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Lecture by Dr Montoya from Feb. 2018, partly on antiviral treatment

SunMoonsStars

Senior Member
Messages
159
My experience is i noticed a positive effect from AVs after 3 months and about 6 months to confirm they were indeed helping but not cured. Ive been on famvir since 2009 and had a short stint on valtrex which didnt help and tried combining it with famvir, it may have helped. Also did 18months on famvir/valcyte that was positive.

But it has been up and down, as i have stopped avs for short periods of time to see if i could hold my improvements. Ive lasted as short as a few days upto a couple of months, which i think i did once.

A few theories i believe with my situation is that the viruses are a very low activity when doing well to very high activity when crashing, rarely dormant. I believe the avs dont stop these viruses from being active and feasting on its host but they stop the virus replicating and over time the viral load drops as the virus naturally die off and no new viruses are made. I believe thats why it can take along time to put these viruses to sleep, as in years. And maybe never truly knock the virus out.

I dont believe medicine can really detect an active infection unless its brand new first time infection or it is very overt and you are close to or in septic shock, that they will detect viruses in blood or cerebral spinal fluid. I think these viruses are sitting in the nervous system and occassionally small amounts of virus enter the blood stream to locate elsewhere.

I did use arvs for awhile and they would help for short lengths of time, so stopping and restarting would bring back some improvement . My experience with arvs i believe were through its ant inflammatory action which would decrease with continued use until i took a break from them.

Im guessing but about 2 yrs ago i stopped famvir, so 8 yrs on avs, within days had a shingles infection which reoccurred several times in varying degrees even while on avs but not as severe. Id like to try stopping avs again but very reluctant as im doing quite well.

What viruses was i dealing with? cfs onset cmv/vzv/ebv within several months of each other, tests over 12 months later were totally negative to ebv ie no igg life long titres, strange? Several years after onset i had 1 cmv igg titre level test that showed cmv titres could be high enough to be an active infection and was unable to get further tests. Then multiple vzv/shingles episodes . It could be any combination of the above???

Chicken or the egg if the infection came first or the immune dysfunction??
Hi
What are the levels of CMV IGG that warrant it to be reactivated ? I can’t find this info anywhere. My IGG is about 20 and I heard 15 and higher warrants highly positive. But just read that on old thread of patient mentioning that cut off.
 

Hip

Senior Member
Messages
17,824
What are the levels of CMV IGG that warrant it to be reactivated ? I can’t find this info anywhere.

Dr Dantini uses a rule of thumb that if your herpesvirus IgG titers are 4 times higher the average titer level that the general population get when tested by that particular lab test, it indicates an active infection in the context of ME/CFS. Ref: here

That sounds like a simple rule, but unfortunately it's not easy to get info on the average titer levels, although if you write to the lab, they may be able to provide this information.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
This doctor (I don't know if his reputation, but he sounds good) says there is a drug called Pleconaril that may be effective against enterovirus (17:20). Has it ever been tested in ME/CFS? He also mentions "antiviral + Celecoxib" against FM (15:34).

 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Hi
What are the levels of CMV IGG that warrant it to be reactivated ? I can’t find this info anywhere. My IGG is about 20 and I heard 15 and higher warrants highly positive. But just read that on old thread of patient mentioning that cut off.

It depends on what units of measurement the lab uses. At the time it was above 1 was a possible active infection and eg .5 would be a past infection thats dormant?? i was 1 point something after several months of avs, it was a while back so memory is ify. I could only get it tested once which i think because i fell through the cracks. The second time i tried to get a titre level tested tgey said no only hiv people can get those tested????
 

Hip

Senior Member
Messages
17,824
there is a drug called Pleconaril that may be effective against enterovirus

Yes, Dr Chia gave pleconaril to some ME/CFS patients while the drug was available from the pharmaceutical company on compassionate release program (but the drug it no longer available at all now). It helped a bit, but at the end of the 4 month treatment, most patients relapsed with 1 or 2 weeks of discontinuation. Ref: 1

Pleconaril is not the ideal drug for treating the non-cytolytic enteroviruses that Dr Chia thinks are driving ME/CFS, as pleconaril cannot directly target non-cytolytic infections.

The enterovirus antiviral ribavirin also works to some degree, but this is a drug that can create serious side effects in long term use. I don't know anyone who is taking ribavirin as a long term ME/CFS treatment.

There is a desperate need to develop enterovirus antivirals, as ribavirin is the only one we have.
 
Last edited:

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
So I've seen some parts of the video and I've read the whole transcription.
I think this is a very good and informative talk.
Dr Montoya's position regarding anti virals is the opposite of what some researchers have advocated, ex Naviaux , but he has data from a trial and from personal experience to back his stance.
I find it hard to accept that after many decades there is not a conclusion about the role of virus in the genesis and manteinance of ME/CFS because there was some good initial research pointing in that direction, from Dr Lerner and Dr Chia.
It's not difficult to replicate initial findings from muscle and gastric bx , so what went wrong?
any comments, @Hip ?
 

