Seeing Dr John Chia on Friday, What Questions Should I Ask?

[mrmichaelfreedmen]

Fantastic post @Jesse2233! You do indeed get the greatest information from Dr Chia.



Yes, Dr William Weir reports that his ME/CFS patients only started seeing signs of recovery around the 3rd or 4th month on tenofovir. Although Dr Weir says that some patients had IRIS-like features during the initial three months of treatment (the IRIS-like features might be an early indication of the drug working, but I am not clear whether these features were only present in patients who later went on to get a beneficial response from tenofovir, or whether these features were also present in patients who ultimately did not benefit from this drug).

Dr Weir's report is here:

Spoiler: Dr Weir's Report on Tenofovir

Weir, William RC, FRCP FRCP (Edin).

Subject: Successful treatment of ME/CFS with antiretroviral

I am an infectious disease physician with an interest in ME/CFS. I am retired from the UK National Health Service now but retain my interest in ME/CFS and continue to see and treat patients with this condition. I wish to report some preliminary observations.

I have prescribed the antiretroviral, tenofovir, in the treatment of ME/CFS. I have three patients with ME/CFS who recovered whilst being given this drug. Signs of recovery did not appear until the third/fourth month. Two of them had IRIS like features during the first three months of treatment reminiscent of what I have seen in the treatment of HIV infection. I have also had to stop the tenofovir in 3 other patients in whom there was no beneficial response after 5 months. One of these was also having severe IRIS like symptoms and felt unable to carry on with the drug. In the recovered patients, I think placebo response was an unlikely explanation insofar as there was no beneficial effect until the 3rd/4th month. The occurrence of IRIS in two of them is highly suggestive to me of successful treatment of an immune-suppressing retrovirus. Could this be a HERV?

I now have 6 other patients on tenofovir, but all are within 3 months of starting the drug, and I do not expect any beneficial effects as yet. I intend to report on these when they have completed 4 months of treatment.

Of interest is that the apparent beneficial effects in Rituximab treated patients took a minimum of 16 weeks to appear. With the benefit of some (informed) guesswork I think that a retrovirus is the root cause of ME/CFS and that its preferred residence are CD20 cells, just as the preferred residence of HIV are CD4 cells. I am very excited by the response of the patients I have described and feel very strongly that a full double blind, randomised, controlled trial with close monitoring of immunological parameters is now warranted using antiretroviral therapy. As I am now retired I am not in a position to organise this but would be very happy to provide input based on my experience of seeing approximately 2,000 patients with ME/CFS.

Excellent. Have been looking for this. Has anyone come across the tenofovir dose ?

 

[mrmichaelfreedmen]

Fantastic post @Jesse2233! You do indeed get the greatest information from Dr Chia.



Yes, Dr William Weir reports that his ME/CFS patients only started seeing signs of recovery around the 3rd or 4th month on tenofovir. Although Dr Weir says that some patients had IRIS-like features during the initial three months of treatment (the IRIS-like features might be an early indication of the drug working, but I am not clear whether these features were only present in patients who later went on to get a beneficial response from tenofovir, or whether these features were also present in patients who ultimately did not benefit from this drug).

Dr Weir's report is here:

Spoiler: Dr Weir's Report on Tenofovir

Weir, William RC, FRCP FRCP (Edin).

Subject: Successful treatment of ME/CFS with antiretroviral

I am an infectious disease physician with an interest in ME/CFS. I am retired from the UK National Health Service now but retain my interest in ME/CFS and continue to see and treat patients with this condition. I wish to report some preliminary observations.

I have prescribed the antiretroviral, tenofovir, in the treatment of ME/CFS. I have three patients with ME/CFS who recovered whilst being given this drug. Signs of recovery did not appear until the third/fourth month. Two of them had IRIS like features during the first three months of treatment reminiscent of what I have seen in the treatment of HIV infection. I have also had to stop the tenofovir in 3 other patients in whom there was no beneficial response after 5 months. One of these was also having severe IRIS like symptoms and felt unable to carry on with the drug. In the recovered patients, I think placebo response was an unlikely explanation insofar as there was no beneficial effect until the 3rd/4th month. The occurrence of IRIS in two of them is highly suggestive to me of successful treatment of an immune-suppressing retrovirus. Could this be a HERV?

