Michelle Wilhoite

Hello, my name is Michelle Wilhoite. My husband was diagnosed with COVID on February 27, 2021, the day our son got married. It came out of nowhere. One minute he was fine, the next he coughed a deep, there's-something-in-my-lungs-that-doesn't-belong cough. We went to a walk-in clinic about 15-20 from our house. They tested him and said he was positive for COVID. I can't remember why they sent us to the ER. Maybe it was the cough. We drove to the ER at St Thomas in Nashville, TN, instead of taking the ambulance that the clinic recommended. The ER took him, but I had to wait in the car, which I did for a while. It was Saturday evening by this time, and we'd been out since before the wedding, and had dogs at home. The ER told me to go home, that it would be a while and they would call me when he was ready. So I drove the 40 or so minutes home. I had just let the dogs out and was about to feed them when my husband called. The ER was discharging him immediately. He was not going to be allowed to wait inside while I drove 40 minutes back to get him. It was late, chilly, and raining, and they kicked him out just having been diagnosed with COVID out to the street with nowhere to go until I could drive 40+ minutes later. They discharged him with one of those finger heart rate/oxygen monitors and instructions to call them if his oxygen dropped below a certain level. Nothing on how to take care of him or help him get better. That weekend was terrifying. His temperature would go up to 104°F in the evening and stay there all night. The media was warning against treating the fever with ibuprofen or Tylenol, so I tried to keep fluids in him and I'm sure I tried to use a cool washcloth on his forehead (my mother's treatment for every illness). Monday we were able to reach the naturopathic practitioner he had found for my mother in Washington State. He was able to do some energy work with DJ several more times that week, but it wasn't until the third time that DJ was able to speak with the naturopath himself. I don't remember how long DJ was actively sick. It was at least a week that he was in bed except to use the restroom and very short periods of time (about 5 minutes) where he'd try to get up and then have to lie back down. I believe he was sick for about 2 weeks before he started to be more himself. But even then he would feel fine, but then just crash and have to lie down. The brain fog was terrible for him. I remember coming home from work one day and he was sitting on the couch, the water was running in the kitchen sink and had spilled over and flooded the kitchen floor. Even though I could hear it running, he had completely forgotten that it was running. There were times when he'd run an errand and have to stop to take a nap or call me to figure out how to get home. His eyesight was negatively affected, and he started having a lot of cavities and losing teeth. This went on for at least a year after the February 2021 infection; although, it seemed to get a little better over time. He weighed about 185 before COVID and had dropped to 165 lbs by the time he had 'recovered.' He couldn't seem to gain any of the weight back. The naturopath recommended fat bombs, and that didn't help at all. The weight loss seemed to stabilize at 165. Two to three months after COVID, DJ started having pain go down the back of his left leg. It started just randomly. By May it started happening semi-regularly at night and he wouldn't be able to sleep well those nights. This continued and got worse through the summer and into the fall. Somewhere in there, he started having cramps in his hands where his fingers would clamp into weird positions until he could pry them open. At one point, he went to a clinic for the pain in his leg, but they wouldn't see him and just sent him to physical therapy even though they hadn't examined him. We went to the physical therapy clinic, but the receptionist was really rude and unprofessional, so we left. Sometime in the fall of 2021, the pain got so bad at night that he couldn't sleep at all during the night. He would finally be able to lie down about 5 a.m. and sleep until 11 a.m. It was around this time that he had to stop working. He had retired from his job as a police officer a few years previously, but was not getting retirement pay yet, and had been working for a security company, but he had to stop due to the pain and trouble with his bowels. The pain was bad enough that he gave another clinic a try. They tried prednisone and I think something else, but neither helped, so the nurse practitioner sent him for imaging. He had a CT scan on December 31, 2021. The morning of January 2, 2022, while her own husband was in the hospital dying of a COVID infection, the nurse practitioner called DJ to tell him he had two schwannoma tumors enveloping the nerves in the cauda equina of his spine. This is in the lumbar region. She recommended that he go to an ER