VALCYTE (Valganciclovir 450mg)

Submitted by rcquilter on Fri, 2016-03-11 14:49

Hello everyone,

I would like opinions on the drug Valcyte. Dr. Montoya at Stanford perscribed it for me. Dr Powell, and Dr. Stratton think it is worth trying. I am concerned about the side effects on the central nervous system, so please send me your thoughts on this. Dr. Montoya said it may reduce inflammation in the brain, and it will also help with my Epstein Barr lab test titer which is a little high at 1.09. (IGG should be less than .90)

I couldn't bear restarting the Abx, and I never saw a glimmer of improvement in 3 years.

I am interested in fecal transplants from a healthy donor. I took a lot of Abx during my childhood due to various illnesses. This may likely have had a detrimental effect on my gut bacteria.

http://www.healthline.com/health-news/does-ms-start-with-faulty-gut-bac…

Dr. Montoya said that Stanford is looking into fecal transplant studies, but I shouldn't do it at this time.

Please tell me what you think about about all of this.

Thank you.

Hi Rachel!

I take the view, whatever it takes to do it: do it!

I don’t know anything at all about the drug, Valganciclovir but they are certainly competent people proposing it. It sounds to me like you’re in pretty good hands there.

You mention faecal transplantation. No matter when it is; whatever the time of the day it is; it is always before dinner … until after the last supper.  Now is before dinner yet again but I shall try to forget what I written by then.

You and I both have MS. We have no doubt both wondered how bad things can get. Yes, I have had grim thoughts in the past and still keep my pills in the cupboard. I once joked that I’d rather take the pills than swallow a faecal transplant. A doctor friend of mine explained that it is not taken by that route anyway. Deliberately ingesting intestinal worms to alleviate MS symptoms has been suggested here and elsewhere.  I can be quoted as saying that “I’d rather have MS!”

As we know, MS really is no fun. That same doctor that I just spoke of spoke quite highly of some of the success stories of faecal transplantation. I’d guess that it is considerably less risky than stem cell transplantation and hugely cheaper.

Your doctors don’t recommend that you try faecal transplantation at this juncture. You did this antibiotic drug regime for three years. What percentage of doctors would have recommended that you do that; how many?

Whether by Spiritual Healing, Antibiotics, Stem Cell Therapy, Traditional Chinese Medicine or just plain Act of God … however you get yourself well, you get yourself well Hun. Trust your gut and do whatever it takes. And however you get yourself well, don’t keep it a secret: come back here and tell us.

Whatever you do, I wish you good luck. However you get to the finish line, I’ll meet you there.

 

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

This is also used for HIV - which raises a very interesting question:

https://en.wikipedia.org/wiki/Valganciclovir

See the text for it's test on Chronis Fatique Syndrome.

Also - http://www.medpagetoday.com/Neurology/MultipleSclerosis/44861 - another anti-viral or retro-viral drug. 

AND:

https://www.mssociety.org.uk/ms-support/community-blog/2015/10/headlines-and-hiv-drugs

I think there was a post (thought I did one) - on this subject.

The interesting question it raises - is - could this drug have been the one the young lady featured in the second article responded to?  It's anecdotal in that there is only one person known (so far) to have responded so dramatically.  Merck reportedly is sponsoring a trial of one of a class of drugs that are anti-retroviral - for MS:

https://clinicaltrials.gov/ct2/show/NCT01767701

They may have chosen that drug to sponsor without really knowing which of likely several drugs the young lady responded to.  Her recovery was nearly miraculous - though it faded away after going off the drug.  We are anxiously awaiting results of the trial in question. 

I share similar feelings and thoughts as Mr. Supaguy. 

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAP in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

 Thank you Tom for this . it is very interesting !

 

MMHHPP

RRMS since 2010. Asthma sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxy 200mg, Azytrom 3x week, NAC 1200g day and vitamins-  January 2013 started Flagyl pulses. i s

Hi Rachel!  I don't really know anything about valcyte except that it is an antiviral drug so it might therefore reduce inflammation in your brain or you might find no difference, but I suppose that if these various infectious disease doctors say it is worth a try, it might be.  Also, many people feel when they finish CAP that they are lacking in the immunomodulation they get with doxycycline.  Many people who suffer from chronc acne take doxycycline at 100mg a day for many years as do Luane Metz's MS patients.  Maybe you could do this?

Your Stanford neurologist was also willing to prescribe 300mg a day of biotin for you.  Are you going to take him up on this?  The people on the French trial only started noticing changes at this level and then some people had to take the stuff for at least six months before they started noticing a difference, so patience is in order!

Borodi in Sydney, Australia has had some very good results with faecal transplants, so if they become available at Stanford that might also be a good idea.  Keep on with the biotin for now though: even consider takng it up to 600mg a day........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thank you for your coments Sara. 

I stopped the Cap because it was kicking my bum after 3 1/2 years of being on it. I also am nervous about how far down I might go if I stayed on the Cap.

I'm going to start the Valcyte and stay with the biotin. I got some pure biotin powder, and will take measured 100mg doses 3X a day. I might consider increasing the dose. 

I know you wish me luck.