I now have 6 other patients on tenofovir, but all are within 3 months of starting the drug, and I do not expect any beneficial effects as yet. I intend to report on these when they have completed 4 months of treatment.

Of interest is that the apparent beneficial effects in Rituximab treated patients took a minimum of 16 weeks to appear. With the benefit of some (informed) guesswork I think that a retrovirus is the root cause of ME/CFS and that its preferred residence are CD20 cells, just as the preferred residence of HIV are CD4 cells. I am very excited by the response of the patients I have described and feel very strongly that a full double blind, randomised, controlled trial with close monitoring of immunological parameters is now warranted using antiretroviral therapy. As I am now retired I am not in a position to organise this but would be very happy to provide input based on my experience of seeing approximately 2,000 patients with ME/CFS.

Signs of recovery did not appear until the third/fourth month. - Similar time frame given on this thread for Lamivudine.

 

[perrier]

The biopsy was done and was positive for enterovirus. Is it still useful to do the Arup test? Or ultimately, does it not really matter which enterovirus one has?

I heard that Equilibrant was not that well tolerated by women. Is this correct?

And is it correct to conclude that at this moment there is no treatment to combat the enterovirus, except for the herb?

And what would the prognosis be for those who have been ill for some years?

Very interesting thread.

 

[Jesse2233]

Ninety miles is a long trip. How big is the machine you are renting/buying? What has it done for you so far?

There was a great neuroimmunologist down here, but he is having a major health problem and not currently seeing patients. Have you Google “neuroimmunologist” plus your city? I think they tend to work at university medical centers.

I meant 90 minutes, but either way a long drive!

The unit I'm renting is pretty big (7.5 feet long). It's the Vitaeris by OxyHealth

So far HBOT gives me a very noticeable improvement in brain fog and energy for several hours that feels natural. I also feel a deep sense of calm and healing when I'm in the chamber (after I've adjusted to the experience). Sleep is deeper as well. So far it hasn't made an objective change in POTS (ie actual positional HR), and the benefits mostly wear off after about 12 hours. But for only being 8 sessions in, it's pretty good, and benefit seems to be cumulative as initially I felt a bit worse.

I've read that it can take several hundred sessions to gain substantial and sustained functionality.

@Jesse2233

IV Ozone does not work. Have done 2 dozen infusions with very little to no effect.

DHQ has been similar, went up to 500mg/day.

FYI: Poly-MVA has very limited and poorly constructed in-vitro testing to back it's claims for an over inflated price tag.

Did you ask for his current view regarding the Oxymatrine 50% response rate?

- Is elevated Nagalase still his hypothesis

Yes the literature on Poly-MVA is a bit thin. But I have read some very compelling stories from those who have benefited, and a couple people I trust have sung its praises, so for me it's worth a shot.

I don't think his view has changed on the Oxymatrine response rate, though I suspect it's quite a bit lower for patients outside his care.

And I'm sorry man, I ran out of time to ask him about Nagalase and GcMAF. He does sometimes respond to research emails so you might try asking him through there (although I do not email him because he does not provide email to patients, so it would not be appropriate for me to contact him in that way). If you can't get an answer, I will try to ask when I see him next.

I do know that he does not use GcMAF as a standard treatment

Excellent. Have been looking for this. Has anyone come across the tenofovir dose ?

Dr Weir prescribes monotherapy 245 mg of tenofovir taken once a day, I'm not sure about Dr Chia

The biopsy was done and was positive for enterovirus. Is it still useful to do the Arup test? Or ultimately, does it not really matter which enterovirus one has?

I heard that Equilibrant was not that well tolerated by women. Is this correct?

And is it correct to conclude that at this moment there is no treatment to combat the enterovirus, except for the herb?

And what would the prognosis be for those who have been ill for some years?

Very interesting thread.

These would all be good questions for Dr Chia, but I'll do my best to answer (and maybe @Hip who knows more than me can jump in as well).

The ARUP test can more accurately tell you the enterovirus strain. According to Dr Chia, certain strains (i.e CBV3) respond better to treatments like interferon alpha / gamma and ribavirin, so it might be worth it to know.

