Are you taking antivirals?

[wabi-sabi]

@Dubitat

This is so fascinating! Thanks for posting the experience.

I am heartened to hear that you are getting care from someone who knows CFS since that's so hard to find. I am also intrigued to hear about treatments that don't include antivirals, since my intuition is that my CFS while triggered by a virus initially, now has absolutely nothing to do with a virus. I'm strongly in the autoimmune camp- we'll see if I'm right when we get some more research!

 

[Martin aka paused||M.E.]

I had a long conversation about antivirals with a doctor who has CFS and also treats CFS patients. He was not enthusiastic about antivirals. He said he hadn't seen good results with them with the exception of a small number of patients who likely had comorbid viral infections.

He was well-versed in the scientific literature on the topic, but he didn't appear to think that antivirals held much promise. He discouraged me from trying them and recommends against them.

However, he did say that if I insisted on a trial of antivirals that it was important to get the dosing right. He didn't think the commonly prescribed doses for HSV and other conditions were sufficient for treating CFS-type infections, if they existed at all. He had specific criteria for minimum dosing and duration that he used in his patients.

And what criteria are those?

 

[Dubitat]

And what criteria are those?

We didn't discuss exact dosages. Depends on the drug being used, obviously. He talked about doing the math on relative brain penetration and ensuring that dosing frequency maintained sufficient blood levels.

He also discouraged overuse of blood tests for viruses unless patients were showing typical symptoms of infection beyond the usual CFS symptoms. Some of the CFS practitioners have been bending the rules about interpreting viral test results to support their personal theories about CFS, such as trying to infer active infections from IGG levels or reading too much into normal variation in test results. It's also natural to get variations of titers over time and some of the test results can even vary depending on the skill of the lab technician. If you repeat the viral tests enough times, eventually the randomness and noise can cause misleading false positives. If you continue repeating the tests while undergoing treatments, normal variations in titers plus uncertainty in test results can give a false impression of progress.

That said, he did say that every once in a while he finds a patient who benefits from antivirals on some level. Not as a curative measure, but perhaps as a way to push back some opportunistic co-infections. Or maybe the antivirals have some secondary effects that happen to be partially beneficial to CFS symptoms.

 

[wabi-sabi]

He also discouraged overuse of blood tests for viruses unless patients were showing typical symptoms of infection beyond the usual CFS symptoms. Some of the CFS practitioners have been bending the rules about interpreting viral test results to support their personal theories about CFS, such as trying to infer active infections from IGG levels or reading too much into normal variation in test results. It's also natural to get variations of titers over time and some of the test results can even vary depending on the skill of the lab technician. If you repeat the viral tests enough times, eventually the randomness and noise can cause misleading false positives. If you continue repeating the tests while undergoing treatments, normal variations in titers plus uncertainty in test results can give a false impression of progress.

You have lucked into the most fantastic doc! Sounds like he understands both CFS, viruses, and stats!

We all should be so lucky.

 

[Pyrrhus]

Depends on the drug being used, obviously. He talked about doing the math on relative brain penetration and ensuring that dosing frequency maintained sufficient blood levels.

Making sure the antiviral drug can enter the brain and making sure the drug levels in the blood/CSF are sufficiently high to suppress the virus are both very important considerations for any antiviral treatment.

There are now many drugs and drug combinations to treat HIV. In order to help doctors decide which drug combinations are best at suppressing the virus, government guidelines have been produced, based on many epidemiological investigations, that recommend specific drug combinations to doctors treating patients. These guidelines have been used in the treatment decisions affecting hundreds of thousands of patients.

The problem is that the many epidemiological investigations that informed the government guidelines only considered drug levels in the blood, with no consideration given to drug levels in the brain. As a result, there has been increasing awareness of HIV-Associated Neurocognitive Disorder (HAND) in recent years. Some people note that HAND occurs in patients with undetectable levels of HIV in the blood, and erroneously conclude that HAND must be an inevitable consequence of HIV infection.

