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


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