Have the results of Dr Chia's ME/CFS interferon treatment actually proven enterovirus causes ME/CFS?

[halcyon]

I tested negative for a general enterovirus PCR assay but positive for ARUP's CBV4 assay. I've never been sure how to square the two

PCR of blood is kind of pointless with enterovirus infections. In Chia's study above, they looked specifically in the white blood cell fraction. I imagine only your plasma was tested. It's really common to see false negatives with PCR of body fluids in long term enterovirus infections. This goes for ME and other enteroviral related diseases. The only people that are consistently viremic with detectable enterovirus are patients with hypogammaglobulinemia.

They claim that viferon doesn't lead to the same issue of triggering anti-IFN antibodies, perhaps due to being a suppository vs. injectable.

 

[Jesse2233]

It's really common to see false negatives with PCR of body fluids in long term enterovirus infections. This goes for ME and other enteroviral related diseases.

How does one get an IgM enterovirus test then? I'm still not clear if there's a possibility ARUP is just showing past exposure and not an ongoing infection

 

[Hip]

Didn't realize this. Is this just true for external interferon (vs endogenous)?

Yes, just exogenous interferon; your endogenous interferon is not generally at risk of triggering such antibodies, as far as I am aware; although there is an interesting disease called adult-onset immunodeficiency syndrome in which the body develops antibodies to its own endogenous interferon gamma, so I guess this happens sometimes.

I am not sure if these exogenous interferon antibodies will also target the endogenous interferon. If they did, that might start causing immune problems.

And could one use Rituximab in conjunction with IFN to prevent production of the IFN antibodies?

I don't know, but that approach sounds like a lot of tampering with the body.

You might be better off using interferon suppositories if you wanted to take interferon on a long term basis, as the link Halcyon provided above indicates this is resistant to developing autoantibodies.

See this post and this post for more info on cheap Russian interferon suppositories. Though remember Dr Chia says he finds interferon is ineffective against coxsackievirus B4. It works for other Coxsackie B viruses though.

 

[halcyon]

How does one get an IgM enterovirus test then?

There aren't any commercially available IgM tests for coxsackie B or echovirus in the US as far as I know.

I'm still not clear if there's a possibility ARUP is just showing past exposure and not an ongoing infection

It can't definitively differentiate between the two. Clinically though if your blood still shows a neutralizing effect at ≥ 1:320 this is what is seen with active infections. Titers lower than this are probably showing immunity from past exposure.

 

[Jesse2233]

Might using a prolonged course of interferon alpha (or the Russian suppositories) in conjunction with a different antiviral than ribivarin (such as Viread and/or Arbidol) have a better effect?

 

[junkcrap50]

I don't have much to contribute, but found your thread very useful and interesting, @Hip.

So I may dissolve my DHQ in a small amount of say vodka (40% ethanol), and then take that orally, or apply this solution transdermally. I am initially aiming for a daily dose of around 200 mg DHQ (I will increase it later). So that amount should dissolve in around 5 ml of ethanol — say a tablespoon full of vodka.

... Does that really work? Dissolving water insoluble medicines in ethanol for better absorption?

 

[Hip]

Does that really work? Dissolving water insoluble medicines in ethanol for better absorption?

From what I have read online, yes, I think it will work. You can also use ethanol to dissolve other water-insoluble supplements like curcumin in order to get better absorption. Curcumin is insoluble in water, but dissolves in pure ethanol at 10 mg per ml.

Here is a study showing that curcumin dissolved in ethanol is better absorbed through the skin.

 

[Steve4Andrea]

There is a long history of using ethanol extracts in folk medicine, often they fermented the compounds or made "wines".

It seems that current commercial medicines avoid the ethanol process because of poor storage and shelf life, it is easier to just increase the dose to make up for poor absorption. I have used "home made" ethanol extracts or solutions many times with no problems, usually the dose is small enough that the alcohol never creates a problem.

When looking at herbal research studies it is important to notice what solvent they use to prepare their compounds, if they use water (aqueous) then you should use water to replicate the results but if they use ethanol then a water extract or "raw" herbal may not work. I will add that sometimes heat can assist in the creation of extracts in less time.