As far as I know Equilibrant is equally tolerated by men and women, and several women on this board (including @Timaca and @Diwi9 if I'm not mistaken) have reported benefit from taking it.

There is no targeted anti-viral for enteroviruses but that doesn't stop Dr Chia from trying different drugs, sometimes to good effect.

Some of the drugs he uses (besides Equilibrant and inosine) include lamivudine, tenofovir, ribavirin, and interferon alpha/gamma. Hip or @Never Give Up can jump in if I'm missing something.

Hip also has an excellent list of enteroviral treatments he's researched here.

One antiviral Dr Chia doesn't use (but that some such as @heapsreal have benefited from) is Arbidol.

Prognosis is a tricky thing to answer but Dr Chia has case studies of patients ill for nearly a decade who responded to his treatments.

 

[perrier]

Thanks for all the hard work folks. One day soon I hope there will be a huge reunion full of champagne.

Can one conclude then that from Dr Chia's position it is the enterovirus that is the main culprit for this horrendous disease?

I just looked over my notes from my conversation with Dr Chia, and in two places I wrote down " mold" but didn't add any further comments. So, I can't recall if Dr Chia said anything about mold, or if I brought it up.

But if mycotoxins affect the efficacy of Equilibrandt as I believe was stated earlier, then I have to ask if Dr Chia tests for mold, or even tries to treat it, or if he discusses it. ( My notes are not complete on this one...)

 

[Jesse2233]

@perrier

Yes Dr Chia believes enteroviruses are the primary cause

I asked him about mold once and he said it can make you acutely worse but that it doesn't persist (others obviously have quite different experiences / opinions)

 

[perrier]

@perrier

Yes Dr Chia believes enteroviruses are the primary cause

I asked him about mold once and he said it can make you acutely worse but that it doesn't persist (others obviously have quite different experiences / opinions)

Thanks. OK! Now the other issue I'm having trouble with. If enteroviruses are the cause, how do they cause an autoimmune state in the patient? There seems to be lots of discussion about who is autoimmune and who is not autoimmune.

 

[Jesse2233]

Thanks. OK! Now the other issue I'm having trouble with. If enteroviruses are the cause, how do they cause an autoimmune state in the patient? There seems to be lots of discussion about who is autoimmune and who is not autoimmune.

Good question. Enteroviruses can cause autoimmune diabetes and ANT autoantibodies against mitochondria, so it's certainly possible. If I had to guess I'd say say that pathogen driven autoimmunity plays a big role

 

[perrier]

Going off topic a bit, but still an issue that Dr. Chia deals with.

Two months or perhaps less, after falling ill, the following results came in for enteroviruses:

Coxsackie A9-----2048
Coxsackie B3-----8200
Echovirus 11-----1024

And EBV- EBNA. - 1 IGG----- positive

This test was repeated three times.

A CFS specialist, some months later said these were nothing to worry about.

Much later, the stomach biopsy for enterovirus done by Dr Chia came out positive too.

 

[Hip]

@perrier, you may want to look at this thread for info about enterovirus titer interpretations.

 

[perrier]

@perrier, you may want to look at this thread for info about enterovirus titer interpretations.

Thanks HIP! You are a goldmine, I hope you know that.

These tests were performed in a Canadian hospital by the Neutralization method.

I guess it might be worth it to do the Arup tests, however, I'm not sure. Any thoughts Hip?

 

[Hip]

These tests were performed in a Canadian hospital by the Neutralization method.

That's interesting you got a neutralization test in Canada. Would you happen to know if that hospital's lab accepts blood samples from patients elsewhere? There is a dire shortage of labs offering coxsackievirus B and echovirus antibody tests by neutralization, so it would be great if ME/CFS patients could use this hospital's lab, especially if it were cheaper that ARUP.

I read somewhere (though it is unconfirmed) that ARUP have stopped accepting blood samples from abroad (except perhaps Canada), and there is no longer any lab in Europe that provides neutralization tests for enterovirus, to my knowledge.


In terms of interpretation: Each lab has its own range, so you cannot directly compare your neutralization test results to ARUP's, but I would think that with these very high titers of 1:8200 and 1:1024, your CVB3 and EV11 would be classed as active infections (coxsackievirus A is not involved with ME/CFS, so I think that's nothing to worry about). Dr Chia says that ARUP titers of 1:320 and higher are evidence of an active enterovirus infection. Thus you might benefit from the treatments Dr Chia uses, such as oxymatrine and Epivir. I am not sure why the ME/CFS specialist said your high titers are nothing to worry about.

