Clueless

In my last post, I told of how our adult daughter has begun treatment for Lyme disease.  The big missing piece of the puzzle is that, for many years, 15 plus to be exact, we thought she was cured.

In my last post, I briefly mentioned Momma Guilt.  Even though, as a therapist, I know what I would tell any client who thinks like I think, it is just so hard to look back and not think "Why didn't I see it?"  We were going on the doctors words that she was healed, so, once we were told that, I put Lyme Disease to rest and never thought of it again.

Well, I guess NEVER is a strong word.  When our daughter Kyra was 19, ever the independent one, she moved out on her own to Northern California with little help from us with the exception of helping her put a deposit on an apartment.  At first, things were great, but she began to get lonely because she was about an hour away from her high school boyfriend who had joined the Air Force.  Since she moved to NoCal to be closer to him, she took it upon herself to truly adult, apartment hunt, job hunt, continue college and move closer to the Air Force Base.  All that adulting began to take its toll, until, she began to realize she was feeling worse and worse.  At first, we really did think it was just the stress of trying to do too much, trying to make it on her own, but as her pain levels grew, I asked her to come home for an extended visit so we could go to the doctor and do bloodwork.

Now 20 years old and in severe pain, I took my daughter to an integrative doctor.  They put us in touch with a host of people who could help us get things done at home because she was in so much pain.  Who knew you could actually have bloodwork done in your house, a mobile phlebotomist!  A couple of days after his joyful visit to our house (no sarcasm there, she has a tremendous fear of needles, but having the peace and quiet of her own home really made the experience doable for her), the results were in, our daughter tested positive for Lyme Disease, which meant she had never actually been healed, which meant, I had missed a numerous amount of signs over the years.  Which meant, maybe we should have had that spinal tap after all.  Hindsight's 20/20 right?  And boy, looking back could I ever see clearly.

As I wracked my brain trying to think of all the things I should have seen, my mind immediately shot back to her 6th grade year.  Always a straight A student, I would more often than not make up tests for my kids to do the night before they had an actual test.  I would look at their material and make questions to give them to see what areas they still needed help in.  Kyra would always pass with flying colors (they both would actually) and we never needed to go over anything else.  Somewhere during the school year though, she started failing science.  This made no sense to me because she was passing the tests I was making up and those tests were based on her notes.  Luckily, in small town rural America (West Virginia at the time), everyone knows everyone, so when I noticed her grade was failing, I caught up with her Science teacher Mark at church one Sunday.  I explained to him that it made no sense.  He happened to mention that he had gone from paper multiple choice tests to a handheld device where the kids had to press A, B, C or D.  As an experiment I said, "Would you mind setting her out in the hall and giving her the handwritten test?"  He kindly accommodated and instantly, she went back to straight A's.

Though I had never seen any sign of a learning disability, I thought for sure that must be what this was.  Since Mark was willing to accommodate, I just thought, "Well, this is a rare occurrence, I will just keep an eye out for anything in the future".  But nothing else ever happened as far as unique school incidences like this one.  An avid reader, Kyra still mowed her way through one or more books a week outside of school, her grades stayed good.  We did notice as she entered high school, she had to work extremely hard to get the good grades, but neither her Daddy or I had ever liked school, so we just figured this was normal.  We never really pressured our kids about grades anyway.  Of course, now, with a Lyme lens to see the past clearly, I know that this is a Visual Motor Deficit and something very common with someone with neurological Lyme.  By the time she entered college, however, she suffered through two years before the work became completely unbearable.

So college takes us back to 20 year old Kyra for a moment.  We got put into contact with an amazing, compassionate, caring doctor here in our SoCal hometown and she knew all about Lyme Disease.  She put Kyra on a grueling protocol, so, with three pages of instructions, a bag full of supplements and her strength starting to come back because some of the supplements were fighting inflammation and she had finished about 6 rounds of ozone therapy, she went back to NoCal. Ok, hit the brakes....a 3 page protocol?  Remember that Visual Motor Deficit I just mentioned?  Yeah, you can imagine.  After a few weeks of not only trying to follow the instructions, but, as is typical of every Lyme patient, you actually start feeling worse way before you ever start feeling better, Kyra was done.  She called me one day and said "Mom, I just can't do this anymore.  This protocol is too long, its too hard, and I am so sick I can't even work or do anything."  And, just like that, her hope for getting better vanished and she swore off treatment.

