November Updates

 HI EVERYONE...

Before we give you an update on Riley’s situation we wanted to send a big thank you from Riley.

Riley turned 17 on October 28^th. Many of you sent notes, messages of encouragement, stories and memories, photos and also some wonderful gifts to lift his spirit.

This was an incredible gift to Riley.

Lyme disease is very isolating. He only sees the four walls of his bedroom, his tired family, a lot of IV bags and pills to swallow, and a few nurses and doctors here and there…not much fun!

WE SEND HUGE THANKS TO ALL OF YOU FOR BEING PART OF HIS CHEERING TEAM AND REMEMBERING HIM ON HIS BIRTHDAY.  He was very ill and weak on his birthday so we spread it out and only read, shared two or three wishes per day.

Thanks also to the Birthday elves who arrived late one night to adorn our house with birthday wishes for Riley.  Got a few looks of astonishment from those passing by.

 
UPDATE

At the end of October- Riley had been on oral antibiotics for almost 2 months with no visible improvement in his condition.  With Lyme disease, treatment is expected to create an increase of symptoms for a time- before visible improvement is seen.  This phenomenon is called a Herxheimer reaction….a what??????

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment. Typically the death of these bacteria and the associated release of endotoxins occur faster than the body can remove the toxins. The intensity of the reaction reflects the intensity of inflammation present. The reaction is seen in diseases caused by spirochetes, such as Syphilis and Lyme disease.

Riley’s response to treatment has been severe and very hard to watch.  All of the symptoms he had been experiencing prior to diagnosis have increased and he is also experiencing some troubling and debilitating neurological symptoms, including facial paralysis, tremors in his hands/fingers, extreme sensitivity to sounds- we have to keep the house almost silent otherwise he experiences panic, anxiety, shaking and severe sweating.

We believe this increase in symptoms is both a HERX (the buggers dying off) as well as the oral antibiotics perhaps not adequately addressing the bacteria load.

In consult with our doctor in California…it was decided that Riley needed to switch from oral to IV antibiotics as quickly as possible.

The neurological symptoms indicate that the bacteria has crossed the blood brain barrier and that the oral meds are not getting a foothold on the bacteria raging in his body…more aggressive treatment is warranted.

At the beginning of November we began to make plans to take Riley to California to have a PICC or Port Catheter line inserted so he could receive IV antibiotics.  The procedure is something readily done here (for many other diseases), but because of the Lyme diagnosis…getting a doctor to agree to do this for treatment seemed impossible.

 

The progress we are waiting for:

• Riley’s facial paralysis to reverse (as happens for the majority of Lyme patients)
• Other neurological symptoms to subside
• IV meds to begin to lessen the symptoms

We were told by Dr. H. (California Lyme specialist) that it would be a long road...
a marathon, not a sprint….
a very hard bumpy path back to health. 

He was right!!! 

We have never experienced anything so dark in our lives…..however, through it all we have been held up by our faith, the enduring presence of friends and family (all of you reading this blog), and the continued words of hope from our medical team that he will get better.

“Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light." - Dr. Albert Schweitzer