Acyclovir, Jose Montoya & recent trials?

[Seanko]

in various interviews & talks Dr Jose Montoya of Stanford has mentioned successful use of the anti-viral Acyclovir in ME/CFS patients.The drug is cheap & generic as its available over the counter as Zovirax as is used to treat shingles and cold sores.

Have there been any recent trials to look into the matter recently? In the 1980s there was a month long trial which proved inconclusive & Montoya said there would need to be a longer term study.

Any thoughts?

ME/CFS Alerts: Debra Waroff taks to Dr Jose Montoya (ME?CFS Alerts on YouTube)
Jose Montoya at the UK CMRC Conference October 2015

 

[Cort]

in various interviews & talks Dr Jose Montoya of Stanford has mentioned successful use of the anti-viral Acyclovir in ME/CFS patients.The drug is cheap & generic as its available over the counter as Zovirax as is used to treat shingles and cold sores.

Have there been any recent trials to look into the matter recently? In the 1980s there was a month long trial which proved inconclusive & Montoya said there would need to be a longer term study.

Any thoughts?

ME/CFS Alerts: Debra Waroff taks to Dr Jose Montoya (ME?CFS Alerts on YouTube)
Jose Montoya at the UK CMRC Conference October 2015

Nothing... a grant was recently funded for Marshall to look into EBV more but I don't know of any studies unfortunately.

.I don't think many doctors who use antivirals for ME/CFS use acyclovir actually. I don't know why that is. I hear more about valtrex, valcyte or famvir. Montoya saw more progress as the patients continued to take the drug which suggested that a longer trial would have been better.

 

[Seanko]

Thanks for the thoughts Cort. As you say a longer term trial might be worth doing on a 6 month plus basis like Rituximab. Herpes patients use Acyclovir on a long term basis to suppress the virus too.

As Montoya has mentioned the possibility of Acyclovir several times in public he believes it could have an effect. Senior researchers & clinicians do not just say anything in the public arena without thinking the matter over.

A possible analogy could be the way AIDS patients are treated with a combination of therapies including anti-virals.

 

[Strike me lucky]

Acyclovir compared to valtrex, from memory acyclovir only about 10 to 20% of dose is active, where valtrex raises acyclovir blood levels to 50 to 60% of the dosage.
so both are essentially the same drug but valtrex is more bioavailable and increases blood levels higher.
after saying all of that, there are some who prefer acyclovir over valtrex??

 

[Seanko]

@Strike me lucky & @Cort
Do any of the better known ME/CFS clinicians use Acyclovir, Valtex or other anti-virals in their practices? (Eg Lucinda Bateman or Nancy Klimas)

 

[Strike me lucky]

@Seanko
from what i have read that cfs drs are doing and patients experiences it seem valtrex mostly used for ebv only infections and occassionally acyclovir. Famvir although not as strong as valcyte and much less toxic, seems to also help with other viruses like cmv and hhv6 as many have felt better and also seen titres change etc. Its used for those being cautious and those who cant afford valcyte.

personally think if one has more than ebv ie cmv and or hhv6, probably going to need valcyte and when off valcyte go on famvir for maintenence therapy. It seems to slow these viruses down for certain periods of time before needing valcyte again. Without famvir relapses would be sooner??
Thats my experience with cmv and vzv/ varicella virus .

 

[Seanko]

@Strike me lucky
Thanks for the detail, I don't have your background knowledge.
In ME/CFS is the patient's body responding to residual traces of the initial viral attack eg antibodies & would an appropriate anti-viral change anything?

 

[HMBCheryl]

I am treated at Montoya's clinic. I recently switched from Famvir to Acyclovir. The PA who prescribed it said that Acyclovir has had the longest research study of all the antivirals, but I did not verify that. FYI in a letter to my insurance company, Stanford said that their working hypothesis is that CFS is a chronic encephalitis, a subset of which is associated with infection including viral agents.
I was on Valtrex for six months, then Famvir for two. When my prescription insurance changed in January, the new carrier only offered Acyclovir on the plan. Because I spent all of last year fighting with insurance companies, I resolved not to waste my energy in that way this year. I have not noticed a benefit from any antiviral treatment. But I take them because there doesn't seem to be any side effects, and I think the potential benefit is worthwhile.

 

[Seanko]

@HMBCheryl Thanks for your reply.
Do you know if Stanford are doing any formal anti-viral trials with any blind testing with some patients on a placebo?

 

[HMBCheryl]

Not now. The only trial they are doing is a Microbiome study. I am participating. I will ask when I go in Wednesday if there is anything else coming up research wise.

 

[Seanko]

@HMBCheryl Thanks. Good to hear you are part of the microbiome study. Is it linked in to the Columbia one?

Guessing you live in Bay area. Have you or any friends had any contact with Bruce Campbell's CFIDS self help group? I've used the resources & am impressed.

 

[HMBCheryl]

@HMBCheryl Thanks. Good to hear you are part of the microbiome study. Is it linked in to the Columbia one?

Guessing you live in Bay area. Have you or any friends had any contact with Bruce Campbell's CFIDS self help group? I've used the resources & am impressed.

@HMBCheryl Thanks. Good to hear you are part of the microbiome study. Is it linked in to the Columbia one?

Guessing you live in Bay area. Have you or any friends had any contact with Bruce Campbell's CFIDS self help group? I've used the resources & am impressed.

It's a multi site study. I'll have more details after my appointment Wednesday.
Yes, I am active in Bruce's Living Your Plan and Alumni groups. The only way I got through this past year (my first year of disability from CFS) was through the support of the groups, and Cort's brilliant work here.
Incidentally, my story was recently posted on the SolveME/CFS Humans of CFS page. Another great resource.
Wish there was a live support group, but nothing in the Bay Area.

 

[Seanko]

@HMBCheryl You're right at the heart of global ME/CFS efforts in SF
You could post ask Stanford if they could circulate a message if anybody fanices meeting for a coffee in the Bay area or post on the various forums you're part of.