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Valcyte - 8 months, 1 Day

Blog entry posted by ArgyrosfeniX, Sep 14, 2012.

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 time I used it a few years ago...That being said, there still seems to be an upward trend towards increased health for which I've very thankful for.

Came across a patient at work the other day that rather disturbed me. She stated that she had a history of Fibromyalgia (for which I was being very considerate of) and was acting entitled! 0.0!! Like FM is something that you can hold up and state "I have this! Now do what I say and pity me!" Wow...

Was at my Internist today - all my labs looking good. The AST and ALT are still in the good range and I am continuing to take the FolaPro supplement.

Good News! I've lost about 10 pounds since starting the Valcyte in January. Most of that has been in the past few weeks. Realized that there were a few things that I needed to change in regards to eating and it has helped a great deal so far.
  1. Be mindful of your eating: Eating food is not the time to be multitasking. I figured this out while reading a book - From Bagels to Buddha by Julie Hollis. She talked about how the Buddhist retreat she went to required bowing to your dinner prior to each mouthful of food. While I admit that is a bit extreme, I think the lesson of being mindful of your eating has increased my enjoyment of what I do eat and also reduces the quantity.
  2. You will not starve: During some introspection about my eating habits, I realized that every time my stomach starts telling me I'm hungry, I go get something to eat. While that is relatively normal thing to do, my body is giving me that signal more often than it should due to lack of energy (or so it seems to me). Also, I've been afraid of running out of calories to burn while at work, causing a mini crash (which is an awful thing to have happen to an ER nurse). So, to prevent that, I would load up on the food both before and during a shift. Not so much anymore. I am trying to drink more fluids to reduce the amount of food I take in while feeling hungry. Seems to be working. ;-)
All in all, things are progressing well and I'm hoping they continue to do so. I'm looking forward to the 1 year mark as many others have stated that they have gotten significantly better around that time point. Looking forward to it! :D

=== BY THE NUMBERS ===
Weight: 255.2 lbs

Activity Level: 6-8 depending on the day

Current Dosing: 900mg in the morning.

Lab values of note: Liver values continue to normalize!!
  • AST = 29 -> previously 30 (norm 10-40 U/L)
  • ALT = 42 -> previously 48 (norm 9-60 U/L)
  • Glucose = 125 -> previously 69 (norm 65-99 mg/dL)
    • this was likely due to drinking a bottle of soda prior to having my blood drawn...
justy, heapsreal and merylg like this.
ArgyrosfeniX

About the Author

Living with ME/CFS since the age of 16 (1989). Was persistent enough to get three Associates Degrees and get married through it all. Working hard to keep going for as long as I can before becoming bedridden. Current treatment plan is to use Valcyte for 2 years starting January 13th, 2012, then possibly switch to Valtrex for an indefinite period. "Here I am trying to live, or rather, I am trying to teach the death within me how to live." ~ Jean Cocteau
  1. heapsreal
    how are u going on valcyte now, hopefully u are still improving
  2. heapsreal
    any more updated??

    cheers!!!
  3. jimells
    Thanks for posting this. Your story is more ammunition for me to use to screen out doctors that keep insisting there is nothing they can do. How can they keep ignoring evidence to the contrary, even if it's 'anecdotal'?

    Last week I saw an integrative doctor. He claims to be treating CFS patients, didn't say how much success he is having. He told me Western Medicine has nothing to offer. When I asked him about the antivirals and immune modulators, he dismissed them by saying, "they're not covered by insurance for CFS".

    He did offer Chinese herbs, some kind of meditation, and acupuncture. The acupuncture did nothing for me. So far the herbs have done nothing, and I couldn't figure out the meditation thing. I try to keep an open mind, but I don't have much hope that some mix of herbs and acupuncture will do anything for elevated ANA, POTS, etc.

    When I return I'll ask him about helping me with the Simplified Methylation Protocol. If he dismisses that too, I'll probably dismiss him.