• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

I need to find a doctor that prescribes antivirals

Messages
11
Hi,

I have ME/CFS for about 5 years. Some of my symptoms actually started about 10 years ago (nasal congestion, rosacea, dry eyes...). I spent years searching for the right diagnosis without luck. Then finally, about 2 years ago I found a doctor that understands CFS. He did a lot of test for various bacteria and viruses and found the I have really high IgG antibodies against EBV and CMV. However, when I asked him about the antivirals he told me those treatments are experimental and dangerous and that he wouldn't prescribe them.

He prescribed some anti-oxidants instead, which did nothing. Then, about 1.5 years ago I went to a CFS specialist who did many tests and found some problems in my gut (very high Zonulin and he also found that I have SIBO) and told me I have IBD and prescribed me many months of mesalazine/rifaximin. I took his therapy for 18 months, but overall I feel worse, not better. When I do the IgG EBV, CMV tests again the antibodies are still very high. But my doctor wouldn't prescribe them.

So, I need to find a doctor that is willing to prescribe antivirals (valcyte/valtrex of whatever). Distance is not an issue, although I live in Europe. I am willing to travel to the US to get the right treatment. I know Dr. Montoya does studies on antivirals, but I would prefer someone that is less busy and in the US I would prefer someone on the east coast, because it's closer and I have some friends there. But, anyway I'm open for any suggestions, I just don't want to have to wait to long. I have had enough of this disease
 

Wishful

Senior Member
Messages
5,635
Location
Alberta
There might be some cases of ME/CFS that are kept active by chronic viral infections, but my understanding is that in most (?) cases a viral infection is just the trigger, which sets positive feedback in place. Removing a finger from a gun trigger after it's pulled doesn't make the bullet wound go away.

Some people do claim that antivirals have helped them, although it seems to take years before it helps. Maybe it would help you; maybe not. Just don't assume that antivirals are a guaranteed quick cure for ME/CFS. So far there is no treatment for ME/CFS, except for anecdotal claims. Researchers are working on it though. I'm hoping that once they find out what is keeping us in this abnormal state, there will be existing approved drugs that will help. I don't think I'll live longer than the typical approvals process for new drugs. :(

ME/CFS since 2001, and I too have had enough of this disease. I'm not bothering to try antivirals though, since I have about 0% expectation that they'd work for me.

I did find a PEM blocker (after 16 years of PEM) that is very effective for me, which greatly improves my life, so there's always hope of improvement. You might find something that helps your ME/CFS.
 

outdamnspot

Senior Member
Messages
924
I did find a PEM blocker (after 16 years of PEM) that is very effective for me, which greatly improves my life, so there's always hope of improvement. You might find something that helps your ME/CFS.

What is the blocker you've found?
 

Judee

Psalm 46:1-3
Messages
4,394
Location
Great Lakes
I can't get the antivirals either but from what I have been reading they are less effective for someone who has had this for a long time. I'm going on 39 years now with this disease. I've read that some people have had help with Equilbrant/Oxymatrine though. You can research it here and on healthrising.org. They say around week 3, users will experience fevers and feel worse but that you have to try and keep going with it or it won't be effective if you stop and start over again. I think Dr. Chia recommends starting on a very low dose to try to mitigate some of that.
 
Last edited:

tyson oberle

Senior Member
Messages
209
Location
tampa, florida
Hi,

I have ME/CFS for about 5 years. Some of my symptoms actually started about 10 years ago (nasal congestion, rosacea, dry eyes...). I spent years searching for the right diagnosis without luck. Then finally, about 2 years ago I found a doctor that understands CFS. He did a lot of test for various bacteria and viruses and found the I have really high IgG antibodies against EBV and CMV. However, when I asked him about the antivirals he told me those treatments are experimental and dangerous and that he wouldn't prescribe them.

He prescribed some anti-oxidants instead, which did nothing. Then, about 1.5 years ago I went to a CFS specialist who did many tests and found some problems in my gut (very high Zonulin and he also found that I have SIBO) and told me I have IBD and prescribed me many months of mesalazine/rifaximin. I took his therapy for 18 months, but overall I feel worse, not better. When I do the IgG EBV, CMV tests again the antibodies are still very high. But my doctor wouldn't prescribe them.

So, I need to find a doctor that is willing to prescribe antivirals (valcyte/valtrex of whatever). Distance is not an issue, although I live in Europe. I am willing to travel to the US to get the right treatment. I know Dr. Montoya does studies on antivirals, but I would prefer someone that is less busy and in the US I would prefer someone on the east coast, because it's closer and I have some friends there. But, anyway I'm open for any suggestions, I just don't want to have to wait to long. I have had enough of this disease
Dr Nancy Klimas and her team in Miami will prescribe antivirals but, as @Wishful said, they may not help. As @outdamnspot asked, I too would like to know what PEM blocker you found to be effective @Wishful
 

Wishful

Senior Member
Messages
5,635
Location
Alberta
The blocker that works for me is cumin, regular, not black. See the thread:

http://forums.phoenixrising.me/index.php?threads/possible-pem-blocker.56232/ if you want the full story.


I use a level tsp of ground cumin (no-name stuff from grocery store). That blocks PEM 100% for about three days. Less than that amount may not work fully. Taking more last a bit longer, but doesn't seem to have other benefits, and it's a minimal increase in time for a much higher dosage. Cooking doesn't seem to damage the cuminaldehyde, so you can put it in meals if you like. I stick it under my tongue for a few minutes, to maximize delivery into my brain, but I'm not sure that makes much difference. Perilla (which also has cuminaldehyde) might work as well, if you can't stand the taste of cumin.

If you try it, please post a report on whether it works for you or not, in that PEM Blocker thread. I've described my observations to solvecfs.org, but it might help get more attention if it works for a lot of people.

I have no theory for why it works. I just noticed that the severe PEM I expected one day didn't show up, and found that it was due to the cumin I'd had the day before. I expected it to stop working after a few weeks, as other drugs or supplements did for ME symptoms, but it just keeps on working. Really quite amazing.
 

Wishful

Senior Member
Messages
5,635
Location
Alberta
I forgot to mention: cumin (at least for me) also will reduce existing PEM symptoms. It takes about two hours before I notice a significant reduction in severity, and seems to take full effect after a couple hours more. I did that as an experiment. I prefer to take it before PEM shows up. ;)

Also, it doesn't seem to work on the symptoms induced by mental exertion (driving, socializing, etc), which seems to be different from PEM induced by physical exertion. Works great on physical exertion PEM. Yesterday I snowshoed for three hours, up and down steep hills, and no PEM today.