In the US you can buy food grade 99% ethanol in a liquor store as "Everclear" and then dilute with water or juice after you dissolve your drug or herbal compound. I've never used transdermal absorption for anything but it should work well for the right compounds, it is all about getting the right stuff to the right place.

 

[knackers323]

It could be something like this, that tissue compartments like the brain and nervous system in some people are less protected or more vulnerable, allowing ME/CFS-associated viruses like enterovirus and EBV to break into and infect these tissue compartments.



Dr Chia observed that giving immune-suppressing corticosteroid drugs (such as prednisone) to the patient during the initial acute enterovirus infection was a recipe for triggering ME/CFS. So it seems from Chia's observation that if there is some immunosuppression at the time you catch your acute viral infection, this may be a crucial factor that determines to whether you go on develop ME/CFS or not from the virus.

See this thread: Corticosteroids (Steroids) Such as Prednisone Given During an Acute Viral Infection May Cause ME/CFS

This may explain why stress has been reported as a factor associated with the onset of ME/CFS: stress raises cortisol, which then has an immunosuppressive effect. Dr Chia mentions this in a video interview here.

But other factors might also be immunosuppressive, such as exposure to mold toxins or pesticides. So these factors, if they are present at the same time as the acute viral infection, may be a recipe for triggering ME/CFS.

@Hip do you know if CFS patients with enteroviral infection tend to do worse on corticosteroids or things that lower theimmune system?

 

[Hip]

@Hip do you know if CFS patients with enteroviral infection tend to do worse on corticosteroids or things that lower theimmune system?

ME/CFS patients trying corticosteroids feel a lot better in the short term (in fact in this post one patient finds he is able to go the gym without any PEM repercussions if he takes corticosteroids just beforehand); but I remember reading that patients taking corticosteroids daily for months tend to get worse, suggesting that it may allow viral infections to worse (though I can't find a reference for that at the moment).

Low dose corticosteroids are a different story, and some ME/CFS patients benefit from with that. But normal dose corticosteroids I believe will end up making you worse in the long term, but may be used on a one-off basis now and then to reduce ME/CFS symptoms.

 

[knackers323]

@Hip i wondered if you happened to know specifically for those with enterovirus infection as probable cause.

I've just tested positive at arup labs and used high dose prednisone to live off for about a year at one point years ago. Don't think it lowered my base level.

I also tend to feel better on immune suppressants so that kind of muddys the waters as ongoing entero virus infection as being the issue.

I also don't have any viral symptoms

 

[Hip]

I've just tested positive at arup labs and used high dose prednisone to live off for about a year at one point years ago. Don't think it lowered my base level.

Maybe you might like to post your full ARUP results in this thread.

 

[Hip]

@@Hip i wondered if you happened to know specifically for those with enterovirus infection as probable cause.

I've just tested positive at arup labs and used high dose prednisone to live off for about a year at one point years ago. Don't think it lowered my base level.

I also tend to feel better on immune suppressants so that kind of muddys the waters as ongoing entero virus infection as being the issue.

I also don't have any viral symptoms

I don't really know the answer to your question, if immunosuppressants like steroids will be worse for enterovirus ME/CFS or herpesvirus ME/CFS.

But I think a lot of ME/CFS patients will feel better on corticosteroids, probably because it is the immune response against the virus that may cause the ME/CFS symptoms, so if you lower this response with corticosteroids, you might expect your ME/CFS symptoms to improve.

Interesting that you took high dose corticosteroids for a year without noticing any deterioration in your ME/CFS. I wonder if any other ME/CFS patients have done that. Maybe we should do a poll. Normally there is this trepidation that patients have about using high dose corticosteroids, which I think comes from fear of worsening the ME/CFS.

When you say you don't have any viral symptoms, do you mean things like fever, sore throat, and flu-like symptoms or gastrointestinal symptoms?

 

[knackers323]

I don't really know the answer to your question, if immunosuppressants like steroids will be worse for enterovirus ME/CFS or herpesvirus ME/CFS.

But I think a lot of ME/CFS patients will feel better on corticosteroids, probably because it is the immune response against the virus that may cause the ME/CFS symptoms, so if you lower this response with corticosteroids, you might expect your ME/CFS symptoms to improve.

Interesting that you took high dose corticosteroids for a year without noticing any deterioration in your ME/CFS. I wonder if any other ME/CFS patients have done that. Maybe we should do a poll. Normally there is this trepidation that patients have about using high dose corticosteroids, which I think comes from fear of worsening the ME/CFS.

