No Sugar, Dairy, or Gluten – Oh My!

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 Appointment:

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:

Cookies

Recipe here.

Advertisements

Is it Lyme?

Hello everyone!

First of all, I would like to say a huge thank you to everyone for your kind words and thoughts in response to my last post – it’s really helpful knowing that there are people cheering you along. It helps to not feel so isolated trying to fight this sickness.

That being said, there’s been even more tests, doctor’s appointments scheduled and plans made since the last time I posted. Don’t let this blog fool you though, I’m definitely getting in a ton of rest. I’m almost always at home sitting on the couch watching TV, as my roommates can probably attest.

But my current life as a couch potato is not the real story. Let’s go back to September 30th…

Neurologist’s Appointment: 

Going to the appointment, I was curious to see what they would say about my neurological symptoms and if I would be prescribed any new medications, have to go see more doctors, etc. After the doctor took a look at my results, he gave me some interesting news: It might not be Lyme after all. Luckily my boyfriend’s stepmother works in the health field and had prepared me for this possibility – she had told me earlier in the same day after looking at my tests results that Lyme might not actually be the cause (just an example of the outside help I’ve received and appreciate!). The doctor said Lyme is still a possibility along with either some other type of bacterial infection, or Multiple Sclerosis (MS). To make a better diagnosis, they did some blood tests at the office and also referred me to get an EKG, an MRI, and a Lumbar Puncture (LP), otherwise known as a spinal tap. The EKG was to check if any sort of infection had gone to my heart, the MRI to diagnose or rule out MS and just to have a clearer picture, and the Lumbar Puncture to see if there was any sort of infection in my spinal fluid.

The Tests: 

Originally, I was supposed to have the MRI and the EKG on Oct 1st and the LP on the 2nd. But due to my insurance company deciding to upgrade their entire system and subsequently being unable to approve an MRI, I had to have all three tests on the same day, October 3rd. My mom took me in for the LP at Athens Regional around 8:00am. Because it was so early and I was relatively nervous about the procedure, I wasn’t feeling very well. The doctors were extremely nice, though, and did their best to finish the procedure quickly. The initial shot of lidocaine,  the numbing agent, as well as initial puncture of the needle were relatively painful, and I don’t do pain very well. Luckily, I didn’t feel the rest of the procedure besides another prick at the very end. I didn’t end up with a headache (which can sometimes happen when spinal fluid leaks after the procedure), but I did have some killer lower back pain for the next few days. After that, I immediately went over to cardiology for the EKG. After the EKG, my mom and I headed to Athens Neurology for the MRI. After the LP that morning, the MRI was kind of relaxing – I didn’t mind the noise and rhythms of the machine and they gave me a warm blanket for the test, so it was the most comfortable I had been all day.

Still Waiting On the Results: 

As of today, the 16th, I’m still waiting on all of the results from the blood tests, etc. that I had the first week of October. My follow-up appointment is schedule a week from today, the 23rd.

Today, though, I received a call from the neurologist saying that something abnormal had shown up in my EKG. The cardiologist that looked at it said it’s possible there’s nothing to worry about, but he wanted me to come in for another EKG sometime this week to make sure. They didn’t reveal any other of my tests results over the phone, but the women I talked to kept saying the cardiologist wanted to take a look because of my age and because of my “history of Lyme”, meaning that they may have gotten back some results and it appears I did and/or do have Lyme and they just haven’t told me yet. Or I may be reading too much into it. Who knows?

Basically what all that means is if it is Lyme, it may have caused some sort of heart block, causing the abnormality in my EKG. However, this heart block would be reversible if it’s caused by Lyme and the Lyme is cured. What it would mean treatment-wise, though, is that I would be prescribed IV antibiotics for about a month (I would either go to a hospital or have home care come every day to give me the antibiotics through an IV during that time). Still no word on the spinal fluid or MRI results though, so nothing is solidly defined or decided upon at this time.

The Future: 

As of right now, the appointment with the infectious disease doctor and the North Carolina doctor have been cancelled, and I may or may not have to change the name of this blog depending on what the results show. I am actually going to head up to Iowa the first week of November to spend some time with my dad, stepmom, and brothers and to relax until at least the middle of December. I’m hoping to be able to come back to Georgia after that to take the GRE and spend Christmas in Georgia.

