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