Three Years Later - by Elissa Campbell
"I’ve relearned to walk, talk, and see, with lots in between. I’d love to get my story out there.” ~Elissa Campbell, 2019 viral encephalitis and viral meningitis survivor
Encephalitis411 first met Elissa when she signed up to Wipe Out Encephalitis during this year’s Nicole’s Challenge: The Walk to Cure Encephalitis. We’re proud to have her as part of the Encephalitis411 community; and to help her celebrate how far she’s come, we’re sharing her story on the 3 year anniversary since her medical journey began.
Please find Elissa’s words below and join us in celebrating her strength, courage, and positive spirit.
2019: The beginning
On November 14, 2019, I was seen in the Northside Hospital emergency room in Cumming, Georgia for dizziness. Due to my work travel for the last 5 weeks, it was determined to be vertigo and I was released. I did vertigo relief exercises and acupuncture twice to try to help.
On 11/17/2019, my husband drove me back to the acupuncturist as my symptoms had worsened. As we left, he had to carry me as I could no longer walk and my speech was severely slurred. Thankfully, he took me to the hospital again and this time I was admitted.
This is where my journey to finding answers and healing began.
By 11/19/2019, I had 3 MRI scans, 2 of them with contrast. I was started on antibiotics to throw anything at whatever this was to help. My rounding neurologist could not find anything with the results of the MRIs and bloodwork. My symptoms worsened as now I could not walk, talk, see, or keep food down.
On 11/20/2019, my rounding Infectious Disease (ID) physician insisted on a lumbar puncture (LP) in a further attempt to find answers. She started me on intravenous immune globulin (IVIG) also. This was a 5 day infusion that was administered along with antibiotics. My husband, daughters, and sisters sat around the clock with me to assist in helping me get up for basic needs. I had to be assisted in walking, eating, using the restroom and eventually showering. I was poked and prodded for daily bloodwork and more MRIs (9 in total) to try to see anything.
By 11/27/2019, results from the LP and MRI finally resulted in the diagnosis of viral encephalitis that settled in the mid brain and brain stem, viral meningitis, and to top it off, IgG (old) antibodies of Lyme disease. It was a go big or go home scenario. The viruses debilitated me and the Lyme slowed my ability to recover.
11/28/2019 was Thanksgiving. A ton to be thankful for including finally being diagnosed, friends and family, medical staff, and my faith to carry me. My family enjoyed Thanksgiving dinner from my hospital room and I attempted (to no avail) to eat and keep it down.
On 11/29/2019, I had a double lumen PICC line (central venous catheter) put in my chest and orders to be moved to a local rehab facility (overnight stay) so I could receive constant occupational therapy (OT), physiotherapy (PT), and speech language pathology (SLP) therapy.
11/30/2019 was my first full day of rehab and they were able to get me to use a walker for 17 ft, even further with the wheelchair. This was a 3 week journey of relearning to do simple tasks of brushing teeth, using the restroom, showering, etc. Keeping food down was still a challenge. I continued daily infusions of antibiotics (Rocefin) and Heparin shots in the abdomen since I was still spending most of my time in bed.
12/20/2019 was the best early Christmas present—I got to come home! Mainly using the wheelchair but still learning the walker, and my husband caring for my needs with showering, etc.
2020: Recovery at home
At home, I continued to have PT come to the house to work with me and my recovery. I was mainly under the care of my ID and having daily infusions of the antibiotic—for 13 weeks daily. I also had weekly visits at my ID office. At the same time, I began working with a Lyme Literate Doctor (LLMD) to combat the Lyme disease. He felt a treatment of Supportive Oligonucleotide Therapy (SOT) was worthwhile to pursue. It’s pretty fascinating to learn about. I have the sweetest family and friends who set up a GoFundMe page because it is a very costly therapy.
I also started boosting my gut health and immune system with Myer’s Cocktail infusions and other natural infusions of vitamins. Typically 2x weekly for about 6 months.
2/27/2020 I finished my 13 weeks of antibiotic infusions and had PICC line removed.
3/13/2020 I received my SOT infusion! This should and hopefully did stop the replication of cells infected with Lyme.
March was also the month I started showering myself. YAY!
By 5/2020, my speech had improved to nearly 100%, and I had stopped using my wheelchair and walker and graduated to a cane. I was very unsteady but determined to become independent. I also started attempting to drive to close by spots, including doc appts within 5 mins away. I was still doing PT and aquatic therapy.
On 9/25/2020 I graduated from PT. Not because I was great but because I had all of the tools to continue improving on my own.
I also returned to work full-time.
Facebook post - November 17, 2020:
One year ago I started a journey I never expected! Most know but some do not. What started out as thinking it was vertigo ended up with viral meningitis, encephalitis in the brain stem, and Lyme disease - mimicking a stroke. This left me unable to walk, talk, or see. I’m so thankful to be here a year later to tell my story and help anyone that may be in similar circumstances. So many blessings and so much love to spread! Thank you Colin J. Campbell, Catie Campbell, Evie Campbell, Lynn Walker Kirby, Steve Kirby, Stacey Walker Stanley, Michelle Simmons Payne, and Catriona Campbell for loving/caring for me like I never imagined! Thank you quarantine for allowing everyone to be with me during my recovery! My care took so many people - family, friends, healthcare heroes - and so much love. A year of infusions, many MRIs, PT, OT, and SLP dropped so many angels in my path! And I met the sweetest people to help with doors, elevators, and everything in between while trying to get the hang of a wheelchair, a walker, and unsteady walking. I was also able to participate in specialized treatment with everyone’s support. Since this, I have improved and I can almost walk without struggle. Through this all, God has carried me, guided me, made sure I’m cared for, and lit my road to recovery!
I’m not sure what the future holds nor do I know God’s use for this journey, but I’m certain I will know soon and proudly do as I’m led.
1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
2021 was a year that I continued to improve on stability and relearn functions not used daily. I realized I couldn’t sing or whistle. These and many more tasks just took focus and determination to relearn. It still remains very tiring. I have to tell my brain to tell my feet to step up for a curb or step over a puddle. Things just weren’t automatic for me.
Fast forward to 1/10/2022, COVID positive and started losing motor skills. Neurologist stated this will always happen with any virus. WHAT???
I had the monoclonal antibody infusion and started back with PT. What I realized is PT continued to work on strength. That is one item I never lost. I lost the ability to do tasks. My brain could not tell my body what to do.
SO… I stopped PT and joined a gym: Orange Theory. This has been phenomenal!! If I can’t figure out an exercise, they give me modifications until I can figure them out.
I also have returned to my kinesiologist for help and sought inflammation reflexology technology (IRT) to take care of any inflammation remaining in my brain. I feel I am closer to being myself, recognizing I have a new normal.
This week marks my 3 years on this journey. (And my 100th Orange Theory class :)) I am so blessed to be here!
What I've learned
What I have found out, I (and my family) am/are my own advocate(s). No one really knows what is going on in my brain as this is not a typical journey.
I wish I knew a “me” when this all started so I could know stuff to help. I do have a new brain with a TBI now.
I have taken all paths with medicine and have a healthy blend of western and eastern medicine. Sleep is my friend and if I need to stop a second, I do.
My mental health is so important and I listen to my head, my heart and my body.
My faith in God has given me the strength to move on. He has provided in all ways for my healing.
My family and friends are my cheerleaders and mean the world to me. I cannot thank them enough!