I'm no pro blogger but still think this may be the best way to update my friends and family on Karlie.
I can't believe it has been 6 months since we scheduled our appointment with an LLMD (Lyme Literate Medical Doctor.) Once our family doctor gave Karlie the 3 week dose of antibiotic for Lyme, Karlie DID get better. She had fewer pain episodes and possibly fewer emotional outburst's, (tho she's still the middle child and apparently that's awfully hard on a child, ha!) But it DID help for awhile and that matters! So, we followed through with our family doctor's wishes and went to see an Infectious Disease doctor at Children's Mercy.
August 2016. We specifically we saw Duha N. Al-Zubeidi, MD at Children's Mercy Hospital. I went in prepared in knowing there is controversy surrounding Lyme disease in our country, and that medical doctors are often reprimanded, sometimes even losing their medical license for treating it. Unfortunately this is what happened to us with our Karlie. Dr. Al-Zubeidi simply looked at the lab work and said, "Has Karlie been to the east coast? If she hasn't she doesn't have Lyme, your doctor doesn't know how to read a lab report and it's not possible for her to have Lyme in this part of the country." She recommended we see a psychiatrist for her behavioral symptoms and we see a rhumatologist for pain. I walked away and did NOT make those appointments because I was already aware of the possibility my daughter would likely not be cared for at this hospital. Do not hear what I am not saying. Children's Mercy is a phenomenal hospital. The fact that Dr. Al-Zubeidi didn't treat her does not make her a poor doctor. The government controls so much and Lyme treatment happens to be one of them.
Please take a few minutes to watch this, specifically minutes 3:30-4:05 (but the whole video is good) to better understand why many doctors turn their back on Lyme patients.
https://www.youtube.com/watch?v=LuT7STb5lUs
For some who haven't heard the story on how we came about finding our Lyme Literate Medical Doctor, because it's not something you can just search the Internet for. LLMD's are either quiet about treating, definitely not advertising they treat it, OR have completely broken away from government control and treat openly by not taking insurance. The later being the route we took.
One morning I told Brian that I wanted to take Kenzie to a blueberry orchard about 15 miles from us where we went and picked blueberries for the first time. When we first arrived and were being led out to the blueberry patch I asked, "Your place is beautiful out here, I can't believe I didn't know about this gem so close to Warrensburg... How long have you lived here?!" He replied, "Well, We moved here a number of years ago but I was facing some medical challenges where I was in a lot of pain, my vision was disturbed and just lots of random issues that none seemed to go hand in hand but it was nearly debilitating so they hadn't opened the orchard the first few years they lived there." I may have interrupted him and said, "Wow, sounds like you might have Lyme Disease." He stopped and looked at me and said, "I saw dozens of doctors who couldn't figure out what was going on and you just correctly diagnosed me with very few details." I replied, "Well I've been reading a lot about it because our 4 year old had just been diagnosed." With many apologies for the future of Karlie's health, it was him who first told us about Dr. Crist, the one who helped save his life. THAT very night a trusted friend replied to me about the doctor who is currently successfully treating her brother for Lyme with information for the SAME doctor! Thanks for that "written on the wall" message from a God who knew I needed confirmation. I called the next Monday morning to schedule and found out it would be a 6 month wait. Ugh.
I received a packet of forms I needed to fill out, collect every detail about Karlie's health so I could be well prepared for our appointment. During this 6 month wait, Karlie had been doing fairly well but still having some episodes, mostly excruciating pain in the legs, knee, and toes, headaches, belly aches, extreme fatigue, and some minor but present behavioral issues. Of course we never know if it's just because Karlie has a challenging personality and is much like her mother or if it's the Lyme that is triggering her.
So, mama went back to work on occasion as a substitute teacher to save for Karlie's upcoming appointment. Of course that helped with Christmas this year so that was a bonus. We had many people praying for our family, especially Karlie and God was BEYOND good to us. I had some anxiety about the upcoming appointment and some other medical bills that we had and then we received a gift (that was very humbling to accept) to PAY FOR Karlie's appointment and treatments and I will forever be thankful that person responded to the Lord's prompting. I pray the Lord blesses them ten fold and that we can be on the giving end sooner than later to bless someone like we were blessed. To me that was more confirmation we were seeing the right doctor even though he was SO expensive.
Fast forward a few weeks. I called to confirm Karlie's appointment and I was told, "Oh I have a note here that I needed to call you and confirm Karlie's birthday because I think you were quoted the wrong price! Sure enough, because of Karlie's age he was only charging HALF the amount! Praise the LORD!