When you say you don't have any viral symptoms, do you mean things like fever, sore throat, and flu-like symptoms or gastrointestinal symptoms?

@Hip
Sorry for late reply I'm just seeing your post now.

Maybe I do have viral symptoms.
I have an unusual hot feeling that i think is caused by some alteration on the nervous system or cytokines or inflammation or something. It's not like a regular fever.

It's directly related to physical movement and how far into energy deficit I am.

Over the years I have on and off had sore glands in the neck. They actually are now. I have no flu like symptoms or stomach symptoms but my illness began with the worst bout of stomach cramps I've ever had.

I actually just seen a dr about the enteroviral antibodies results I have. He told me its bullshit because he can prove that I don't have a current infection because my neutrophils, whole blood count, esr and crp were all in normal range.

He says without evidence of inflammation there can be no infection.

Are you aware if others who have tested positive to the entero titres or other low level infections had any other signs of infection and inflammation?

Particularly those who have gotten results from treating the enterovirus

 

[Hip]

He says without evidence of inflammation there can be no infection.

You might want to get your doctor to look up non-cytolytic enterovirus in Google, a form of enterovirus that was only discovered in the last 20 years. These non-cytolytic infections can smolder away inside cells for years, but not create much in the way of inflammatory markers.

Are you aware if others who have tested positive to the entero titres or other low level infections had any other signs of infection and inflammation?

Inflammation no, because I believe standard blood tests for inflammation usually come out negative in ME/CFS, but if you do the right tests, you can find ongoing inflammation. One Japanese study found ongoing inflammation in the brains of ME/CFS patients (and other studies found chronic enterovirus infections in ME/CFS patient brains).

But I think the chronic sore throat symptoms that many ME/CFS patients have are a sign of ongoing viral infection. The very first symptom my virus caused was a bad sore throat, and this sore throat never went away, and I still have a mild sore throat today, 15 years after I first caught my ME/CFS-triggering virus.

 

[halcyon]

He told me its bullshit because he can prove that I don't have a current infection because my neutrophils, whole blood count, esr and crp were all in normal range.

That may be true of acute infection but chronic infection works differently.

 

[knackers323]

@Hip @halcyon so having positive neutralisation results with no other tests showing infection or inflammation is common with enterovirus?
Is this the case with both of you?

 

[Hip]

My C-reactive protein (CRP) was certainly normal, in spite of the my high coxsackievirus B4 titers.

 

[Stretched]

I was recently reading some of Dr John Chia's findings, and it suddenly occurred to me that his work and observations may have proved that enterovirus causes ME/CFS. The following explains my logic of why his observations provide proof.

Executive Summary:

Numerous studies dating back to the 1980s have demonstrated an association between enteroviruses and ME/CFS.

However, as we know, association does not by itself imply causation, and proving that enterovirus actually causes ME/CFS requires further evidence... .

Now Dr Chia has noted that CVB3 and CVB4 are the two most common enteroviruses he finds in ME/CFS patients as active infections (then less frequently, he finds CVB2, EV6, EV7 and EV9 as active infections).

So Dr Chia finds both CVB3 and CVB4 are strongly associated with ME/CFS; yet interferon is effective for fighting CVB3, but not CVB4....

I find it amazing that Dr Chia, one of the ‘good guys’ can stay motivated after chasing these worn out enteroviruses for so long. I think he’s been around ~30 years (less time than Cheney?). I know of one case locally where he used my then doc to administer his anti enterovirus treatment successfully; but the patient didn’t refer to her illness as CFS - something ‘ beyond sick’ to having a life again. (I spoke to her after she reached out hoping for more detail and similar treatment.) FWIW, I sent my file to Dr. Chia at that time ~8 years back with some lab work only showing acive CMV = HHV5. It didn’t seem to interest him. He canceled another callback - strange, IMO, inferring he couldn’t treat it=&

 

[halcyon]

@Hip @halcyon so having positive neutralisation results with no other tests showing infection or inflammation is common with enterovirus?
Is this the case with both of you?

I have intermittent monocytosis and chronic eosinophilia. ESR ranges between 0 and 2 as is common in ME.