Friday, March 16, 2012

Wishing No News Meant Good News


It has been a very long time since we last posted an update.
We really wish that no news meant good news for Riley.

Unfortunately during our absence on the blog Riley has experienced a continual increase of disturbing symptoms and is suffering with unimaginable pain.  Riley’s journey continues to be a very complicated scenario.
We are limping along, and to be honest we are physically, mentally and emotionally depleted. His round the clock care is so intense that I have found it difficult to put words to the page for the blog…but here is an attempt to summarize what is going on.

First of all- Riley’s increased symptoms:
  • Riley’s facial tightness has once again increased.  It is not the Bell’s Palsy that he experienced last year, but rather muscles so tight that it is very difficult for him to open his mouth- its as if his jaw is wired shut and he has to “will it open” every time he needs food or pills.  Even with this effort I still have to use the dixie cups to pry open his lips to get anything into his mouth….it is very labour intensive, tense and exhausting (for both of us). 
  • Most days he can only nod yes/no because it is so difficult to push words out. All the wonderful conversation we were having this past summer is impossible right now. A couple of times a week he musters up the energy to whisper out a few words.
  • Sensitivity to touch on his face is now extreme as well.  Every daily routine including teeth brushing , face washing and eating/drinking is intensely uncomfortable for him. If I brush his lips or bump his cheek he says it feels like he is being stabbed. Sometimes an unexpected spill of water or something touching his lips the wrong way can cause several minutes of full body shaking, tremors, sweating and agitation. It is really beyond description and so difficult for Riley, who by nature is so tolerant and self contained. 
  • The other very disturbing symptom that has persisted the last couple months is the curling of his toes. They are so tight that the knuckles on his toes turn white and he cannot unclench them. The tightness travels right up his leg and into his groin and hip. This comes with almost constant tremors in his feet and what looks like electrical buzzing-it’s horrid!

We are very thankful for small mercies….his sound sensitivity continues to be less intense and this allows him to pass the time listening to audio books, watching golf, soccer and now some hockey as well. He is able to listen to us talk and read to him- and finds pleasure in this, even though he can’t really respond. This is such a gift as it allows him to engage in  activities that bring him some distraction from his symptoms and to participate in the world- even if it is still in such a limited way.

He also continues to work very hard at building physical strength.  He is doing “bed physio”…with his arms, legs, fingers and hands. Using the support of a walker he is now able to stand up straight for 30 seconds at a time. When he first started using the walker, he could only stand up straight for 5 seconds.  He is also very slowly gaining more control of his hands and is able to hold a Kleenex to wipe his own nose- something impossible for so many months. 

The amazing thing is Riley’s soul seems to be intact. YES really!
 He remains positive and whispered out words a couple of days ago to say that his soul is burning brighter than ever and he is “in there” waiting to be set free and that he never doubts that he will be well one day. He says he is learning so much about himself and feels God in every moment of his suffering. He doesn’t express anger or self pity or despair ever- it’s really quite remarkable!
He senses the prayers and support of everyone around him and feels grateful and hopeful- now THAT IS AMAZING!!!
I have come in contact with other Lyme sufferers who struggle with their will to live because the pain and suffering is so great- so we remain thankful for Riley’s spirit in all of this. We learn from him daily.                                




So what does all of this mean? WHY is he not getting better?? The million dollar question!

          
Our medical team continues to be very committed to his “case”.  Although they have seen patients before with very complicated scenarios like Riley- they usually see more progress by now, so are determined to get to the bottom of his particular issues and help him overcome this horrid disease. Even though there are many factors keeping him sick, three main issues seem to be key (a long and winding tale- hope you can stick with the medical chatter):


Bartonella and Biofilm
Bartonella is one of the co-infections (tick borne bugs) that we have mentioned before in the blog. IT IS NASTY and is contributing to many of the horrid symptoms mentioned above- especially the neurological and gut symptoms.  It is much harder to treat than Lyme.
The bacteria are really good at laying down a protective layer called biofilm.
Bio-what?  Biofilm is basically a slimy saran wrap that coats the bacteria and keeps the antibiotics from getting to them. Great!!  More sophisticated tests have indicated substantial biofilm….sounding more and more like a science fiction movie right??  When appropriate medications are given to break-up the biofilm, significant numbers of bacteria are let loose and the antibiotics can do their job. However, with Riley- because of his trouble with detoxing- this has to be done very, very gently.
Aggressive treatment is not for Riley.

