I've shared some of this information before but I have a lot of new friends who may not know this 😊
For those who don't know, I've had Lyme Disease for about 10 years.
Tomorrow, Feb 26th, is my 23rd birthday! I never thought that I would still be sick on my 23rd birthday, but God is so good and I have hope! Things are going to get better!
"The Lord is my shepherd; I have all that I need. He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength. He guides me along right paths, bringing honor to his name.
EVEN WHEN I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me" -Psalm 23:1-4
I am officially scheduled to begin treatments for the Stem Cell Transplant in Germany on April 4th! They will use my own stem cells for the transplant. I'll explain more about the treatments and transplant in this post, but I first want to share a little of my story with Lyme Disease.
Before I share part of my story, I want to tell you a couple of things. I want you to know that yes, this part of my story is hard, but my story is NOT sad. You shouldn't feel sorry for me. Yes, I wish things were different and I'm tired of being sick, but I have God who promises to never leave me. Because of Him, I have hope and I'm not giving up! God has carried me this far and He won't fail me now! My story is not a sad story because God is in control, He is faithful, His promises are true, and all of this pain is only temporary!
I also want to tell you that this disease does not define my life. It's a huge part of my life right now, but my identity comes from God.
God has something bigger planned for my life. Our stories are greater than what we can see right now. I can't tell you my story without telling you about God, The Ultimate Healer. Like one of my favorite songs says, "Oh to tell you my story is to tell of Him".
Now onto the details.
Why we're doing the Stem Cell Transplant, what I've already done, and what we hope this will accomplish-
My mom and dad have done so much research since I got sick. When I got sick about 10 years ago and no one knew what was wrong, my parents had to become like doctors to get me the care I needed. After 2-3 years of no real answers, they took me to a clinic in Nevada that several people from our church had gone to. My mom had actually been to that clinic a few years before I got sick because our friend needed treatments there and her husband couldn't go with her that time. That was such a blessing because she saw what they did at the clinic and learned a lot. That was not a coincidence, that was God. We live in Oklahoma, but my parents took me to the clinic in Nevada and I was diagnosed with Late Stage Lyme Disease and many co-infections on Dec 3, 2008. We were so happy for a diagnosis after years of no answers, but I don't think we fully realized the weight of that diagnosis. I thought that with a couple weeks of treatments that I would be better.
As we quickly learned, there is no medical cure or standard treatment protocol for Late Stage Lyme, which also means that insurance won't cover any treatments for it. If Lyme is caught immediately, 99% of the time it is curable with a few weeks of antibiotics.
"Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart."
Since there are no protocols for treatments, Lyme patients are left on their own to figure out what to do for treatments and treatments also depend on what each person can afford since insurance won't pay for it. I've traveled across the country for treatments, and soon will be going across the world to Germany. Most Lyme patients have to travel for treatments.
Some people who have Lyme are on IV and oral antibiotics for years and years and years. I have done both oral and IV antibiotics and my body could not handle it.
When the Lyme bacteria is killed, it causes a herx reaction. *see bottom for more info about a herx reaction*
When I couldn't handle the antibiotics and we learned more about Lyme, we decided to go the more natural route. The clinic in Nevada does mostly alternative treatments.
Instead of using antibiotics to kill the Lyme bacteria, the treatments I've done teach your immune system to recognize the Lyme (it hides from the immune system) and fight the Lyme itself. The treatments support your body while the immune system is "jump started" to recognize and kill the bacteria. These treatments still cause the herx reaction, but my body is better supported with the natural treatments.
I have been doing treatments for about 7 and a half years now. Before I got the Lyme, I was so healthy. I had never had an ear infection, even as a kid.
Lyme Disease is not well known, even though it's becoming an epidemic. Lyme is so destructive, especially when it's not caught early, and I want to share how it's affected me and why I need the stem cell transplant now.
Because I was misdiagnosed for 3 years,
Lyme damaged every part of my body and every organ.
Since I became sick with Lyme, I've been diagnosed with:
-Mono- that's when I first got sick. Lyme feels like arthritis and the flu.
-Gastroparesis-stomach paralysis which causes constant nausea
-Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) -autonomic nervous system dysfunction
-Heart problems- an arrhythmia has caused seizures and has caused my resting heart rate to always average around 130bpm, but it has gone as high as 180bpm or higher, even when I'm just laying down.
-Stage 2 Kidney Disease- was just diagnosed with this a few months ago
-Interstitial Cystitis- also just diagnosed a few months ago. It's a painful bladder disease
-Pain- joint pain, muscle pain, bone pain. Pain everywhere. Pain so severe that requires morphine 24/7
-Brain fog and concentration- the Lyme is in my brain too. When I first got sick, I couldn't even read my textbooks. My parents had to read them to me before I had to stop going to school because I was too sick
-Memory loss- I have very few memories of life before I got sick. I still sometimes don't remember conversations or things I did a few days earlier.