Appointment Day:
We arrived right on time to Dr. Crist's office. All 3 kids in tow because we were on our way home from visiting Brian's family up north. I was at peace the minute we walked in to his office. It may have had something to do with on the paperwork that I had procrastinated on finishing until the day before where I came across one of the questions, "Would you like Dr. Crist to pray for you during your visit? (Dr. Crist is a Christian)" check yes or no. Um, ABSOLUTELY!
The nurse called us back shortly after we arrived. She went through a few details but since she pretty much already had all the information she needed from all the paperwork she checked Karlie's vitals, including her pH and then gave the information to the doctor. After he reviewed Karlie's chart he confidently came in and began to share and explain in detail Karlie's diagnosis.
He confirmed she has Lyme Disease/STARI or better known as Masters Disease. He showed us her lab work which I still don't entirely understand but Brian probably does. He thoroughly checked her over and she smiled the whole time. (Then on Tuesday night my sister Julie asked what she thought of him, and she replied, "Mom can I say it?" I said, "Of course, not knowing what she was going to say and she said, "He's handsome." LOL, not what I had expected but entertaining for sure.) Dr. Crist explained how there are many different types of infections and co infections that happen with Lyme but that she does have one specific bacteria that it's important that we battle now:
Borrelia burgdorferi. Oh how I wish it didn't exist. Karlie NEVER had the Stage 1 Bulls Eye rash that is common with this bacteria, however we have pulled a couple ticks from her scalp which would make it difficult to tell if there was a bulls eye. (FRIENDS, DO NOT FORGET TO CHECK IN YOUR KIDS HAIR FOR TICKS!) The second stage of this bacteria spreads through the body and affect the immune/nervous system, bones, and the heart. It can affect the metabolism, which Dr. Crist pointed out that it's already begun to do in Karlie. We'll be adding in some sea salt to her dishes and some extra proteins as well as cutting out nightshade foods to try and help her naturally with this. Thankfully its not something that has to be completely eliminated, she can still have some but it may make her feel worse, but doesn't stay in her system for months on end like gluten does. We'll try an elimination diet to see what her biggest problem foods are. Please Lord don't let it be tomatoes because we love pizza! The 3rd stage is chronic arthritis and neurological complications. I don't believe we are fully into the 3rd stage. OK, enough of that. THE GOOD NEWS! Dr. Crist is hopeful that by treating Karlie with antibiotics for an extended time will HEAL her in Jesus Name! When I say in Jesus name, this man, this treasure of a doctor, Dr. Crist laid hands on our precious child and prayed over her and our entire family at the end of our appointment. I couldn't have been more thankful to have found him.
As we drove away I wanted to know Brian's first thoughts, and they were exactly mine! We both felt completely trusting of this man with our daughters health. Extended antibiotics absolutely have their risks. I'll let you google that if you really want to to know but I refuse to speak them over my child from here on out. Monday night I was worn out. A weekend of kids up late away from home and not being in our own beds and then an emotionally taxing diagnosis where I really wanted to walk in and the doctor would say, labs show she actually doesn't have Lyme, didn't happen. SO I took 2 Tylenol PM because I just NEEDED sleep. I fell asleep praying that God would just confirm that using antibiotics for an extended time was what HE had planned for our child. At 3:40am I was awakened by our little 5 year old daughter screaming, "MOMMY! DADDY! HELP! HELP! HELP ME!" over and over again. I was in tears, she was in tears, she was hurting more than she has in a very long time, maybe the worst it's ever been. I told Brian the next morning how horrible it was and he said, "I know I was up with her at 1:30." I was sleeping hard but our poor baby went through some serious pain that night and I KNOW it was God confirming that we need to proceed with the antibiotics. The Lord has really confirmed everything in this process for us. My faith muscle has certainly been stretched.
.
You guys. The date. January 9. Isn't God so good?! This was the most perfect devotional for me that very day. The day we saw the doctor who created a God given plan for our daughter.
Then today, the day I decide, I really need to sit down and write this out for people so I don't have to break down in tears once again, because my baby girl is sick but also because the Lord is SO good to us. One of my best friends texted "So you have to fill me in on Karlie's stuff..." and as she did I was literally logging in to my blog for the first time since July 2016 when I first blogged about this ordeal. Timing is important to me and I find it no coincidence that this is my devotion in Jesus Calling this morning:
Exodus 33:14 And he said, “My presence will go with you, and I will give you rest.”
