10 weeks – mystery virus, any help would be greatly appreciated
I had a red itch on my eye. I went out for a few drinks that evening and woke up with swollen eyes and a progressive red and hot (not itchy) rash that spread from my face down along my neck to my thighs. It was first red dots then red bulls eye lesions. After antihistamines had no effect I went to A&E that night. Two doctors saw me and suggested it would go in a week or two – they gave me no medication.
Within two days the rash had cleared up and I planned on going to work the next day. However I woke that night covered in a raised rash all over my scalp, forehead and full body. Over the course of the week I stayed in and rested as the rash got worse, particularly on my sides and hips and groins. I was completely drained of energy and fainted outside my apartment towards the end of the week. When I woke up arrangements were made by my neighbour to send me back to hospital. Urine tests and bloods tests were taken. My wbc were elevated 13.5. A c-reactive test (which tests for infection I think) was at 58 (I think this is supposed to be below 7). I was prescribed prednisone steroid (one a day), however, I had my worst outbreak the following day including swollen feet and hands. The rash varies in size but is always raised and does occasionally look like bulls eye lesions. But other times it is just large lumps. Because of this outbreak I went to an emergency doctor due to unsatisfactory care in hospital. The doctor diagnosed my condition as erythema multiforme and said major forms can take up to 6 weeks. He prescribed acyclovir (5 a day) and doubled my prednisone to two a day.
Although always lacking energy there was a quick improvement in the symptoms. I had occasional outbreaks primarily in the face and scalp area. I had a particularly bad one after I drank alcohol. I returned to my doctor and another set of blood tests said my wbc had worsened to 15 although my c-reactive test was now reading 28. I decided to abstain from alcohol. However, once my steroids stopped and my acyclovir were reduced to 2 a day the outbreaks came straight back. Energy levels deteriorated further and I had a flu/cold for a week. I went back to my doctor and got more blood tests. She also arranged an appointment with a consultant dermatologist. On this occasion my wbc were improved to 13, my c-reactive test was now ok, however, a test on my liver said it was at 50 (supposed to be lower I think??). At this point I had the virus 6 weeks and I was getting regular outbreaks and felt weak and ill continuously.
The dermatologist did not do much only tell me he got a detailed letter from my doctor and told me what erythema multiforme was. He looked at my back – which had no outbreak at that point – and said he did not think it would be a recurrent form of the virus. He felt it was an acute form, prescribed steroid cream and told me to get my bloods done again. He told me the virus can take up to 8 weeks, sometimes more, to go. He said I should exercise lightly but I explained to him that I was now at the point where it was difficult to walk into work I have so little energy, and that I just lie on the couch all night as I am so mentally and physically tired. My bloods (courtesy of my doctor not the consultant who I never heard from again besides a bill for $190) pointed out that my liver was back in check but my wbc were now at 19 – the worst yet. Full body outbreaks continue about 3 times a week and I have zero energy in work. At this point the virus is having a psychological effect as I am constantly stressed and paranoid that it will come out during the night or at work. I am a university lecturer and find it difficult to have any energy and enthusiasm in work or in front of the class. Between the discomfort of the rash and/or the fear of it worsening I am now not sleeping very much at all – maybe 3 or 4 hours a night and often lay awake scratching the palms of my hands.
Outbreaks and weakness continues. Each morning now I wake up with what appears more like bites or hives on my wrists, hands, hips front/back of thighs and buttocks. Rashes regularly occur on my forehead also. The outbreaks tend to go after about 6 hours – but the tiredness is continuous. Another new symptom is a permanent red and flushed face, I must have a fan in my office and sometimes in my lecture to prevent the redness from bursting into a rash. My eyelids now also swell regularly and it can be difficult to keep my contact lenses in. A final but noticeable symptom is continuous thirst. I drink up to 4-5 liters of water a day and obviously my trips to the bathroom seem endless day and night. I have had to request more steroids now to help with the teaching so I am now on these together with 2 acyclovir, 2 bee pollen tabs, and 3 herbal tablets I received from the health store after a recent visit. Unfortunately there is no sign that the condition is improving.
I would appreciate any insights on this situation as it is getting the better of me at this stage. I am living away from home in a new city and for this reason I am finding it difficult to get satisfactory medical care or attention. My next step it to visit an immunologist as I feel the problem at this point must be something with my immune system as opposed to erythema muliforme.