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
Dr Dantini uses a rule of thumb that if your herpesvirus IgG titers are 4 times higher the average titer level that the general population get when tested by that particular lab test, it indicates an active infection in the context of ME/CFS. Ref: here

That sounds like a simple rule, but unfortunately it's not easy to get info on the average titer levels, although if you write to the lab, they may be able to provide this information.

My IgG CMV titers are more than ten times the average titer level, I'm trying to convince my infectologist to order me a PCR to check viral load.
She says that even if it comes positive it's difficult to act based on this information, Anti CMV drugs are too much expensive and tere is liver toxicity issues...
 

Hip

Senior Member
Messages
17,824
It's not difficult to replicate initial findings from muscle and gastric bx , so what went wrong?
any comments, @Hip ?

I can never understand why there is so little interest in ME/CFS viral research.



My IgG CMV titers are more than ten times the average titer level, I'm trying to convince my infectologist to order me a PCR to check viral load.
She says that even if it comes positive it's difficult to act based on this information, Anti CMV drugs are too much expensive and tere is liver toxicity issues...

If you get a negative PCR result, it does not mean you don't have an infection, in the world of ME/CFS.

In ME/CFS, viral test results are interpreted differently to the way ordinary infectious disease specialists interpret the results.

In ME/CFS you often find patients have high antibody titers to coxsackievirus B, echovirus, EBV, HHV-6 or cytomegalovirus.

But when you perform a PCR test, it may be negative in ME/CFS. An infectious disease specialist will interpret that negative PCR as an indication that there is no chronic infection. But by contrast, an ME/CFS specialist will still interpret high antibody titers, but negative PCR, as evidence for a chronic active infection.


I recently had some contact with Dr Dantini in Florida, who treats ME/CFS and fibromyalgia with antivirals. He told me that PCR tests he finds of no use in ME/CFS. He only uses antibody tests to detect chronic infections in ME/CFS and fibromyalgia.
 

pattismith

Senior Member
Messages
3,930
If you get a negative PCR result, it does not mean you don't have an infection, in the world of ME/CFS.

In ME/CFS, viral test results are interpreted differently to the way ordinary infectious disease specialists interpret the results.

In ME/CFS you often find patients have high antibody titers to coxsackievirus B, echovirus, EBV, HHV-6 or cytomegalovirus.

But when you perform a PCR test, it may be negative in ME/CFS. An infectious disease specialist will interpret that negative PCR as an indication that there is no chronic infection. But by contrast, an ME/CFS specialist will still interpret high antibody titers, but negative PCR, as evidence for a chronic active infection.

I recently had some contact with Dr Dantini in Florida, who treats ME/CFS and fibromyalgia with antivirals. He told me that PCR tests he finds of no use in ME/CFS. He only uses antibody tests to detect chronic infections in ME/CFS and fibromyalgia.

:thumbsup:Latent intracellular viral or bacterial infection can disrupt some cell functions and cause symptoms, it was shown with HSV, and I can't see why it would not be the case with others... I am not convinced that a reactivation is needed to create clinical outcome.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
I can never understand why there is so little interest in ME/CFS viral research.

I think the Rituximab results were problematic in this sense, because the time-response pattern pointed away from the viral hypothesis. There is a lecture that I posted last year from Dr Fluge in which he says, this time-response pattern wouldn't be expected if it was a virus, and they treated a chronic active EBV patient with Rituximab and s/he recovered in 3 days.

So when people thought, Rituximab works in 66% of patients, and it was more or less the only game in town for much of the scientific community, that meant it couldn't be a virus in 66% of patients.
 

Hip

Senior Member
Messages
17,824
Latent intracellular viral or bacterial infection can disrupt some cell functions and cause symptoms, it was shown with HSV, and I can't see why it would not be the case with others... I am not convinced that a reactivation is needed to create clinical outcome.

Yes, some of the herpesviruses have latency states that involve partial reactivation of the virus, where it starts making some viral proteins in the cells, but does not male any viral particles (so you will no detect the viral particles in the blood by PCR).

In addition, you also have the abortive viral infection theory of Dr Lerner, in which you can have an active viral infection, but no new viral particles are detected.

And in enterovirus ME/CFS, we know that the virus morphs into its non-cytolytic form, which lives long-term inside cells, but also does not produce any new viral particles (so hence again blood PCR tests will often be negative).
 

Hip

Senior Member
Messages
17,824
There is a lecture that I posted last year from Dr Fluge in which he says, this time-response pattern wouldn't be expected if it was a virus, and they treated a chronic active EBV patient with Rituximab and s/he recovered in 3 days.