The reality is that if you take into consideration the ability of drugs to penetrate the brain, you can come up with new guidelines that suggest drug combinations that can suppress the virus in the brain as well as in the blood. But, as far as I know, no one is pushing for this to happen.

In the case of anti-herpesvirus drugs, there are sometimes those in the ME community who advocate for "low-dose" treatment strategies, where the level of drug in the blood is insufficient to suppress the virus. Although many supplements and drugs have a linear dose-response relationship that allows for a "start low and go slow" approach, direct-acting antivirals (DAAs) do NOT have a linear dose-response relationship, and low-dose therapy can often lead to evolution of drug resistant mutations in the virus.

Related discussion:
https://forums.phoenixrising.me/threads/drs-who-treat-with-low-dose-valcyte.39092/#post-625819

 

[ljimbo423]

He also discouraged overuse of blood tests for viruses unless patients were showing typical symptoms of infection beyond the usual CFS symptoms. Some of the CFS practitioners have been bending the rules about interpreting viral test results to support their personal theories about CFS, such as trying to infer active infections from IGG levels or reading too much into normal variation in test results.

It's also natural to get variations of titers over time and some of the test results can even vary depending on the skill of the lab technician. If you repeat the viral tests enough times, eventually the randomness and noise can cause misleading false positives. If you continue repeating the tests while undergoing treatments, normal variations in titers plus uncertainty in test results can give a false impression of progress.

That said, he did say that every once in a while he finds a patient who benefits from antivirals on some level. Not as a curative measure, but perhaps as a way to push back some opportunistic co-infections. Or maybe the antivirals have some secondary effects that happen to be partially beneficial to CFS symptoms.

Your doctor sounds like a very well informed/experienced doctor.

I once heard a woman in her 70's, that had Fibromyalgia and ME/CFS for years say "I use to think seeing was believing. What I've learned is, BELIEVING is seeing.

When a doctor or a researcher has a preconceived idea, they are often not open enough to other ideas. Possibly the truth.

 

[jamie13]

I was able to ask my GP (an Internist) to prescribe Valtrex. I have been taking 3g daily for 40 days so far with no improvements. My GP doesn't believe it will help but she trusts that I have done my research and knows me, so she was willing to prescribe...

I am not sure how long I should give it to see if it helps or not, but minimum 2-3 months, I'm thinking.

I hope some of you are having success with Valtrex.

 

[Rufous McKinney]

) to prescribe Valtrex.

what virus is this targetting?

 

[jamie13]

what virus is this targetting?

well, my logic is EBV since that’s really the only virus I’ve been tested for, and have a strong past infection. Now that I’ve found this community I am going to ask her to test me for other viruses I see suggested throughout here.
Any thoughts are welcome. I am trying to navigate all of this myself basically. Can’t find a competent doctor.

 

[Rufous McKinney]

I am trying to navigate all of this myself basically. Can’t find a competent doctor.

my internist GP wanted me to take antivirals, but this he says requires Stanford. and I've not left the city limits here in over a year. I aint' headed to Stanford. (there was a clinic, then)

I did actually ask the question why can't HE do it, and somehow I did not come back with an answer.

My next mistake was calling the local immunologist, allergist. I indicated I was seeking Antivirals.

Mistake. They call back, cancel, tell me they can't help me.

meanwhile, I am so likely also Mast Cell Disorder. So will this person refuse to see me? Once again?

 

[jamie13]

my internist GP wanted me to take antivirals, but this he says requires Stanford. and I've not left the city limits here in over a year. I aint' headed to Stanford. (there was a clinic, then)

I did actually ask the question why can't HE do it, and somehow I did not come back with an answer.

My next mistake was calling the local immunologist, allergist. I indicated I was seeking Antivirals.

Mistake. They call back, cancel, tell me they can't help me.

meanwhile, I am so likely also Mast Cell Disorder. So will this person refuse to see me? Once again?

I'm sorry.
It is so difficult to be able to try treatments, and it shouldn't be. I am just so sorry. It sucks. I wish I could help you and all of us.