March 15, 2010

CONGENITAL LYME


congenital lyme.
wow.
how do i even begin a post about congenital lyme.
it is mind boggling
earth shattering
especially when it is in the context of my family.
my children

2 of my 3 children have now been diagnosed with congenital lyme.

while this does not come as a complete shock to us, i understand that it does for others. and so i am going to try and answer some of the questions folks have sent our way lately.

congenital lyme? how is that possible - your blog says that you got sick with lyme in july 2006?

yes, my blog only details and describes my journey with lyme as starting in july 2006. which is true -that is when i had a classic progression of the disease and became most symptomatic. by the time i was finally diagnosed in april 2007, i had 57 of the 72 symptoms used on a diagnostic lyme disease checklist.

for the sake of simplicity, i just chose to blog about my journey starting in july 2006 because it is difficult to precisely pinpoint when i contracted lyme. there is the possibility that i was bit again in 2006 and re-infected or that i contracted lyme when i was 16 and after years of holding the disease at bay, my immune system finally signed off on hiatus which ultimately culminated in my explosion of symptoms in 2006.

since my diagnosis, 3 LLMD's have reviewed my case and all concluded that it was most likely that i was infected with LD at the age of 16.
therefore, if i contracted lyme as a teen...then there is a 40- 50% transmission rate between mother and child - either in utero or through breast milk. yes, that means that all of my kids could have contracted lyme from me.

what happened when you were 16?

to make a long story short - when i was 16, one night i went to bed 'healthy' and woke up in the middle of the night because i was having trouble breathing. when i tried to get out of bed, i could not because i had lost feeling in my legs. i could not walk. i spent a week in hospital - and then walked with a cane for the next 3 months. additionally, i had profound fatigue, trouble with concentration and developed migraines.

i endured a spinal tap, countless other tests, and was seen by a myriad of specialists. nothing was ever found to be medically wrong with me. a pediatrician suggested that maybe i was just depressed. this conclusion derived from a 15 minute conversation he had with me. one where he asked me about school. i told him that i had always planned to go into kineisiology but after taking science courses had discovered i wasn't cut out for it. however, along the way, i had discovered a love of writing and had decided that i would like to pursue a career in journalism post- graduation. based on that, he concluded that i was depressed because i had "given up on my life long dream of becoming a kineisiologist." psshhht!

with no help from the traditional medicine field, my parents sought out the help of a naturopath for me. i eventually recovered from my 'mystery illness' but struggled with periodic bouts of severe fatigue, migraines and flu-like symptoms every couple of years after that. in other words, i was never quite the same. my GP always labeled me as just having a 'weak immune system'.

ok, so my head is spinning here. let me get this straight, if you were sick with lyme at 16 but not treated for it, why did you seemingly 'get better' back then? how is it possible that you have been fairly healthy since then?

"if lyme disease is not diagnosed and treated early, the lyme spirochetes can spread and may go into hiding in your body. weeks, months, or even years later you may have problems with your brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. symptoms may disappear without treatment and reemerge later; and different symptoms may appear at different times." (calda.com)

lyme is both an opportunistic and incredibly stealth infection. it can lay dormant in your system and then be reactivated by any number of either internal or external factors. it is an incredibly and notoriously smart pathogen. complicated to totally explain but for simplicity's sake, think of it in terms of the virus that causes chicken pox. even after your itchy red chicken pox go away, the virus remains in your body. it never goes away. stress or another illness that weakens your immune system can trigger a reactivation of the chicken pox virus. while you don't come down with the same symptom (chicken pox) you develop a new symptom (shingles). yet it is caused by the same virus - one that, while always present in your body, isn't always active or causing symptoms.

after spending a lot of my 20s suffering from unexplained bouts of fatigue, migraines and flu like symptoms, i got sick and tired of being sick and tired. i got very serious about taking care of myself and "managing my health" as i came to coin it. certainly exercise, nutrition and vitamins helped me to strengthen what i had been told and believed was my 'weak immune system'.

