When a Wrong Diagnosis Wreaks Havoc

Pull back your leaping mind. That’s not where I’m going with this. This weird saga began almost exactly a month ago, and I’m finally ready to tell it. I can almost see a glint of Abbott and Costello humor in it. Almost.

I have a one-word note on my calendar July 1st. It’s scrawled in my tiny, nearly illegible print and circled: “rash.”  Same notation the next two days. By the 4th of July, I felt like the rocket’s red glare had lodged in my skin. The note for that day: “awful rash, right trunk.”   Next day: “rash, getting worse and spreading, slow creep down right leg.”  It itched like crazy. Tom initially thought it might be something like poison ivy and suggested I apply clobetasol, a topical steroid gel he keeps in the medicine kit. I did put a little bit on the first day, but it didn’t seem to do anything, so I quit.

By Sunday, the stuff was a roughly 16 by 9-inch mess of weeping blisters from just under my right rib cage to mid-thigh and a wide area around my waist. I even had a cluster of blisters on my lower lip, near the corner of my mouth. Tom and I would be driving over to Jacksonville July 9 for his second two-day chemo cycle at Mayo starting on the 10th. I realized there was some process at work that was going to get a lot worse before it got better if I didn’t get some help, so I went to a local urgent care center and was seen by a family medicine guy.

His verdict? “Looks like shingles.” I told him I had the shingles vaccination a couple of years ago, and pointed out the blistery area on my mouth. That did it. He changed his diagnosis to Herpes Simplex Virus One, and prescribed a massive dose of Valtrex.

I was upset. I understand a person’s body may react in strange ways to stress, worry, and lack of sleep. But this? And then I started thinking about Tom, and how I’d read that folks taking chemo shouldn’t get vaccinations while they’re in treatment because the viruses can become active in their systems. HSV-1 is a virus. I was told I had it. Was there a possibility I was endangering Tom? Oh, boy.

First thing Monday morning I faxed and called Tom’s oncology nurse at Mayo and explained my situation. She was clearly concerned, said she would speak with Dr. Tun and get back to us. Sure enough, she called back advising she was calling in a prescription for Tom to also begin a massive dose of Valtrex immediately. I felt terrible.

A couple of years ago, when Tom and I planned one of our regular summer trips to the Western North Carolina mountain town of Maggie Valley for some of that cool air, I bought what I call a “porch sittin’ dress.” It served it’s purpose well, but man, was I glad to find it hanging in my closet. By the time we drove to Jacksonville, it was the only thing I could wear. It hangs loose and has an absorbent, soft cotton liner.



By the time we left for Jacksonville on Wednesday, the 9th, my right trunk area looked like a deeply pickled side of raw corned beef. Then, about an hour into our drive, my left thigh started itching. I looked, and sure enough, the rash had jumped to the left side and was clearly still on the move. The Valtrex hadn’t even slowed it down.

That did it. I whipped out my laptop and emailed the situation to our internist’s, Dr. Macklin’s, secretary and traffic director extraordinaire at Mayo. As I’ve noted in an earlier post, Tom and I have participated in Mayo’s executive health program for years,  so we were no stranger to Kim. She is a dedicated Energizer Bunny of schedulers, a magician. Within the hour, she had me set up to see a dermatologist the next morning. Tom was hot to take me straight to the Mayo Hospital emergency room as soon as we arrived, but once he realized our room at the Inn at Mayo was only a short walk to the ER, and I didn’t have a fever even if a secondary infection might be trying to take hold, he simmered down.

Next morning came and I left Tom in the room preparing for his own full morning of appointments and afternoon of Rituximab and Bendamustine, and headed down the long, climate-controlled corridor from our room at the Inn past the Cannaday Building, the bustling Mayo Building where the hospital is, and to the Davis Building, where I took an elevator to dermatology. Young Dr. Gordon had been prepped with the info on my local urgent care diagnosis. After seeing the rash, he began shaking his head, brow furrowed. He quizzed me closely on whether it was possible I had come into contact with poison ivy. I explained that we live in the woods in a Longleaf pine forest, and that I take frequent walks, so while I couldn’t recall seeing or touching any, it was impossible to be sure.  He expressed the belief that the rash almost certainly had to be the result of a plant such as poison ivy, oak or sumac. Dr. Gordon stepped out for a moment and returned with another dermatologist, Dr. Cappel, who examined the rash and said he concurred with Dr. Gordon’s thoughts on the matter. Dr. Gordon and his wise-eyed and kind registered nurse, JoAnn, took several cultures and performed a punch biopsy. She gave me several large non-stick bandages to cover the blisters. I began to feel better already, knowing that whatever the heck it was, they were going to get to the bottom of it, and fast. He started me on a 14-day course of Prednisone and said to continue the Valtrex, at least until the lab results were back.

