VICTORIA LYME DISEASE RALLY

Here's the speech I gave at the Victoria LD Rally yesterday:

My name is Shannon Goertzen and I am a wife and a mother of 3 children and I am battling Lyme disease. I became ill with LD in July 2006. Despite having classic progression of the disease, starting with flu-like symptoms which rapidly led to severe , severe headaches, excruciating joint pain and cognitive dysfunction, it still took nine months, countless tests and numerous visits to many doctors and specialist before I was finally diagnosed.

Because my infection had been left so long untreated it became evident that I needed IV treatment to give me my best chances at recovery. In BC, IV antibiotics must be prescribed by an infectious disease doctor and so I was referred to a number of ID Clinics.

My referral to a ID Clinic in Vancouver was denied based solely on my negative blood test from our provincial lab. This seems to conflict with what is written by Health Canada's website - "that the diagnosis of LD must be based on clinical presentation of symptoms because the tests are unreliable."

However, I was one of the fortunate ones who did finally receive IV which was reluctantly prescribed to me by an infectious disease doctor.So it was to our great dismay and against our wishes and my nurses recommendations that my IV treatment was stopped after 3 months. The ID doc also stated he would not give me any follow-up treatment and he would no longer see me as a patient.

Since my IV treatment stopped in mid April I have spent much of the past 2 weeks once again bedridden with agonizing bone and joint pain, fevers, crushing fatigue, dizzy spells, and blurred vision. As I find myself once again ping ponging back and forth thru the medical system, I am finding 1 of 2 things. There are the doctors that are not aware of LD and its existence in BC or they know about it, but are unwilling to give a fair and unbiased evaluation of my symptoms. Either way, I am refused treatment and the longer I am off treatment the more I begin to deteriorate and fear that all the ground I have covered in my fight will be lost.

Here are some of the statement that doctors have made to me in the past month.

"I do not know enough about Lyme disease to treat it.”

“I am not willing to get involved in the controversy surrounding the treatment of this disease.”

“I am taking a lot of heat from my colleagues for treating you.”

So I am left in this nightmarish chasm, with a diagnosis made late because doctors failed to recognize the classic progression. Now I am left fighting to find a doctor willing to treat me in late stages of the disease.

My illness and subsequent battle with it has been an incredibly long ordeal for my whole family. In a lot of ways, we have gone beyond survival mode and just do our best to exist through the challenges of each day. It has robbed my husband of his partner and he has been left exhausted and depleted as he struggles to care for me, for our home and be both mother and father to our 3 kids.

It has robbed me of my ability to actively and consistently participate in the lives of my children. This loss is a cavernous hole in my soul and I grieve it deeply. One of my son’s best expressed his grief when he said, “I feel sad because I don’t remember what it is like to have a normal mom anymore”

LD is the nightmare that my family and I live with everyday and it has presented us with the biggest challenge of our lives. At times it has robbed me of my ability to walk, drive, talk, read and write.

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 LD has taken away or we can choose to look beyond all that has been lost and find what can be gained. While it is an incredibly difficult and painful journey, I will not let it rob me of my dignity, my courage and my hope.

It is for this reason that I continue to persevere in the face of both medical and political odds. I have faith and hope that one day soon, both myself and the many others that live with this disease will find doctors who will see as persons living with Lyme and treat us as individuals and not as obscure statistics that are expected to neatly fit with the parameters of questionable treatment guidelines.