PLEADING FOR MY LIFE

The following is a letter that was recently sent from my folks to the Honorable George Abbott – Minister of Health in BC:

Dear Minister of Health, Honorable George Abbott,

We are writing this letter to plead for treatment for our daughter Shannon Goertzen. She has had three months of IV treatment for Lyme disease after almost two years of illness. She was making great strides towards health on this IV treatment. As of Tuesday, April 15th she has had no more IV treatment. Her symptoms are already returning and we fear that she may lose all ground she has gained. As of now she has no Doctor that will treat her with continued IV or that will follow up with any treatment. They all have said they do not know enough about Lyme disease to treat it. We are pleading with you to intervene and get her the treatment she needs.

Thanking you in advance for your urgent help.

Art & Carelin Penner

The following is an update from my husband:

First off, I’d like to thank all of you who have helped us out by your prayers, giving us gifts of food, financial or otherwise assistance to our family. We’re humbly blessed. The purpose of this letter is to inform you of our current situation as we are experiencing some difficulties in terms of Shannon’s treatment.
My wife Shannon has been ill with Lyme disease for the past two years. Simply put this is an ordeal which has impacted far more than the health and well-being of my wife. The impact this has had on our life is simply horrendous; and is played out pretty much every day. What we are finding out about the effects of Lyme disease has little or no bearing on the actual infection caused by this little bacterium. The battle to fight and diagnose it appears to be played out in our political realm and medical system. For some reason unbeknownst to us, the medical community by in large appears to be either uninformed, misinformed, uninterested, or in complete denial that a problem with Lyme even exists here in BC.

As of April 14^th, Shannon completed three months of IV antibiotic treatment reluctantly prescribed to her by Dr. V - an infectious disease specialist. She improved while on this treatment. I have seen her have good days. Some of her symptoms have disappeared completely and others were markedly more manageable while on IV. However the ID specialist maintains that she doesn’t or never actually had Lyme. His diagnosis is completely contrary to our other doctor (Dr. M) who had clinically diagnosed her a year ago, and saw her for 30-45min every other week during the 9 months she was under his care. Dr. M has over thirty years experience treating patients with Lyme. This clinical diagnosis coupled with the positive test result from the lab in California was categorically ignored by Dr. V. He maintains that any improvement Shannon experienced to this medication is merely placebo (in her head). This was his parting comment as he got up and showed us the door. We sat there feeling like we were hit in the gut because it was not just us who “saw” an improvement in her condition. Many of our friends noted the changes as well. Additionally, her home care nurses who have come every couple days for the past 3 months have seen and remarked on her improvement. It is interesting to note that her nurses have told us that they personally know Dr V and they assert that he would not have treated Shannon if he did not really believe that she had Lyme Disease. Along with us, they are perplexed by his behaviour and are outraged that he is not following up Shannon’s IV treatment with proper medical care.

So with Dr. V no longer willing to treat Shannon, we do not currently have a physician willing to do any follow-up therapy for her (which would be the standard protocol for patients with Lyme). Dr. M is out of the picture because he has retired. I might add that he is still willing to consult with physicians although mainstream doctors refute his treatment guidelines and refuse to talk to him. The BC College of Physicians and Surgeons don’t accept his practices, but refuse to discuss it publically because he has never been disciplined – does this mean they can’t figure out why they don’t like what he does? What exactly are we not being told? And how can this controversy exist when every patient that we have talked to or met along the way who was treated by Dr M actually credits him with saving their life. I hate to even speculate what would have happened to Shannon if it were not for the great care and medical attention she has received from Dr M. These are just some of the questions and factors that are standing in the way of treatment for Shannon and many others like her.

Since our last appointment with Dr. V, we have spent three weeks seeking a doctor who will treat Shannon. No luck yet. Their responses were analogous in that they maintained that they believed it was unethical to treat a disease they know nothing about. When we mentioned that Dr. M in his retirement would be more than willing to consult with them, their answer was a definitive NO. I would ascertain that it is unethical to withhold medical treatment to a patient who is showing a marked improvement especially when the only side effect was progress.

As I write, many of Shannon’s symptoms that resolved with IV treatment are returning, and she has spent much of the past three days in bed or on the couch in a lot of pain running fevers, experiencing dizziness, twitching, and neuropathy. These symptoms had resolved on IV and are now returning. Needless to say the continual road blocks for treatment here in Canada are causing us all a great deal of stress and anger. We can only continue to place our trust in God. He is faithful and knows our situation, and is allowing it all to happen as it is. Nothing surprises him.

Shannon’s parents were with us on Friday when once again another doctor refused to treat her based on what we feel is butt-covering ethics and what appears to be a convenient ignorance of this disease. Shannon’s folks sent out a personal plea to George Abbott (BC Minister of Health). Abbott and his colleagues are well aware of what is going on and seem to be working hard to cover up something or other. Unfortunately they continue to be selective in reviewing the science-based evidence about diagnosis and treatment of this disease – preferring to only refer to and acknowledge the science that backs up their opinions/beliefs while blatantly ignoring their own set of rules and refuting other scientific alternatives.

We acknowledge that we have much anger and frustration at what we feel is a misuse and abuse of power – while doctors and politicians debate the ‘science’ behind diagnosis and treatment, we experience it from an intensely personal viewpoint and our experience is that a treatment that was making her better is now being withheld from her and as a result she is beginning to deteriorate.

While we feel it is important to set forth Shannon’s case and advocate for her, we must trust God to work on her behalf in restoring her health the way that he best sees fit. It’s easy to adopt a bullying mentality in times of desperation and anger, but this is not something we choose to do. Therefore, it is important to us that anything done on our behalf is done with dignity and respect. Regardless of whether or not we feel there is a injustice/corruption/dishonesty we feel God calls us to respect those put in authority over us and lashing out in anger/bitterness falls short of that call to honour.

Here’s what you can do:

1. Pray for Shannon’s healing. Pray also for me as I support her through this. It is no easy task to try to maintain strength to listen and encourage her as hope seems to be slipping. I am also faced with having to pick up the chores and tasks that Shannon has done in the past. This has placed an enormous burden upon me at home as you can imagine.
2. Pray for and encourage our children. Many of you who are friends with us are friends with Taylor, Parker and Avery. They need their mum healthy. As much as we have tried to protect them from this, they are nonetheless affected.
3. Apply gentle pressure by writing a letter or email (list is below) on Shannon’s behalf. This may be helpful in getting her treatment here in Canada. We recognize that not everyone is comfortable helping in this way and that’s okay, but many of our friends have encouraged us to try this and have indicated a willingness to help us in this way. If you are so inclined, please keep in mind the following guidelines.
1. Don’t need to make it too long. Just a few short sentences will suffice.
2. Remain truthful and objective.
3. If you have seen improvements in Shannon’s condition these past three months on IV, it is important to comment on these. Please refrain from making comments that you do not wholeheartedly believe.
4. In your letter, ask for a personal response back to you and to let you know what action they plan to take – hold them accountable.
5. Pray that your email/letter will fall into the right hands.

Thank you for taking the time to read this important letter. On behalf of Shannon, Taylor, Parker, Avery and myself, I appeal for your help and prayers. I believe that together we can make a difference for Shannon as well as many others with Lyme Disease – who we are in contact with – who find themselves in the same situation.

With utmost sincerity,
Graham Goertzen