I also have an appointment with an LLMD (Lyme Literate Doctor) the first week of November that lives relatively close to my dad. The reasoning for this is that if it does turn out to be MS, the treatment for Lyme shouldn’t affect the MS. Better safe than sorry!

Personally, I’ve just gotten more and more tired as of late. The brain fog, dizziness, and fatigue have stuck around, but the pain medicine that I’m taking has worked really well for my hip pain, and any other pain that seems to crop up occasionally.

Again, I’d like to say thank you to everyone for the support, especially my parents, boyfriend, and roommates. I really wouldn’t be sane still without you guys.

– Emily

Backstory to the Present

Hello Internet! As I am new to the blogging world, it seems only fitting that I introduce myself before I dive into the story.

I’m Emily, and I’m currently 22 years old. I recently graduated from The University of Georgia in May of 2013 with a B.A. in English. Some of my loves include the Redcoat Band and chocolate, but those aren’t the reasons that I’m writing. I’m writing because I was diagnosed with Lyme Disease in August of 2013, and I wanted to share my story about my battle with Lyme.

Pre-Diagnosis:

My story (kind of) begins in February, when I was first diagnosed with mono. I battled fatigue  through the end of my senior year at UGA, and things started looking up by graduation. I went into May with more energy, and was able to have a somewhat normal beginning to the summer. It included a camping trip (where I may or may not have encountered the tick that gave me Lyme), several beach vacations, a trip to California with family. I even wrote the routines for and taught a high school colorguard. However, I noticed in June that I still wasn’t feeling very well – I fell asleep on a bench in Disneyland as well as in the middle of a colorguard rehearsal. By July, I figured it was time to head back to the doctor to see what was up.

I went to the my university’s Health Center first, as I had just graduated. They did a blood test to see if I was anemic. After that came back negative, the doctor told me that it was probably just a relapse of mono. But with my past history and lack of confidence in the Health Center, I decided to head to a different doctor.

I then went to a walk-in clinic to see if they had any other ideas. They did the same thing – blood tests to make sure all of the standard tests were normal. Nothing came back abnormal with these blood tests, so they sent me on my way and told me, again, it was probably just a mono relapse.

After a few more weeks, I noticed that I was beginning to feel light-headed and dizzy for prolonged periods of time. This hadn’t ever happened during the time where I had just mono; it got to the point where it was so severe that I ended up having to quit my job because I couldn’t concentrate. Thus began the search for another doctor.

One of my roommates told me about the doctor’s office she goes to, so I scheduled an appointment with them for the following week. I went to the nurse practitioner at the practice, and he was was the first person that took my complaints seriously. He ordered blood tests for a variety of possibilities as opposed to just the standard tests. When the results came in, I had tested positive for Parvovirus (otherwise known as Fifth Disease, which I had when I was little), Mono, and Lyme. In addition, I also had an abnormal ANA test, which could be indicative of an autoimmune disorder, such as Lupus. The Parvo and Mono positives were most likely because I had contracted both viruses in the past, and the antibodies were still present. The doctor prescribed three weeks of Doxycycline for the Lyme, and referred me to a Rheumatologist to find out more about the abnormal ANA test.

Post-Diagnosis:

By this time, it was around the beginning of August. I finally had a solid reason as to why I was so tired, light-headed and unable to concentrate. I was relieved and nervous at the same time. I knew I wasn’t going crazy and that there was something medical causing all of these issues, but I was anxious about the fact that I may have some sort of auto-immune disorder. I began the Doxycycline and scheduled an appointment with a rheumatologist my aunt suggested.

After a week or so of taking the antibiotics, I began to feel a little better. They made me nauseous at first, but I began taking them with a little food and all continued on smoothly.

I went to the rheumatologist, and luckily all of my tests came back negative; my ANA test was a false positive and I had no autoimmune disorders. I finished the Doxycycline, and felt as if I was going to put the summer of sickness behind me. But the Lyme had a different agenda.

After a few days of ending the antibiotics, I began to feel tired again. A few days later, the light-headedness came back. I already had to schedule a follow-up appointment with my doctor, so I went ahead and made the appointment with the intention of letting him know that I was starting to feel poorly again.