immediately in order to get this taken care of as quickly as possible, so we did. The hospital whose ER we went to did not have a neurosurgeon, so they transferred us to Centennial. They kept him for a week, did a spinal tap, more imaging, didn't really say much of anything to us, and then came in Friday morning (in the middle of a snow storm) and said he was going to surgery. We were not comfortable with that. The neurosurgeon had barely spoken to us, he was in a rush because someone had driven him to work that day, he got angry with our questions, and he threatened my husband that he would never walk again if he didn't have the surgery that day. Additionally, we didn't feel like DJ was entirely safe there. The day before the head nurse had come in to talk to him about the surgery. I wasn't there because of the snow, he had been medicated for the pain, and he was still having some brain fog from COVID, so he tried to record the conversation with his phone. She got mad, but didn't say anything to his explanation, just stormed out of the room, and the next thing we knew security slammed the door open, charged into the room with their hands on their weapons, and asked if there was a problem. So the bullying from the neurosurgeon was the last straw. When we got there, we checked out and immediately started trying to find another neurosurgeon. The bully at Centennial had said he would have to remove either two vertebrae or pieces of the vertebrae in order to get to the tumors and replace them with steel rods, or possibly a steel cage. We found a neurosurgeon at St. Thomas (yes, the same place that kicked him to the curb with COVID on a cold, rainy winter night) who we liked better, but he seemed a little uncertain about how to handle the tumors. He, too, mentioned the possibility of a steel cage to replace parts of the spine. We were reaching out to other places when we had a chance conversation with an acquaintance whose daughter was friends with the daughter of the head of neurosurgery at Vanderbilt, and he recommended Dr. Zuckerman at Vanderbilt. We immediately set up an appointment, and when we met with him, we liked him right off the bat. He didn't have the ego trip going that the guy at Centennial had and he seemed to know exactly what this type of surgery was all in a day's work for him. When I asked him whether the surgery would require any steel pins or other type of thing to stabilize the spine afterward, he said, 'Oh, no. I just need two little holes. He won't need to put in any pins.' So obviously we went with him. The surgery was scheduled for the end of February. We had a bit of a delay on the final imaging due to insurance getting confused. And then we both caught COVID, nearly a year to the day after DJ's initial infection. This one was more mild for both of us than the first infection was for him. Vanderbilt had him do an infusion of monoclonal antibodies to help him recover more quickly for his surgery. They rescheduled his surgery for March 2, and overall it went well. He had some issues from the positioning and still has some residual numbness in his left fingers and elbow as a result. He also had a great deal of numbness in his left foot, leg, and buttock, some of which still remains. A month after the schwannoma surgery, DJ had a 19mm kidney stone that required surgical intervention. Luckily, they were able to use newer techniques that did not require them to cut into him. It was a little odd. He had had kidney stones years before, but never one that big, and it had been some time since he'd had a kidney stone. Looking back, I would not be surprised if COVID hadn't triggered this unusually large (for DJ) kidney stone as well. After the schwannoma surgery, DJ started having bowel issues. He wasn't constipated in the typical sense, but his bowels moved very slowly. It actually started shortly before the surgery, and we thought it was nerve damage from the schwannomas and the surgery. We suspected back then, and still believe now, that COVID triggered and accelerated the growth of the schwannomas. He had had imaging done of that area a few years before after a car accident, and the neurosurgeon said that typically they would have been visible at that time, but they did not. Due to his bowel issues, DJ was never able to go back to work. He was able to apply for and receive disability due to the bowel issues caused by the schwannomas. Insurance covered parts of the medical visits and surgery caused by the schwannomas, but we still had to pay over $10,000 out of pocket. I know I've spent a lot of time on the schwannomas, but it had a huge and immediate impact on our lives and colored everything that came in the years since. It took quite some time for DJ to recover his strength after the surgery. He continued to have bowel issues and then realized that when he got really backed up, it would make him sick and a little out of his head. He tried different