Biotoxins
Another key issue that Riley’s medical team believe is getting in the way of progress is what is called “BIOTOXIN ILLNESS”

Last year while in California, testing revealed he would have a more difficult time with treatment- in particular with the removal of toxins produced from the bacterial die-off. Little did we know then- just how much trouble, or the cascade of other problems he would encounter on his road to recovery.
This testing provides specific insights as to the patient's ability to remove biotoxins effectively from the body. It is estimated that about 20% of the general population will be found to have genetic types that would increase the likelihood of more severe illness if exposed to biotoxins produced from Lyme disease or other biotoxins such as molds.

Once exposed, genetically susceptible individuals are unable to clear the toxins naturally, and that sets in motion a biochemical chain reaction which disrupts normal processes in the body and results in a  disregulation of the body’s innate immune response.
At the core of why one person becomes ill from this exposure and another doesn’t is because of their genetic susceptibility (or predisposition)- what is built into their DNA. When the body is faced with a foreign substance, it immediately begins to process that substance- determining if it is good or bad, friend or foe.  If the body determines the substance as foe, it will develop antibodies to bind and eliminate these substances, called antigens.            
Riley’s body can’t do this on its own. It then becomes a vicious cycle -the foreign antigens (substances) stay in the body, causing the immune system to constantly fight back.  This causes so much inflammation in the body that it leads to chronic illness, and the occurrence of many symptoms.  His entire body suffers from friendly fire from his own innate immune system, and essentially goes haywire trying to eliminate the foreign toxins.
SO- knowing Riley’s genetic issues, the severity of his symptoms, and the lack of progress with the best Lyme disease treatment possible….the doctors began to suspect other biotoxin issues and ran a whole series of tests on Riley to reveal that not only are the Lyme related bacteria causing troubles for him but likely there is exposure to other biotoxins.- MOLD.
We were asked to test of our house to see if there is any evidence of water damage- causing mold mycotoxins. We thought this was far fetched because we can’t smell or see any mold and recently renovated much of our little 55 year old bungalow.
UGH!!! Tests have come back and it appears that there is mold somewhere.  The levels of mold mycotoxins (the ones that cause trouble) are way, way higher than they should be. It also fits Riley’s symptom history.

REALLY- what next we ask in disbelief?
To make this long, long story, shorter- we are in the midst of planning a move out of our house…ASAP.  We must see if this is indeed a contributing factor.  Riley and I will move to a condo and keep Terry and Evan holding down the moldy fort in Wildwood.  We need to get Riley out to see if this helps, and then we can work towards finding the mold and remediating, if possible. We can’t do this with him in the house.  Mold spores travel in the billions in the air, through the heating vents, and on all surfaces.  Water damaged buildings can harbour very large amounts of spores, and often go unnoticed until someone is getting ill from them.  We suspect the damage is in the walls somewhere near plumbing in the basement.
It is likely that this sensitivity to mold mycotoxins would never have posed a risk to Riley if his body and immune system hadn’t already crashed from the Lyme toxins. It is a double whammy.
All of this has answered for us why we hear of some Lyme patients having a much easier time regaining their health once on appropriate antibiotics to kill the bugs. Their bodies are able to more efficiently deal with the toxins and thus get better.

Is there good news in all of this?  We’re not sure. 
Fortunately, there is a brilliant team of researchers and physicians finding new treatment options for biotoxin related illness. We have started some of these treatments, and once out of the house, will continue with these.