 

[mrmichaelfreedmen]

Good question. Enteroviruses can cause autoimmune diabetes and ANT autoantibodies against mitochondria, so it's certainly possible. If I had to guess I'd say say that pathogen driven autoimmunity plays a big role

Correct. Also Cardiomyopathy/Myocarditis is another pathogen driven condition, latest research points to Enteroviruses.

 

[frederic83]

This is interesting to me. When I first began looking into my symptoms, I thought chronic EBV infection could be my issue, and found this paper on cytotoxic T cell therapy for EBV. I ended up corresponding with one of the authors, who encouraged me to get an EBV PCR, which was negative, so I began looking elsewhere. I guess that if CVB infection is the problem, then T cell therapy could be something, but hadn't thought about it. Can anyone link me to the "T cell expansion findings of Mark Davis"?

Interesting. Have you done an antibodies test ? There is a theory by Dr Lerner that says EBV can be non permissive and thus you won't find a lot virus in the blood, likewise enterovirus.
T cell therapy is an interesting treatment, Eriksen also mentions it to cure EBV in ectopic lymphoid structures.

 

[used_to_race]

Just wanted to bump my previous post in this thread because it came up at the end of a page, and it's taking the mods forever to approve any of my posts (I guess because I'm new here?). Anyone have any thoughts on this stuff?

Another thing for ya'll to look at: I'm currently watching the Biology 3310/4310 lectures from Columbia University (Virology 101), and in lecture 5, at around the 1-hour mark, the professor (who is a poliovirus expert) mentions an antiviral drug which binds strongly to lipid receptors, blocking poliovirus from sensing a key trigger in its infectious cycle. The virus is unable to uncoat, so it can't release its genome. I looked into this because obviously poliovirus is an enterovirus, and found this paper. The drug is called Disoxaril (W55717), but I don't think anybody uses it because, as Dr. Racaniello mentions in the lecture, antiviral resistance is a big concern with this compound. Any thoughts on this?

Also, just got an appointment with Dr. Chia confirmed!!! Such a big boost to my outlook to have some concrete hope for the future. I have to wait till February 16th though, which is a bit of a bummer. I'm making my own list of questions I want to ask him, and I have those in a google doc which you guys can feel free to look at and discuss. Some of them are pretty specific to my personal case, but whatever.

 

[used_to_race]

Interesting. Have you done an antibodies test ? There is a theory by Dr Lerner that says EBV can be non permissive and thus you won't find a lot virus in the blood, likewise enterovirus.
T cell therapy is an interesting treatment, Eriksen also mentions it to cure EBV in ectopic lymphoid structures.

Yeah I've read most of Dr. Lerner's publications, not sure how I feel about an intracellular incomplete viral replication cycle, but what do I know? After getting mono, I was IgM positive for EBV for about a year, until after my first course of Valtrex (4 weeks). Haven't really checked regularly since then, but since I'm still sick, I wouldn't be surprised if I went positive again. I definitely get more little cold sores and pimples when I'm not taking Valtrex, but I don't ever get outbreaks, so I think that's probably EBV-related rather than HSV-1 related.

 

[Mollymolly]

Hi are you familiar with dr.Enlander protocol "

 

[mrmichaelfreedmen]

FYI: I am finding the 1500mg dose of Famciclovir helpfull, the 500mg dose did nothing for me for many months. I know this is a herpies antiviral, but it is helping me at the minimum dose Dr Leaner reccomends and am not sure why.

*I tested positive for HHV6 many many years ago, and strongly positive for EV recently by Dr Chia.

 

[Hip]

@Jesse2233, just a quick question: When you went to see Dr Chia, did he also test your for herpesvirus infections (EBV, HHV-6, cytomegalovirus) and if so, do you know which herpesvirus tests he used?

 

[used_to_race]

@Hip I'm seeing Dr. Chia next month and initially he tested me for HHV6 and CMV but not EBV. Not sure which tests he used specifically, as I didn't keep a copy of the Quest form.