Recommendations for doctors who use anti virals?

[Lucy1996]

I am convinced my symptoms are being caused by a persistent viral infection (I got ill almost immediately after shingles). I genuinely don't think I will get better with rest alone as that's what I've been doing for 18 months.

Where could I go to potentially go on anti viral treatment? Is there any recommended private doctors in the US or Europe (as I'm guessing there is none in the U.K. Since it's not an approved treatment) who could look into my levels of the virus and potentially treat me using anti virals?

 

[Jonathan Edwards]

It seems there are quite a lot of doctors who say they can look into 'levels of virus' but the research community by and large agree that there are no levels of virus to find in ME - at least not of any clinical use to the treatment of individual patients. Unfortunately private clinics make money out of 'positive' results, even if nobody else much thinks they mean anything.

I am wondering why you should think that there is a persistent virus? We all have the shingles virus dormant and during shingles it reactivates briefly. As far as we now that has nothing to do with feeling along term. Having one virus does not make having another virus more likely.

 

[Lucy1996]

It seems there are quite a lot of doctors who say they can look into 'levels of virus' but the research community by and large agree that there are no levels of virus to find in ME - at least not of any clinical use to the treatment of individual patients. Unfortunately private clinics make money out of 'positive' results, even if nobody else much thinks they mean anything.

I am wondering why you should think that there is a persistent virus? We all have the shingles virus dormant and during shingles it reactivates briefly. As far as we now that has nothing to do with feeling along term. Having one virus does not make having another virus more likely.

I don't know I'm just clutching at straws really

 

[helen1]

Dr Kaufman at OMI treats with antivirals in CA. There's at least one thread about him with very positive feedback from patients.
@Lucy1996

 

[perovyscus]

Dr. Enlander - my insurance covered both the visit and the Valcyte was free (I don't remember if I applied with Roche or my insurance inexplicably covered it).

 

[Jesse2233]

@Jonathan Edwards what about Chia's work on smoldering viral infection in the lytic state? And how would you explain patients that improve from antiviral treatment?

 

[Jonathan Edwards]

@Jonathan Edwards what about Chia's work on smoldering viral infection in the lytic state? And how would you explain patients that improve from antiviral treatment?

I am not sure that Dr Chia or anyone else has convincing evidence of 'smouldering viral infection'. As far as I can see it is just a theory. People improve on all sorts of treatments, some of which we know have no active ingredients, so I do not think one can conclude anything from such accounts. We need reliable evidence, just as one does for safe design of a car or effective design for cures for rising damp. Anti-viral treatments are not licensed because they do not have that sort of reliable evidence.

 

[Jesse2233]

I am not sure that Dr Chia or anyone else has convincing evidence of 'smouldering viral infection'. As far as I can see it is just a theory. People improve on all sorts of treatments, some of which we know have no active ingredients, so I do not think one can conclude anything from such accounts. We need reliable evidence, just as one does for safe design of a car or effective design for cures for rising damp. Anti-viral treatments are not licensed because they do not have that sort of reliable evidence.

Understood, thanks for the reply

Is there a way the somoldering viral theory could somehow interrelate with your work on B-cell depletion? In other words, could both models and methods of treatment work at the overall condition from different angles?

 

[Tammy]

Lucy1996 I think you are definitely on the right track with your assumption that a persistent viral infection is causing your symptoms. There are some CFS specialists that have also thought this. I am going to PM you sometime today.

 

[Jonathan Edwards]

Understood, thanks for the reply

Is there a way the somoldering viral theory could somehow interrelate with your work on B-cell depletion? In other words, could both models and methods of treatment work at the overall condition from different angles?

No, I cannot see any relation. If viruses are really 'smouldering' or semi-active then B cell depletion would be a bad idea. The fact that B cell depletion seems not to cause problems with viruses re-appearing suggests that there are no smouldering viruses in ME.

 

[Jesse2233]

No, I cannot see any relation. If viruses are really 'smouldering' or semi-active then B cell depletion would be a bad idea. The fact that B cell depletion seems not to cause problems with viruses re-appearing suggests that there are no smouldering viruses in ME.

What if the viruses are "stealth" or "smouldering" within the B cells? And that depleting the B cells kills those viruses instead of prompting them to re-appear?

 

[Jonathan Edwards]

What if the viruses are "stealth" or "smouldering" within the B cells? And that depleting the B cells kills those viruses instead of prompting them to re-appear?

The only virus that lives in B cells is EBV. We all have it in our B cells so there is nothing more smouldering in one person than another. We live with it quite happily. The only exception to this rule seems to be certain dependencies of B cell lymphomas on EBV, but in that case you have lymphoma - and there is nothing hidden about it.