How to find a doctor in my area who will prescribe antivirals?

[hunter1899]

How did y’all go about finding a doctor in your area that prescribed antivirals for your EBV/CFS? Even the functional medicine docs here won’t really do it.

 

[jaybee00]

What is your country? AVs are OTC in many countries. If you have a viral infection find an infectious disease physician. If you have MECFS find an MECFS specialist.
There is no approved treatment or cure for MECFS.

 

[Hip]

If you have a viral infection find an infectious disease physician.

ID specialists are not actually useful when it comes to testing or treating the viral infections associated with ME/CFS, because they interpret viral antibody test results differently to ME/CFS doctors (specifically: ID specialists ignore chronically elevated IgG, whereas ME/CFS doctors see it as evidence of an active infection somewhere in the body).

The success rate of treating ME/CFS with antivirals is not good though, and I heard Stanford recently stopped using Valcyte to treat herpesvirus-associated ME/CFS, after Prof Montoya was fired. Presumably this is due to the low success rate. However, you stand more of chance of some success if you try out antivirals and other ME/CFS treatments, compared to not trying anything.

How did y’all go about finding a doctor in your area that prescribed antivirals for your EBV/CFS? Even the functional medicine docs here won’t really do it.

ME/CFS doctors can be found on this map. But a lot of them are oversubscribed with patients.

 

[hunter1899]

ID specialists are not actually useful when it comes to testing or treating the viral infections associated with ME/CFS, because they interpret viral antibody test results differently to ME/CFS doctors (specifically: ID specialists ignore chronically elevated IgG, whereas ME/CFS doctors see it as evidence of an active infection somewhere in the body).

The success rate of treating ME/CFS with antivirals is not good though, and I heard Stanford recently stopped using Valcyte to treat herpesvirus-associated ME/CFS, after Prof Montoya was fired. Presumably this is due to the low success rate. However, you stand more of chance of some success if you try out antivirals and other ME/CFS treatments, compared to not trying anything.

ME/CFS doctors can be found on this map. But a lot of them are oversubscribed with patients.

seems like I’ve heard some good success stories for folks on Valacyclovir/Valtrex. If not a cure then at least a noticeable improvement. Have you not found similar stories as much?

 

[Hip]

seems like I’ve heard some good success stories for folks on Valacyclovir/Valtrex. If not a cure then at least a noticeable improvement. Have you not found similar stories as much?

I just added a few Valtrex success stories to the thread: List of ME/CFS Recovery and Improvement Stories.

However, if you look at this forum poll, you see that the success rate of Valtrex among forum members was low: only 13% reported a major improvement.

 

[hunter1899]

I just added a few Valtrex success stories to the thread: List of ME/CFS Recovery and Improvement Stories.

However, if you look at this forum poll, you see that the success rate of Valtrex among forum members was low: only 13% reported a major improvement.

Bummed to see that poll. Do we know how long the folks who voted were on the Valtrex, how long they’ve had CFS, and if they were tested for all viruses?

 

[Hip]

Bummed to see that poll. Do we know how long the folks who voted were on the Valtrex, how long they’ve had CFS, and if they were tested for all viruses?

Usually antivirals like Valtrex or Valcyte take a very long time to work in ME/CFS patients, around a year or so to see the full benefits. (At the moment I am in the middle of writing a new thread which will explain why antivirals take so long to work in ME/CFS, according to Dr Lerner's theories — will post it shortly).

The rules of the poll state that you should only vote if you tried Valtrex for at least six months, at a dose of around 1000 mg four times daily (Dr Lerner's dosing). So hopefully voters will have complied with that.

We don't know the answers to your other questions, but if you click on the word "Votes" in the poll results, you can see the names of everyone who voted, and you can if you like track down their story, and see if they were tested for other viruses (but that of course would be a mammoth task).

Often patients are test for the herpesvirus range of viruses, but not for the enterovirus range (because very few labs have sensitive enough tests for detecting chronic enterovirus infections). So many patients do not even know if they might have enterovirus infections going on alongside their herpesvirus infections. That's important, because if you have additional infections, it could explain why Valtrex or Valcyte failed.

