Terry's Visit- May Long Weekend
Monday, May 23/2011
I am filled with a profound sense of dread and heartache this morning as I wait for the taxi to shuttle me away from Christine and Riley. I am headed back to Calgary once again to re-enter what is supposed to be our "normal" life. One consolation, at least, is that Evan is thriving in Calgary...busy at school, preparing to perform in the musical Narnia, and forming quality relationships with peers and adults alike. Still, I can hardly bear the thought that once again our family will be split in two...divided because of the lack of adequate treatment for Lyme in Canada.
I have had moments of grace here...lying beside Riley as we engaged in short conversations, and silently as I watched him bravely endure levels of pain I cannot even imagine. I have also been awestruck by the tenderness and tenacity by which Christine continues to nurse our dear son around the clock. We have had drops in the bucket to this point,but we could really use a pail of recovery for Riley! It is clear that we're missing some critical part of his treatment...the key or keys that unlock the compexity of his illness.
In the moments before the taxi pulls up, Riley smiles at the prospect of the Canucks winning the Stanley Cup, and again as he imagines driving with his "uncle" Ian towards Grotto Canyon...racing around the corners in Ian's sports car! Then in typical Riley fashion, he thanks me for my visit, the e-mails I send him daily, and for the love he receives from me. I am amazed at his ability to care for me despite his pain and suffering and so very proud of the sensitive and courageous man he's become!
I arrive home to the gift of community...our dear friends Carmen, James, and Mio pick me up at the Airport with food for Evan and I. Meanwhile, another close friend Sharon is at our home tending the flower pots, sorting laundry, and cooking dinner! On top of all of this, some garden elves have been at our place over the weekend trimming hedges and nurturing our front yard. I wait to pick up Evan from a Narnia musical rehearsal after he spent the weekend with his second family the Habkes. What would we do without the support of friends and family?
With tremendous appreciation,
Terry
RILEY UPDATE:
In a recent phone consult with one of Riley's doctors, she named what Riley is experiencing as TICK SOUP syndrome- a medley of infections, viruses, bacteria and parasites that have taken up residence in Riley's body due to his severe level of illness-caused by the initial Lyme bacteria invasion.
What we are dealing with is a bacterial load from the lyme and co-infections as well as a soup pot full of a "little of everything" else...not the best case scenario for healing.
Riley's treatment is in a very delicate and precarious stage right now. His treatment regimen: aimed at killing bugs. His medical team, however, are trying to balance this with an appropriate level of detoxing so his liver can cope with the massive carnage (toxins) left over from the die off.
Specialized testing has confirmed that Riley's gut remains a mess and his liver is having trouble keeping up with its job to clear out toxins from his body. This is causing his body to stay in a state of alarm and massive immflamation. Some of the distress, debilitation, and lack of treatment progress he is experiencing is due to his body's reaction to the bacterial die off toxins and his gut and liver's inability to keep up with the job.
The longer we walk this path, the more we are learning that its not a clearcut path but rather a complex labryinth with many twists and turns and dead ends. Successfully treating this chronic illness is like peeling away the layers of an onion....one delicate layer at a time and until one layer is uncovered, the next can't be addressed.
Until Riley's gut and liver are strenghtened, the die off reaction will continue to keep him very ill.
Damned if you do and damned if you don't.
Active bacteria are still there and reproducing and playing tag in different hiding places within every organ, tissue and cell.
The lyme bacteria are stealth bugs that have very sophisticated mechanisms for survival. They are able to survive by manifesting in different forms, each requiring a different kind of killing agent. Even then- they are able to go into hiding in tissue and organs and evade the medications. They also form what is called biofilm around them so the antibiotics cannot penetrate.
Drugs for the bugs, drugs for the biofilm, drugs for the gut, drugs for the liver, drugs for the mother (just kidding).
At the moment, Riley is on a much lower medication regimen and the focus of treatment for the next few weeks, is on supporting his gut to heal and his liver to detox. It is very common with Lyme treatment to go hard at the bugs for a time, then pull back and give the body time to regroup in preparation to peel away the next layer of the onion. The trouble with this is, most lyme patients begin to see some pay-off along the way...small bits of progress to buoy them up for the next leg of the journey.
