Well, in a nutshell, a lot has happened since I last wrote. I sort of suck at getting my thoughts out as they come… I often think of the notes I should be making to write about. When the time comes that I want to write, I struggle with where to start, or I don’t feel well and put it off. I find writing therapeutic and hope that my writing will help others, so I’m going to try to stop putting so much pressure on my writing and just simply write to share my heart (and then AJ will go through and fix my typos – and add little funny things like this).
I started this post in the air on August 25 – somewhere between Baltimore and Detroit – and it’s taken me a bit to be able to come back to it and process everything. I was traveling back from a visit to the Jemsek Specialty Clinic where my Mom and I spent several hours exploring a different approach to treatment. Before I dive too deep into that I have to share a pretty big milestone in our lives.
Just a few weeks ago AJ and I celebrated our 10th year of marriage! This January will be 14 years for us, if we include the years we dated!! We have spent nearly half of our lives together and, wow, has it been quite a roller coaster!! These years have included 3 moves, 3 kids, several job changes, and more obstacles than either one of us can keep count of. I feel like each bump in the road has brought us closer to one another and has forced us to seek God in all things. I hope that the years ahead bring us more fun roller coasters (hopefully smaller, though) and that the painful memories of struggles these past 10 years will continue to influence our strength and love for one another.
Speaking of strength… My hubby is one tough cookie. In true Teachout fashion, nothing goes according to plan. As I mentioned, my Mom traveled with me to D.C. instead of AJ. Praise God he was not with me and was home to be with our oldest, whom he rushed to the hospital in the wee hours of the same morning that I had to fly. Carter had been complaining of abdominal pain and it is uncharacteristic of Carter to complain of pain. Sure enough, as my Mom and I waited to board our flight out of Detroit, we got the news that Carter would have to have an appendectomy. At this point I sort of expect these wild things to happen, but it still doesn’t make it easier to process! My heart ached to be leaving my sweet boy, but I knew that AJ was right when he said that I had no choice, because this appointment couldn’t be rescheduled for months. To be honest, Carter was in better hands with AJ, since he’s always been so amazing with my surgeries and he is (usually) calm during such storms. I prayed with Carter via FaceTime at the gate and knew that I couldn’t be in two places at once, but that God would be! I still can’t believe I got on the plane and felt peace. Once again, we have been surrounded by the love and help of our friends, family, prayer warriors, and an AMAZING pastor who stayed by my boys’ sides all day and into the evening, until Carter was in recovery! Who does that? Pastor Tom does! What a memory for Carter to have such strength and love poured into him during a time that he was fearful and in pain! I am so grateful for the gift of time you gave my boys- thanks again Pastor Tom! Carter has recovered slowly, but steadily, from the appendectomy. He had some additional complications and the poor kiddo has been through a lot, but hopefully we won’t have any more complications or setbacks from this mini roller coaster.
Before I get back to the update on our trip, I want to share some good news. Sydney has been off all meds for 5 weeks and is hopefully in remission. She had a bit of an advantage though, as she was on some heavy-duty antibiotics for unidentified issues from an early age and I think that has helped her to progress so quickly. AJ finished his protocol and has been off meds for two weeks now and is also doing well. 2 out of 5 is amazing progress! Carter and Mason still have a way to go.
Our travel was eventful and gave us the full experience of public transportation including being ripped off for our $20 subway fare! I admit I was insane and stubborn thinking I could travel alone in my current state of health and I needed my Mom’s shoulder to cry on at least three or four times! My appointment was thorough, went well, and provided a very different path to treating than the one I have been on. It was good to hear they believe I’ve had some good die-off of Lyme, but I’m not sure how accurate that is as my recent labs do not indicate any improvement whatsoever! Basically, my lovely co-infections need to be treated more heavily in combination with the Lyme in order to make any substantial improvements. I really liked the staff at the Jemsek Specialty Clinic and the treatment concept makes sense to me. I believe in their protocol and firmly agree with their recommendation to focus on stabilization before beginning their aggressive treatment. Getting my pain and sleep under control, in addition to another infection that was identified in the past few weeks, are critical before we can treat effectively and my body can handle the bacterial die-off of treating with multiple IV antibiotics at once. The approach they have presented includes pulse IV therapy (3 days a week of antibiotics, lactated ringers and heavy detox on the other 4 days, and one week off each month). The goal is to teach my immune system to strengthen itself and fight for me, not against me. This treatment comes with a big price tag, travel back and forth, and the same goal of remission. While the treatment makes sense to me, I left the clinic feeling discouraged by its expensive price tag and wondering if that was God’s way of closing the door on this path. My Mom said to me that day, that no matter what we decided to do, I needed to have complete faith in order to move forward and all I could articulate was my confusion and that the faith I have is in my Father (sorry Ricky, not you. The other one). I once again needed to be still and wait for His direction. After days of praying for discernment and for God to make it abundantly clear which path I should take, all I could hear was walk by faith, not by sight. Since I was first diagnosed, I really have tried to limit myself from seeking advice from others about treatment. This is due primarily to the controversy of this disease and the corruption surrounding it, but this time, I felt that I needed to seek input from a few medical minds, as well as our aforementioned Pastor.
The input I received from each was all very similar and each person challenged me on the real reasons I was feeling uneasy. While I was trying to figure out where the devil was in all of this, Pastor Tom suggested that I look at where God’s hand is in all of this instead. And so I did. God has taken me out of a place of discomfort and concern and placed me with one of the top physicians treating Lyme in the country. I was constantly being introduced to people who told me about this doctor and had many other “coincidental” signs that led me to consider Dr. Jemsek. Anyone who knows me well, knows that I don’t believe in coincidences. I kept hearing that I “am so complex and so complicated” because of all of the co-infections I have (not including the new, additional infection on top of all of this) and that was making me uneasy and causing me to question my treatment. I even received a letter in the mail from someone I don’t even know who treated with this doctor. Then, after many months of treating locally, and having some of my heart symptoms flare again, I was finally accepted to be seen at this clinic in late August.
If it hadn’t been for the monetary sticker shock, I don’t think I would have been in such turmoil over all of this. At the end of the day I could end up spending just as much money, if not more, and taking more time to get better if I continued treating here. So, this may be the ultimate test of faith, because we have decided to fully surrender this to God and move forward with this treatment protocol.
We are working on getting this new infection under control (I feel like I should start naming these things), stabilizing the limbic seizures I am having, and addressing my lack-of-sleep issues. I have begun an oral antibiotic protocol that they have tailored for me and so far, I am doing ok with those. I have struggled with the neuro/anti-seizure meds and am not sure I will be able to work through the side-effects of them, because my stomach can’t seem to handle this particular medicine and it’s also making my vision so blurry that I couldn’t even see my phone the other night, which AJ might say is God telling me to put my phone away. So, I’ve backed down on the dosing of that specific med and will see how I do at a lower dose. I also need to add a number of supplements to support my system and aid in detoxing. I have a few weeks to get all of that on board and will return to D.C. for my first infusion appointment on October 1st. The clinic is predicting that I will need 12-15 months of treatment, inclusive of 7-9 months of IV treatment, and then I will be able to transition to only oral antibiotics with the goal of getting down to a maintenance dose shortly after.
So, I am beginning this walk in faith, not by sight. Not by thinking about the tough road that likely lies ahead, but by counting down the IV bags and setting my sights on short- and long-term goals about how I feel – optimistic and FAITHFUL. Faithful in the treatment plan and how it will help put this terrible disease into remission, making how I feel today a distant memory and making how I want to feel, my reality.