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Valcyte 2013- Week 9

Blog entry posted by RUkiddingME, Mar 11, 2013.

Hello gang:

I am still tolerating the Valcyte itself very well. My labs remain completely normal. Week 5, 6 was more of my usual ;able to get downstairs in my house a few hours a week and a couple of short outings outside the house (quiet meal/medical appointment). I did have a few short dizzy spells and some head tightness episodes.

Week 7- Caught my very first cold in 3.5 years (since onset of illness). Lasted a week, not a really bad cold. (could my immune system finally be kicking in?):)

I have been completely bed ridden since. No trips downstairs. Just laying or sitting in bed, basic hygiene and a daily quick glance at Phoenix Rising in case I miss out on the Miracle Cure news! ;)

I had to go out Thursday and Friday afternoon this week to hear my daughter sing in a festival and that was difficult to manage. Just sitting in the car on the way over did me in. I knew I would suffer payback but it was well worth it. The past two days I was in my "coma" state. Burning eyes, closed all day, trouble sitting up, feeding myself and chewing food, diffuculty ambulating. This morning I'm over the coma stage and back to the crash stage, thank goodness.

I have no idea if this past crash is just one of my regular crashes or the Valcyte doing its thing. I never had painful lymph nodes or pain so for me worsening of my symptoms is one of these crashes when I can barely do anything at all.

I will be having my HHV6, EBV and NK cell tested at the end of the month as my 3 month check since starting the Valcyte.

I have started eating carrots every day. I didn't realize they were so good for NK cell function. I will also be adding hemp seeds. I was very pleased with what I read about hemp seeds and the immune system.

The following link is the conference from Dr. Nancy Klimas (a hero of mine) from January of this year which is worth every second you spend watching it. If you watch the part with Dr. Irma Rey, at the 17.37 minute mark, they show the NK cell supplement diet which I was mostly doing already. I never did come across Dr. Klimas's Valcyte protocol anywhere yet on any forums but would be curious as to her opinion on it.
http://www.nova.edu/nim/past-events.html

Ok now for the funny part. I am going on vacation in three weeks!! Yep call me crazy!!!o_O I booked a family vacation for Easter week 6 months ago. I must have been having a good day and expected to be cured by now lol! I have three weeks to get better!! or like usual I wil l just by laying in a bed "somewhere else" lol

Functioning level: 10%

Labs from November, 2012
Natural Killer Cells: 9 LU
Positive HHV6 - PCR and viral culture
EBV VCA IgG, IFA 1:640
EBV EA 1:160
HHV6 1:320 Same three numbers to fit criteria for Dr. Montoya's study
No Co-Infections
No Pain
No swollen lymph nodes

Labs: NORMAL
Brain MRI: NORMAL

Current Medications:
900 mg Valcyte with breakfast
3 mg Low Dose Naltrexone
5 mg Hydrocortisone
25 mg Trazodone
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RUkiddingME

About the Author

My 2013 Valcyte experience
  1. Ruthie24
    Glad to see Heaps input! Otherwise it sounds very scary that you're suddenly having such a strong reaction. Maybe this is the delayed onset of the symptoms other people get earlier in their Valcyte treatment?

    I'm so glad to see I'm not the only one who does "crazy" things like booking a vacation in the few minutes where they feel a little better and suddenly think, "oh great, I'm on the mend for real this time,...let's go!" LOL Hope you have a jolly time and can enjoy lying around in new scenery if nothing else.
  2. RUkiddingME
    Quick update; same afternoon I wrote this post. Had a three hour nap and woke up barely able to move. My legs are like lead and can barely move my arms. Took my BP and it it's not bad with a pulse of only 66. I haven't felt this incapacitated in at least a year. It's a very scary feeling. Something is definitely going down
  3. heapsreal
    good on you, sounds like valcyte is going to plan like most people. as for holidays your meant to just lie around and enjoy different scenary and hopefully there is some nice places to eat as well. so lying around and eating sounds good. I have had a week off with 1 week to go, havent gone anywhere but lying around and eating.

    good luck.
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