese. 



Harrison is the chillest dog ever. There's probably something wrong with him. Oh wait! There is something...Would you believe it if we told you that Harrison has Lyme? 

It's unbelievable but true!
I know, right!
He contracted Lyme last spring (2012) either by our home in Richmond, BC or in our friend's yard in Port Coquitlam, BC. You can read full details about Harrison's brush with Lyme here - Bittersweet Juxtaposition

Harrison is also our resident celebrity. Turns out my post about his encounter with a tick and his subsequent treatment for Lyme disease by BC vets caught the attention of the media. Shortly after posting his story, we were contacted by the producer of The Nature of Things. They were about to begin filming a documentary about Lyme in Canada. Would we be interested in sharing Harrison's story (and our family's story)? Harrison was insistent that he appear on air. So, yes, the dog was filmed for the CBC's Nature of Things with David Suzuki. As were we. The documentary will air sometime in the Fall of 2013. 



Harrison's journey with Lyme has taught him a sad truth....

Lyme is everywhere...but cheese isn't. 

Check out Harrison's daily adventures at the tab called Harrison's World.

BREAKING NEWS!!! 
The documentary is done! 


premiering on David Suzuki's The Nature of Things on CBC TV on Thursday, October 10, 2013 at 8PM

To learn more about Lyme in Canada, the documentary, view exclusive clips from the documentary, please visit the Nature of Things/CBC TV website:

 http://www.cbc.ca/natureofthings/episodes//ticked-off-the-mystery-of-lyme-disease  




3 comments:

Anonymous said...

What a beautiful tribute to an amazing family. I feel your generous spirit shine through this difficult journey.
Keep fighting, keep writing:)

Flower said...

You are all an inspiration, my husband John, was finally diagnosed with Lyme Disease after a battle to get tested! After being diagnosed and being on IV medications, opioids, Gabapentin, we are starting to see improvements. We are lucky to have a doctor in Brockville, Ontario who has kept him om antibiotics. The struggle to be diagnosed and acknowledged has been surreal. There were times that I believed he was dying. He continues to convalesce, we certainly will be glued to the TV on Thursday and are spreading the news of your blog and the documentary. It will be a great source of information and am doing my very best to be an advocate. Thank you for yor dedication and perseverance. Rock on! A Lymie's Love One

Mara Cortez said...

This page needs some new pics Hahah but they are all so cute!!