Ideally we would want a poll where patients were properly tested for all viruses, and then in the case of Valtrex treatment, in the poll we would only look at patients who had active EBV, but no other viruses.

 

[sometexan84]

ID specialists are not actually useful when it comes to testing or treating the viral infections associated with ME/CFS

This is so true. And so ironic.

I heard Stanford recently stopped using Valcyte to treat herpesvirus-associated ME/CFS, after Prof Montoya was fired. Presumably this is due to the low success rate.

What! No no no dude! @Hip It was for sexual misconduct and sexual harassment!

Stanford Daily

This past March, a large group of women who have worked under Dr. Montoya came forward with extensive allegations of sexual misconduct, assault and harassment,” they wrote. “The allegations included multiple instances of Dr. Montoya attempting unsolicited sexual acts with his female employees, among many other instances of harassment and misconduct, and were confirmed in an investigation.

The fact that Stanford stopped treating w/ Valcyte could largely be an outcome from the above...

However, if you look at this forum poll, you see that the success rate of Valtrex among forum members was low: only 13% reported a major improvement.

Have you recalculated it since my vote @Hip ?!

I hate to critique your work Hip! But I will say that lumping Valtrex and Famvir together isn't that fair.

That said, as it stands, the Valtrex (along w/ Famvir, I guess) is 16 to 12 (Major or Minor) improvement to no improvement.

Do we know how long the folks who voted were on the Valtrex, how long they’ve had CFS, and if they were tested for all viruses?

Excellent question to ask mister Hunter!

Usually antivirals like Valtrex or Valcyte take a very long time to work in ME/CFS patients, around a year or so to see the full benefits. (At the moment I am in the middle of writing a new thread which will explain why antivirals take so long to work in ME/CFS, according to Dr Lerner's theories — will post it shortly).

YES! You Rock Hip!

The rules of the poll state that you should only vote if you tried Valtrex for at least six months, at a dose of around 1000 mg four times daily (Dr Lerner's dosing). So hopefully voters will have complied with that.

Busted!
hehe, I did not adhere to the rules. Am I fired?

So many patients do not even know if they might have enterovirus infections going on alongside their herpesvirus infections. That's important, because if you have additional infections, it could explain why Valtrex or Valcyte failed.

I 2nd this thought!

 

[sometexan84]

How did y’all go about finding a doctor in your area that prescribed antivirals for your EBV/CFS? Even the functional medicine docs here won’t really do it.

Well, I found a functional med physician near me which worked. But you might also Google terms like "Internal medicine". But I've actually heard people in this forum describe good doc relationships that help w/ their treatment in all sorts of fields, like I've heard people getting good treatment from dermatologists, endocrinologists, psychiatrists, I even know of a child psychologist that treats this stuff, in adults. I've also heard of rheumatologists, neurologists, immunologists, I'm sure there's more.

Only other advice I can give from my experience is online reviews. I've found that lots of good reviews that mention good communication and listening is a good sign.

 

[Hip]

What! No no no dude! @Hip It was for sexual misconduct and sexual harassment!

Yes I know. I am suggesting Stanford stopped using Valcyte after Montoya left because its success rate was low. I am not suggesting they fired Montoya because the success rate was low!

I hate to critique your work Hip! But I will say that lumping Valtrex and Famvir together isn't that fair.

Lerner thinks Famvir and Valtrex probably have similar efficacy. Valtrex is normally used, because it is 3 times cheaper. But if Valtrex causes adverse effects, then patients can switch to the more expensive Famvir.

In any case, I did not have enough poll answer options to run Famvir as a separate question. I would like at some point to run a larger and more precise poll using something like a Google Forms survey.

hehe, I did not adhere to the rules.

If you didn't, maybe other respondents did not either, in which case the poll will not be as accurate as it should be.

Actually, if I were to run the poll again, I'd specify a minimum of say 10 months on Valtrex or Valcyte, because it does take a long time for these drugs to work.