Fluge and Mella are not against the viral theories of ME/CFS, to my knowledge.

The lecture you are referring to I think is at timecode 45:50 in this talk by Dr Fluge, where Dr Fluge says that in the case of chronic active EBV infection (a rare condition which is NOT the same as EBV ME/CFS) involving chronic EBV infection of B-cells, rituximab can cure this illness within 3 days, by killing the B-cells that contain the virus.

But the disease of chronic active EBV infection has nothing to do with ME/CFS linked to chronic active EBV.



I think a major reason why ME/CFS viral research (and most ME/CFS biomedical research) is in the doldrums is because of the damage that the psychologists did to ME/CFS, when they tried to make ME/CFS look like a psychogenic "all in the mind" condition.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
Yes, exactly this is the lecture. I might have understood Dr Fluge wrong in this case, he is not ruling out infection. But still the whole Rituximab thing pointed researchers into the direction of an autoimmune cause.
 

Hip

Senior Member
Messages
17,824
But still the whole Rituximab thing pointed researchers into the direction of an autoimmune cause.

It did, though an autoimmune mechanism is quite compatible with a viral mechanism.

Have a look at this thread: Enterovirus-Induced ANT Autoantibodies: the Cause of ME/CFS?

This thread details some very interesting German research, which found that patients with chronic enterovirus infections of the heart muscle developed autoantibodies which targeted and disabled the ANT protein on mitochondria in the heart, thus causing a measured energy shortage in the heart muscle. Enterovirus infection seems to trigger the creation of these ANT autoantibodies, which then disable the mitochondria.

Now since chronic enterovirus infections are commonly found in the skeletal muscles of ME/CFS patients, I wondered whether the same ANT autoantibody might be the cause of ME/CFS, and thus might explain why there appears to be a physical energy shortage in ME/CFS.

Unfortunately when I tried to contact these researchers, to ask them whether their research might also apply to ME/CFS, they did not answer my emails.
 

SunMoonsStars

Senior Member
Messages
159
My IgG CMV titers are more than ten times the average titer level, I'm trying to convince my infectologist to order me a PCR to check viral load.
She says that even if it comes positive it's difficult to act based on this information, Anti CMV drugs are too much expensive and tere is liver toxicity issues...
What is average level ?
My test uses Less than or equal to .8 as negative and greater or equal to 1.1 as positive. My result is 19.8 CMV IGG
 

SunMoonsStars

Senior Member
Messages
159
Dr Dantini uses a rule of thumb that if your herpesvirus IgG titers are 4 times higher the average titer level that the general population get when tested by that particular lab test, it indicates an active infection in the context of ME/CFS. Ref: here

That sounds like a simple rule, but unfortunately it's not easy to get info on the average titer levels, although if you write to the lab, they may be able to provide this information.
Still trying to get what this average level thing means. ? And how to rate CMV titers.
What is average level ?
My test uses Less than or equal to .8 as negative and greater or equal to 1.1 as positive. My result is 19.8 CMV IGG
 

Hip

Senior Member
Messages
17,824
What is average level ?
My test uses Less than or equal to .8 as negative and greater or equal to 1.1 as positive. My result is 19.8 CMV IGG

In lab reports, the value given for a positive result relates to whether or not you produce antibodies against that pathogen. If you have even been infected with the pathogen in the past, you will usually produce antibodies to that pathogen, even though the infection may no longer be present.

But in ME/CFS, we are interested in whether you produce high levels of antibodies, as that suggests an active ongoing infection.
 

SunMoonsStars

Senior Member
Messages
159
Yes. I know this and I see like with HHV6 they have a good way to determine if your highly positive. HHV-6 foundation states over 1:320 IGG is suggestive. I have 1:1280. But I can’t find any such information on CMV and how to be alrerted it’s in that extra high mode.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
I can never understand why there is so little interest in ME/CFS viral research.





If you get a negative PCR result, it does not mean you don't have an infection, in the world of ME/CFS.

In ME/CFS, viral test results are interpreted differently to the way ordinary infectious disease specialists interpret the results.

In ME/CFS you often find patients have high antibody titers to coxsackievirus B, echovirus, EBV, HHV-6 or cytomegalovirus.

But when you perform a PCR test, it may be negative in ME/CFS. An infectious disease specialist will interpret that negative PCR as an indication that there is no chronic infection. But by contrast, an ME/CFS specialist will still interpret high antibody titers, but negative PCR, as evidence for a chronic active infection.


I recently had some contact with Dr Dantini in Florida, who treats ME/CFS and fibromyalgia with antivirals. He told me that PCR tests he finds of no use in ME/CFS. He only uses antibody tests to detect chronic infections in ME/CFS and fibromyalgia.


Hip, I am starting to wonder if those of us with positive antibodies to Borrelia get ME because somehow these latent viruses also 'wake up'? Has anyone looked at that possibility?