August 2016. We specifically we saw Duha N. Al-Zubeidi, MD at Children's Mercy Hospital. I went in prepared in knowing there is controversy surrounding Lyme disease in our country, and that medical doctors are often reprimanded, sometimes even losing their medical license for treating it. Unfortunately this is what happened to us with our Karlie. Dr. Al-Zubeidi simply looked at the lab work and said, "Has Karlie been to the east coast? If she hasn't she doesn't have Lyme, your doctor doesn't know how to read a lab report and it's not possible for her to have Lyme in this part of the country." She recommended we see a psychiatrist for her behavioral symptoms and we see a rhumatologist for pain. I walked away and did NOT make those appointments because I was already aware of the possibility my daughter would likely not be cared for at this hospital. Do not hear what I am not saying. Children's Mercy is a phenomenal hospital. The fact that Dr. Al-Zubeidi didn't treat her does not make her a poor doctor. The government controls so much and Lyme treatment happens to be one of them.
Please take a few minutes to watch this, specifically minutes 3:30-4:05 (but the whole video is good) to better understand why many doctors turn their back on Lyme patients.
https://www.youtube.com/watch?v=LuT7STb5lUs
For some who haven't heard the story on how we came about finding our Lyme Literate Medical Doctor, because it's not something you can just search the Internet for. LLMD's are either quiet about treating, definitely not advertising they treat it, OR have completely broken away from government control and treat openly by not taking insurance. The later being the route we took.
One morning I told Brian that I wanted to take Kenzie to a blueberry orchard about 15 miles from us where we went and picked blueberries for the first time. When we first arrived and were being led out to the blueberry patch I asked, "Your place is beautiful out here, I can't believe I didn't know about this gem so close to Warrensburg... How long have you lived here?!" He replied, "Well, We moved here a number of years ago but I was facing some medical challenges where I was in a lot of pain, my vision was disturbed and just lots of random issues that none seemed to go hand in hand but it was nearly debilitating so they hadn't opened the orchard the first few years they lived there." I may have interrupted him and said, "Wow, sounds like you might have Lyme Disease." He stopped and looked at me and said, "I saw dozens of doctors who couldn't figure out what was going on and you just correctly diagnosed me with very few details." I replied, "Well I've been reading a lot about it because our 4 year old had just been diagnosed." With many apologies for the future of Karlie's health, it was him who first told us about Dr. Crist, the one who helped save his life. THAT very night a trusted friend replied to me about the doctor who is currently successfully treating her brother for Lyme with information for the SAME doctor! Thanks for that "written on the wall" message from a God who knew I needed confirmation. I called the next Monday morning to schedule and found out it would be a 6 month wait. Ugh.
I received a packet of forms I needed to fill out, collect every detail about Karlie's health so I could be well prepared for our appointment. During this 6 month wait, Karlie had been doing fairly well but still having some episodes, mostly excruciating pain in the legs, knee, and toes, headaches, belly aches, extreme fatigue, and some minor but present behavioral issues. Of course we never know if it's just because Karlie has a challenging personality and is much like her mother or if it's the Lyme that is triggering her.
So, mama went back to work on occasion as a substitute teacher to save for Karlie's upcoming appointment. Of course that helped with Christmas this year so that was a bonus. We had many people praying for our family, especially Karlie and God was BEYOND good to us. I had some anxiety about the upcoming appointment and some other medical bills that we had and then we received a gift (that was very humbling to accept) to PAY FOR Karlie's appointment and treatments and I will forever be thankful that person responded to the Lord's prompting. I pray the Lord blesses them ten fold and that we can be on the giving end sooner than later to bless someone like we were blessed. To me that was more confirmation we were seeing the right doctor even though he was SO expensive.
Fast forward a few weeks. I called to confirm Karlie's appointment and I was told, "Oh I have a note here that I needed to call you and confirm Karlie's birthday because I think you were quoted the wrong price! Sure enough, because of Karlie's age he was only charging HALF the amount! Praise the LORD!
Appointment Day:
We arrived right on time to Dr. Crist's office. All 3 kids in tow because we were on our way home from visiting Brian's family up north. I was at peace the minute we walked in to his office. It may have had something to do with on the paperwork that I had procrastinated on finishing until the day before where I came across one of the questions, "Would you like Dr. Crist to pray for you during your visit? (Dr. Crist is a Christian)" check yes or no. Um, ABSOLUTELY!
The nurse called us back shortly after we arrived. She went through a few details but since she pretty much already had all the information she needed from all the paperwork she checked Karlie's vitals, including her pH and then gave the information to the doctor. After he reviewed Karlie's chart he confidently came in and began to share and explain in detail Karlie's diagnosis.
