About 6 to 8 weeks ago I was in the shower feeling pretty “poor, pitiful me” because I knew I was approaching the 2 year mark of treatment. As the water poured over me, I started to wonder when I was ever going to feel better. I basically have a running dialogue with God every day and I wasn’t really “asking” Him, but I was sharing my frustrations, which included my mind questioning when I would ever wake up and “feel good”. An answer hit me like a ton of bricks: “You have to FIGHT for it!” I got mad then because I thought, “I’ve BEEN fighting! I’ve been taking all the prescription drugs, seeing all the doctors, following the diet restrictions, and taking the vitamins and supplements! What else am I supposed to do???” The answer was clear again: “Trust in ME and start to push yourself!” I knew exactly what that meant. I’ve been scared to get back out in the world again. It’s understandable since for almost 2 years a seizure could hit just from hearing an unexpected noise. While I’ve been very grateful to be home and not in Kansas City, I had to recognize that I had made a virtual fortress of quiet here in my house. I understood then that if a “normal” person (or someone who hadn’t dealt with noise sensitivity as I have) had lived in my house of silence for a year, they would think the outside world sounded like a rock concert when they emerged. So, in that shower I realized I had to TRUST God and to hand Him my fears. I knew my noise sensitivity was much better than it had been just a few months ago and that I was ready to try more things outside of this house. My last real entry on here was entitled, “Life outside of Lyme”, and I had no clue then that it was foreshadowing that my life was literally heading OUTSIDE!
There were other obstacles besides fear of course. I haven’t been out of the bed much at all for the past couple of years, but especially this past year since I started IVs at home and didn’t have to walk anywhere. My legs, feet, and my ankles were really not used to supporting my weight. I realized this more in hindsight because after walking around the house or just standing for any length of time my feet would hurt and when I tried to sleep those nights my legs and ankles would ache and keep me awake. I understood then that there was never going to be a day that I just “woke up and felt good” as I had talked with God about that day in the shower. Again, someone who hadn’t been sick but who had just been off their feet and in the bed as long as I have would have to work to get muscles back. This new “fighting” I had to do didn’t refer to the illnesses I have, it really was more about the physical rehabilitation I would have to endure to be able to function out in the world! So, I prayed and I pushed and I saw results!
My first outings were with my mom going places during the week while most people are working so public places, retail shops, grocery stores, etc. aren’t as crowded or noisy. Every time we ventured out I saw more progress in what I could handle. I didn’t go as slowly as I thought I would either. I really DOVE into public life again going into places I never would have been able to handle before – like a department store! I was getting out of the house 2 to 3 times a week which, as you know if you’ve been reading this over the past year or more, is HUGE!!! Mom and I were giddy as we saw how much more I could handle. Just thinking about it makes me smile so much! I started supervised driving since it had been so long since I had a seizure. We started with back roads where I felt safe but eventually I ventured out onto the interstate and I did GREAT! Noise hasn’t been my only obstacle to the outside world – it was my biggest, but motion was hard on me as well. Seeing too many people or too many cars or too many of anything was so hard these past 2 years that not only could I NOT drive, at times I even had to cover my eyes while I rode in the car. So, it has been miraculous to get out there and really tackle these obstacles!
Two weeks ago I had an appointment to see my doctor. For the first time in over 2 years I took a shower, dried my hair, put on full makeup, and got dressed not only in the same day but I did it within a two hour time span! Before now I have usually had to take a shower the day before I go somewhere because it exhausted me. This day I was getting ready and as I was putting the finishing touches on my makeup, I looked in the mirror and I was smiling and kind of bopping my head about as if there were music on. I stopped immediately and I took a deep breath, and I said, “This is what it’s like to feel good!” because I haven’t felt like that in YEARS! I’m 36 years old and I quit work when I was 30 because my health had declined that much. I can’t even remember the last time I got ready to go somewhere and wasn’t exhausted by the effort! Tears came to my eyes and, overcome with joy, I got on my knees and just repeated, “Thank you, God! Thank you, God! Thank you, God!” I went downstairs where my sweet husband was working and I said, “I FEEL GOOD! For the first time in years I can say that I feel GOOD!” Oh, the praises that were coming from my soul were overwhelming. Then I drove us to the doctor’s office at the hospital! To say I felt blessed doesn’t quite cover it!