We are overwhelmed by the complexity of all of this, and terrified by the niggling questions and the “what ifs”.
What if…moving him doesn’t help?  
What if it has been too long and his body too depleted to rally?  
What if his body doesn’t respond to the biotoxin elimination treatments?
What if we all lose our minds and health in the process?

Moments of discouragement and fear are part of our everyday experience right now. Somehow though, we continue to limp along.  Riley’s will to fight all of this and his faith- is our driving force and inspiration.

                                    
So many of you have asked if there is anything you can do-YES.

 Continue to pray and imagine Riley healthy one day. 
Keep telling us that we will make it through this terrible nightmare.
Your emails, meals, notes, encouragement and practical help keep us going.
Please know that your connection really matters and we appreciate it so much.

Some practical things we are needing:
 Help with errands, grocery shopping, pharmacy runs etc.
 I am looking for someone (or a roster of a few) who could commit to a
couple of times a week as a “runner”. Unless I have a nurse or our health
care aide here, I can’t leave the house, and also Riley’s care is so
full time that dashing out for groceries is often not an option.
I would be thrilled to hire someone who wanted a few hours/week of
this kind of work.

RN for IV treatments….we are looking to hire a “back-up” nurse
to help more consistently with the administration of Riley’s IV medications.
The private homecare companies do not have a pool of nurses able to
administer IV meds- this usually comes from Alberta Health Care,
and they are not able to help because of the politics of Lyme treatment.
We have a great nurse who is helping us now, but often is unavailable to
come when we need her.  HELP! Let us know if you know of a nurse who
is looking for some part time hours. We would even pay liability insurance
so he/she could work privately.

We will be moving Riley to a condo within the next couple of weeks.
If any of you could be on call for some moving related errands, or could
help set up the space before we move Riley there- let me know.
It will likely take place the week of the 27th of March.

We are so thankful for….

A wonderful health care aide who has become one of the family.
Olena is here to help with so many things related to Riley’s care, and
quite literally keeps me going.

 Evan’s exuberant and healthy 14 year old energy in the house.
He is doing an amazing job at handling this difficult family life
we are experiencing. He is thriving at school and totally absorbed
with his acting and singing commitments.

 How our story has helped others find the treatment they need
for previously undiagnosed Lyme disease.

I am thankful for Terry- who turns 50 years young this weekend. 
Happy Birthday Ter!
Going to work everyday and leaving Riley is very difficult. 

With love and appreciation to all of you for caring enough to keep
reading the blog and hanging in there with us.  We appreciate it
more than any words on a page could communicate.

Warmly,
Christine













12 comments:

  1. Oh my, I'm so sorry and sad. I cannot imagine your challenges, my heart breaks to think of the helplessness and despair at watching your child in such pain. Who among us wouldn't happily take that ourselves instead of watching them suffer.

    Cousin Sus told me about the mold — moving is so terrible (and costly), I'll pray for his improvement in new surroundings. Both of us shake our heads in disbelief that a family so kind and loving to the world around them, should endure this.

    My apologies, you don't need my sadness, you have enough of your own. I will pray and think healthy thoughts for Riley. I'm joyful that Evan continues to manage and be a happy teenager.

    Happy 50th Terry, so many thoughts of you and Sue with birthdays together. Let's hope the 50th year is the charm — happiness and health!

    All my love to you. I wish I was there to help. xoxo Karen

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    1. Karen,

      your sadness is welcomed! It allows us to shed a tear or two and grieve which we need to continue doing. Sometimes we feel alone in all of this and your humanity reminds us we are on the journey together! Your compassion for Riley and our family is a gift to us that strengthens us for the next steps. Love to you and your family, Ter

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    2. Hi guys-
      Several of my Calgary family would like to help. What's the best way to reach you? Can send to my email or maybe even post a permanent page on the blog. Thanks.

