Monday, July 10, 2023
Countering Worry
Saturday, July 1, 2023
Carrying On
I am not really certain how it is already the first of July, time continues to run away from us. Between working, keeping my husband a priority, helping Kyra through treatment and taking care of the baby, my memory blends into one giant time fog. Without viewing a calendar, its hard to recall if this is week four or five of the latest trial life has handed us, but I know each day, we all look for the beauty and gratitude to sustain us. The hope that can only be found in Jesus.
As we travel through the extensive healing process and protocol, its important to both Kyra and I to update everyone so people can see, if it works for her, it might work for you or someone you love as well. So, as of my last post, we had determined which parasites we are at war with. Last Friday, Kyra and I headed off to CVS to pick up three antibiotics, her new protocol for the month of July. Kyra had no idea of my secret prayer that somehow, someway, these antibiotics were not going to cost us an arm and a leg. With no health insurance at this time (honestly, most Lyme doctors worth their weight don't take health insurance anyway), and unable to work due to the extreme all over body pain and shakiness in her hands, Rich and I have budgeted $2,000 a month for this care for the next two years, all the while helping Richy and Lauren pull of a glorious wedding this November! Talk about leaning on the faith of God's provision! When it comes to picking up new medications each month, I just told Kyra "Download the Good Rx app", and I prayed for a miracle! Good Rx doesn't help with the holistic supplements she will be sent each month directly from the doctor, but we will use it when we can.
As we began to talk to the kind woman in the pharmacy (I note that she was kind because, is it just me, or is it very difficult to find kind, caring employees anymore?), she said to Kyra "I need a new insurance card". When Kyra told her she doesn't have insurance, she said, "You know which medications you were prescribed right?" I immediately interjected, "We know, it's not a problem" so there would not be a hyper focus on the cost. I already know Kyra feels bad that we are paying for this and there is no reason to add guilt to the list of stressors she already has. She was given hydroxychloroquine, cefdinir, and azithromycin and told to start one every few days. By the grace of God we had that Good Rx app, which, if you haven't heard of it, I highly recommend you download it. I can't wrap my simple mind around how it works and honestly, I do not care. That medication would have been $1,000, but as soon as they scanned Kyra's Good RX app, it went down to $150. Praise God!!!! Financially we also had more good news as, the initial $550 doctors fee turned out to just be an initial fee. All appointments after that are "only" $400. I know that is still a lot, but we will take any reduction at this point and the doctor is so worth it. Also in the budget this past week, a test for mold toxicity. Mold toxicity tends to go hand in hand with Lyme, so the doctor mailed Kyra a test to take and send back. We are awaiting the results of that.
I list all of the costs, not only to praise God for providing, but as another thing that needs to be addressed regarding Lyme Disease. I am normally not a conspiracy theorist, but there is some sort of correlation between this being a government created disease and some insurance companies not covering it. I will talk about this more in future posts. Imagine the hindrance if you do not have the finances to pay for all of this care AND your insurance company doesn't pay for the treatment or you do not even have health insurance. I mention that because I know there are a few people on my friends list who have had or have Lyme Disease and I would be curious to hear other experiences with reference to how care was paid for.
So far Kyra has only been able to start one of the antibiotics due to a drug reactions between the combination of two of the medicines, today we go to pick up a replacement for the one that causes the reaction. This past week she had another terrifying episode of her temperature dropping to 95 degrees combined with extreme weakness. She was basically home alone and her brother and I had to cut short what we were doing so we could run back to their house and make sure she didn't need to be hospitalized. She is experiencing a lot of dizziness, and, though I didn't mention it to her, I noticed on Wednesday when we went shopping she got extremely fatigued and we had to walk a little slower down the aisles. It was very reminiscent of the previous week when she had taken a long walk on the beach with her precious sister-in-law carrying the baby for her, but paid the ultimate price as the exhaustion from that walk left her too tired to stay at the beach and we had to leave early. But she pushes through and spent the week cleaning her house as they will have visitors this coming week.