Then last week I had a rough time. My symptoms flare every four weeks but I had also tried to go up on the dose of one of my medications and it was too much for me. I was back in bed, exhausted, sick to my stomach, unable to eat much and with mouth ulcers covering one side of my top and bottom lips. My blood pressure was so low the nurse had to take it three times before she could get a reading and it was 76/48. So I had a week of feeling bad again. I was mad at first because it’s so hard to slide back but then God showed me that my “bad days” right now are like my “good days” were 1 year ago and like my “great days” were 2 years ago. I’m not sliding backwards now so much. Treatment started with 1 step forward and 2 steps back it seems. Then I got to 2 steps forward and 1 step back. I got to see that now it’s more like 5 steps forward and 1 step back. PRAISE GOD FOR SO MUCH PROGRESS.
And then I cycled back this week to that wonderful place of amazing progress. Monday I actually drove myself to get gas in my car, went into Publix to get a couple of things, and then finished at Whole Foods and drove myself home. It has been 27 months since I have been able to drive anywhere by myself. Tackling those errands alone was like completing a marathon for me. I probably had a smile plastered on my face the entire time. I felt like I had a life again. For so long I have felt like a burden to my husband and my family since my mom comes and takes care of me 4 days a week. It was amazing to feel like I was able to be a help and actually run errands! Mom has been at the beach this week with my dad and my sister and her family. It was a much needed vacation for her but I knew she really was worried about leaving me. How wonderful it was to call her and tell her what all I accomplished! And I didn’t just run errands – I actually put the groceries away, fixed my lunch, did my afternoon IV treatment, and fixed dinner for M and I that evening! OH HOW HAPPY I WAS!!!
This week I’ve done more cooking and with that I’ve been cleaning the kitchen. I LOVE music and before I got so sick I would always play it when I cleaned. I haven’t really been able to enjoy it because of my sound sensitivity the past couple of years, but I took my computer to the kitchen and had music playing while I cooked and cleaned. I stopped when I realized I was dancing to the beat some and I was singing along with the music! I was unloading the dishwasher and DANCING people!!! Oh how much joy there was in doing a chore that I used to hate! I actually just turned around and around in the kitchen with my arms spread out – kind of like little kids do – just enjoying the ability to move and I smiled and praised God for it all while I spun around! I have to go back to bed eventually of course – I’m not all the way there YET, but I know I’m on my way! I hope I have been able to convey just how amazing all of this progress has been to me and how grateful I am for it. I’m humbled by God’s graciousness, awed by His unmerited favor, and I feel beyond blessed!
Now, there are difficulties ahead because the antibiotics are fighting all of these things for me right now and while that’s good, it also means that they have basically replaced my immune system. It hasn’t had to fight because the drugs are fighting for it. I will be tapering off of one of the antibiotics soon because it's been 6 months and we believe we have gotten all the benefits we can from it. Then once we stop seeing all of this progress – when I plateau basically – I will taper off the other drugs. So I am having to work hard to do what I can now to rebuild my immune system so that when I stop the antibiotics I don’t end up feeling bad again. To do that I’ve started working on the basics – like what I eat. I am eating all organic fruits, vegetables, and meats. I am keeping an eye on how many carbs I allow myself to eat and I have stopped eating refined sugar pretty much completely. I will allow myself a “treat” – like I had a piece of cake 1 month – but mainly I get my sugar from the fruits I eat and I eat A LOT of fruit! Pineapples, strawberries, and kiwi have been daily staples for their high levels of vitamin C and they help me to feel like I’m getting some “sweets”. My doctor and I are also discussing some IV vitamin/mineral treatments but those would have to be administered at his office and he’s not really set up for that. It takes having a nurse to check on you and the infusion usually takes 3 hours but he's really willing to try whatever we need so if we decide that's the way to go, I think he'll make it work! Basically, we are trying to boost my immune system at the cellular level and it’s true that you are what you eat!