once you found out you have most likely had lyme since 16, and given the 40-50% transmission rate of it between mother and child, why not immediately get the children tested for lyme after your diagnosis?

at the time of my diagnosis, all the kids were more or less healthy. we did have some concerns about both the boys but
the LLMDs we talked with did not think that treating asymptomatic kids was advisable. we soon learned that within the lyme literate medical community there exists very differing views about treating lyme in asymptomatic children. some believe it is best to treat it and others say it is not; that treating it would awaken a sleeping beast. as you can see there are no clear cut answers.
so very much is just unknown

at the time, i was (and have been) so ill and our medical costs are so staggering that we just could not see how we could financially, physically and emotionally take on more lyme.
it became clear to us that while we needed to have lyme on our radar where the kids were concerned we had to hand over this whole sordid issue to God. the best thing we could do in the face of unclear answers and the unknown was to TRUST Him to direct our paths and lead us across that bridge if or when it was needed. we had complete peace with this decision.

and now you have crossed THAT bridge?

yes. as soon as parker was diagnosed, we knew the time had come to cross that bridge and have taylor and avery evaluated for lyme now too. and so we immediately scheduled appointments with DR D for taylor and avery

waiting over the past 6 weeks for this appointment and knowing that we were facing the possibility that all three of our children could be infected has been...well...i don't even have the words to describe it. it has been an indescribable heaviness that has weighted my every step, burdened my every moment and consumed my every thought.

even though we have known for a long time that one day we would have to cross this bridge, oh, how we had hoped that this day would never come
and now it has come
and we know.
avery is healthy
taylor is not.


the diagnosis

no lyme was detected in avery's body.
when DR D told us that avery did not have lyme. i burst into tears. graham welled up. even DR D choked up. it was extremely emotional.
DR D found that avery has a mild yeast issue in her gut but aside from that, she has been given a clean bill of health.


is it possible that the lyme bacteria is just hiding and waiting for an opportune time to strike?
possibly
we hope and pray not.
often girls with asymptomatic congenital lyme begin to exhibit symptoms around the age of 8. so we will watch her closely over the next couple of years
that being said
we trust that it is only her little gut sugar bug that she will battle

taylor has lyme.
when DR D gave us the news, my world just went numb.
not numb from shock, as we were not surprised by his diagnosis
rather
numb from the kind of white, hot searing pain that comes from a strike that cuts so profoundly deep that it renders one incapable of feeling...the world around becomes surreal and awareness of your surroundings and interaction with the world around is done on autopilot.
over the last couple of days, the numbness has slowly started to peel away in teeny incremental pieces, shed through tears of grief, anger, sadness, pain, loss, worry, and an awareness that alot of the pain i feel over this diagnosis stems from a great worry over the effect this news has on taylor's emotional and spiritual well being. my heart aches that he must face this diagnosis and come to terms with it. i have no doubt that he has the capacity to cope with it but it is a lot to cope with - especially when he is at such a pivotal time in his life.


the final analysis

most days i am so wound up in a ball of pain and misery that is often hard to see any light in the profound darkness that so ominously has settled around me. most days it feels like we are being attacked from every angle - spiritually, physically, emotionally and financially. i am being forced to delve deep into my relationship with my Savior, straining to see His sovereignty in this...and desperate and pleading for Him to rescue and redeem this that feels so dark and so incredibly unfair. i struggle with wondering why the scope of our nightmare seems to just broaden despite ours and countless others prayers for redemption, for rescue, for healing. where is God in all of this?
today, this verse has come in response...


