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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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ArgyrosfeniX
- Author ArgyrosfeniX
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- Updated
Hello Everyone,
It's been an interesting time the past few weeks. Items of note are:
There's a spring in my step on occasion - only lasts for a few steps, but is definitely there.
Some of my brain fog is clearing - my ability to process information is a bit faster, even if the memory issues...
Hi Everyone,
Things have improved some, but I can still induce PEM / PENE if I’m not careful. This past Saturday, I exerted myself a bit too much and spent most of Sunday in bed and work in Monday had significant cognitive issues. Energy-wise, I think will be returning tomorrow. Seems my theory...
Hi Everyone,
This weekend was rather interesting. Got a handful of small projects completed and was feeling moderately well. Then Sunday occurred. Spent too much energy in the mid-morning and had a nice PEM/PENE bedrest for the majority of the rest of the day. Bounced back some just before...
Hi All,
Things are improving already. My wife told me 2 nights ago that she could tell the difference. I believe it was the quality of my conversation that was being quantified. Personally, I’m having periods of severe fatigue and periods of incredible “energy” without stamina. I’ll admit that...
😁
Things seem to be improving some. Yesterday and today had a few periods where I didn’t feel too exhausted to do minor / simple chores. Was able to clean out the fridge a bit and my truck some too. Was nice to have something left over after a workday - even if it’s just a titch right now. 😊...
Hi Everyone,
Day 3 ended with a very sudden onset of fatigue and need to sleep. Now... I slept most of the night between days 3 and 4, which is fairly unusual - most of the time, it's 5-6 hours of sleep a night. I fall asleep easily, but can't get back to sleep after waking about 5-6 hours...
Hello Everyone,
Started taking the valganciclovir on the evening of 3/20. Here what I’ve noticed since then:
Day 1: Woke up quickly and noticed that my brain fog was significantly reduced! Sweet! And then it came back again 3 minutes later. Then clear headed. And back yet again. Once up and...
Hi Everyone,
The valganciclovir finally showed up in the mail today. Took the first dose this evening just after dinner. The plan is for two (2) tablets daily, taken with dinner as you’re supposed to take with a fatty meal, and according to my previous blog entries, they make me sleepy (so...
Hello Everyone,
Just an update. I purchased the valganciclovir through my insurance’s mail delivery service and am waiting for the meds to arrive. Hoping they’ll be here tomorrow, so I can start everything on Sunday.
The FolaPro and B-12 are here and ready to go.
Super excited and hoping to...
Hi Everyone,
Just a short update to mention that I received the prescription I was hoping for and went through the least expensive route to obtain the meds - insurance’s mail delivery.
Probably take a day or two for things to arrive in the mail, so I’ll update more when it arrives and I’m...
Hi Everyone,
My appointment for Monday is weighing heavily on my mind these past few days. This doctor is new to me and while my first appointment went well, relatively speaking, I'm not sure what the results of asking for such a script will be. Valcyte's not exactly an everyday type of drug...
Hi Everyone,
In several of my earlier blog posts, I may have mentioned that I became sick in 1989. Turns out, I was a smoldering case prior to that and the "1989" was when I hit puberty and became moderate for the first time.
Research of my medical history and speaking with some of the...
It's been almost exactly 5 years since I last posted about my experiences with taking Valcyte for my ME/CFS. During that time, I've done well, for the most part, and learned a bunch about the necessity of pacing to prevent additional decline.
Despite my best efforts, I'm heading back down the...
It has been quite a while since my last entry. Years and oh so much more...
Update on Valcyte:
I took my last dose on February 11th of 2014 after taking it daily for just over two years. It helped me into a form of remission, but never got me to something resembling "normal" for an adult...
Hello All,
The past few months have had a slow improvement since last I wrote. I've been able to do some mild walking and able to work nearly full time. Had some ups and downs though which worries me that whatever bug I have might be adapting (or has adapted) to the Valcyte due to the first...
Hello Everyone,
Had a follow-up visit with my Internist a few days ago and things continue to go well. I'm slowly gaining more energy (as long as I don't overdo it). I've been working too hard over the past 10 days and thankfully have a few days to rest. Went up to the family cabin for the...
Hello Everyone,
It has been a few weeks and I thought I'd share a bit of what has been happening recently...
The Valcyte has been good enough to get me through shifts at work, which is a miraculous accomplishment in and of itself. However. I can't seem to do anything additional at this time...
Hello Everyone,
Can't believe it has been so long already! :aghhh:
As noted in some of my last blog entries, I was having problems with my employer and trying to hold onto a job that was relatively easy for an ME/CFSer. Everything came crashing down when my boss pushed me too hard and I...
Hello Everyone,
It has been an interesting few weeks for me.
I've been at home resting since February 15th, so it has been almost 1 month that I haven't worked. Been tired and really haven't had any sort of increase in endurance - which has me worried since I no longer have a job with my...
Hello Everyone,
Worked too hard on the job and crashed about 1 week ago. Still home sick, but starting to improve today. Spent too much time resting on the couch and have a horrible back spasm too. Been a wonderful week... :In bed:
Had lab work done on the 15th and noticed that my Liver...