-Endometriosis- I've had 3 surgeries for this
-Ovarian Cysts- I had an orange sized cyst removed and have had many other cysts
-Appendicitis- but my white count wasn't high, I didn't have a fever, so it almost ruptured. My immune system is so weak that it didn't know I had a horrible infection and all the tests were normal. I just had severe pain and was admitted to the hospital and then they did exploratory surgery and found my appendix fixing to rupture
-Gallbladder- stopped working so I had surgery to remove that, then 3 months later is when I had appendicitis and another surgery.
-Weakness-I used to be bedridden and could barely walk
-Insomnia- sometimes no amount of medicines can get me to sleep. Pain plays a role in not being able to sleep as well
-Constant Fever- I have a low grade fever all the time.
-Numbness- my legs and arms go numb
-swollen lymph nodes everywhere
-This list isn't everything of course, but these are some of the major things.
Because of all of that and more, I've had to have:
-my heart shocked. After a 5 hour heart procedure last May, they had to shock my heart in the OR.
-8 surgeries, 2 of them emergency surgeries
-I had a port in my chest for IVs for 4 years and I can even do my own IVs at home.
-5 PICC lines. I'm fixing to have my 6th PICC line placed for the stem cell transplant.
-A spinal tap
-Staph infection from my port that spread to my blood. This resulted in a week long hospital stay, emergency surgery to remove the port once I was stable, and then I got a PICC line and did IV antibiotics for about 7 weeks
-a couple of GI scopes with biopsies of my stomach and whole GI track
-a transesophageal echo (TEE). Instead of doing an ultrasound of your heart from the outside (called an echo), "the ultrasound probe is positioned on an endoscope, is guided down the patient's throat into the esophagus." I was totally awake for this and it was not pleasant.
-So many ER trips. Before I got my first PICC line, I was in the ER at least 4 times a week for IV fluids, nausea medicine, and morphine. That went on for months. Even after being able to do IVs at home, I've ended up in the ER all the time for all the various problems.
-Countless hospitals stays and several days in the ICU
-I used to do IV fluids at home almost every day for many years
-Like I mentioned, I had seizures from a heart arrhythmia and couldn't drive for a year because of them
-On December 1st, 2015, I had a 10 hour heart surgery to fix my heart! I had to be awake for the first 7 hours with nothing but Tylenol and local anesthesia. That was an interesting thing! It's rare that they do the surgery with the patient awake with only Tylenol. But I did it!!! GOD got me through it, along with the prayers of so many, and all the great doctors and nurses with me in the OR. I had 6 nurses and several cardiologists, plus a lot of extra people in there, and they all were so compassionate, knowing how hard it was for me.
-I've seen almost every specialist because of it affecting every organ and body system
In the fall of my sophomore year of high school, I had to stop going to school because I was bedridden and so sick. I'm proud to say that I finished high school on time from home! A teacher would come to my house and I would also do things online. I graduated on time, but I was in the ICU on the day of graduation so I wasn't able to attend. I decided to try and start college when I was supposed to, so I lived in the dorms at Oklahoma Christian University (about 8 min from our house) for my freshman and sophomore years and I only took about 2 classes a semester. The classes wore me out so I didn't get to participate in the social part of college. I also spent a lot of time at home while trying to live in the dorms. I should have graduated college last year, but I haven't taken a class in over a year because of the seizures and heart problems and heart surgery. I know I will be able to finish school later.
All that to say, we do not take this decision to go to Germany lightly. For the last 7 years, I've done antibiotics and alternative treatments at many different clinics around the country. We have been going back and forth to the clinic in Nevada since I was diagnosed. We've spent months and months there since I was diagnosed in 2008. I've also done treatments in other locations. We have seen improvement with those treatments! The amount of Lyme in my body is less because of all those treatments!
And while I've made progress, I'm still not well. My cardiologists, who are known worldwide and who did my heart surgery in December, said they believe that I have autoantibodies that are attacking my body. I was diagnosed with the kidney disease and bladder disease a week before my heart surgery after months of constant kidney infections. The bladder disease and kidney disease (my kidney function is lower than normal) are (most likely) caused by the autoantibodies. "Autoantibodies are antibodies (immune proteins) that mistakenly target and react with a person's own tissues or organs. Autoantibodies are usually just a sign of the disease, not the reason." So Lyme has caused my immune system to attack my organs. The cardiologists said that's what was happening with my heart. There was a line of abnormal cells in my heart which caused the arrhythmia. They were able to fix my arrhythmia in the 10 hour heart surgery in December! But, they said that it isn't a matter of IF the arrhythmia will come back, it's WHEN. As long as the autoantibodies are in my body, they will continue to attack my body, and they'll attack my heart in a new place, causing other heart problems.
Like I mentioned, we have done countless treatments to get rid of the Lyme.
One might ask, well if you've done so many years of treatments and the Lyme bacteria is mostly gone, why am I still so sick and why do I need the stem cell transplant?
For 3 years this disease went undiagnosed, which means that it had 3 years to invade everything.
I'm still having all of these problems because of all the damage that the Lyme did to my body and immune system. Yes, the bacteria load is better (it will never be 100% gone), but the treatments can't fix all of the damage.
Most of the treatments available in the US are just to get rid of the Lyme bacteria from your body, which has to be done obviously. But people who had Lyme for years without being diagnosed find themselves still sick, even after all of the Lyme treatments.