"We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. 2 cor 1:8-10

the final analysis?
Jesus is in the midst of this darkness with us, he hears our prayers and he will deliver us...please keep praying for us as we weather this storm!!



weathering the storm

as i sat down to write out and sort through my thoughts today, i was reminded of a devotional i read a few months back. i re-read it and found great comfort in it.

it's entitled "how to weather the storm"


The Bible does not remain silent in regard to storms. As a matter of fact, Jesus took his disciples right into the midst of one, leaving them to weather the storm while He took a nap. Do you ever feel as though the Lord was sleeping while you faced your storms alone? How many times have we reacted to circumstances in our lives, asking the Lord, "Don't you care that I am suffering so much? Why don't you DO something?" This was exactly how the disciples reacted to their troubles.

Jesus' disciples experienced the exact same thing. After a long day of ministering to the crowds, Jesus told the disciples they were going over to the other side of the Sea of Galilee. They were obeying Jesus' command when they boarded their ships just as evening was falling. Jesus led his disciples into a storm just as the light was failing. Let us read from the book of Mark exactly what happened:

"That day when evening came, He said to His disciples, 'Let us go over to the other side.' Leaving the crowd behind, they took Him along, just as He was, in the boat. There were also other boats with Him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion.(Mark 4:35-38a NIV)

Before they knew it a terrible storm hit and their boat was full of water. We all know what happens to a boat when it gets full of water: it sinks. If you had Jesus in your boat, wouldn't you feel pretty safe even if you were in the middle of a terrible storm, even if it looked as though your boat was going to sink?

Obviously the disciples didn't feel very safe; they became very alarmed and were afraid for their lives. What was Jesus doing through all this? He was asleep in the back of the boat. How could anyone sleep through a storm that was so bad the waves were crashing across the boat, filling it with water, and threatening imminent destruction for all?

Is it possible that Jesus was not concerned because He knew (being the Son of God) that it was not in God's plan for the disciples to all sink in this storm? Is it possible that Jesus (being the Son of God) knew something about the destiny of His chosen ones? Keep this in mind as we continue with the story....

to finish reading "How to weather the Storm" please click here :)


is there any good news to report?

there is good news to report!
yes. really.
taylor's testing revealed only a low level infection of lyme. he does not have babesia nor any of the other co-infections that can accompany a lyme infection.
this is good news!

additionally, DR D concluded that the CMV infection he contracted in november is still very much active. testing also revealed that he has an additional infection called EBV. DR D believes that these two viral infections are most likely causing the symptoms he has been struggling with for the past several months.

she has prescribed a 2 month treatment plan to address these infections. we are hopeful that this treatment will resolve his symptoms. so for the next 2 months we will focus on treating the CMV and EBV. once we have dealt with these then we will have a clearer picture on what needs to be done to address his lyme infection.

parker has made remarkable progress. he is by no means out of the woods yet but it is very evident that treatment is working. DR D was encouraged at how well his body is handling treatment. he is now on malarone, doxy and tinidazole. the herxing adults can experience from tinidazole can be very difficult to handle. so i was pretty concerned when DR H and DR D prescribed it for parker. however, they reassured us that kids respond really well and don't seem to suffer the way adults do on it. and right they are! parker started on the tinidazole on march 5. once we added in the tinidazole, parker's symptoms really started to improve. even his liver function has gotten better! in the past week, he has been able to go swimming, go for a bike ride, and he even was able to make 2 brief appearances at school (much to the delight of his classmates!)


while we celebrate when he is able at the same time it is also necessary to prepare him and help him cope when those abilities slip away again. for just as suddenly as his 'spontaneous reprieves' begin, they can come to an end just as quickly. this is all part of the emotional and physical roller coaster that is part of treatment. he understands and is coping. we are grateful for his incredible resilience. we were encouraged to hear from DR D that she feels strongly that these spontaneous reprieves are indication that he has not suffered any permanent damage.

yesterday, he even went outside to shoot some hoops. just a short time later, he came back into the house. he was crying. and my heart dropped as i worried his pain levels had escalated and he was feeling sad and frustrated. "hey buddy, what's going on?" i asked

his response came in a teary, breathless whisper of wonder,

"mom, i have NO PAIN! i have NO PAIN! i just had to come in and tell you."

this was the first time he has not been in pain since september. what a miraculous and wonderful reprieve! treatment is working!

