Ist attempt at antivirals — few questions!

[Hoosierfans]

Hey all — first time posting! I’ve been ill since 2006 (started as a mono infection) and believe it or not, in the 13 years of treating no doc has ever put me on antivirals.....until now!

My CIRS doc is a bit new at the idea of chronic or reactivating EBV infections so at first, when he saw super high IGG levels and even early antigen levels, he dismissed it. Now, a year later and after spending $40,000 remediating our house for mold and doing mold treatment, w no improvement, he says we should look at EBV (duh!)

He’s starting me on mast cell stabilizers and acyclovir.

my question — how long do you give acyclovir a try to know if it’s working?

And do people often have to try multiple antivirals? Or is it the case if you don’t respond to acyclovir, for example, there’s no reason to try Valtrex, Valcyte or the others?
I’m planning on looking up Dr Lerner and Dr Montoya’s protocols — anyone have a link for those? That way I can give him the latest research / treatment protocols.
Thanks so much!!!!

 

[Markus83]

First you need to use Valaciclovir (Valtrex) instead of Aciclovir (which is poorly bioavailable). Then you need high dosage at 4000 mg/d. I think Lerner said that you need at least 6 months to see improvement.

 

[Rufous McKinney]

Hey all — first time posting! I’ve been ill since 2006 (started as a mono infection) and believe it or not, in the 13 years of treating no doc has ever put me on antivirals.....until now!

I believe it...my doctor knows antivirals exist, thinks I should have them but i guess cannot prescribe them. Or won't.

I make immunologist appointment to discuss antivirals and the doctor cancels- can't help me.

Good luck and I hope you improve...real soon!

 

[JES]

If I remember correctly, acyclovir is something like five times less bioavailable than valacyclovir. It would practically be impossible to administer acyclovir in the ME/CFS protocol dosages like Lerner's, you would need to take an unsafe amount of daily acyclovir. That isn't to say antivirals cannot work at lesser dosage, some people have reported success with 2000 mg of valacyclovir, but this would still be ~10000 mg of acyclovir per day.

 

[Hoosierfans]

I believe it...my doctor knows antivirals exist, thinks I should have them but i guess cannot prescribe them. Or won't.

I make immunologist appointment to discuss antivirals and the doctor cancels- can't help me.

Good luck and I hope you improve...real soon!

ugh that’s so frustrating! I hope you are well...or get there soon!

 

[Hoosierfans]

If I remember correctly, acyclovir is something like five times less bioavailable than valacyclovir. It would practically be impossible to administer acyclovir in the ME/CFS protocol dosages like Lerner's, you would need to take an unsafe amount of daily acyclovir. That isn't to say antivirals cannot work at lesser dosage, some people have reported success with 2000 mg of valacyclovir, but this would still be ~10000 mg of acyclovir per day.

JES,

Thank you so much. I think for now he’s comfortable w acyclovir....might it be the right approach to try it for a few weeks and then if no response ask him to switch me to Valacyclovir per Lerner? He mentioned to me when he prescribed it that he’s had several patients respond to acyclovir.

 

[Wally]

@Hoosierfans

I’m planning on looking up Dr Lerner and Dr Montoya’s protocols — anyone have a link for those? That way I can give him the latest research / treatment protocols.

http://www.cfstreatmentguide.com/blog/dr-martin-lerners-treatment-protocol-for-mecfs
It was a great loss to the ME/CFS community when Dr. Lerner passed away in 2015, but his work in this area might still be helpful to your doctor to read over. Then it would probably be beneficial for your doctor to talk to one of the doctors who is still practicing and who have treated a significant number of ME/CFS patients with anti-virals. Here is some research that Dr. Montoya and Dr. Kogelnik conducted about CFS, EBV and antivirals. They are both infectious disease specialists who specialize in treating ME/CFS patients.. See, https://www.ncbi.nlm.nih.gov/pubmed/23959519.

Dr. Montoya left his position at Stanford last year and I don’t know if anyone on this Forum or at Stanford would have current contact info. for him. Dr. Kogelnik is still practicing in Mt. View, Ca. and he can be reached through the Open Medicine Clinic/Institute - https://www.openmedicineinstitute.org/the-clinic.html
Other doctors who would probably be good contacts for your doctor would be Dr. Chia in Torrance, CA, Dr. Peterson in Incline Village, Nevada, Dr. Bateman in Salt Lake City, Utah, and Dr. Klimas in Miami, Florida. A number of other doctors could be added to this list, but this group has been dealing with this illness and antivirals for a long time and it gives you a few names to pass on to your doctor.