 

[sometexan84]

I am not suggesting they fired Montoya because the success rate was low!

My bad!

I would like at some point to run a larger and more precise poll using something like a Google Forms survey.

Hell yea

Actually, if I were to run the poll again, I'd specify a minimum of say 10 months on Valtrex or Valcyte, because it does take a long time for these drugs to work.

That would actually make things very interesting. Because I bet a lot of people here have not tried it for that long.

However, I would never get to vote, because after 10 months on valtrex, I will no longer be in the forum.

 

[Hip]

However, I would never get to vote, because after 10 months on valtrex, I will no longer be in the forum.

That's one issue with such a survey: people who go into full remission may disappear from the ME/CFS community.

However, it's not show stopper, because a lot of the time, ME/CFS patients are not cured by treatments, but may just move up one level on the ME/CFS scale of: mild, moderate and severe. So maybe they were severe, and antiviral treatment pushed them up 1 level to moderate. Or if they are really lucky, pushed them 2 levels to mild. In which case, they will still have ME/CFS, and so will likely stay in touch with the ME/CFS community. So they will then hopefully see my survey.

 

[sometexan84]

However, it's not show stopper, because a lot of the time, ME/CFS patients are not cured by treatments, but may just move up one level on the ME/CFS scale of: mild, moderate and severe. So maybe they were severe, and antiviral treatment pushed them up 1 level to moderate. Or if they are really lucky, pushed them 2 levels to mild. In which case, they will still have ME/CFS, and so will likely stay in touch with the ME/CFS community. So they will then hopefully see my survey.

Yea, I mean, of course that is true.

I just, idk, I think that sort of test is just sort of flawed to begin with. I do think it could be beneficial. But I feel like there are so many factors that, in my mind, would mess w/ the accuracy and benefit of the poll.

I'm not trying to be a naysayer. I'm really not. And I do like where your head is at. But to me, I just don't see the same type of stable progression you seem to. Like, not from myself, just from others.

Like, ok, so say some guy did this treatment, as is now +1 level. And that is where they are. And that level is where they will stay until they find the next treatment that will bring them up another level, +1, right?

Well, no, not really. From what I've seen this disease is a constant progression. You could hear from some guy that they improved +1 w/ X treatment. But later on, you might hear that he went back to where he was or even got worse. This forum is plagued (if you will) w/ relapse stories.

I'd personally be way more interested in polls surrounding comorbidities we share, or symptoms, or conditions, or lab test, any of that. Because treatment solutions is just asking too much from everyone. Dude, I had like 3 or 4 major treatments to get where I am, and I don't think I'd be feeling good now if I didn't have ALL of those treatments. ALL OF THEM! literally. And that's coming from me remember, a MILD case.

 

[Hip]

This forum is plagued (if you will) w/ relapse stories.

Indeed, and in fact in this new poll (which I've done a bit of work on), I've already got a question lined up to hopefully deal with the relapse and other long-terms issue, which is this question:

This question tries to capture the possible long-term outcomes of a treatment.

Answer 1 is a desirable outcome, where the treatment keeps working for some years.

Answer 2 is where the treatment stopped working after some time (quite common with ME/CFS treatments).

Answer 3 is the most desirable outcome, where the benefits gained seem permanent, even after stopping the treatment (this permanent improvement is sometimes reported with tenofovir and Valcyte treatments).

Answer 4 sometimes occurs, where people develop side effects to the treatment in the long term, and so have to stop it.

 

[sometexan84]

@Hip Alright, that's straight-forward enough. I guess I can't answer it since I haven't been taking it for years. But I'd like to see it anyway, did you already post it?

 

[Hip]

@Hip Alright, that's straight-forward enough. I guess I can't answer it since I haven't been taking it for years. But I'd like to see it anyway, did you already post it?

No, this new more in depth survey is something I was working on over th last two years, but it's not live.

The main problem I have with the new survey is how to properly identify ME/CFS patients into their viral subsets — ie, whether they have active CVB, echovirus, EBV, cytomegalovirus, etc.

As you know, patients are quite confused themselves about which active infections they may have, because of the complexities and ambiguities in viral diagnosis. And many patients do not get fully tested for all relevant ME/CFS viruses, often neglecting CVB and echovirus. So there are gaps in their knowledge about their infections.

In the survey, I want to make sure that patients trying Valtrex, for example, have active EBV, and don't have any other active viral infections. That's because we want to see how effective Valtrex is for the pure EBV subset, the subset which it is intended to treat.

If you have a patient with EBV, but unbeknown to them they also have say active CVB, then you might expect them to do poorly on Valtrex, because they are not a pure EBV patient. So when they answer the survey, they will say Valtrex did not work for them, but that might be because they also had CVB. And then the survey will make Valtrex look less effective than it actually is.

This may also be the reason Valtrex came out badly on my existing survey, where only 13% had major improvements on it. Maybe lots of those Valtrex respondents on the existing survey either had other active infections, or maybe they didn't even have active EBV to begin with, because they misinterpreted their EBV test results.

Actually even in Dr Lerner's studies, he was good at testing for and treating bacterial co-infections in the herpesvirus ME/CFS patients he treated with Valtrex and Valcyte, but he totally neglected testing for coxsackievirus B and echovirus (though in those days, it had not yet been worked out by Dr Chia that you need antibody tests by the neutralization method to detect chronic enterovirus in ME/CFS).

So I want to figure out a reliable way of determining the viral subset each survey respondent falls into before I go ahead with the survey.

One idea was an input form where you enter your viral test results, and then this calculates whether you have an active infection or not with all the relevant ME/CFS viruses.

 

[sometexan84]

I'll PM you about this

 

[hunter1899]

No, this new more in depth survey is something I was working on over th last two years, but it's not live.

The main problem I have with the new survey is how to properly identify ME/CFS patients into their viral subsets — ie, whether they have active CVB, echovirus, EBV, cytomegalovirus, etc.

As you know, patients are quite confused themselves about which active infections they may have, because of the complexities and ambiguities in viral diagnosis. And many patients do not get fully tested for all relevant ME/CFS viruses, often neglecting CVB and echovirus. So there are gaps in their knowledge about their infections.

In the survey, I want to make sure that patients trying Valtrex, for example, have active EBV, and don't have any other active viral infections. That's because we want to see how effective Valtrex is for the pure EBV subset, the subset which it is intended to treat.

If you have a patient with EBV, but unbeknown to them they also have say active CVB, then you might expect them to do poorly on Valtrex, because they are not a pure EBV patient. So when they answer the survey, they will say Valtrex did not work for them, but that might be because they also had CVB. And then the survey will make Valtrex look less effective than it actually is.

This may also be the reason Valtrex came out badly on my existing survey, where only 13% had major improvements on it. Maybe lots of those Valtrex respondents on the existing survey either had other activate infections, or maybe they didn't even have active EBV to begin with, because they misinterpreted their EBV test results.

Actually even in Dr Lerner's studies, he was good at testing for and treating bacterial co-infections in the herpesvirus ME/CFS patients he treated with Valtrex and Valcyte, but he totally neglected testing for coxsackievirus B and echovirus (though in those days, it had not yet been worked out by Dr Chia that you need antibody tests by the neutralization method to detect chronic enterovirus in ME/CFS).

So I want to figure out a reliable way of determining the viral subset each survey respondent falls into before I go ahead with the survey.

One idea was an input form where you enter your viral test results, and then this calculates whether you have an active infection or not with all the relevant ME/CFS viruses.

I’m new here but one thing is already clear: Hip is a badass.

 

[Hip]

I’m new here but one thing is already clear: Hip is a badass.

I am just filling in time with interesting nerdy projects while I continue searching for that elusive cure for ME/CFS! Been doing this for over a decade now, in the hunt for remission.

 

[sometexan84]

I’m new here but one thing is already clear: Hip is a badass.

Pshh, he would agree. hahah