To those of you who have been reading my posts for over two years….thank you. From the bottom of my heart I thank you for your care, concern, and especially your prayers! I do have prayer requests still and what I write now will let you know the specifics of those requests. I have already said the difficult thing about Lyme, Bartonella, Babesiosis, and other tick-borne illnesses is that they do have a cycle and like I explained, they “flare up” at times. I also know some of you reading this are fellow patients so I always want to share what my treatment protocol is so that God may use whatever He leads me to do to help someone else. But, I must stress another problem with these diseases is what works for one person doesn’t always work for another. So, I’m not saying that if you take the drugs I take or do what I do that you will see the results I have seen. I just want to share insights as others have shared with me. I also want to educate people who don’t have a tick-borne illness. I want them to know just how hard it is to find a doctor who knows anything about these diseases or who takes them very seriously. I’ve seen more articles in mainstream media lately about these illnesses so I pray that more people will educate themselves on how to keep from getting sick or how to recognize symptoms if you do get sick. The articles aren’t great sources of information though because these diseases are so under reported by the CDC and doctors will say a 6 weeks course of antibiotics will take care of it. You who have followed me know that was definitely not the case for me. I believe the best information you can get is on the International Lyme and Associated Diseases Society website www.ilads.org . Please educate yourselves and seeing as how we’re in the middle of summer and everyone is outside PLEASE – I cannot stress this strongly enough – PLEASE check yourself, your family, and your animals for ticks!!! I pray for the day that I can look out at my backyard and simply see the trees and grass and not immediately have my mind think about how many ticks are hidden out there with various infectious diseases! I know that day will come and I want people to be aware, not scared.
Now, some of you may be reading this thinking I’m crediting God instead of recognizing it was medical science that has gotten me to this point. But, the reason I know for certain that my progress is from GOD is because I’m the person who comes up with my treatment regimen and we all know I’m not a doctor. I say I come up with it, but really what I do is research and pray. I pray fervently about what to do next. I read and research and M and I talk about it and we both pray about what to do next. My doctor knows my research is based heavily on the treatment guidelines written by Dr. Burrascano who is considered one of the leading “experts” on tick-borne illnesses (these can be found on the ILADS website I mentioned). We discuss what I want to do and my doctor tells me what he thinks – if he thinks I’m on the right track or if he thinks it’s too much for my body. He is very good about keeping me from pushing too hard with the medications. So, with his guidance, I’ve learned that taking things slowly (starting with lower doses of the drugs, building up to a dosage that works for me) is better for me because I can handle things better and basically it keeps me from feeling as horribly as I did when I first started treatment back in Kansas City. I thank God for pairing me with an open minded doctor who is more results oriented than any other I’ve met. But, he will be the first to tell you he’s not a “Lyme doc” and he’s not. I think that’s part of the reason God has me with this doctor because I can’t see a long list of patients with tick-related illnesses that’s he’s helped cure! It makes me that much more aware that God is in charge of this. My doctor is also very careful to explain the dangers of long term antibiotic therapy – and believe me there are SERIOUS risks that come with this treatment. However, M and I prayed about that too and we know that in my case the risks have been worth the rewards. So, before I meet with my doctor, I basically figure out my top 5 worst symptoms and then I research to see which infection could be the main cause. For me, Lyme disease in itself has not been my biggest problem at all! My worst symptoms come from the co-infections of Babesiosis and Bartonella, which sadly most people and MANY doctors just aren’t familiar with! In January I wrote that I started IV Rifampin to target the Bartonella. Bartonella is what was causing most of my serious neurological symptoms. I did “herx” a little (where symptoms flare because you’re killing off the bacteria – you can look up a better definition if you want) and I had to deal with the side effects of the drug – like being absolutely exhausted. I’ve never been so tired. I was back on oxygen and still just lifting my head from the pillow was hard. Then we started B12 injections to help my red blood cell production and I started seeing good progress