On September 16th, I went in to the appointment prepared to continue fighting against the Lyme. However, I had my appointment with a different doctor, as the nurse practitioner that diagnosed me had just left the practice. Because of this, I was placed with the doctor who owned the practice. At the appointment, I told him my story – that I had finished the antibiotics, and that I still wasn’t feeling well. The doctor did an extremely poor job of listening. He kept trying to imply that my fatigue and cloudy mind were because I was depressed, he made inappropriate comments about my activities (including insinuating I had been drinking at a Braves game when I hadn’t and that was why I felt so terrible when I was out of the house for a few hours), and told me I should be grateful that I didn’t have an autoimmune disorder. He assured me that I should be cured of Lyme because I finished the antibiotics. He then sent me away and told me to come back in a month or two if I still wasn’t feeling better. I left the doctors office feeling dismissed, dejected, and frustrated that I was condemned to a month or two of feeling mentally confused and tired.

Now my mom has been fighting this battle with me along the way, making trips back and forth from Athens to Atlanta for the rheumatologist and doing an extensive amount of research about Lyme from home. When she heard about the doctor’s response, she immediately went into ‘mom mode’, expressing her anger at his actions and looking for the best doctors possible to make up for what this specific doctor had dismissed. She made an appointment for me with a neurologist in Athens for this upcoming Monday, September 30th.

The Present:

That’s what brings us to this week. My mom had come up to check on me on Sunday to make sure that I was doing okay. The only thing that had really changed since my appointment was that I started developing pain in my right hip – joint pain similar to arthritis is common in Lyme patients. However, on Monday, things began to get worse. I woke up with hip and leg pain, had a low-grade fever all day (99.0 to 99.5) and was so tired I didn’t want to move. Towards the end of the day, the bottoms of my feet had a strange sensation (not like burning, but more tingling) and my fingers were losing grip strength and I couldn’t type because they wouldn’t press the keys down hard enough. This was enough to send me back to the doctor.

Yesterday, on 9/24, I had an appointment at the same practice I had been going to, but with the new nurse practitioner. My mom came with me this time, armed with a few months’ worth of research and a list of questions. The new nurse practitioner was much more helpful than the doctor I had seen previously; he listened intently, took notes, and showed interest in my case, including asking for copies of the IDSA and ILADS guidelines. (Side note: The IDSA is endorsed by the CDC, and states that the three or so weeks of Doxycycline is the standard treatment for Lyme. The ILADS came about in response to this, claiming that the three or so weeks is not final, and a person with Lyme needs treatment until the patient feels better. Basically, the ILADS guidelines are better, but the IDSA is supported by the CDC. This needs to change.)

The nurse practitioner prescribed me another three weeks of Doxycycline, Mobic (a pain killer) for my hip, and samples of Lyrica in case the nerve issues continued. He also referred me to an infectious disease specialist to try and cure the Lyme.

This morning, 9/25, I woke up from a nap to find that the left side of my jaw was numb. Facial paralysis can also occur in mid to late stages of Lyme. After calling the nurse practitioner, he told me to take the Lyrica until I see the neurologist on the 30th. Luckily, the feeling in my jaw seems to be coming back slowly as of right now.

The Future: 

As of right now, I have an appointment the third week of October with an infectious disease specialist. My mom is currently helping me to set up an appointment with a Lyme Literate Doctor in North Carolina. And I have an appointment with a neurologist in Athens on the 30th. If none of these doctors can help, it’s possible that I will head up to Iowa to live with my Dad for a while and try to find a doctor up there that can help, as Lyme is more common in Iowa.

While I’m no where close to the end of this battle, I can say I wouldn’t have gotten through it without support. My boyfriend has been with me through it all (he skipped class today for me when I was freaking out about my face earlier), and my roommates have always been willing to go and get me dinner or keep me company when I’m not feeling well. Finally, my mom has done more research than I probably did the entire time I was in college and scheduled more doctor’s appointments in the past few weeks than I can count. The biggest thank you goes out to all of them.

So overall, thanks for sticking with me through this novel of a post! It’s definitely been therapeutic getting this all in writing – it is a pretty scary time when your face goes numb and your fingers won’t type. I’ll keep updating as I see the doctors and as more progresses.

Until then, use bug spray, pull your socks up over your pants when you’re in the woods, and keep Lyme prevention on your mind!

– Emily