Learning a lot I feel at the moment even if it's in the absence of pathology tests I am going off symptoms.
I did a lot on Saturday and Sunday morning felt pretty good, but then I took a higher dose of valtrex and became really tired after that, this tiredness lasted all day. The higher dose was an experiment where I took 1g three times a day to see if it would get some canker sores in my mouth under control. I believe these canker sores could be high CMV titers, because I had cmv come up high on an elisa in 2018 and valtrex doesn't hit cmv very well at all.
After 3 days on valtrex I noticed that my dry mouth and ulcer (the one I normally get) was back and wasn't going away. Then again I also felt tired and sleepy more, which could be lvier or kidney issues, or it could just be the effect of the medication. Blood tests on Thursday should tell the story.
At any rate the ulcer was getting really bad and the valtrex didn't dent it even at higher doses. I have a theory that this is because it doesn't hit CMV it's also possible the tiredness is being caused by cmv. But these drugs take months to work so the fact I went out 3 seperate times on Saturday and did a lot more than usual tells me they do work, it's just that it takes time for you to feel really good every single day.
Today I took 250mg famvir in the morning, it was an experiment to see whether it would impact my ulcer. It did and 3 hours later the ulcer is not only in check but starting to heal. I don't think this is placebo personally.
However the side effects of the famvir are still pretty bad, very dizzy/disorientated and feel a lot less coordinated physically, but not so bad I am worried about liver or kidney function issues.
I intend to get my CMV tested sometime soon, although the costs all this treatment is mounting.
I am still fascinated by how badly I reacted to the indian generic valtrex compared with the european valtrex. Honestly it's been night and day the difference it's made. On valtrex I've had zero side effects, I am certain that the slgihtly dry mouth and sore is a product of a virus, I am pretty sure it's not sjrogens as I don't have any positive auto immune tests nor is any other part of my body dry when I get this issue. Plus I had it before I got ME, when I was 24 I had some issues and I think that was just due to circumstance, but nobody else seemed to suffer like me, so I assume therefore that it's viral or something else that I've got.
I've done a lot of research about famvir and it does hit cmv better than valtrex, but not as well as valcyte. I find it strange that famvir would be so good at getting rid of the canker sore and allowing it to heal, where valtrex just isn't capable.
I'm also glad the side effects are not so bad I can't keep working or focussing at work and I have had zero issues sleeping with valtrex.
I actually feel calm and relaxed on valtrex - with fewer ME symptoms for the first time in years. I haven't felt calm but well in ages.
Two days after I came off the famvir my ME symptoms came STRAIGHT back. I woke up with PEM, fatigue and malaise and my throat was on fire, it was incredibly sore. Within 45 minutes of taking 500mg of GSK valtrex the sore throat was 50% better and a load of other symptoms were improving.
So waiting to see what my blood tests look like now and waiting on some new famvir to arrive that will hopefully have less side effects.
I did a lot on Saturday and Sunday morning felt pretty good, but then I took a higher dose of valtrex and became really tired after that, this tiredness lasted all day. The higher dose was an experiment where I took 1g three times a day to see if it would get some canker sores in my mouth under control. I believe these canker sores could be high CMV titers, because I had cmv come up high on an elisa in 2018 and valtrex doesn't hit cmv very well at all.
After 3 days on valtrex I noticed that my dry mouth and ulcer (the one I normally get) was back and wasn't going away. Then again I also felt tired and sleepy more, which could be lvier or kidney issues, or it could just be the effect of the medication. Blood tests on Thursday should tell the story.
At any rate the ulcer was getting really bad and the valtrex didn't dent it even at higher doses. I have a theory that this is because it doesn't hit CMV it's also possible the tiredness is being caused by cmv. But these drugs take months to work so the fact I went out 3 seperate times on Saturday and did a lot more than usual tells me they do work, it's just that it takes time for you to feel really good every single day.
Today I took 250mg famvir in the morning, it was an experiment to see whether it would impact my ulcer. It did and 3 hours later the ulcer is not only in check but starting to heal. I don't think this is placebo personally.
However the side effects of the famvir are still pretty bad, very dizzy/disorientated and feel a lot less coordinated physically, but not so bad I am worried about liver or kidney function issues.
I intend to get my CMV tested sometime soon, although the costs all this treatment is mounting.
I am still fascinated by how badly I reacted to the indian generic valtrex compared with the european valtrex. Honestly it's been night and day the difference it's made. On valtrex I've had zero side effects, I am certain that the slgihtly dry mouth and sore is a product of a virus, I am pretty sure it's not sjrogens as I don't have any positive auto immune tests nor is any other part of my body dry when I get this issue. Plus I had it before I got ME, when I was 24 I had some issues and I think that was just due to circumstance, but nobody else seemed to suffer like me, so I assume therefore that it's viral or something else that I've got.
I've done a lot of research about famvir and it does hit cmv better than valtrex, but not as well as valcyte. I find it strange that famvir would be so good at getting rid of the canker sore and allowing it to heal, where valtrex just isn't capable.
I'm also glad the side effects are not so bad I can't keep working or focussing at work and I have had zero issues sleeping with valtrex.
I actually feel calm and relaxed on valtrex - with fewer ME symptoms for the first time in years. I haven't felt calm but well in ages.
Two days after I came off the famvir my ME symptoms came STRAIGHT back. I woke up with PEM, fatigue and malaise and my throat was on fire, it was incredibly sore. Within 45 minutes of taking 500mg of GSK valtrex the sore throat was 50% better and a load of other symptoms were improving.
So waiting to see what my blood tests look like now and waiting on some new famvir to arrive that will hopefully have less side effects.