Riley has not had this kind of progress yet, and the doctors feel this is in part due to the stubborn co-infections, his gut and liver issues and the areas of his brain that have been hit the hardest.
The bottom line....a very sick boy stillwho is waiting with every breath to feel some progress. He has continued to be more cognitively present and is so eager for connection. When he is able - we occasionally are able to lie beside him in the bed and have short whispered conversations. He has really been craving conversation about things other than his symptoms....to talk about people back home, hear about current events, and of course...on a regular basis we are updating him on the CANUCKS road to the Stanley Cup.
He so desperately wants to watch some hockey on TV.
His brain is still so startled by noise and movement, but the other day he asked if he might try watching even a few seconds of one of the Canucks games. Near the end of the game I turned on the TV in his room (up until now he hadn't even noticed there was a TV in the room). I told him he could open and shut his eyes as he needed. He told me with tears in his eyes that he never thought that he would be actually frightened to look at a game of hockey. He opened his eyes and laboured to watch for what seemed only 4-5 seconds. He closed them again and then tried once more to watch. Another 3-4 seconds and that was all his startled brain could handle. The TV was on mute but the fast paced movement of so many players and the fans waving frantically in the background was just too startling for him He was glad he tried but so disappointed that this was all he could handle. He describes the stimulation of movement, sound and touch like a tornado swirling in his brain, or like being electrocuted.
He now has a goal to watch the winning team lift the Stanley Cup and skate the rink with it (of course this will be the Canucks)....maybe not the game but at least the final seconds!
A few other LYME BYTES
NAVIGATOR METHOD BAND....rocked the gym at Vincent Massey School in support of Riley. A huge thank you to the Band, their support team and all who attended. It was a huge success...over $14,000 raised to help with Riley's treatment costs. AMAZING!!!
We were completely blown away by the photos, stories, letters written to Riley, and the level of care and concern from his friends, teachers, hockey coaches, neighbours and others who were there who have never met Riley but wanted to show support.
THANK YOU NAVIGATOR METHOD.
All the notes written to Riley have arrived in California...and we are reading them to Riley one at at time. He is definitely getting the message that he is not forgotten.
Other LYME NEWS....Canadian Lyme Lepers in California
http://lymediseasedebacle.blogspot.com/
David Cubberley, a cousin-in-law and Director on the Board of the Canadian Lyme Foundation...recently came down to visit us in California. David has been an amazing advocate for Lyme patients in B.C. and across the country. He quite frequently writes and speaks on behalf of patients and in support of change regarding the diagnosis and treatment of Lyme disease in Canada.
In a recent blog post he described his trip here and how it relates to the state of Lyme Disease in our country.
Following are some excerpts from his most recent blog entry:
"Recently I visited with family members living in San Francisco for treatment of a son’s chronic Lyme disease. Refused diagnosis in Alberta, their son Riley got so ill that he and his mother had to move to the USA to try to get his health back. A desperate measure, but when the door slams shut on therapy in Canada, there’s only one choice left.
As it turns out, my relatives have joined western Canada’s growing Lyme-leper colony in California. No one in public health up here bothers to notice how big this exodus is – when it comes to Lyme, they prefer to let sick dogs lie. But in San Francisco I learned there’s a whole clutch of Calgary families there buying their Lyme-care. And we can be sure there are Edmontonians and Vancouverites too, because Canada’s refusal to treat people infected with Lyme disease is as universal as our healthcare system.
As a result of Canada's Health’s failure, Riley is now immobilized in a far-away bedroom in San Francisco, where light, movement and sound can be closely controlled. Lyme invades the brain and disrupts the limbic system, making external stimuli painful and disorienting for patients. So Riley is sequestered from people and sound much of the time.
This is a bedroom where he’s tended lovingly by his nurse-mother Christine, for long hours every day. A bedroom he only ever leaves laboriously and briefly, occasionally in a wheelchair for visits to his doctor. A bedroom that’s really now his entire world, in a relative’s house, where family and friends visit in order to help keep hope alive.