It can really help for your physician to get some pointers and warnings about using these anti-virals in large doses, using brand vs. generic, bio-availability and dose timing, side effects and their unique experience in treating patients who appear to fall within a diagnosis of ME/CFS.

Hope this information is helpful. I had great, but temporary success using Famciclivor. It was just frustrating that side effects prevented me from being able to continue with the drug beyond more than about 8 months. But it was such a sweet ride for those months I felt like I got a huge portion of my life back. Will probably try again playing with lower doses, but right now I am dealing with other health issues that arose unrelated to this illness.

Good luck!

 

[JES]

JES,

Thank you so much. I think for now he’s comfortable w acyclovir....might it be the right approach to try it for a few weeks and then if no response ask him to switch me to Valacyclovir per Lerner? He mentioned to me when he prescribed it that he’s had several patients respond to acyclovir.

Still puzzling to me that he is using acyclovir when valacyclovir is more or less the same drug as acyclovir, only practical difference is that valacyclovir is more bioavailable. It doesn't hurt to try acyclovir IMO, but generally speaking, you need several months of treatment with high doses to start benefiting from the antiviral effect.

I suspect the acyclovir dosage you'll get prescribed won't do much in terms of antiviral effects, but on the other hand, a low dosage should at least not have much side effects. Sometimes these antivirals can regardless have other effects, for example I quickly got worse from acyclovir, probably due to some secondary effect.

 

[Hoosierfans]

@Hoosierfans



http://www.cfstreatmentguide.com/blog/dr-martin-lerners-treatment-protocol-for-mecfs
It was a great loss to the ME/CFS community when Dr. Lerner passed away in 2015, but his work in this area might still be helpful to your doctor to read over. Then it would probably be beneficial for your doctor to talk to one of the doctors who is still practicing and who have treated a significant number of ME/CFS patients with anti-virals. Here is some research that Dr. Montoya and Dr. Kogelnik conducted about CFS, EBV and antivirals. They are both infectious disease specialists who specialize in treating ME/CFS patients.. See, https://www.ncbi.nlm.nih.gov/pubmed/23959519.

Dr. Montoya left his position at Stanford last year and I don’t know if anyone on this Forum or at Stanford would have current contact info. for him. Dr. Kogelnik is still practicing in Mt. View, Ca. and he can be reached through the Open Medicine Clinic/Institute - https://www.openmedicineinstitute.org/the-clinic.html
Other doctors who would probably be good contacts for your doctor would be Dr. Chia in Torrance, CA, Dr. Peterson in Incline Village, Nevada, Dr. Bateman in Salt Lake City, Utah, and Dr. Klimas in Miami, Florida. A number of other doctors could be added to this list, but this group has been dealing with this illness and antivirals for a long time and it gives you a few names to pass on to your doctor.

It can really help for your physician to get some pointers and warnings about using these anti-virals in large doses, using brand vs. generic, bio-availability and dose timing, side effects and their unique experience in treating patients who appear to fall within a diagnosis of ME/CFS.

Hope this information is helpful. I had great, but temporary success using Famciclivor. It was just frustrating that side effects prevented me from being able to continue with the drug beyond more than about 8 months. But it was such a sweet ride for the months I felt like I got a huge portion of my life back. Will probably try again playing with lower doses, but right now I am dealing with other health issues that arose unrelated to this illness.

Good luck!

Wally thank you SO much!

 

[Hoosierfans]

Wally thank you SO much!

@Wally I’m curious — do any of these docs do remote consults with local docs? My doc is more in the CIRS / Lyme world and he, for example, consults with Neil Nathan regularly. I’m wondering if any of these docs, for a fee of course, would be willing to chat w/ my doc. Do you know if they do that?

Thanks!

 

[Wally]

@Hoosierfans - Sorry I don’t know what their current policies are re doing consults with other doctors.
I would suggest calling the doctors’ offices to try to talk to someone in the office who knows how the doctor handles general doctor inquiries and/or specific consults.. This info. may or may not be available from the person who is answering phone calls at the office, so you may need to pursue your question through an e-mail inquiry..

P.S. The reason I suggested those particular doctors to investigate whether they would consult with your doctor is because of their experience in treating ME/CFS patients and because they are directly involved in ME/CFS research. .