We have been looking at stem cells for a while now and we, along with all my doctors, feel like the stem cell transplant will be the turning point for me. Unfortunately, stem cells are not approved for Lyme in the US.
About the actually stem cell transplant process-
The clinic in Germany mainly just treats cancer and Lyme Disease. A Duke Oncologist just came out and said that in the infectious disease category, Lyme is the equivalent to cancer. If you want to read about it, I'll post a link. My Lyme doctor in Nevada has started treating cancer too.
This is a very simple description of stem cells! There are 2 types of stem cells: embryonic and somatic (or adult) stem cells. So everyone has somatic stem cells once they are born. Stem cells are just cells that don't have a specific purpose yet. It's a lot more complicated than that, but I didn't promise you a science lesson 😊
The estimated length of stay at the clinic is 2 weeks. When I get to the clinic, they will do all of their testing. They will then drive us an hour away to their lab where they will take out my stem cells. They will take the somatic, adult stem cells from my blood by just drawing blood like normal. They want it to be done at the lab so that they don't have to transport them. They will then take us back to the clinic.
In the lab, once they separate the stem cells from my blood, they will then "clean" the stem cells to get rid of any infections or other bad things that circulate in the blood with the stem cells, so in my case they want to make sure no Lyme comes with the stem cells. Once the cells are as clean as possible, they will give them something to make them grow, and they will grow those cells into millions of new stem cells. The process of growing the stem cells takes about 10 days.
While the stem cells grow, I will receive IV treatments every week day for the 2 weeks. Some of the treatments are similar to he natural treatments I've done in Nevada, but they also do a lot of other things. Some of the treatments will kill any bacteria in my body, some will help my body detox, some will help my organs, some will help circulation, some will help inflammation, some will help my lymph system, and I will get a lot of nutrients in my IVs. For each person, they use different treatments so I won't know exactly what I'll be doing until I get there and have testing done.
Since they'll be killing the Lyme and other bacteria, I'll have a herx reaction, just like I do with other Lyme treatments.
Something amazing that they do...I will receive injections that actually resets the immune system and it sets your immune system back by 10 years. I don't totally understand what exactly that means, but It's pretty incredible. I can't wait to hear all that I get to do!
Once the stem cells have grown enough,
they will inject JUST the NEW millions of stem cells into my body. They won't re-inject the ones they took from my body, just to make sure they aren't putting infection back into my body. They don't actually put the stem cells into my veins in an IV, they inject them where a flu shot would go. The reason for that is because that way, it goes into the lymph system and spreads throughout your body in the best way possible.
The goal for this treatment is for the new stem cells to go into my body and repair all the damage caused by the Lyme bacteria. So since the stem cells don't have a specific purpose, they will go to whatever parts of my body need them the most. They can repair tissue, organs, it'll help my immune system, pain, and hopefully a lot of other things! We really need it to help my kidney disease, bladder disease, stomach paralysis (Gastroparesis), heart, auto immune problems, bone and joint pain, and many other things.
Once I will receive the stem cells, about 2 weeks after being there, I will be able to come home!
The first 100 days after the transplant are critical and I will need to take it easy.
The transplant will most likely make me tired for a while. Each case is different and they can't tell me when I'll for sure start seeing results and feeling better. It can take 6 months to a year to see the full results from the transplant, but a lot happens in the first 100 days.
I will be having my 6th PICC line placed on March 25, here in OKC. We don't know for sure when we are leaving for Germany, but we do know that I'm starting treatments April 4th.
I am so grateful for this opportunity to go to Germany. I am nervous, but hopeful. Like I've said, we've done it all and are counting on this transplant to be the turning point.
We have had people ask, and we are setting up a GoFundMe page for the Stem Cell Transplant since insurance won't cover anything and we have to pay for it all 2 weeks before we go. Thank you so much to those who want to donate. Your prayers and love mean just as much or more to us. If someone wishes to donate but not do it online, my church is taking donations for me so you can contact me if you wish to do that.
I'm not shy in asking for prayers because God tells us to pray and He works in every situation, even if we can't see it at the time.
So, will you please be praying about this who process?
Please pray that:
-the PICC line procedure will go well
-we can get the funds to pay for the transplant
-I handle traveling well
-that there are no complications with the stem cell transplant
-the transplant does everything we hope for and more
-that God is glorified in this whole process
My favorite verse since getting sick is Psalm 73:26 "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever".
Nothing in this world is certain. But God is.
He has never left me. I'm so blessed!
"I can see a light that is coming for the heart that holds on, and there will be an end to these troubles, but until that day comes, STILL I will praise You, STILL I will praise You, You never let go, through the calm and through the storm"
Please share this and ask others to pray. It's time for a miracle after 10 years of being sick! No matter what, God is good!
"You get glory in the midst of this
And You're walking with me
And you say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me
And I know Your promises are faithful
And God, I've seen Your goodness in my life
And oh, I've found Your mercy is a river
Your love is an ocean wide"
"I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait
I will move ahead, bold and confident
Taking every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait"
*"The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough"