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.
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If you have a viral infection find an infectious disease physician.
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.
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?
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?
This is so true. And so ironic.ID specialists are not actually useful when it comes to testing or treating the viral infections associated with ME/CFS
What! No no no dude! @Hip It was for sexual misconduct and sexual harassment!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.
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.
Have you recalculated it since my vote @Hip ?!
Excellent question to ask mister Hunter!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?
YES! You Rock Hip!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).
Busted!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.
I 2nd this thought!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.
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.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.
What! No no no dude! @Hip It was for sexual misconduct and sexual harassment!
I hate to critique your work Hip! But I will say that lumping Valtrex and Famvir together isn't that fair.
hehe, I did not adhere to the rules.
My bad!I am not suggesting they fired Montoya because the success rate was low!
Hell yeaI would like at some point to run a larger and more precise poll using something like a Google Forms survey.
That would actually make things very interesting. Because I bet a lot of people here have not tried it for that long.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.
However, I would never get to vote, because after 10 months on valtrex, I will no longer be in the forum.
Yea, I mean, of course that is true.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.
This forum is plagued (if you will) w/ relapse stories.
@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 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.