Video Dr. Byron Hyde - Enterovirus theory?

[Hip]

do any of the drs treating enterovirus differ their treatment depending on what type of enterovirus is found?

Dr Chia uses oxymatrine for all enteroviruses. He also uses Epivir (lamivudine) for enterovirus infection, although he found Epivir is not effective for echovirus 6 and 7. Ref: 1

And although he does not use it, he found that ribavirin is effective for CVB3 and CVB5, but not CVB4. Ref: 1 (see timecode 42:31)

 

[perrier]

I'm curious what Dr Ron Davis and his team may be Thinking about enterovirus. Perhaps Jaime knows. I'm not sure how to tag folks.

 

[halcyon]

I'm curious what Dr Ron Davis and his team may be Thinking about enterovirus. Perhaps Jaime knows. I'm not sure how to tag folks.

I've been trying to get an answer to this question for months and months. I've tried via email, twitter, and here with no luck.

There is very solid evidence, over two dozen studies, linking this disease to enteroviruses. The epidemiology fits. Several studies, replicated in recent years by Dr. Chia, have shown consistently elevated neutralizing enterovirus antibodies in ME patients. Knowing this evidence exists, one would think it would be one of the first things OMF would try to replicate in their study, but they haven't. In fact, they have opted to perform serology testing for literally everything except enteroviruses. I can see no reasonable reason why this decision was made. This is a huge omission. Yes, one can argue that serology is largely meaningless, but OMF cannot argue they believe this while also spending considerable money performing serology for everything else but enteroviruses.

They have claimed that they will perform digital PCR assays on blood looking for enterovirus, but the last I heard of this was that they needed to develop the primers to do so. It's unclear why they believe existing commercially available, off the shelf validated PCR primers are not adequate for this. It's unclear how they are validating these primers. It's unclear if these new primers will detect the mutated enterovirus strains found in ME patients (ref). It's unclear how they are collecting, transporting, storing, and processing the blood samples for this. It's unclear whether they are using RNA preservatives at time of blood draw to preserve the integrity of viral RNA in the samples. It's unclear what blood compartments are being tested.

In the most recently posted video, Davis appears to refute the idea that there could be an active tissue infection, with very limited spillover into the blood, so he appears to be willing to deny the numerous studies that exist showing abnormal, non-cytolytic enterovirus infection in the muscle, GI tract, and brains of ME patients. I assume this means that he has no interest in replicating these numerous studies with tissue testing.

If you can get any answers, please do share them.

 

[perrier]

I've been trying to get an answer to this question for months and months. I've tried via email, twitter, and here with no luck.

There is very solid evidence, over two dozen studies, linking this disease to enteroviruses. The epidemiology fits. Several studies, replicated in recent years by Dr. Chia, have shown consistently elevated neutralizing enterovirus antibodies in ME patients. Knowing this evidence exists, one would think it would be one of the first things OMF would try to replicate in their study, but they haven't. In fact, they have opted to perform serology testing for literally everything except enteroviruses. I can see no reasonable reason why this decision was made. This is a huge omission. Yes, one can argue that serology is largely meaningless, but OMF cannot argue they believe this while also spending considerable money performing serology for everything else but enteroviruses.

They have claimed that they will perform digital PCR assays on blood looking for enterovirus, but the last I heard of this was that they needed to develop the primers to do so. It's unclear why they believe existing commercially available, off the shelf validated PCR primers are not adequate for this. It's unclear how they are validating these primers. It's unclear if these new primers will detect the mutated enterovirus strains found in ME patients (ref). It's unclear how they are collecting, transporting, storing, and processing the blood samples for this. It's unclear whether they are using RNA preservatives at time of blood draw to preserve the integrity of viral RNA in the samples. It's unclear what blood compartments are being tested.

In the most recently posted video, Davis appears to refute the idea that there could be an active tissue infection, with very limited spillover into the blood, so he appears to be willing to deny the numerous studies that exist showing abnormal, non-cytolytic enterovirus infection in the muscle, GI tract, and brains of ME patients. I assume this means that he has no interest in replicating these numerous studies with tissue testing.

If you can get any answers, please do share them.

Thank you..perhaps Jaime knows more. My daughter was positive on stomach biopsy for enterovirus. Dr chia is a well respected physician. Surely, he and Byron Hyde must have made the case to OMF. I know that Dr Naviaux has met DR Hyde. Is there anyone with more information.

 

[knackers323]

@Hip @halcyon is there any other mechanism that epivir should help in CFS other than its EV effects?

Is it immune modulatory and anti inflammatory?

 

[Hip]

is there any other mechanism that epivir should help in CFS other than its EV effects?

Not that I am aware of.

