For the last 2 months, my wife has been stuck in what seems to be a state of high immune reaction, with rapidly varying temperature going as high as 38.7. She has a constant very bad headache. When she does anything – even if she sits up – the headache gets worse and her temperature rises. So she has to spend most of her time lying down. She is in constant pain all over her body and very weak and viral. She has had ME for over 30 years but this is the worst she has been. Over the past three years she has had shingles about ten times, most recently a few weeks ago, so we wonder if her body is trying to fight the shingles but never quite succeeding? She now has a bad cold on top of everything else.
Her headache got so bad in early November that she was admitted to hospital. She had MRI and CT scans and a lumbar puncture but all results were ‘normal’. They did however find that her blood pressure was low, her spinal fluid was moving very slowly and her Babinski reflexes were absent. They decided she had a probable viral infection with meningism and sent her home again. The expectation was that it would just resolve itself but of course it hasn’t. Many weeks on she is still just as ill. We are in the UK so of course understanding of severe ME is close to zero. She is lucky enough to have a telephone consultation booked with Dr Sarah Myhill at the end of February but that is a long way off.
We were wondering if anyone can suggest any treatments or cast any light on what is going on with her? Why does her temperature rise when she is ‘active’ for instance? Is this her body encouraging her to rest? We are thinking in terms of antivirals, which Dr Myhill may be able to prescribe but until then she is in the hands of our local doctor/GP who gave her 5 to 7days’ supply of acyclovir/zovirax for the shingles a couple of years ago but seems unlikely to prescribe such treatment for the longer period she probably needs. Does anyone in the UK have experience of getting antivirals from their GP for a longer period?
Any suggestions about any aspect of this would be welcome. Thanks.
Her headache got so bad in early November that she was admitted to hospital. She had MRI and CT scans and a lumbar puncture but all results were ‘normal’. They did however find that her blood pressure was low, her spinal fluid was moving very slowly and her Babinski reflexes were absent. They decided she had a probable viral infection with meningism and sent her home again. The expectation was that it would just resolve itself but of course it hasn’t. Many weeks on she is still just as ill. We are in the UK so of course understanding of severe ME is close to zero. She is lucky enough to have a telephone consultation booked with Dr Sarah Myhill at the end of February but that is a long way off.
We were wondering if anyone can suggest any treatments or cast any light on what is going on with her? Why does her temperature rise when she is ‘active’ for instance? Is this her body encouraging her to rest? We are thinking in terms of antivirals, which Dr Myhill may be able to prescribe but until then she is in the hands of our local doctor/GP who gave her 5 to 7days’ supply of acyclovir/zovirax for the shingles a couple of years ago but seems unlikely to prescribe such treatment for the longer period she probably needs. Does anyone in the UK have experience of getting antivirals from their GP for a longer period?
Any suggestions about any aspect of this would be welcome. Thanks.
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