Valcyte 2013- Week One

Hello gang;

I have been on Valcyte for a week and so far so good. I have had no side-effects whatsoever from the medication so far. I did go for my first weekly blood work yesterday and just got a call from my doctor's office asking if I was having abdominal pains because my Lipase level is high. My GP had checked off a lot of tests and I'm pretty sure I've never had this test done before so maybe it's not related to the Valcyte. Like usual I am resting a lot and being on disability will allow me to not over do it during this treatment.

My current functioning level: 10-15 %

Daily Valcyte Dosage for three weeks(Montoya Protocol)
900 mg with breakfast
900 mg with supper

My viral numbers:

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: High Lipase Level

Current Medications:

3 mg Low Dose Naltrexone
5 mg Hydrocortisone
37.5 mg Trazodone
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good luck! today is the one month anniversary of my ending valcyte (i also took famvir at the same time).

no one prepared me for how good i would feel being on the meds. i never had any crazy side effects. in fact, i improved with every month of being on it. since stopping, i've declined.

just thought i'd offer you my experience.

Thanks for sharing that Ariyele! Were you on the high dose for 3 weeks and then half for the rest? were your labs ok throughout? It's so nice to hear success stories!! Will you be going back on it to maintain your level of function? Thanks again :)
yes, and yes. i was on the high dose for the first three weeks (as i mentioned above, alongside the famvir--also at a high dose) and my labs were more or less ok throughout. nothing that alarmed anyone (even when it was a bit off in the beginning). however, by the end, everything was in range.

as per a meeting with the Dr. yesterday to discuss my options, i may go back on the medication or wait for some new experimental drugs through a clinical trial. i'm sitting with all of it.

hope this helps you and again, i like to share the positive!
It's good to hear about folks who are receiving a real treatment instead of a pat on the head. Good luck. I'll be looking forward to reading your reports.

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