then. I knew I had to tackle Bartonella before I could really attack the Babesiosis, which is the parasitic infection – it’s a lot like malaria. It’s parasites that infect your red blood cells and it’s hard to get rid of, much harder than most medical research leads you to believe. I think Lyme suppressed my immune system so that when the Bartonella and Babesia hit me, I had no defense and they basically ran rampant in my system. Babesiosis is what had me close to death when I first went to Kansas City. It was killing my red blood cells and that’s what carries oxygen to your brain and it made my blood very thick so really starting the blood thinner, Heparin, was a life saver. So Babesiosis was my next target and after 6 weeks of Rifampin and 4 weeks of B12 shots I asked to add IV Azithromycin to my treatment regimen. While Babesiosis is a parasitic infection treating it with a combination of Azithromycin and an anti-protozoan drug (like Mepron) has shown the best results in most patients. But I knew I couldn’t take Mepron. We’re not sure if I have a bad reaction to the drug or if it’s that my Babesiosis is so rampant that I herx too much on the drug – we just figured out after many trials that I simply cannot take it. My doctor mentioned a year ago that we might try Tindamax as an anti-protozoan drug whenever we got me to the point of being able to treat the Babesiosis. So we prayed about that and as scared as I was to try this drug – and believe me there is fear about starting ANY drug because there are risks – I knew after much prayer that it was time to try it. I started it about 6 weeks after adding the IV Azithromycin. While I did have some herx symptoms, we know that God leading us to take that drug is why we’re seeing so much improvement in such a short amount of time! I have had to battle fear a lot during this process and I try to always hand it over to God, but we all know how hard it is to do so. I had to hand my fears about this drug over to Him, and oh how glad am I that I did! PRAISES!!!
This has been so long, but I honestly couldn’t leave any of it out. I don’t know who will read this – there may only be 10 people in total that do – but if there is one person who benefits from anything I write, I will consider this a HUGE success. I would love to think that I helped someone to get a diagnosis, or that I helped a fellow patient through the hardest times of treatment, but what I would love more than anything is to think that God used me to reach someone to come to Him - that He used me to show Himself as LOVING, STRONG, MIGHTY, AND WORTHY OF PRAISE!
Thank you all so much for your continued prayers. I have experienced the darkest days of my life during various times over the past two years and the knowledge that there were people out there praying helped me see God’s love in action, even from my sickbed. I ask that you keep me in your prayers as we continue this battle. We are not done yet and I have a LONG way to go still. I can stay out of the bed for 3 to 4 hours at a time SOME days, but I still live a lot of my life from the bed. It will take more time, but this wonderfully amazing LIGHT that God’s showing me at the end of the tunnel makes me feel more patient and more persistent at the same time. I will continue my fight but I do so more calmly now, resting in the peace that only God can give. I hope all of this makes sense. I pray I’ve done justice explaining all that God has done for me, but I can’t imagine having accomplished such a task! Oh…I almost forgot that I am adding my most recent picture so you can all see what I look like with some makeup and feeling stronger. This was taken a week or so ago after one of my trips out to Whole Foods. I do think I look healthier…but makeup does do wonders – HA!
Finally, I MUST share some of the very first verses I wrote on this site because I claimed these verses – I clung to these verses – and I feel all of them help me SHOUT what God has carried me through and what He continues to do for me:
“Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!” 2 Corinthians 5:17
"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe." Psalm 61:1-3
“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18
"The Lord is faithful in all His words, and gracious in all His deeds" Psalm 145:13
"The Lord will guide you continually, and satisfy your needs in parched places, and make your bones strong." Isaiah 58:11 (NRSV)
“We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.” Romas 5:3-5 (NRSV)
“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 41:28-31
And last but not least…
"O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1
Oh, how I feel like a new creation, He has been my refuge and my strength, He was always with me – even when I was crushed in spirit, He was always faithful, He has guided my every step, He is making my bones strong, He has taught me through my suffering about endurance and hope in Him, He has renewed my strength, and I PRAISE HIS NAME FOR ALL THE MARVELOUS THINGS HE HAS DONE!
Much love to you all-
K
