RUNNING OUT OF TIME

I see the immunologist in a couple of days and I’ve gotten myself thru the past week by thinking that I would still have my PICC in for that appointment. Somehow in the dark recesses of my mind, I guess I've been hopeful that he'd maybe prescribe additional IV treatment, at the golden 11th hour.

But my nurse called and she has to come tomorrow to pull Mr PICC.

This time around it won’t be changed or delayed.

I am a mess…trying to clamp down on the hysteria that keeps rising to the surface.

I just can’t see the point of continuing to fight, it just all seems so futile and it is too draining to have my hopes torn away time and time again…

I AM...

I am sick today. I am so sick I want to die. I am angry today. I am very angry. I am panicked. I am despairing. I am struggling to maintain any hope at all. I am doubtful that I can beat this. and I HATE to even admit that because I have been so 'positive' and 'trusting' thru almost 2 years of hell now and to doubt and lose hope now is sad but it is my reality...at least for today. I am so unbelievably freaking angry about the whole thing...
pardon my language

I am fed up with fighting what feels like a losing battle.
I am disheartened by the ravaging effects that this disease has on my body.
I am angry that my kids are suffering as a result of this disease...our home is not a safe haven it is a war zone, and we are not somehow sheltered from all of the other life stresses just because I am ill and so we are struggling to cope with the regular stresses of life on top of my fairly severe dysfunction....

I am destroyed in mind and body after month after month of desperately thinking we are seeing the light at the end of the tunnel only to have that light snuffed out by the reality of a complete regression and worsening in my condition.

I am unbelievably tired of fighting the abuse of ignorant and pious doctors who refuse to treat or acknowledge my disease or Lyme in general...

I am the reality of Lyme.
I am pleading for my life.

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

DR. DEPRESSION

Still desperately trying to find a doctor who will be willing to treat me.

Besides heading to my scheduled appointments with varying specialists, we decided to try our luck at a walk-in clinic. A couple of months ago, while I was still on IV treatment I had popped into a walk in clinic to get a renewal on a rx.

The doctor I saw there was very nice and personable. He noticed my PICC line and asked as to what I was being treated for. "Lyme Disease." I said and held my breath. "Are you familiar with it?" "Somewhat. I know that we used to think it was really rare but we're finding out that that was wrong." Holy Moley, I nearly fell off my chair. Maybe this guy is a tad bit Lyme literate.

Of course, I'm always on the look out to find a medical ally in this battle and so I casually mentioned that the doc treating me has recently retired and as a result I need a new doc. "Would you be willing to treat me?" I asked with as neutral a tone as possible. "I'd certainly be willing to see you as a patient but I would need to take a look at your history."

Well, this certainly looks hopeful I thought. Before I left the office, I had my records from DR M sent over.

Now, fast forward to today.
I'm feeling pretty desperate and panicky, trying to strategize what to do and where to go next. Then I remembered this little visit i had with this doc a couple months ago and figured its worth a try.

This appointment reached absolutely ridiculous proportions.
Seriuosly, why do I bother anymore?
The doc gave no credence or any level of importance to DR M's diagnosis, my treatment and my positive response to treatment.
Rather, he ignored any evidence of my LD and quite literally grasped at straws in order to refute my diagnosis which of course, therefore abdicates any responsibility that would be on his part to treat me.

He finally asked me what my symptoms were. I was only able to say joint pain and blind spots before he interrupted me and said "oh, are you fatigued as well?" when I responded in the affirmative, he immediately said, " I think you are depressed."
My mouth hit the floor. Are you serious?
He quickly followed up with, "Well maybe I should ask you if you are depressed."
Really, do you think?
Sheesh.
Graham who was sitting beside me lost it on the guy.

Graham eventually confronted him on it. "My wife is NOT depressed. When was the last time that you read about depression causing blind spots, breathing apnea and arthritis?
Then he confronted him on the fact that he was totally disregarding Dr M's diagnosis and expertise on LD.

Dr Depressions rebuttal was that Dr M had a special interest in LD so therefore he was going to see LD in all his patients. He backed up this ridiculous ascertation by suggesting that other specialties do that too - such as this well known Doc in Vancouver who specializes in Chronic Fatigue Syndrome, according to Dr Depression's professional opinion that doc thinks everyone he sees has CFS.

We sat there thinking does this guy have any clue how asinine his theory is?
Became an even bigger joke when we found out HIS special interest in medical school was DEPRESSION. HA!

Graham pressed him on this by applying his theory and suggesting that quite possibly then he was just 'seeing' depression as a causative because that was his specialty.

Somehow Dr Depression didn't think his theory applied to himself.
Figures.

The most revolting thing about this appointment today was that he INSISTED on seeing my parents in his office in order to find out if there is any family history of depression or mental illness.
There is NOT but he refused to take my word for it.
We offered to phone my folks and let him talk via phone.
he refused.
He insisted that my parents come IN TO HIS OFFICE.

Nice.
I am a 34 year old woman, the wife and mother of 3 children and I have to bring my mommy and daddy to the doctor with me.

It's totally nuts.
I can't believe I am still sane.