EBV: The Letters Equivalent to H-E-L-L

In the last year these three little letters have become so much more to me than just part of the alphabet. They now represent the enemy. An enemy wreaking havoc on the cells in my body. Of course, it’s not the actual letters that cause the harm, but what they stand for… Epstein-Barr Virus.

I remember the exact moment I started to feel unwell. I was in Austin, Texas walking up to The Domain, an outdoor mall. I felt like I was on the verge of a cold or flu, which wouldn’t have been too out of the norm since my husband and I had just traveled from Salt Lake to Texas for his sister’s wedding. I am sure you know the feeling, a bit tired with a scratchy throat. Little did I know it was the beginning of a shit storm.

At the time I knew nothing of EBV. Not even the fact that it is the virus linked to mono. We traveled home from Texas and I had what I thought was the common cold so I continued on with life. You know just the standard stuff, like demo of my kitchen, growing my small business, putting our dog down, living in a hotel for Christmas and New Year’s, installing, sanding and staining new hard wood floors, going on a trip to the mountains with our friends. The regular stuff people to around the holidays. Again, not knowing that stress is like fuel to the EBV fiery hell that I was about to succumb to.

The day after Christmas my throat felt like it had a hole burning through it. I thought I had strep. After my husband and I finished installing the hardwood floors in our demolished kitchen, he took me to urgent care. To my dismay I tested negative for strep. The doctor said it was likely bronchitis and sent me on my way. The next few weeks I was exhausted and felt terrible. But the show must go on. We were in the middle of remodeling our kitchen and living room and already had contractors scheduled.

Back to the doctor I went in January. I had a headache that wouldn’t quit, my exhaustion was insane making it hard to even get out of bed and I had relentless anxiety! After a slew of tests I was given an anti-anxiety med. Here’s a big shocker… it did nothing to help. I spent the better part of February in bed outside of one short trip to Denver to visit my sister where I got sick with a cold. Again.

Now starting to fear the worst after days of Googling and running my symptoms through online symptom checkers, I went back to the doctor. My headache was spanning 2 months. I was scheduled for a brain MRI which thankfully came back clear. At that point my doctor sort of threw in the towel. She referred me to a neurologist. I wasn’t even sure what to do next. I knew that a neurologist wasn’t the answer so I just slept through March.

My symptom list felt like it was growing. Fatigue, headache, terrible anxiety, loss of appetite, off and on sore throat, a ringing in my ears, pain and clicking in my jaw and malaise, which I didn’t know about either until I experienced it… malaise is an overall feeling of being unwell. I tried to pinpoint symptoms to seek answers for. I saw an ENT for the sore throat. He did a nasoscopy to check out my sinuses and throat and diagnosed me with slight inflammation around my vocal cords from mild acid reflux, which I literally never even had symptoms of. Then to an oral surgeon for the pain in my left jaw where I was diagnosed with TMJ disorder.

Still not feeling better and still (and forever) thankful that I didn’t have a brain tumor, I knew I had to find a new doctor. Maybe I had TMJ disorder and mild gerd, but I knew that those diagnoses weren’t the main issue. They seemed to be more like symptoms of a bigger problem. At the time I had started seeing a therapist thinking it was in my head and all caused by this overwhelming anxiety I had and she recommended a primary care physician to me.

It wasn’t until June that I got in to see this new doctor. She spent about an hour talking to me about my symptoms and toward the end of the appointment as she was requesting lab work she said, “Have you ever had mono before?” As far as I knew I hadn’t, but after hours using online symptom checkers I knew that Mononucleosis was often at the top of the possible illness lists. The doc said she was going to just add the EBV test just as a precaution. As she said it I was thinking there is no way. What married 38 year old gets mono?!? But she also shared that she had had mono in her mid-30s and had many of the symptoms I was experiencing.

The EBV test came back negative, but my IgG antibodies tested off the chart for EBV. When I say off the chart, it was so high I thought the test was maybe messed up somehow. At 22 U/mL (units per milliliter) is when the antibodies for EBV are detected in your blood. My IgG was >600 U/mL. Technically, my doctor couldn’t say that I 100% recently had an active case of EBV, but she did say that after looking at my antibody numbers she would “bet” that I had, in fact, recently had an active case of EBV.

This is when shit really gets weird. When I saw my results I had a huge sense of relief. I finally knew what was causing me to feel like hammer dog shit for the last 8 months. There was no prescription to be written or follow up test. Honestly, I was just told you had mono, but you’re now healthy. See ya, bye. By July I was starting to regain my energy levels so I just went on with my life for the next month trying to get rest, listen to my body and heal the best ways I knew how. Then I felt a lump next to my ear. I know that sometimes your lymph system gets inflamed when it is working through the healing process so I tried to let it be. After about a week my neck became really stiff and the left side of my neck and jaw were swollen and sore.

Back. To. The. Doctor. This shit was getting to be too much. The same doc that diagnosed my EBV sent me for an ultrasound of the lump next to my ear and my neck. At about 5 pm the day I had gone in for the ultrasound the doctor called me and said that they found a small nodule in my parotid gland. I would need to see an ENT that specialized in the salivary glands for further guidance. It took me 3 weeks just to get a consultation and I could write an entire blog post about those 3 weeks. The result of the consultation was an ultrasound guided biopsy and another MRI.

The biopsy sucked. Even with 2 syringes of lidocaine I could still feel them sticking my head with needles. The nodule was very small making it really hard for the surgeon to get to it. Plus I was extremely nervous to the point that I was visibly shaking. Your main facial nerve runs right through your parotid gland and even though the surgeon was using an ultrasound to see the nodule, the facial nerve isn’t visible on the ultrasound. Sounds like no big deal until the surgeon touches that nerve with a needle and it sends shooting pains through your cheek and mouth. Just to top it off I wasn’t allowed to have any support in the hospital with me… thanks COVID-19. Four biopsies later I was done.

Next up another MRI. My third one in twelve months. Fun times. The MRI was a piece of cake compared to the biopsy. I even had some sweet old school rap to listen to in my headset while the big ass machine did its thing. An attractive pant suit that included 2 gowns, pants so large I had to hold them up and matching socks, a quick IV poke for the contrast, Biggie Smalls playing in my ears for a couple of songs and I was done.

The test results came back pretty quickly. The biopsy results showed a benign/reactive intraparotid lymph node with no signs of malignancy. In the comments it said that “the patient’s recent viral infection and positive EBV serology are noted and the findings here are likely related to post viral sequela.” I cried tears of joy the rest of the afternoon. I would just randomly burst into tears because I was so thankful. The nodule was benign. The MRI results supported the biopsy. A reactive left parotid lymph node and all else was normal. EBV is an evil bitch.

All of this and there still is no direction on what I need to do to get my health back. While I am feeling better there are still symptoms that come up for me. My throat is still sore from time to time. I am having some hormonal related issues (hello, acne and periods from hell!). The now famous reactive lymph node that I have coined as my old dog bump is still ever present. The lymph nodes in my neck will randomly swell and cause me pain. All of this from a virus. It’s like long haulers for EBV.

Without direction from my doctors, I have done a significant amount of research on EBV and it really is an evil bitch. I am thankful I have found the source of the ailments I am experiencing, but I do feel as though my journey back to health is just beginning. My hope is that I can kill the virus that has taken my health for the better part of 2020 and can avoid the virus that had taken the remainder of 2020. Perhaps I will share my journey back to health, which at this point feel like one giant experiment, in a later post, but for now cheers to celery and parsley smoothies!