"In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”
- Dr. Kenneth Liegner
this is the husband here...and ok, my wife is providing the clerical support (hence, the obvious lack of capital letters). here is a very edited version of what we are facing. we still have to be somewhat vague, we trust you understand.
a children's hospital is interfering with our son's medical treatment from the USA. without warning, and without consultation with our son's primary care doc (DR H), they made decisions to put certain aggressive and threatening plans into action to STOP our son's treatment. they claim his treatment is medically unnecessary and harmful. why? because they dispute his diagnosis. in their opinion, he does not have lyme disease. yet, they have no differential diagnosis to offer nor have a plan in place to investigate what, if it is not lyme, is the cause of his symptoms. it all boils down to medical difference of opinion and the politics of lyme. the differences of opinion happens in medicine. doctor's have differences of opinion. it is a patient's right to seek a second opinion and choose the best treatment option.
in our son's case, the hospital (2 years ago) diagnosed him with "idiopathic" conditions. idiopathic means "we don't know what the cause is". their treatment plan was aimed at symptom control with narcotics, anti-depressants and psychology. many times, we requested they further investigate the cause of our son's deteriorating health. they refused...even when he continued to deteriorate under their therapy plan. it was intolerable to watch him waste away and suffer. we had him examined and all his medical files and tests reviewed by 2 other doctors (DR H and DR D). they determined the cause of his "idiopathic" conditions were babesia and lyme infections.
when our son came under the care of DR H, he was on death's door and was profoundly disabled. yes, he is still ill, but he is notably improved. the letter from the hospital failed to note or give credence to the fact that many of our son's "idiopathic" symptoms have improved and some have even resolved on the treatment prescribed by DR H. furthermore, he has not suffered adverse effects from the treatment.
we know we are not the first family to face this. we have seen this type of action before with others and we sense it's a being made more from a political and "example setting" sense than it is a medical one. we acknowledge his treatment and diagnosis is controversial to some, but the way they are threatening to strong arm us is categorically wrong and unethical. it is also completely contrary and against the medical advice of his treating physician. we will be seeking legal advice. until we are able to set that in motion, and in order to protect our son, we have had to make some very difficult choices. the hospital's interference and demands put our son's safety in jeopardy. should we not comply with their demands, the fear is that the entities involved will "act first, ask questions second". yet, complying with their demands puts his very life at risk. either way, there is the potential for devastating consequences.
over this past week, DR H and DR D have spent many hours working on behalf of the best interests of our son. the gravity of this situation and risk to our son's well being has weighed heavily on us and his USA medical team. there is much that needs to be taken under consideration. we are so thankful for our USA medical team and their wisdom, dedication, care and support. over the past 2.5 years, we have had to take extraordinary measures to get our son the medical care he needs. we will continue to do so.
we are mentally, physically and emotionally drained. this whole ordeal has been traumatic for our entire family. as has always been, our greatest concern remains for the physical, emotional, spiritual and mental well being of our son. the suffering he has endured in his young life is unfathomable - and now "this". we could not shelter him from "this" as the threat of it is very serious and we have had to prepare him for what it could potentially mean.
how do you help your child(ren) cope with the gravity of man's evil intent? we have had many discussions about the story of joseph in the bible and how he was sold into slavery by his own brothers. what a betrayal of trust that was...and yet, God was sovereign over the evil. He is sovereign over this horrendous circumstance as well. in genesis 50:20, we read joseph's response to his brothers:
"Don't you see, you planned evil against me but God used those same plans for my good, as you see all around you right now—life for many people."
so we hold on to that...both for ourselves and our immediate situation as well as the many others that are suffering with this devastating disease. it has always been mine and my wife's belief that our journey with lyme is not just about 'us'. it is our prayer that our story and our fight will one day pave the way towards the diagnosis and treatment of lyme in canada for canadians.
this past week has been undeniably shocking, frightening and indescribably infuriating. we have catapulted thru a cascade of emotions from volatile outrage to gut wrenching grief...BUT God is in control and He is our very present help in time of trouble and we have already been witness to some of the ways in which He is creatively orchestrating events and we seek to bring glory to His name in the midst what appears to be a catastrophic storm.
we want to thank those of you who have spent many hours in prayer, phoned, sent emails or messages and continue to support us in tangible ways. that means the world to us right now. please don't stop.
some of you have asked how you can help. thank you for your offers.
this is what need at this time:
we are tired, battered and bruised. some days we feel fragile...but we are not broken. however, we do need folks to wrap their arms around us and love on us.
we need meals.
we need to hear that we are in your thoughts and prayers. you don't need to know the 'right' thing to say, just let us know you are out there.
we need folks to be in prayer.
we need to process our anger. we need to vent. we need to cry. we need to scream. yet, we desire to do that in a manner that upholds the values that are important to us. we have no desire to let our (justifiable) anger and rage take root in our hearts.
we need and are looking for a lawyer; specifically a charter of rights/civil attorney with a legal interest/experience with medical law. please pray for that and for God to provide the finances needed.
finally and importantly,
if you feel compelled to come alongside in an "advocate type role", we ask that you touch base with us directly and privately...this is an incredibly sensitive and delicate issue. we absolutely need for what we are going thru to be handled with great care, discernment and wisdom. there is a time to speak out and there is the time to strategically and quietly go about business. for the time being, we believe it is imperative to handle this as discreetly as possible.
again, we wish to convey our deepest gratitude to each of you. we have been hard pressed to respond to your messages as our time and energy is incredibly taxed...but we do read every message that comes our way and they do make a difference.