Lyme Be Gone: June 2013

“It always seems impossible until it’s done”
Nelson Mandela

What seemed impossible a year ago? Everything seemed impossible!

It was impossible to imagine Riley sitting up in bed, drinking a glass of water on his own.

We could not imagine a day when he would walk unassisted to the bathroom.
We wondered if the facial paralysis would ever ease, allowing Riley to once again speak, chew, frown, smile, and cry.

Our boy who had been so conversational, always eager to tell a story or talk about his day, always ready to listen, and share a laugh…a year ago, it was impossible to even remember what his voice sounded like, much less imagine an actual conversation.

Would he ever sleep through the night?
Would the nausea ever subside?
Would the constant pain in every muscle, joint, bone ever let up?

California- 2011

2011 in California
Riley being assessed by a neurological therapist.
Riley was not able to hold his head up or keep his eyes open

The following quote is an excerpt from a daily journal I keep, tracking Riley's symptoms:

Written June 11, 2012
“No whispers or connection in the early part of the day….almost non-responsive, agitated by voices around him. Motioned to his stomach, saying the pain was very bad. Later- tried to watch the Stanley Cup game and became overwhelmed by the end of the game. The noise, the stimulus- too much. Tremors in his head bad tonight too. I can’t tell if he is nodding “no” or it’s just his head wagging back in forth in distress.”

“It always seems impossible until it’s done”

Much of what seemed impossible a year ago, two years ago is now “done”.
Riley is free from many of the horrors he endured for so many months.
He has made tremendous progress, and is experiencing an increased quality of life.
The relief for all of us is hard to describe and at times the past seems surreal. We wonder sometimes how we lived through those darkest days without giving up.
The power of the human spirit, and the will to survive is a great inner force, and we have certainly been witness to this spirit within Riley.

When we arrived at the Hansa Clinic last fall, we listed over 55 symptoms that plagued Riley on a daily basis. Many of these are completely gone, while others have significantly decreased in intensity. Narrowing in on what is the root cause of his lingering symptoms, and determining the best treatment options, is now key to his full recovery.

First days at the Hansa Clinic -reviewing Riley's symptoms with Dr J.

Intense treatment days with Dr. J. So much progress was made in this room

Kansas 2012- First days out of the wheelchair

“The Man Who Moves Mountains, begins by carrying away small stones”.
Confucius

Many times during the last 3 years it would have been easy to sit at the edge of the mountain and say, “We are done, we give up. This mountain is too big and we cannot move away one more small stone." However, we keep moving stone after small stone, even when we aren't certain which one to carry away next.
We are unwilling to let the mountain “win”.

During this illness, our motto has been:
Leave No Stone Unturned.

Keep seeking answers, keep researching, keep pushing doctors to think again, try again. Each doctor, each article, each treatment intervention, has been one more small stone carried away from the mountain. This has paid off! We are absolutely elated with Riley’s progress, and we are determined to keep carrying away the stones, until the mountain in his way is gone.

He is still experiencing a list of symptoms that hinder his full recovery. His facial symptoms cause severe heat, redness and at times swelling. He is never able to be away from the coolness of a fan. You might be inclined to think….”well that’s not so bad to live with, given how debilitated he was for so long? A little heat in the face is manageable”.

It is in fact very debilitating.

So Hot. So Red

A particularly bad day with lots of swelling

He also has limited energy, jaw and dental pain, headaches, fatigues easily after exertion, and needs oxygen support several hours per day.

Thankfully his medical team, although perplexed by the severity of these facial symptoms, are narrowing in on what seems to be at the root cause of this unusual presentation.
Riley received the CCSVI treatment in February, after MRIs and CT scans confirmed compromised blood flow. This procedure improved the circulatory issues from the neck down and gave almost immediate relief from some of his other symptoms. However, it failed to relieve the facial heat and swelling. In fact, at times the heat seems worse than prior to the CCSVI procedure.

How could it help so dramatically in one area of his body and not the face?
Dental x-rays, MRI, and CT scan are confirming that the jaw bone, palette, and styloid bone (right next to the jugular veins), have all shifted position during the time he has been sick. The CT scan showed severe occlusion of the upper left jugular vein (an area not treated by CCSVI), most likely caused by these structural abnormalities. Comparing pre-Lyme disease dental x-rays with his present day bone structure is disturbing.

The suspected cause: 2 years of facial paralysis.

The surgeon who performed the CCSVI explained that due to the heavy load of infection and toxins in the blood, the veins of a chronic lyme patient are similar to the plumbing in a backed up kitchen sink- full of sludge which compromises proper blood flow. In addition, Riley's upper jugular veins also have "a kink in the pipe" caused by the messed up bone structure. Picture a garden hose that gets stepped on, causing pressure and bulging.

He needs treatment to correct these structural issues. After countless hours consulting with doctors both here in Canada and in the USA, we have been referred to a clinic in the USA. They specialize in the diagnosis and treatment of cranial facial issues related to vascular disturbances and autonomic dysfunction. Whew- that’s a mouthful.
Who would ever have thought such a place existed?

We hope to take Riley there in July, and would appreciate your thoughts and prayers. If Riley responds favourably to these treatments it will likely mean repeat visits to this clinic for “tweaking” along the way. The treatment will include appliances built for his mouth and neck.
This is not Lyme disease we are dealing with, but rather the damage caused by the longterm infections.

We are hesitant to go ahead with one more costly treatment plan with uncertain outcomes, but we are determined to tackle these last symptoms, so Riley can continue to heal. It feels like we are close.
The specialists who will treat Riley are having success with some very unusual symptom presentations. This is hopeful- because everything about Riley's case is "unusual".

We wish this could be done closer to home.
We wish some of this would now be covered by Alberta Health Care.
We wish Lyme disease had not presented itself in such a cruel and unusual way.

We are determined to “leave no stone unturned”.
We have been able to do this so far, because of all of you, our family and friends who have stood by us.
We are also so grateful for the “Riley Fund” that has allowed us to keep plugging away at all of this. We would be in a very different place on so many different levels without this practical help.

Parting Shots...The Joy of Recovery!