Sorry I am way overdue for an update. Late in the Fall 2013, I noticed a deterioration and was not doing as well as I was during the summer. I slowly kept getting worse to the point where I was bedridden most of January and February. I couldn’t understand as I have never heard of someone relapsing while still on Valcyte (seems to happen after the treatment is stopped) Turns out that chronic low exposure to carbon monoxide was the culprit. Since replacing the furnace I am slowly coming back to the land of the living.
I had my viral testing done in November/13 and all my numbers went up and NK cells went down. The opposite of what I hoped with happen. My doctor said not to worry too much about the numbers as it probably means that the medication is still doing its thing. Still worried about the numbers I asked to have Famvir added to the Valcyte. I have been taking 3 grams a day for two months on top of the 900 mg of Valcyte daily.
When I spoke to my doctor in January he said that I should have improved much more than I did and able to go for walks etc. I think the carbon monoxide really caused a setback. (There is a possibility that the leak was a problem for the past two winters, which last 6 months here!)
I have one more week left on Valcyte to complete my 15 month regimen. I originally was only supposed to be on Valcyte for 6 months, but I kept asking my doctor to extend it. I have tolerated the drug extremely well. My monthly blood work has always stayed in the safe zone.
My doctor also said to expect a setback for a couple of weeks after coming off the Valcyte as my body tries to fend for itself. Honestly, I am terrified to stop it but I have also heard that some people continue to improve once off it.
Before the Valcyte I had absolutely no life (read my intro). Now besides my setback this winter, I can get up everyday, get dressed and get downstairs in my house. I can leave the house about once or twice a week. On a real good day I can drive a short distance. I can make my own breakfast and lunch and my husband makes dinner. I sometimes have enough energy to wash up the dishes. My doctor advised me to walk as much and as often as possible but that seems to still be the biggest problem. On a really good day I can walk 200 steps in a row just once and I can do that maybe once or twice a week. During the carbon monoxide episode which got really bad in January and February I could barely walk a few steps to get to the washroom having to hold on to the bed. Note: CO alarms don’t go off for low levels. I am the one who figured things out and demanded that a carboxyhemoglobin test be done and the high levels were detected in my blood.
I am able to read and listen to music again. I still can’t do most of my previous hobbies but have found that “painting by numbers” doesn’t use much energy and I am enjoying that very much. The singing, guitar playing, crocheting, sewing, etc will have to wait for now
I still religiously nap every single afternoon from 2-5 pm. On a good day I can be out of bed up to five hours at a time then I have to hit the sack and out of bed another 5 hours until bedtime.
I just enjoyed a trip to Mexico. I had to use the wheelchair the whole week but was up and outside laying by the pool everyday. Very different than our previous “active” travels before the onset of my illness that’s for sure! LOL
I have absolutely no regrets about going on Valcyte and I was very lucky to not have any problems on it.
If I can answer any questions please do not hesitate to ask!
P.S I will continue to post my post Valcyte experience
Nov/2012 Apri/ 2013 August/13 Nov/2013
NK cells 9 11 22 10
HHV6 IgG 1:320 1:320 1:640
EBV Early Antigen 1:160 1:160 1:640
EBV EBNA >5 4.68 4.29
EBV VCA igG >5.00 3.51 4.04
Valcyte 900 mg daily
Famvir 3 grams daily
Trazodone 25 mg (for sleep)
Low dose Naltrexone 3 mg nightly
Omega 3
CoQ10
Acetyl L Carnitine
Multi Vitamin
Vitamin D
I had my viral testing done in November/13 and all my numbers went up and NK cells went down. The opposite of what I hoped with happen. My doctor said not to worry too much about the numbers as it probably means that the medication is still doing its thing. Still worried about the numbers I asked to have Famvir added to the Valcyte. I have been taking 3 grams a day for two months on top of the 900 mg of Valcyte daily.
When I spoke to my doctor in January he said that I should have improved much more than I did and able to go for walks etc. I think the carbon monoxide really caused a setback. (There is a possibility that the leak was a problem for the past two winters, which last 6 months here!)
I have one more week left on Valcyte to complete my 15 month regimen. I originally was only supposed to be on Valcyte for 6 months, but I kept asking my doctor to extend it. I have tolerated the drug extremely well. My monthly blood work has always stayed in the safe zone.
My doctor also said to expect a setback for a couple of weeks after coming off the Valcyte as my body tries to fend for itself. Honestly, I am terrified to stop it but I have also heard that some people continue to improve once off it.
Before the Valcyte I had absolutely no life (read my intro). Now besides my setback this winter, I can get up everyday, get dressed and get downstairs in my house. I can leave the house about once or twice a week. On a real good day I can drive a short distance. I can make my own breakfast and lunch and my husband makes dinner. I sometimes have enough energy to wash up the dishes. My doctor advised me to walk as much and as often as possible but that seems to still be the biggest problem. On a really good day I can walk 200 steps in a row just once and I can do that maybe once or twice a week. During the carbon monoxide episode which got really bad in January and February I could barely walk a few steps to get to the washroom having to hold on to the bed. Note: CO alarms don’t go off for low levels. I am the one who figured things out and demanded that a carboxyhemoglobin test be done and the high levels were detected in my blood.
I am able to read and listen to music again. I still can’t do most of my previous hobbies but have found that “painting by numbers” doesn’t use much energy and I am enjoying that very much. The singing, guitar playing, crocheting, sewing, etc will have to wait for now
I still religiously nap every single afternoon from 2-5 pm. On a good day I can be out of bed up to five hours at a time then I have to hit the sack and out of bed another 5 hours until bedtime.I just enjoyed a trip to Mexico. I had to use the wheelchair the whole week but was up and outside laying by the pool everyday. Very different than our previous “active” travels before the onset of my illness that’s for sure! LOL
I have absolutely no regrets about going on Valcyte and I was very lucky to not have any problems on it.
If I can answer any questions please do not hesitate to ask!
P.S I will continue to post my post Valcyte experience
Nov/2012 Apri/ 2013 August/13 Nov/2013
NK cells 9 11 22 10
HHV6 IgG 1:320 1:320 1:640
EBV Early Antigen 1:160 1:160 1:640
EBV EBNA >5 4.68 4.29
EBV VCA igG >5.00 3.51 4.04
Valcyte 900 mg daily
Famvir 3 grams daily
Trazodone 25 mg (for sleep)
Low dose Naltrexone 3 mg nightly
Omega 3
CoQ10
Acetyl L Carnitine
Multi Vitamin
Vitamin D