He confirmed she has Lyme Disease/STARI or better known as Masters Disease. He showed us her lab work which I still don't entirely understand but Brian probably does. He thoroughly checked her over and she smiled the whole time. (Then on Tuesday night my sister Julie asked what she thought of him, and she replied, "Mom can I say it?" I said, "Of course, not knowing what she was going to say and she said, "He's handsome." LOL, not what I had expected but entertaining for sure.) Dr. Crist explained how there are many different types of infections and co infections that happen with Lyme but that she does have one specific bacteria that it's important that we battle now:
Borrelia burgdorferi. Oh how I wish it didn't exist. Karlie NEVER had the Stage 1 Bulls Eye rash that is common with this bacteria, however we have pulled a couple ticks from her scalp which would make it difficult to tell if there was a bulls eye. (FRIENDS, DO NOT FORGET TO CHECK IN YOUR KIDS HAIR FOR TICKS!) The second stage of this bacteria spreads through the body and affect the immune/nervous system, bones, and the heart. It can affect the metabolism, which Dr. Crist pointed out that it's already begun to do in Karlie. We'll be adding in some sea salt to her dishes and some extra proteins as well as cutting out nightshade foods to try and help her naturally with this. Thankfully its not something that has to be completely eliminated, she can still have some but it may make her feel worse, but doesn't stay in her system for months on end like gluten does. We'll try an elimination diet to see what her biggest problem foods are. Please Lord don't let it be tomatoes because we love pizza! The 3rd stage is chronic arthritis and neurological complications. I don't believe we are fully into the 3rd stage. OK, enough of that. THE GOOD NEWS! Dr. Crist is hopeful that by treating Karlie with antibiotics for an extended time will HEAL her in Jesus Name! When I say in Jesus name, this man, this treasure of a doctor, Dr. Crist laid hands on our precious child and prayed over her and our entire family at the end of our appointment. I couldn't have been more thankful to have found him.
As we drove away I wanted to know Brian's first thoughts, and they were exactly mine! We both felt completely trusting of this man with our daughters health. Extended antibiotics absolutely have their risks. I'll let you google that if you really want to to know but I refuse to speak them over my child from here on out. Monday night I was worn out. A weekend of kids up late away from home and not being in our own beds and then an emotionally taxing diagnosis where I really wanted to walk in and the doctor would say, labs show she actually doesn't have Lyme, didn't happen. SO I took 2 Tylenol PM because I just NEEDED sleep. I fell asleep praying that God would just confirm that using antibiotics for an extended time was what HE had planned for our child. At 3:40am I was awakened by our little 5 year old daughter screaming, "MOMMY! DADDY! HELP! HELP! HELP ME!" over and over again. I was in tears, she was in tears, she was hurting more than she has in a very long time, maybe the worst it's ever been. I told Brian the next morning how horrible it was and he said, "I know I was up with her at 1:30." I was sleeping hard but our poor baby went through some serious pain that night and I KNOW it was God confirming that we need to proceed with the antibiotics. The Lord has really confirmed everything in this process for us. My faith muscle has certainly been stretched.
.
You guys. The date. January 9. Isn't God so good?! This was the most perfect devotional for me that very day. The day we saw the doctor who created a God given plan for our daughter.
Then today, the day I decide, I really need to sit down and write this out for people so I don't have to break down in tears once again, because my baby girl is sick but also because the Lord is SO good to us. One of my best friends texted "So you have to fill me in on Karlie's stuff..." and as she did I was literally logging in to my blog for the first time since July 2016 when I first blogged about this ordeal. Timing is important to me and I find it no coincidence that this is my devotion in Jesus Calling this morning:
Jesus Calling: January 12
Let Me prepare you for the day that stretches out before you. I know exactly what this day will contain, whereas you have only vague ideas about it.You would like to see a map; showing all the twists and turns of your journey. You'd feel more prepared if you could somehow visualize what is on the road ahead. However, there is a better way to be prepared for whatever you will encounter today: Spend quality time with Me.
I will not show you what is on the road ahead, but I will thoroughly equip you for the journey. My living Presence is your Companion each step of the way. Stay in continual communication with Me, whispering My name whenever you need to redirect your thoughts. Thus, you can walk through this day with your focus on Me. My abiding Presence is the best road map available.
Exodus 33:14 And he said, “My presence will go with you, and I will give you rest.”
Thank you to all who have prayed for our most precious Karlie, and for Brian and I too. Our prayers are being answered and I know that HE is going before us and this battle is not our own.
I'd like to end with this. My GOD is BIG. Bigger than any problem you may have or face tomorrow. There is absolutely NO way I would want to travel through this thing called LIFE without HIM. Do YOU know HIM? Because this LIFE we have is short. We are simply not promised tomorrow. If you don't, PLEASE come to me. Text me. Message me. YOU need HIM and HE WANTS you. ALL of you. All of your broken, He wants it. Trust me. Don't wait until tomorrow! There is so much JOY in knowing Jesus!