Riley was brought to California to be close to his Lyme-literate MD because he’s far too sick to commute from Alberta for appointments.
San Francisco attracts Canada’s Lyme-lepers because it’s home to some of the most Lyme-literate physicians in America. Since there’s no local knowledge available in Canada (that is, clinical experience with Lyme sufficient to discern its patterns) and since access to antibiotics for chronic infection is taboo, you’re forced to choose: either go where there’s clinical skill and access to antibiotics, or just watch your loved one deteriorate painfully, and possibly even die.
I’ve noted the tragic irony of this before: Canadian families who revere our healthcare system are forced to uproot, go to a foreign country and buy ‘medically necessary’ care. All this because Canada has adopted American ‘practice guidelines’ that ‘manage care’ by shedding responsibility for as many sick insurees as possible. The guidelines do this by means of manipulated disease definitions.
If this sounds diabolical – well, there are elements of that about it. The algorithm (or formula) that determines whether a Canadian test detects Lyme or not is loaded against showing it (mis-primed, thresholds set too high, etc). So is the algorithm rigidly restricting antibiotic therapy to a short course for the few cases ‘proven’ by the faulty two-stage test (about 150 in all of tick-ridden Canada).
Algorithmic medical care is machine-medicine at its worst. It trumps the clinician’s and the patient’s roles in detecting and diagnosing disease, and together deciding the best course of therapy. It denies the patient the knowledge that there exist two distinct sets of medical guidelines for Lyme and co-infections – one relying on the faulty test that nearly never finds it, another based on clinical diagnosis from symptoms and ongoing treatment. It arbitrarily replaces complexity with unwarranted certainties.
This needless, inhumane denial of diagnosis and treatment in Canada victimizes families at every level. Those with resources to liquidate are ‘free’ to bankrupt themselves buying care state-side; those without are ‘free’ to suffer in silence and lose their quality of life and independence.
‘Interesting’ is too neutral a term for the agonies inflicted by these terrifying diseases. The cost in individual lives of missing the opportunity to pounce when they first occur is incalculable. Canada’s indifference in light of the mounting evidence before government is inexplicable and outrageous. It completely violates the spirit and intent of the Canada Health Act’s commitment to all Canadians. And it violates a Charter right to security of person.
Recently, Lyme-activist Gwen Barlee released a confidential report by Dr. Brian Schmidt of the BC Provincial Health Services Authority. To his credit, Dr. Schmidt acknowledged that patients are being abandoned by practice guidelines that rely on poor testing and arbitrarily limit treatment to a short course of antibiotics. Even if an absolute cure for chronic Lyme is elusive, resolution of symptoms and return to an active, independent life is achievable for most.
Dr. Schmidt’s report outlines a positive direction for Lyme disease diagnosis and treatment that would re-open the door to medically necessary care for infected British Columbians. I reread Dr. Schmidt’s report carefully while with the Lyme-lepers in San Francisco. It offers hope for a return to an ethical compass in public health policy on tick-borne infections. It provides a direction for addressing and preventing an untold amount of human suffering. Being with Riley and his mom, seeing their struggle firsthand, resolved me more than ever to agitate against a status quo that de-insures Lyme disease and denies ‘medically necessary care’ to people with tick-borne infections.
So long as the status quo prevails, there’ll be a steady flow of new recruits to the Lyme-leper colony – but this is a journey no publicly insured Canadian should ever have to make! Your taxes pay for medical care without regard for your ability to pay, whenever you need it and for as long as you need it.
We’re all denied access to that care if we happen to contract tick-borne infection. We shouldn’t wait to get Lyme before coming to grips with that grim reality. We should Act Now to bring public health back to its mission of preventing and treating disease.
There are many good reasons to visit San Francisco. Lyme disease should never be one of them".
For more from David Cubberley visit his blog: http:lymediseasedebacle.blogspot.com
"You gain strength courage and confidence by every experience in
which you really stop to look fear in the face. You are able to say
to yourself, 'I have lived through this horror I can take the next
thing that comes along'.
You must do the thing you think you cannot do".
Eleanor Roosevelt