But it wasn't just the protocol.  To make matters worse, just before Kyra decided to stop treatment, somehow my brother-in-law had found out about Kyra's situation.  He had a dear friend who had ALS and her father-in-law, a prominent oncologist n Boston, had switched his practice to all things Lyme related because they knew his daughter -in -laws ALS was actually progressive, undetected, untreated Lyme Disease.  With the best of intentions, my brother in law had put us in touch with this doctor via phone and the doctor literally screamed at us for the holistic approach we were taking to Lyme "Your house is on fire and you are just trying to get the smoke out of the chimney".  That was the kindest thing he said.  I know this doctor meant no harm, but he really scared me, and, in turn, an emotional wreck, I think I scared Kyra and turned her against treatment even more.  

As Kyra swore off treatment, I began doing even more research.  I found an author who was also a Lyme specialist  in San Diego, I bought her books and sent them to Kyra's boyfriend so he could get a better understanding of Lyme for the times he was with her.  I bought a book about a mothers Lyme journey with her daughter, but, as Kyra refused treatment, I couldn't bring myself to read it.  So I stopped and I prayed (funny how we always do everything else first, THEN stop and pray, huh? Anyone else, or is it just me?).  As the years continued to pass by, I prayed more and more that she would seek treatment.  As she got married and had the most beautiful baby girl you have ever seen, I prayed she would seek treatment for that child if she wouldn't do it for herself.  I overpowered every ladies bible study I went to asking people to please pray she would choose treatment.  

One of the reasons I believe she didn't seek treatment is her unbelievable ability to power through.  When she was a toddler I began saying to her "What can you do?" and she would reply "Anything!" and I would say "No limits?" and she would excitedly repeat back, "No limits!!!".  Man do I think we instilled determination in that girl!  Looking at her, you would never know she is sick.  She takes such amazing care of her baby girl, a toddler with the energy of 100 toddlers.  Even though they only live 3 miles from us, she Facetimes us every single night as they do their Momma/Daughter bedtime routine.  Its a minimum of 30 minutes of laughter, songs, prayers and rough housing to get out the excess energy.  I'm exhausted by the end and I'm not even the one doing it, but she does this alone, every single night with the exception of nights our grandbaby sleeps over with us.  When Kyra starts to really feel pain, she gets up and cooks. or cleans, or does a simple task like cut strawberries, just to not be DOWN.  It is one of the most inspiring things I have ever seen.  This week she felt really rough, but, instead of wallowing in self pity, which she had every right to do given her circumstances right now, she not only joined me for worship practice, but she mustered up the strength to get up and sing with me Sunday morning in front of the whole church. 

Prayers were answered as she recently came to her Daddy and I and said its time to get better.  SO you know that author I mentioned earlier?  You can bet I didn't waste a minute jumping on her website and  making an appointment.  Though I was there for the first appointment, just to see how it goes, this is my baby girls journey, and I know she is strong enough to handle it on her own.  She hit the start button and now there's only one way to go from here!  

TODAY

Kyra is three plus weeks into a much simpler protocol that will tell the doctor which Lyme parasites are still active in her body so we will know exactly which ones she has to fight.  The first week, she had a pretty strong reaction to Borrelia.  The second week was Babesia and, good news, she had no reaction, so that means one less parasite we have to fight.  Then the third week, Bartonella.  Within one hour of starting the protocol for Bartonella, she knew this was the worst one yet and probably the biggest parasite she will have to slay, as the pain that regularly shoots through her joints suddenly began to feel like rods being drilled through her legs.  She has journaled and taken notes on symptoms just as the doctor asked her to do, and will return to the doctor this Thursday for a follow up and to see what her next steps are.  Please join us in prayers for complete healing, not only for Kyra, but for everyone with this horrible disease! 

Next week, I will be back with some results from this weeks doctors appointments, as well as continuing to step back in time to rehash things this Momma didn't see as Kyra was growing up that I see so clearly now as Lyme.