 

[xak53]

In my opinion Dr Hyde is a genius and I have been quoting and following his work for years but it seems his work is beyond the understanding of many medical professionals as they are told what to believe and his work falls outside their remit.

 

[Dechi]

I’m seeing Dr Hyde in a few weeks. If I can remember, I’ll try and ask if he’s talked with anybody at OMF about enterovirus infections.

 

[knackers323]

Not that I am aware of.

Ok thanks. I had been having some results with it and then it started causing a very sore throat and cold symptoms which are known side effects.

Does it reduce the level of functioning of the immune system?

I took a few days off and the side effects subsided. On restarting I noticed a slight boost within hours of taking the medication, as I had with a number of doses previously, so it either acts very fast or it seems it must have some immune modulating effects

 

[xak53]

I’m seeing Dr Hyde in a few weeks. If I can remember, I’ll try and ask if he’s talked with anybody at OMF about enterovirus infections.

Thank you so much and I wish you well with your appointment and please take a look at http://www.hfme.org/
where most of his works are published it makes very good reading. If possible please ask him if he would see me as a email patient?

 

[xak53]

For anyone interested Dr. Byron Hyde and Dr. Kenny De Meirleir are two of the best-known names in the field of researching CFS/ME. Dr. Hyde is the director of the Nightingale Research Foundation located in Ottawa, Canada. His book, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndromeremains the most comprehensive collection of scientific and clinical studies on CFS/ME ever published.

http://www.cfstreatmentguide.com/blog/interview-with-dr-byron-hyde-and-dr-kenny-de-meirleir

 

[Paralee]

Why am I wondering about secretors vs. non-secretors? Any possible connection? I have some things I'm wondering about that play both sides.

 

[junkcrap50]

In Dr Chia's interferon studies, some patients were put into full remission for up to 14 months, but all patients treated eventually relapsed. But that may be because they did not keep taking the interferon indefinitely, but just took a course of interferon, and then stopped taking it.

His study which you linked does not mention biopsy testing, but rather positive Coxsackie B antibodies in PBL & PBMC. Which, to me, would indicate a more acute infection, no? Do you know Dr. Chia's results with interferon & ribavirin in patients with negative blood antibodies but positive biopsies? I assume he still tests and treats postive gut biopsies.

If the interferon suppositories did cure my ME/CFS, I would not stop taking them. I would continue to take them on a maintenance dose indefinitely, to ensure my ME/CFS never came back. The suppositories are cheap and easy enough to take indefinitely.

I am thinking in terms of taking lower doses on a longer term basis; this might generally help lower viral loads, and may not cure you of ME/CFS, but may improve symptoms.

Is Dr. Chia aware of interferon suppositories for long term interferon treatment? Can it or does anyone compound interferon suppositories in the US or West (besides Russia)? Perhaps a longer course of antienterotherapy would be more effective in completely erradicating the virus.

Most ME/CFS patients do not respond to interferon, but around 25% do.

Any theory as to why? Those 25% have enterovirus infection?

Thanks for your research and info Hip. (No idea how you keep track of all your references and info).

 

[Hip]

His study which you linked does not mention biopsy testing, but rather positive Coxsackie B antibodies in PBL & PBMC. Which, to me, would indicate a more acute infection, no? Do you know Dr. Chia's results with interferon & ribavirin in patients with negative blood antibodies but positive biopsies? I assume he still tests and treats postive gut biopsies.

Antibodies are detected in the blood serum (serum is the pale yellow fluid that you get when you remove the blood cells).

It's viral RNA/DNA that is detected in the PBL & PBMC using PCR. Chia finds that even with the most sensitive PCR tests, you can only detect enterovirus in around 30% of enterovirus-infected ME/CFS patients. So PCR is not a reliable way of detecting enterovirus in ME/CFS.

Antibody testing, using the sensitive neutralization method as offered by ARUP Lab, is the best blood test for chronic enterovirus in ME/CFS, Chia found. And the stomach biopsy is slightly more sensitive than an antibody blood test (but the stomach biopsy does not tell you which CVB and echovirus serotypes you have).

There is a summary of Dr Chia's research on enterovirus testing here.

I believe the ARUP neutralization test does not distinguish between IgM and IgG antibodies. But you only have IgM antibodies in the first few weeks of acute infection, then IgM disappears. So chronically high enterovirus antibodies in neutralization tests thus indicates high IgG, which suggests chronic infection.

I just wrote a new article here on viral testing in ME/CFS.

Is Dr. Chia aware of interferon suppositories for long term interferon treatment? Can it or does anyone compound interferon suppositories in the US or West (besides Russia)? Perhaps a longer course of antienterotherapy would be more effective in completely erradicating the virus.

I only know about Russian interferon suppositories.