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  2. Dear dear friends,
    You will make it through this. I have faith in all things post Lyme and Riley will be better one day soon and we can shocpve this whole chapter to the horrid history books. In the meantime we are going to pray our hearts out and ask god to send you the expert beakers and Hellers that you need. Wish we were there to help.
    Somehow I made it through this blog without crying but now I shall go cry. We love you all so much
    Jane and Charlie.

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  3. Christine:
    Thank you for the detailed update. I'm sorry to hear about the new challenges Riley is facing. Amazing that he can keep his spirits up through all of this--what strength of character. Our hearts go out to all of you. I wish we lived closer and could be of practical help, but please know that Riley and all of you are in our thoughts and prayers. And a better day will come. Give Terry a punch on the arm from me, and wish him a great year/decade.
    Love, Jeremy

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  4. Hi there.
    My name is Lauren, I am an LPN and registered in administrating IV meds. If i can be of any help please let me know. I am working full time at the RGH on an internal medicine unit. I would be more than willing to lend a helping hand.
    All the best.
    My email address is laurb32@gmail.com
    Sending love and light

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    Replies
    1. Hi Terry and Christine,
      I just read your blog and am so touched by what you are all going through!
      I am very good at packing for moves and would be delighted to help in any way I can with your move. I can be reached by e-mail at baronbown@shaw.ca,or by phone. I do have free time within the next week and a half and just need to know what would work for you.
      Happy 50th Terry. Hope this next decade is better for you.
      Look forward to hearing from you. All the best.
      Judi Baron

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  5. You have become doctors by default .. To translate the words of the disease to us is gratefully accepted.Thank-you ... even the veterinarian mulled over it backwards and forwards to find the path in to the cell that holds the key that needs to be unlock .
    I have thought for awhile and asked where does the strenght to go on keep adjusting itself and start each day as if it was day 1 , instead of "DAY TOO MANY." I think it is because you can clearly remember the good times that your family experienced . Each hike , each trip , gave you boundful joy that todays allows you to be able to DREAM ... to REMEMBER and to RE-INVENT for tomorrow. Namaste ... my spirit reaches out and touches you ... Pamela

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  6. Please let me help ! Weekly errands, moving... I have the time, live close, and WANT to do this.
    Karin Schlegel - kbeforest@shaw.ca - 239-6635

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  7. Touched by Riley ... and your story.

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  8. I'm so sorry for a slow response, don't think it's because I don't read the blog or pray for a solution to the bugs that Riley fights each day. He and all of you are so brave. Your story keeps us all sadly aware of the havoc these tiny bugs create.

    My own tick story...Ethan went to a school camp in June and when I picked him up, he said that his leg hurt and he thought he had been bitten by a tick. I dismissed his claims knowing he worries about health (a bit of a hypochondriac) plus he has listened to me worry about Riley and Lyme for the past several years. I was shocked when he lifted his pant leg and saw a tick's head buried below his skin with the body still showing.

    I quickly rushed him to the doctor who had a terrible time getting the tick, he eventually had to give him a local anesthetic to cut it from behind his knee. It will leave a scar. The doc didn't understand my fears and was quick to say, "here in the Midwest, ticks don't carry Lyme". I explained Riley's story but even with that, he dismissed me as an overly-cautious mother. If there was a problem, he said, we'd see the bulls-eye rash. I know this is not true but he didn't have the time or interest to listen to the facts.

    All if this to say is that I had a small glimpse into the lack of knowledge around the problem. I can only imagine how horrific it must be for families to hear medical professionals tell them that there is an easy fix or misdiagnose the disease, only to learn later that there might have been a better solution if it had been addressed early on.

    Riley has taught us a lot about strength and faith, Christine and Terry have educated us on the truth about Lyme and realities of life for those suffering. I just wish none of you had to teach me the lesson.

    My love to you all. xoxox
    Karen

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  9. One more...Happy 50th cuz! How did we ever get to be so old! :-(

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