Since I was banned from the chemo unit for this trip, miserable me picked up the prescription and decamped to the motel room.

So what was it? Dr. Gordon called me first thing Friday morning and told me I could stop taking Valtrex and so could Tom.  There was no HSV, no shingles. It was poison ivy. I later learned we caught it before a secondary infection could get going, thank heavens. The Prednisone is powerful stuff. Kind of two-edged sword and not something I would like to have to take very often, but it was clearly the medicine I needed to get the situation under control. Bizarre, huh?


Tom said, “I knew it! You got into something. What was that stuff you were pulling out by the little pool house?”

Once we were back home, I thought about his words and clearly recalled an afternoon at the end of June, either the 29th or 30th, when I got frustrated with all the blackberry briars and unidentifiable green weeds that had grown up in a narrow space between sidewalk and chain link fence  just a sidewalk away from my pretty little under-the-stairs pocket garden of flowers and herbs. Wearing jogging shorts and a tank top, I put on gloves to protect my hands from the thorny briars, and started pulling furiously with my dominant hand, the right one, up my thigh and probably even touching my midriff when the loose tank top billowed out. It was hot and I didn’t get very far with the project.

So Sunday afternoon, I went out with my camera to take a look, after first reviewing internet pages of images of the various forms poison ivy takes. There, even more luxuriant than before, thriving from the abundant rains we’ve had this summer, was the prettiest, scariest crop of poison ivy a person could imagine. I took pictures (from a distance), went back inside, and locked the door! Attack of the killer poison ivy!


All the blisters dried up within the week, and soon my skin only looked like there was a very large, geometrical deeply tan birthmark with lines running in all directions, no longer purply-red. It’s still visible, but fading fast.

Tom’s next trip to Mayo for his third R-Benda cycle is coming up fast. We’ll drive to Jacksonville a week from today, with chemo on Thursday and Friday, then a Neulasta injection on Saturday.  And I plan to be sitting in the “guest” chair right beside him this time.




10 thoughts on “When a Wrong Diagnosis Wreaks Havoc

  1. So sorry you went through that craziness. You and Tom need to be side by side, of course, whenever possible, especially now.

    A few years ago, my son was diagnosed with mono and given antibiotics, which promptly brought out a rash all over him. He had been researching Epstein-Barr mono, which responds to antibiotic treatment with a rash, so he knew the doctor had been wrong. They are people, too, I do recognize. I’ve learned to try and remember their fallibility.


    1. So right, Deanna. The urgent care doc was there for me even on a Sunday afternoon, and there was a waiting room full of weary moms with sick babies, folks coughing, even a little girl stretched out across several chairs face down and covered with a small blanket looking so miserable. He doesn’t have the luxury of doing special 24-hour turn-around labs and besides, given the situation — and especially the blisters on my mouth — he made a reasonable call. I myself had trouble believing it was “just” poison ivy. So nice to hear from you here. I’ve missed you!


  2. Boy, can I sympathize with this. My wife is very susceptible, but for the first time last summer I got it – just a touch compared with yours. But soooo disconcerting! Glad you are on the mend.


    1. Thanks, Richard. All better now. Smarter, too! 🙂 One of Tom’s great (cringe-worthy) stories is how he was covered up in a poison ivy outbreak during his high school commencement exercise, which took place in the old unairconditioned Pensacola Municipal Auditorim (now torn down). He must have been passing miserable!


  3. Oh goodness, I’m sorry Sally but I couldn’t help laughing as I winced with imagination of your discomfort and pain. Tis one of the many things we don’t have in Wales though I managed to have a rather severe reaction to a homoeopathic remedy which had as its base poison ivy, my GP was most impressed when she stopped laughing as no-one she had ever treated had such an acute reaction and not for the good. Never knew I was such a delicate flower did you:0) Typical for Tom to remember you on a mission in the weeds… I love that you put protective gloves on then dress in shorts and lose tank top. Hope the medication hasn’t left you feeling a bit blah and that Tom has been his usual loving self even if he may have had a broad grin on his face.


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