The dizziness reminded me of yet another time in her youth when I should have known the Lyme was still attacking her body. She was ten years old and we lived in our beloved rental "Barny". Her Daddy was in Iraq for the second time and coming home, so we were about to catch a plane to Northern California where he was being flown to, for a much anticipated family vacation. Always prone to a bit of anxiety (now I know, due to the Lyme Disease), two days before we were leaving, she began to feel extremely dizzy and weak, her temperature was nosediving. Not one to rush to the doctor, ever, I began to become extremely worried and called our dear friends at her pediatricians office. Though I have had a severe skepticism of MD's since my husbands near death experience at the hands of one in Massachusetts, in our new small town in West Virginia at the time, both of our pediatricians went to church with us and were two of the most amazing women we had ever met. So I called them, and off went Kyra and I while her brother went to hang out with a friend.
My sweet doctor friends immediately knew she was dehydrated and tried to find a vein to hook her up to an IV, but they could not find one. As they tried multiple ways of helping my baby, it was clear she was becoming drastically weaker right before our eyes, so they made the decision to transfer her to ICU. Looking back, you know, I don't even know if I informed these ladies that she had ever even had Lyme Disease. Why? Because we had been told she was cured when she was four, so why would it even cross my mind that this could have anything to do with it? How I wish it would have. Our pediatricians were the best of the best, but what we have found out over the past few years is that, due to no fault of their own, most MD's really don't know anything about Lyme Disease and they get no medical training on it in med school. Lyme is not part of a standard blood panel that you would get to see what is wrong. If you want to know about Lyme, you have to learn on your own, much like the Boston Oncologist I mentioned in my previous post.
Once in ICU, she stayed overnight until she was stabilized and then they released her to come home. But now, fresh out of ICU, and with no diagnosis except for dehydration, it was time to drive to Charleston and board the plane. She still felt as though she had been run over by a train, and her anxiety levels were at an all time high, which we now know as a Lyme flair up. But we had to take this trip. We hadn't seen Daddy for nine months! And for months we had been planning our stay in Northern California, followed by a flight to Southern California where we would stay at the military friendly Lawrence Welk Resort and take the kids to Legoland (How funny looking back that we were clueless to the fact that in six short years, we would be living 20 miles from that resort! Had you told me that at the time, I would have called you a flat out liar and out of your skull!!)
As we sat in the tiny boarding area at CRW, she looked at me and said, "Mom, I can't do this". Always one to want my kids to be tough (just ask her about the time her Uncle Frankie accidentally broke her finger playing football with her and her brother and we didn't find out until six months later at her next sports physical!), I was compassionate to a point, but basically gave her a "Buck Up" attitude and said the trip was paid for, and Daddy was waiting for us in San Francisco, we could not disappoint him. I will never forget the look of shear panic on her face when she realized I was going to make her stay locked up on an airplane for over five hours. In my own mind I was envisioning an emergency landing somewhere over the Mid-West due to my poor babies panic attack, but I never would have told her that! Of course she did it, because she's Kyra, and we made it, and, in the end, that vacation ended up being one of our best family memories we have.
It wouldn't be the last time she would have to be tough. I know that her faith plays a huge part in her intense determination, and I do believe her level of determination is extreme. Right now, she is being tough for this little one pictured below, her life, her joy, her baby girl! Many nights her Daddy and I just sit and talk about how remarkable her will to push through as she faces two turbulent issues at the same time, two things a person should never have to experience at the same time, but she just carries on, takes care of her baby, does her protocol, prays and tries to learn. She might stop for a cry, text me a mile long text to vent, or spend an afternoon talking it out with her sister-in-law who is also her best friend, but then she puts her big girl pants on, does the right thing for the sake of doing the right thing and carries on. Short of Jesus Himself, she is the biggest inspiration in my life right now.
Wednesday, June 21, 2023
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.
Monday, June 19, 2023
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!