Significant improvements after Six days on LDV... (Low dose Valcyte 
)
I really debated posting this, both because of the fear of jinxing myself and the fear of people telling me that what I am experiencing is not possible, but I decided to go ahead in case anything that I share could help another PWC down the line. I also want to preface this that nothing I am saying is medical advice and is only my own personal experience based on my extraordinary sensitivity to medications. I am also doing this plan very closely with my doctor and not going rogue LOL. The term "LDV" is made up by me and not a real medical term- but I thought of it when I compared my experience to the concept of LDN.
Initially, the 1/8 pill gave me severe vertigo and we feared it might have triggered anemia so I stopped the Valcyte. But, my safety labs were perfect with no anemia so once the vertigo subsided, I re-started Valcyte at 1/32 pill. Luckily the pills are large and easy to cut and 1/32 of a Valcyte is about the size of 1/4 Atenolol so it is tiny but not too tiny.
In the last six days at this dose I have had the following improvements:
1) More physical energy
2) Increased mental clarity
3) Return of being able to feel thirsty so I am able to drink 8-10 cups fluid per day. Prior to this it was as if the thirst center in my brain was broken and forcing myself to drink was torture.
4) Significant improved noise tolerance- I was able to do paperwork and type on computer while vacuum, music, etc, in background which was impossible before and I required total silence. I was also able to ride in car (as passenger) and appropriately filter and process all the stimuli of moving cars, music, and talking all at the same time! I was so amazed by this that it made me cry b/c I love music and have been unable to listen to music for a very long time.
5) No new bruises on my legs after two straight years of unexplained bruises.
6) But the biggest improvement is to my blood pressure. When I wake up, my BP is in the 80's/50's but about two hours after LDV (low dose Valcyte) it raises to about 104/74 and this has happened for six days in a row! This did not happen with Midodrine or any other meds that I tried and it is measurable on BP machine. I hope with LDV, I will reach a point that my BP is over 100 when I wake up in the morning but am not there yet.
Next week (on day 9) I will be increasing to 1/16 of a pill and then continuing with my very slow taper. I still have intermittent tachycardia, shortness of breath, muscle pain and weakness, etc, and still require the wheelchair when we go out as I can only walk a few feet. But I am hoping as I increase the Vaclyte, that all of these things will improve.
I cannot explain why this is happening but I am very grateful for ANY improvements and to my doctor who is open-minded and understands that I cannot tolerate doses of meds that even another PWC can tolerate. I may be a mutant
in this regard but in case there are other mutants out there, I wanted to share my story. And please, do not do this without your doctor and weekly safety labs.
I know it is too small a dose and too soon to be having any anti-viral effects (and I am still taking Famvir concurrently) so it must be working as an immune mod or anti-inflammatory. I really cannot explain the mechanism of what it is doing and am very afraid it will not last!