supplements; laxatives were of no use at all. About a year after the surgery, in early 2023, we moved to Pensacola, FL, because the cold became too much for him. Shortly after the move while he was finishing up at the old house in Tennessee, DJ went to the ER for stomach pain and throwing up. They determined it to be constipation and hospitalized him, indicating that a gastroenterologist would see him while he was in the hospital. Someone dropped the ball and he never saw one. They just observed him for a week, gave him laxatives that did no good, and recommended he make sure he gets protein. He was discharged and home before we realized he had never been visited by the promised gastroenterologist. By this time, he was nearly back to his regular strength and activity level. The bowel issues slowed down because it took him a lot longer than usual in the bathroom, and it took him a few more times getting significantly backed up and another trip to an ER before we realized he was getting sick because of his bowels being backed up. We went to the beach a lot that first year, a little less in 2024, but still quite a bit. In 2024, Dr Radhika Sharma with Rehabilitation Medicine at the University of Alabama Birmingham Medicine treated him for neurogenic bowel with Baclofen, which helped some. He has since used L-Carnitine, and now two supplements (Motility Activator and Antrantil, which help better and are less harmful). He also has to do enemas at times to help keep things moving. He gained some sensation back where he had been numb since the surgery, his bowel issues seemed to be improving some. He still had the cramps or spasms in his hands, but on a more regular basis. In winter or spring of 2025, we started noticing that he was visibly losing muscle mass. We tracked his food, and that was not the problem. We brought it up to the naturopath, but he didn't think much of it. Then in spring of 2025, he started having crashes and brain fog again like after COVID. He had heart rate spikes; any physical labor sent him into a crash. Even going to the beach and just sitting there was too much exertion for him. Travel, which had caused trouble with his bowels since they became an issue, became debilitating. His bowels, which had been getting better, got significantly worse. He started having the cramps and spasms in muscles all over his body. He started running bloodwork and trying to find someone to help figure out what was going on. The naturopath seemed to think it was all in his head. DJ tried several other people, tens of thousands of dollars' worth of tests, supplements, and probiotics, but everyone seemed to give up and suggest someone else. One nurse practitioner, at a local clinic started by a doctor who wrote a book on COVID, suggested he try a detox place in Mexico that costs $70,000 or some guys with a YouTube channel (and let her know how that went, please). The naturopath claimed he could cure him if he came to us for a month for only $35,000. These symptoms were determined to be dysautonomia in fall 2025. Almost all of the expenses for the practitioners we saw during 2024 through present, other than the University of Alabama, were out of pocket because they were alternative medicine practitioners. At that point I had to reduce my work hours from 40 to 20 hours a week. Luckily, my supervisors were willing to accommodate that. DJ was unable to drive himself anywhere most days or to fully take care of himself or the household tasks that he usually would. He spent up to 19 hours a day in the bathroom and hit a low of 143 lbs. Currently his weight is holding steady at 150 lbs. He's 5'11" tall. Through trial and error and testimonials that he's found on different online boards, his bowels have improved again where he's only spending a few hours in the bathroom. He has to be very careful with exertion. Sometimes physical labor is okay; other times it will cause a crash. Crashes can last anywhere from 30 minutes to multiple days. Stress causes a crash. He still has cramps and spasms; some days he can drive, other days not. Some nights he can sleep, other nights not. He has neurological symptoms that have nothing to do with the schwannoma surgery, including burning, tingling, and itching at seemingly random times and all over his body. His energy levels are nowhere near where they should be and are rarely predictable. He's had to give up one of his favorite pastimes of motorcycle riding and his dreams of sailing and traveling. We used to go to plays multiple times a year, but we gave that up after having to cancel several times because DJ couldn't leave the house. We have been unable to visit our granddaughters back in Tennessee because travel is so hard on DJ. We had been operating under the impression that the bowel issues from the schwannoma surgery had been causing all of these symptoms somehow, but we recently realized that is incorrect. This is long COVID. Thank you, Michelle