Thakator
04-21-2011, 09:45 AM
Hi,
As one who has for months checked in on this site 3-4 times a day, it has seemed odd not to have been able to so for a couple of weeks; but such can be the case when the old Wegs bites and we end up with those hospital visits and periods of protracted recovery. Of late, I've had two, for two specific reasons and both related directly to a secondary consequence of Wegs.
My habit when posting here is to try and do so only when it might add some information which might help even one of us or even one of the passers by. That's why I write today (the first day in which I've felt the strength to do so in weeks). I've checked the search mechanism herein; I've checked the listings of postings and I've found no mention of CMV of cytomegalovirus. Which strikes me as odd (even though I had never heard of it myself) because it seems as though it is very common in the world and that fully 80% of the US population has it.
At the eighty percent rate, many of us on this site have CMV and have likely had it for years and even decades; one simply never knows he or she has it - - as long as that good old autoimmune system is working like it should. Well, shut that down as many of us do and the door is open; you don't even have to contract it via a new exposure, it can simply pop out of yourself like the flowers in the desert after lying dormant in the sand for years - - not so pretty, though; CMV, like the old Wegs itself, is nasty. It can ravage the liver, it can cause blindness, it can damage the brain via encephalitis and it can be fatal.
I found no mention of CMV but found many posts on fevers, some of which I've written myself. We seem to find fevers of unexplained origin fairly often given our disease and its treatment. Well, here's yet another potential cause. I had fevers every morning for three weeks; got in to the upper 102 range, then the 103's and then finally the mid 104's before the culprit was found. CMV is known for producing protracted fevers and for an exceptional sapping of ones energy. I will say, "Amen" to that.
It is also a virus the test for which takes several days and is quite costly - - hence may not be routinely ordered by many doctors. Especially the test for CMV activity and not merely the test for it's presence (80%). Perhaps you've been tested for CMV when you mentioned fevers to your doc., perhaps this is an old hat virus to you, but thought it best I mention in case it wasn't so that you might ask about it yourself if the situation ever seems to fit. Because it can be nasty, because it's so prevalent, because we're apt to be harboring it within ourselves and because it can of a sudden come to life when we hit that certain point of immunosuppression.
After eight days in the hospital and a conversion from the IV to the oral form of treatment, I am fever-free (major improvement). So the treatment works; trouble is, there's only one known treatment. No alternatives, or so I'm told. Valcyte - -at the rate of $6,000 for the first month and $3,000 per month maintenance thereafter - - for as long as one is suppressing their immune system, ie: as long as one is actively fighting the Wegs. Because CMV can't be cured and can't be eradicated from our bodies; it can just be pushed back under the sand and kept quiet until we get a safely functioning immune system going again - if ever.
Hope I haven't added to the list of things that bring us fear along our Weggie way, but did want to add to this site's reference materials of things we may need to be aware of as we deal with the strangeness and complexity of our symptoms and things we may need to ask our doctors about if they haven't covered the possibility - - cytomegalovirus, for your consideration. Ron
As one who has for months checked in on this site 3-4 times a day, it has seemed odd not to have been able to so for a couple of weeks; but such can be the case when the old Wegs bites and we end up with those hospital visits and periods of protracted recovery. Of late, I've had two, for two specific reasons and both related directly to a secondary consequence of Wegs.
My habit when posting here is to try and do so only when it might add some information which might help even one of us or even one of the passers by. That's why I write today (the first day in which I've felt the strength to do so in weeks). I've checked the search mechanism herein; I've checked the listings of postings and I've found no mention of CMV of cytomegalovirus. Which strikes me as odd (even though I had never heard of it myself) because it seems as though it is very common in the world and that fully 80% of the US population has it.
At the eighty percent rate, many of us on this site have CMV and have likely had it for years and even decades; one simply never knows he or she has it - - as long as that good old autoimmune system is working like it should. Well, shut that down as many of us do and the door is open; you don't even have to contract it via a new exposure, it can simply pop out of yourself like the flowers in the desert after lying dormant in the sand for years - - not so pretty, though; CMV, like the old Wegs itself, is nasty. It can ravage the liver, it can cause blindness, it can damage the brain via encephalitis and it can be fatal.
I found no mention of CMV but found many posts on fevers, some of which I've written myself. We seem to find fevers of unexplained origin fairly often given our disease and its treatment. Well, here's yet another potential cause. I had fevers every morning for three weeks; got in to the upper 102 range, then the 103's and then finally the mid 104's before the culprit was found. CMV is known for producing protracted fevers and for an exceptional sapping of ones energy. I will say, "Amen" to that.
It is also a virus the test for which takes several days and is quite costly - - hence may not be routinely ordered by many doctors. Especially the test for CMV activity and not merely the test for it's presence (80%). Perhaps you've been tested for CMV when you mentioned fevers to your doc., perhaps this is an old hat virus to you, but thought it best I mention in case it wasn't so that you might ask about it yourself if the situation ever seems to fit. Because it can be nasty, because it's so prevalent, because we're apt to be harboring it within ourselves and because it can of a sudden come to life when we hit that certain point of immunosuppression.
After eight days in the hospital and a conversion from the IV to the oral form of treatment, I am fever-free (major improvement). So the treatment works; trouble is, there's only one known treatment. No alternatives, or so I'm told. Valcyte - -at the rate of $6,000 for the first month and $3,000 per month maintenance thereafter - - for as long as one is suppressing their immune system, ie: as long as one is actively fighting the Wegs. Because CMV can't be cured and can't be eradicated from our bodies; it can just be pushed back under the sand and kept quiet until we get a safely functioning immune system going again - if ever.
Hope I haven't added to the list of things that bring us fear along our Weggie way, but did want to add to this site's reference materials of things we may need to be aware of as we deal with the strangeness and complexity of our symptoms and things we may need to ask our doctors about if they haven't covered the possibility - - cytomegalovirus, for your consideration. Ron