Ramsey and Me

I did not officially meet Ramsey until June of 2017. He had been by my side for many months. I never knew of him before, never heard of him, yet Ramsey Hunt was now a part of my life, a very big part.

By training I am a Holistic Nutritionist. I am also a research enthusiast. I spend hours with my clients listening and searching for the root causes of their health issues. Yet, I was completely in the dark when Ramsey entered my life.

In December of 2016 I was in St. Lucia with my family on vacation. On a beautiful sunny morning my family went kayaking. My son and I were in one kayak and my husband and daughter were in another. A wave came and knocked my kayak over and we were thrown into the water. We got back into the kayak and continued laughing and having fun.

The next day my son was not feeling well, he complained that his ear hurt and he was hot to the touch. The local Dr. came and diagnosed him with an ear infection. She prescribed meds and he was fine within two days. It was not a stretch that when I arrived home and my ear was bothering me that I thought I too had an ear infection.

Within days of my returning home from my trip, swallowing became extremely painful. It felt as though I were swallowing glass. My right ear was extremely swollen and painful to the touch-I could not fit my finger in it. The ear pain was bad, however my hearing was fine. It was unlike any ear infection I had. I had no fever, no aches or pains, just the pain in my ear and throat and a complete lack of energy. I moved from my bed to the couch. I had no appetite and when I was able to eat the pain in my throat was unbearable.

After about two days of feeling awful I went to the local urgent care in my neighborhood. A rapid strep test was performed and the results were negative. The Doctor said my throat was red and my ears looked fine. He told me to go home and take Advil, that I was not that sick. I know my body and I knew that I was very sick and the doctor was very wrong.

Still feeling terrible. I made an appointment with my PCP. I went through what the urgent care Doctor told me. She saw my ear was swollen and my throat was red. She prescribed an antibiotic and a steroid ear drop for my ear. When speaking with her after the exam she mentioned a few things that it could be; an upper respiratory infection, shingles and some other thing I do not recall. I told her I did not have a rash so she dismissed shingles, told me to go home and take the meds.

After two doses of the antibiotics, I went from feeling really bad to feeling extremely sick. All I could do was rest my head, lifting it was excruciating. I stopped taking the meds (the doctor agreed). I started taking Oil of Oregano four times a day (oil of oregano is antibacterial, antiparasitic, antiseptic, antiviral and immune stimulating). I was ill the better part of January of 2017. Slowly I started feeling physically better. I was still having an issue with food. I lost 8 pounds. Nothing tasted right, nothing tasted good. When my strength returned I spent much time researching to find out about my taste issue. Sometimes, I read upper respiratory viruses can alter the taste of food. But as the days and weeks went by my taste was not getting any better.

I started experimenting with foods that I had not eaten in years, trying new and different foods. Nothing. I put my training to use and slowly I began to realize a common thread with the foods that tasted bad. The common link was sweetness. Everything and anything that had any sweetness to it tasted awful-tasted like I was eating a dirty metal pole. The maple syrup I would put in my oatmeal, honey, certain nuts (almonds have 4 grams of sugar per serving), lettuces, some and most vegetables, foods I loved, all tasted horrible. So horrible it would hijack my palette for hours. Foods I once loved I could no longer enjoy.

Slowly my appetite returned. The weeks following I set myself on a quest to figure out what I could eat. This is what I found I could eat without that horrible taste: plain oatmeal, eggs, lightly cooked and raw onions, mushrooms, white fishes, arugula, radicchio, bok choy, cauliflower, steamed spinach, raw garlic, some beans, seeds and some nuts. Foods that I had once loved I could no longer consume. No fruit, no chocolate, no wine, no salad, no balsamic vinegar just to name a few. No sauces or marinades. Everything had to be simple and plain.

As time went by I grew more upset and angry. Sometimes my mind would forget but my palette did not; it was a constant reminder of what I could no longer enjoy.

During this time I had also developed a choking reflex only on the right side of my throat. For no reason I would start gaging. I knew in my gut this was part of the virus, and it affected how I swallow.

As the months went by I tried to live as best I could without letting this get in the way. Meals at home were not an issue because I controlled and cooked what I ate. On the outside, however, that was a different story. I was looking at menus to see if I could eat at a restaurant. I would call ahead to see if I could get plain food. Food is such a large part of our life-it is our social life, what we do with our family and friends; it is what we explore when we travel. I no longer looked at food in the same way. What should be an enjoyable part of life has become a hindrance.

In June of 2017 I was lunching with some friends. I was explaining what I was going through. One of my good friends’ husband is a world renowned ENT. Unbeknownst to me she spoke to him on my behalf. He wanted to speak with me. My first thought was, something has peaked his interest about what I was going through. A few days later he called me, it was a Saturday. We had an on-line consultation. Since it was six months after I was ill I was not presenting with any symptoms, only my taste, he proceeded to ask me many questions; one of which was did I ever have chicken pox. My answer was yes, as a child. Then he proceeded to tell me the following.

In his opinion, I never had an ear infection. What I had was Ramsey Hunt Syndrome. As he put it, “it is the same church but different pew, a virus in the same family as chicken pox and shingles”. One of the nerves that connects the ear to the tongue was damaged and most likely damaged permanently. Had I been treated with anti-virals within the first couple of days, it might have prevented the virus from damaging the nerve. The good news was that it was not life threatening. He then told me to see a neurologist to confirm this diagnosis.

This was a lot of information to take in. Armed with this new information, I searched the internet for hours each day. I read everything on Ramsey Hunt. What I discovered was Bells Palsy of the face and eye were part of this syndrome too. I was lucky that I did not have this aspect of this virus. I made an appointment with a neurologist but that appointment was two months away.

It was August, almost eight months after I was sick that I had my neurologist appointment. I was given a complete neurological exam. It was normal. I was there about ninety minutes discussing what I was experiencing. An MRI was discussed to see if there were any structural abnormalities, but a previous MRI indicated no abnormalities. He wanted to wait and see if there would be any improvements. Another appointment was scheduled for two months later.

My next appointment was my last appointment with the neurologist. He offered me no solutions and admitted there was nothing he could do. I did decline a test to put needles in my tongue. Some might say why? My answer, I know what I have, what if it causes more damage and I lose what taste I have left? It was a risk I was not willing to take, I was already so limited with what I could eat.

Navigating this new world with Ramsey was frustrating and aggravating and sometimes depressing. Sometimes I would forget and eat a food that had sweetness. But my tongue did not forget and I was instantly reminded with that horrible metallic taste. When I am home and in my routine, I am okay with it. I prepare my food. Recently on a trip to the islands I was reminded all day long, every day what I have to live with. While my family was enjoying the drinks and delicious foods, my diet consisted of plain foods. My sense of smell is better than ever and it was also my torture. Not being able to enjoy the foods that smelled fantastic is frustrating.

My mom keeps asking me if anything has changed, if I have tried some of the foods I used to eat. More than anything I want to tell her everything is normal, that I can eat all the foods I once loved again. Sadly, the reality of my situation is that nothing has changed. A friend of mine’s mom has Ramsey-Hunt. She has the worst, more extreme form. She has the facial paralysis. I consider myself lucky and keep reminding myself that it is not life threatening. Maybe one day it might change; but I cannot live with that hope. Ramsey, the companion I have learned to coexist with is always there, by my side.