November 17, 2007

A WORD FROM MY HUSBAND

This is an update regarding Shannon’s treatment for Lyme disease.

Over the past 8 weeks her general health has spiraled down. Her liver enzymes are once again elevated to a point to where she has had to stop the prescribed course of oral antibiotic treatment (which was deemed the most effective for treating Lyme). Shannon has been on treatment for seven months now and generally speaking, she has not improved. Her main symptoms are bone, muscle, and joint pain and stiffness (that makes walking, doing even simple house-hold tasks, driving, etc. a challenge and sometimes impossible), and neurological issues (forgetfulness, difficulty with words and numbers), and central nervous system impairment (muscle twitching, numbness, and sound sensitivity). While she often appears to ‘look good’, this belies how she truly feels on a daily basis. She never feels ‘well’. On her best days, ‘well’ is best described as being functional despite feeling like she has a bad flu. And in the past 8 weeks, to feel that ‘well’ has been a rare occurrence.

This is frustrating for her as she has little or no ability to give attention to the children or things here at home. She has also not worked at her job since May.

When she began her treatment last April, we were anticipating that things would be looking quite positive by now. We’ve been told that that fighting Lyme disease is not a sprint, it’s a marathon. But at this point the fight feels futile, and we are very discouraged. Part of this is because there is no clear-cut path to recovery. So much of it is waiting, and trying this or that. In the meantime, we feel that things are falling apart. We try to trust God and see His sovereign will in all this, but pretty much every part of our day is a challenge.

Yesterday we met with her doctor. He feels that Shannon’s progress is too slow on her current meds, and with the recurring liver damage that is happening, it is not safe for her to continue this particular drug combination. He did inform us that there are other options using drugs that would be easier on her system - but less effective – and given her deteriorating health and overall lack of progress he feels that we need to seek intravenous treatment.

However!! IV treatment must be ordered and administered through an infectious disease specialist. He is referring her to such a specialist, however in order to be considered for this course of treatment the patient must be tested positive for Lyme disease (in Canada). The problem with the Canadian test is that it’s not entirely accurate or effective in detecting the bacteria. The other alternative to the Canadian test would be a test at a US laboratory which is generally more effective and accurate. There is a cost of $400USD for this test. And there exists another possible roadblock in that the US test may not be recognized by the Canadian Infectious Disease specialist.

So that is where we stand.

Yesterday, Shannon’s blood was sent to the Canadian Laboratory for testing. We are praying and ASKING YOU to pray that these tests would return positive so that she can receive IV treatments. From our perspective as well as her doctor’s perspective we believe that the IV treatment would provide the best shot at a curative result. Right now, all treatments for Shannon have been suspended until her liver enzymes return to normal. Pray that her liver would recover so at least she will be able to resume treatment – whatever that will look like.

Sincerely,

Graham

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