God hears our prayers and he is answering one miraculous step at a time.
and
God is sovereign...all the time...even in the midst of darkness and even over congenital lyme.
and that
is the best news of all.




6 comments:

Dylan said...

...

You know that for me not to know what to say is a big deal... seeing as I'm such a beautiful, gifted, and humble speaker. ;-) But I am, literally, speechless in all of this.

But I can tell you this: every Wednesday a group of 10-12 people gather together in the basement of an old church and we pray for you and your family. We pray for healing, we pray for strength, we pray for perseverance, we pray for hope. There is tears and cheers of joy at different times. But in it all, we pray.

I miss you guys, all of you. Part of me wants to move to LML just to hug each of you regularly.

My New Life said...

Oh Shannon my love, I don't know what to say. As you hadn't blogged in a while I was concerned that things were very rough for you all there, so I sat down to send you a message that you were loved and thought of and cared for. Imagine my horror on going to your site to check if there was anything new and reading about Taylor. You brave, brave people. I feel so helpless here on my side of the ocean. How you will all get through this I do not know but I know that you will. God sends the biggest tests to those with huge hearts and clear souls and that is you my darling girl. I send you all a prayer every day, which seems so little but is all I can do. For the mercy of a pain-free day for Parker I am so utterly thrilled - long may those days continue, and return quickly when they dissappear. As for the rest of your beautiful family - you all have each other, which, from what I have read so far, appears to be the biggest gift that God could send anybody. You are not alone, you are never alone, and friendship stretches around the world to you. Ever yours, Bev xxx

Renee said...

Your strength and courage during such an unbelievably difficult journey is amazing and gives us all strength to keep going. Your story of how God walks with us in the storms of our lives is what I have been focusing on the past weeks since my diagnosis with uterine cancer. I will be having surgery on Tuesday, but til then I am lifting you and your sons up in prayer for your batttle with Lyme. Jesus is our "Stormwalker". Keeping our eyes on him will give us the strength we need to walk through the storms....
"I can do all things through Christ who continually pours His strength into me".
Phil 4:13 (paraphrased by a friend)

Shanan said...

Shannon,
Thank you so much for taking the time to explain this to all of us. We can't imagine what you are going through...

Julie K. said...

That must have brought you to tears when Parker said "I HAVE NO PAIN" - what glorious words to hear. And I know that you all needed some encouragement. To feel that there is some light at the end of the tunnel, the tunnel that seems to broaden. That is also great news that Taylor does not have any severe symptoms right now. And that Avery does not have Lyme.

This must be so difficult for you Shannon, to be going through so much yourself, and to also be going through this with your children. How are you feeling these days? Any relief in your symptoms?

I pray for brighter days ahead, baby steps towards healing and wellness, more days for Parker to be at school, your faith to remain strong (you are SUCH an encouragement, and your faith is SO STRONG), people around you to continue to support you with prayers, finances, meals, emmotional support, friendship - whatever is needed. I am thankful for your community that helps out so much, and is so supportive, and for the understanding of the school and the teachers. And for the joy on the students faces when Parker can come to school, whenever he can.

Take care. Lots of love, hugs and prayers being sent your way!!

Lost in Thought said...

Shannon. Mom of 8 here. hubby has had lyme for 20+ years - undiagnosed until 6ys ago - when i was pg with #8. I have it too. We also have morgellons.

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body."
2 cor 4:7-10

http://www.youtube.com/watch?v=RbDuM-f36Hs

so much i want to say - but the words won't come. i understand. i care. i cry. . .

there is hope
there is light
there is life

you will get better
God does have a plan
He is God - and He is good
. . . all the time.

Love,
Jo