Hey everyone! I hope you guys are all doing well and are beginning to get into the holiday season (with Christmas carols waiting until after Thanksgiving, of course), or at least that all of your stomach aches from Halloween have dissipated. Personally, I’m glad I ate as many Take 5’s as I wanted this Halloween season, because those will be my last bites of candy for a while…
The Rest of October:
I went back to the neurologist on the 23rd as scheduled, and it was a mix of good and frustrating news. The good news is that all results came back mostly negative. Nothing in my blood, nothing in my LP, and nothing through my follow-up EKG. The only thing that came back slightly abnormal was I have a small Chiari Malformation in my brain, but I had a follow-up MRI for that a few days after the appointment, and that also came back with results showing that it’s not affecting any sort of brain function. So that was the good news. And the frustrating news was that…everything came back negative. Don’t get me wrong, it was definitely a relief to know I have nothing seriously wrong with my brain or heart. But at the same time, it’s frustrating hearing that nothing is registering as wrong with you, but you still feel completely terrible day in and day out. So with all of my medical records from past appointments in hand, my mom and I began the two-day road trip to Iowa.
The Road Trip:
We set out on the morning on of November 3rd. Let me tell you though, riding in a car for seven hours with a puppy who hates riding in the car isn’t necessarily a field trip, even when he was sedated. By the middle of the first day he refused to ride anywhere besides my lap, so I can now say that I have mastered the art of sleeping in a car while holding a dog. We stayed the first night at a Casino in Metropolis, Illinois (they actually had a billboard that said “Home of Superman,” too). We ended up at the Casino because it was the cheapest place my mom could find that allowed pets, and it was surprisingly nice in the actual rooms, too! The second day was relatively uneventful, and my mom and I arrived in Cedar Rapids around 6:00pm on the 4th of November. I was able to stay a night in Cedar Rapids, get Theo comfortable with his new puppy pal, Paris, and then my mom and I left for Wisconsin on the afternoon of the 5th for my appointment on the 6th.
The Lyme Literate doctor in Wisconsin has, by far, been the best doctor I’ve seen through this entire process. I was apprehensive going into the appointment because the neurologist was extremely skeptical of the idea of a Lyme Literate doctor and because of the doctors in the past who have been so dismissive. However, from the second I walked in the door, I was put at ease. The receptionist knew me by name, and I was immediately brought into a room and given water and my mom was given tea (how many doctor’s offices do you know that give tea to their patients’ moms?). I then met with the actual doctor, and he spent a good two hours talking with me about symptoms, doing a physical examination, taking blood, and asking general questions. He was much more informed about Lyme, knowing what questions to ask. I was never aware that many Lyme patients tend to have worse joint pain on one side of their body, that it irritates their throat, etc. After talking over symptoms, the doctor believes that the diagnosis is, in fact, Lyme. With that in mind, he began to work out a treatment plan with me.
He asked me from the beginning whether I would prefer to hit it hard or to take the treatment slower, and I wasted no time in answering that I wanted to hit it as hard as possible. Because of that, he prescribed me three new prescriptions in additions to the ones I’m already taking as well as a large amount of supplements and a change in diet. He’s hopeful that I will be back to normal by March!
The Results of One Test:
All had been going fine after the doctor’s visit, but two days ago I received a call from a lab in Wisconsin where my blood work was sent. The woman was from the lab informed me that my test for Rocky Mountain Spotted Fever (another tick-borne illness) had come back positive, showing that I had developed IGG antibodies for it, meaning I had it for more than a month or so. When I had originally been given this test in August, the test had come back negative. While this isn’t particularly alarming at the moment, the woman definitely gave me the third degree on where I had been and asked about my case in order to find out if she had to repot a case of RMSF in Wisconsin. Because I had never been to Wisconsin before my blood was drawn, the case won’t be reported. As for my own health, that may mean that I was infected with both Lyme and RMSF, which is possible through some species of ticks. However, the treatment for both begins with doxycycline, and since I’m already on that, my doctor told me to continue treatment as planned.
Living Sugar, Dairy, Gluten, and Caffeine Free:
You guys read that correctly, I have cut out sugar, dairy, gluten, and caffeine from my diet (and the only artificial sweetener allowed is stevia, an all-natural sweetener). When the doctor first said that this is the diet that allows for the optimum amount of success, I thought there was no way. Luckily, with the support I’ve had from my mom, dad, step-mom, and boyfriend, I’ve managed to avoid those food types for the better part of a week, now. I never realized how many foods had those things in them, it’s definitely an eye-opener. I’ve never before read so many ingredient lists as I have this past week. In addition to that, I am now taking a new regime of medication and supplements. I think I am currently taking somewhere around ~20 pills a day – a price I am definitely willing to pay in order to feel better. The only downside to this is what’s known as a herxheimer reaction, or “herxing” for short. What that means is that as the bacteria in my body is dying, I begin feeling terrible in general – achy, fever, headache, etc. I’ve only had to deal with this for about a day since I started taking all of these medicines, but the general idea is that it will get worse before it gets better. Again, a price I am 100% willing to pay in order to feel back to normal.
As for right now, I’m probably going to end up back in GA right before Christmas, sometime after my next doctor’s appointment on the 2nd of December. Until then, I’ll enjoy the time up in Iowa with my brothers, work on grad school applications, and hopefully begin to feel better at some point soon! This almost goes without saying at this point, but there’s no way I could stay sane without my family, my boyfriend, or my crazy roommates who are always willing to talk and keep me entertained while I’m away from home. Thanks to all of you. : )
P.S. The thing I miss the most on a gluten and sugar free diet is dessert…luckily one of my little brothers helped me bake chocolate cookies with a gluten and sugar free recipe I found online. They were actually really good! Check it out: