in my last post, i wrote about the tabling of the National Lyme Strategy Bill in the House of Commons. it goes without saying that this bill needs to be passed. government action on the issue of lyme is long overdue. it's time to tell the truth about lyme disease. it's time for the ignorance and outright denial to stop. while our medical authorities and government continue to perpetuate the myth that "lyme is hard to catch and easy to diagnose", thousands of canadians are losing their lives to this devastating and insidious disease; thousands go either undiagnosed or misdiagnosed. and like our family, thousands have been forced to seek out of country care in order to get appropriate and life saving treatment.
what is unique to our family's story is that not only did our medical system fail to take care of our son - they took it a step further and are fighting us on our choice to get him medical care and treatment in the USA by a board-certified, licensed MD. up until now, we felt the need to be somewhat 'edited' in disclosing the full reality of what we've been dealing with since february -which we wrote about in a post called genesis 50:20. we now feel that it's time to publicly speak out about the stark, cold reality that we've been living with.
below is an excerpt written by dr v. sherr. it mirrors the reality of our situation.
"I have written about the rampant epidemiology of neuro-Lyme disease and its potent co-infections (especially the red cell parasite that causes babesiosis) and the fact that these are being systematically ignored, minimized, or distorted by this Nation’s overseeing Healthcare Agencies. Astoundingly, there are Agencies that, in ignorance or arrogance, may actively persecute the victims of such borrelial, pan-systematic illness, traumatizing parents and children as well as their treating physicians.
There are those in authority who sponsor the official separation of children from parents whose only sin is that they persist in seeking help for their ailing children. Tragically, those authorities are empowered to permanently remove sick or partially healed young ones from their devoted families.
To their everlasting shame, medical authorities have stood by while innocent mothers have been sent to jail for insisting that their children were ill and again have stood by while the parent’s belief was verified by the death of their sick child while under State 'care'.
The rights of patients and their treating physicians have been trampled by governmental and insurance agencies in ways reminiscent of the era when AIDs was trivialized and its victims spurned as “psychosomatic.” Today’s infected millions worldwide show how wrong they were. The phenomenon of that epidemic is being repeated with the spread of Lyme borreliosis. My writing is an effort to illuminate this dark and now vast expanse of Medicine and to inspire activism and compassion for those patients who are suffering in agony " - Dr Sherr, MD, psychiatrist
the bottom line is this - BC Children's Hospital interfered with our son's USA prescribed IV treatment for Lyme & Babesia. in february 2012, they threatened us with Child Protective Services with a clear intention of striking to remove him from our home and care. Their aggressive actions are based ONLY on their ill-informed, uneducated "OPINION" that he does not have Lyme because of his negative ELISA test.
it is a well documented fact that the ELISA test for Lyme is notoriously inaccurate. we begged BCCH doctors to order a Western Blot test - a more sensitive test for lyme. they refused.
as a result, our son was kicked to the curb with an assertion that his condition was either psychosomatic or idiopathic - both of which are garbage diagnosis of ignorance.
parker has lyme. we eventually had his blood tested with a Western Blot Test. it came back positive. most important is that he responds to the treatment for it. his USA prescribed treatment for Lyme & Babesia brought him back from the brink of death. it saved him and was giving him back his quality of life...you can imagine the horror we felt when we were forced to remove his PICC line and lost access to the IV treatment that was clearly restoring his health.
let me make this very clear - we were forced to comply with BCCH's threats in order to keep our son safe in our home and under our care - where he could at least have access to oral abx therapy. as a result of the forced withdrawal of his IV treatment, his health is on a downward trajectory and he is being subjected to unimaginable suffering. we are currently fighting for his right to receive his IV treatment free from the fear of being removed from our home. below is the letter that DR H sent to BCCH and the doctor's involved in launching their attack on our family. DR H has advocated strongly for parker and his need for treatment - BCCH has NEVER responded to DR H.
we need your help and support. the passing of the National Lyme Bill may not have a direct impact on our case - but the ripples of it will have an effect. the passing of this Bill can help prevent other families and children from facing this unimaginable nightmare that we are living.
Find your federal MP by clicking here.
All we are asking for is that you email your MP and MLAs. Please write your MPs and ask them to vote "YES" to the National Lyme Strategy Bill and let them know...
Lyme is in Canada.
It is devastating the lives of many Canadians.
Every Canadian is at risk.
We need better diagnostic tests and access to treatment.
Thank you to each and every one of you who continue to walk this journey with us.