My idea was to start with normal interferon injections, and when this cleared most of the virus, and patients were put into near remission, they could continued with low-dose interferon suppositories to try to prevent the virus from returning.

Interferon works very well for many enterovirus ME/CFS patients, putting them in near remission; but the virus often returns some months later, along with the ME/CFS. So maybe low-dose interferon suppositories might prevent the virus from returning.

The problem though with long-term interferon treatment is that patients eventually develop antibodies to interferon which neutralize its effects. So for this reason, interferon becomes useless in the long-term. But I suspect that you may not develop antibodies from interferon suppositories as quickly.

Any theory as to why? Those 25% have enterovirus infection?

Well first of all, interferon only works for enterovirus ME/CFS but not herpesvirus ME/CFS. So enterovirus ME/CFS accounts for about half of all ME/CFS patients (according to Chia), so interferon only stands a chance of working for 50% of patients.

Dr Chia has also found interferon does not work for ME/CFS patients with CVB4, but does work for CVB3 and CVB5. So this means that interferon is not good for all enterovirus patients.

 

[junkcrap50]

Thanks Hip. More than helpful. I forgot that ARUP does blood testing. For some reason, I thought they only did biopsies.

But I suspect that you may not develop antibodies from interferon suppositories as quickly.

As, "as quickly" seems to be key. In your old post from 2016 in this thread. You say long term use of interferon suppositories do not develop antibodies (but the reference is very weak and merely just a product claim):

interferon suppositories also have advantage of not creating anti-interferon antibodies even in long term use. Ref: 1

 

[Hip]

Thanks Hip. More than helpful. I forgot that ARUP does blood testing. For some reason, I thought they only did biopsies.

It's only Dr Chia's lab which does the stomach biopsy test. It's a test only available from Dr Chia.

As, "as quickly" seems to be key. In your old post from 2016 in this thread. You say long term use of interferon suppositories do not develop antibodies (but the reference is very weak and merely just a product claim):

Yes, if that product claim is anything to go by, you could take interferon suppositories for many years without developing autoantibodies. Whether you could go for decades without developing autoantibodies is perhaps another question.

I think the Russian interferon suppositories are immensely good value (affordable to take these long term), easier to administer than injections, and likely will not create autoantibodies for a long time.

By comparison, the cost of 3 months injectable Western interferon at 3 million IU given 3 times per week (Dr Chia's dosing) would be about $18,000.


Unfortunately interferon does not work for the enterovirus I have, CVB4. But if you have other enteroviruses like CVB3, CVB5 or echovirus, then interferon suppositories might be you ticket to recovery from ME/CFS.

The main issues it that interferon can cause a depression side effects when taken at full dose (but antidepressants can help counter this), and your ME/CFS symptoms will be worse during the weeks or months at the full dose.

But once you have put yourself into remission using interferon, a low maintenance dose will hopefully be free of these side effects.

 

[Hip]

You might like this MEpedia article on interferon treatment of ME/CFS.


Dr Chia stopped using interferon treatment for a while, but is now using it again in certain cases: he uses interferon beta to treat severe bedbound hospitalized ME/CFS patients, as he finds after two weeks treatment, those patients become able to walk around again.

 

[knackers323]

@Hip are you still planning on trying the interferon or are you going to wait for the new entero treatment due in a couple of years?

 

[Hip]

@Hip are you still planning on trying the interferon or are you going to wait for the new entero treatment due in a couple of years?

I tried some very low doses of interferon around 15,000 IU daily as suppositories, but did not notice much. But as mentioned, I have CVB4, and Dr Chia finds interferon usually does not work for CVB4. So interferon is probably not going to work in my case.

But for other enterovirus ME/CFS patients, the interferon suppositories protocol I suggested might keep them in near full remission indefinitely.

The protocol I have in mind involves taking full interferon suppository doses initially for a few weeks or months to create remission, then using a low-dose maintenance interferon suppositories to maintain the remission indefinitely.

 

[Pyrrhus]

The main issues it that interferon can cause a depression side effects when taken at full dose (but antidepressants can help counter this), and your ME/CFS symptoms will be worse during the weeks or months at the full dose

Yeah, the interferon side effects can be truly intolerable.
Basically, it’s probably because the interferon potentially triggers a pro-inflammatory state in all cells it comes in contact with.

There is a drug called Nitazoxanide that appears to trigger interferon production in infected cells at the standard dose. (250mg four times a day). [1] At higher doses it may trigger interferon production in all cells, not just the infected cells. I had good effects at the standard dose, but intolerable side effects at much higher doses. Unfortunately, the body appears to habituate to the drug after a couple of weeks, so it’s not really a long-term solution. [2]

[1] http://www.jimmunol.org/content/186/1_Supplement/155.21
[2] https://www.ncbi.nlm.nih.gov/pubmed/18710916