When Someone You Love Has Lyme

 My coping skill is writing, so, over the next one to two years, if you so choose, you all can walk alongside us, pray for our family, as our family walks along side someone we love while they receive treatment for Chronic Central Nervous Lyme Disease. With my daughters permission, the informational journey starts right now & will continue on my Hills of Mercy blog. 

In the early 2000's, we had moved from the heart of Worcester, MA, where our house practically sat on the campus of Worcester State College, to the woods of central MA where we were blessed with a couple of acres smack in the middle of no where. When the weather was nice, we were outside a lot, hiking, picking blackberries in the woods behind our house, walking Ty-Ty our grumpy, oversized, purebred schitzu, down country roads. To make the walks exciting for the kids, Rich had proclaimed the road across from our house "swamp monster road" and off we would go, in search of the nonexistent central Mass swamp monster he had made up for their entertainment.  

One day, when Kyra was 4, I noticed a weird circle on her back, a bullseye, right at the top of her spine. Our friend was a paramedic & he said he thought it might be ringworm. For several days I treated it as such, but it didn't go away. So I took her to our small town pediatrician & he immediately knew, she had Lyme Disease due to a tick bite.  

A little history about Lyme disease for those unaware...during the Korean War, our government used a lab in Lyme, CT to inject ticks with parasites that they would later plan on releasing in Korea, but, of course, the ticks escaped the lab & the parasites began to enter the woods of New England via the ticks . The goal was for the parasites to enter the nervous system through a tick bite. For the longest time, Lyme Disease was very centered around New England, but now it's everywhere, though more rare in places like California, where we are now.    

Shortly after the diagnosis, one side of her face became paralyzed & we started treatment immediately. To this day, her little preschool picture hangs on our Christmas tree each year, a childhood decoration, one side of her face drooping. What was more shocking than the paralysis, however, was the extreme joint pain. Always a tough child with a high pain threshold, she would wail at the excruciating pain, mostly behind her knees. Up to this point in her life, she was always a daddy's girl. Had you seen her, she was probably riding on her daddy's shoulders. But those shoulder rides came to an abrupt stop, as, her legs dangling over his shoulders would hurt her the most. I have never heard her cry so hard or so much. About this time the horrible nightmares started as well.  

 As the doctor began a 3 week antibiotic regimen, the pain ever so slowly began to subside. Her beautiful little face went back to normal (in the attached photo it is almost healed). Along the way someone had mentioned to us how serious Lyme disease was, so we drove to Boston multiple times for second opinions & always made sure our Boston doctors were on the same page as our wonderful hometown doctor.  

As I tell this story I realize I have to go back to say, during this time, not only was our marriage falling apart, but three years prior Rich had almost died at the hands of a doctor who made a mighty mistake & then lied to us about it. I've written many times about both of these experiences, but, as we began this Lyme disease process, we were already in a stressful place marriage wise & extremely suspicious of doctors in general. Both of these things would eventually play a part in the future of this story and the mom guilt I still carry to this day. 

After the three week treatment protocol was done, all doctors involved assured us she was healed. How could we know? That was the major question on our minds. All answers pointed to the same thing...a spinal tap would show if all the parasites were gone. But a spinal tap on a four year old, we were told, came with a 25% chance of paralysis. Having just survived the hideous experience with my husband almost dying, we managed to decide together (during a time when my husband and I just speaking to one another was difficult) that we would trust the doctors opinions that she was healed and not risk the spinal tap. We were so stressed, we just couldn't risk anything else going wrong.  

Life went on, and we miraculously survived the next couple of years that were full of stress due to the state of our marriage. But all that mattered to me was that Kyra was healed and our kids were safe and healthy. Or so we thought........ 

TODAY

On a recent plane ride to Oregon, I finished a book I had held onto for the last 3 years but never read. It's about a mother's journey helping her teenage daughter find a cure for her Lyme. I couldn't bring myself to read it all those years I had the book, because, at the time, Kyra was choosing not to seek treatment. But now that she has chosen a path to healing, I was able to open it up and dive into another mother's journey. The book was very well written and informative, so many similarities to what we have seen with Kyra, but it was missing something......Jesus was not a part of their story. But He IS our story. As I told Kyra that I thought the world needed to see a faith based Lyme journey, she graciously agreed that I could write it. This is only the beginning. To God be the glory!