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

[Gingergrrl]

@Sancar will PM you probably tomorrow vs. tonight and don't want to side track the thread either! Someone mentioned how Dr. Chia treated pericarditis so it was relevant & important but we'll get it back on track LOL

 

[Hip]

Pardon me but who is Michael VanElzakker?

He is the originator of the vagus nerve infection hypothesis of ME/CFS. If you search this forum for his name, you'll get dozens of posts about his vagus infection theory of ME/CFS.

 

[Gingergrrl]

He is the originator of the vagus nerve infection hypothesis of ME/CFS. If you search this forum for his name, you'll get dozens of posts about his theory of ME/CFS.

Also, and I have no idea when it becomes available to watch or if it already is, Dr. VanElzakkar is featured in "Forgotten Plague" and discusses this theories there, too.

 

[Sancar]

Thank you @Gingergrrl - it's been a while since I watched "Forgotton Plague". I saw it on Amazon. I hope it's still available. It's good to rewatch and review points from that wonderful film.

 

[Sancar]

@Hip - Thank you that was great information I hadn't found.

 

[tntntwins]

@tntntwins ~ may I ask "He" who/or which Dr prescribed the Colchicine and Indocin combo? Also what was the doseage? Does your daughter have any symptoms of idiopathic gout as well? Personally I suffer from pericarditis along with sever angina that leave me flat on my back. I was diagnosed with pericarditis when I was 17 (a long time ago). I maintained it with no problem for decades on Inderal. Now I take a mantenice dose and Colchicine for idiopathic gout.
@Hip - A question for you, do you know of another function for 'antiviral' or 'immune modulating' effect Colchicine could have? I noted that a few ME/CFS Drs use it for thief patients~~ Thank U

"He" is Dr. Chia. Dosage .6mg colchicine twice a day. 50mg Indocin twice a day. She has since been lowered to 50mg of Indocin once a day.

 

[fireflymd]

I looked at the ingredients in Equilibrant. Is this what Dr. Chia is using? This product is basically herbal anti-virals of astralgus and olive leaf extract as well as mushroom extracts which can increase NK cells.

Is this all he presently uses as an ant-viral?

Apologies if I missed other treatments he uses in this thread. I think I saw IVIG as well.

 

[Basilico]

Pardon me but who is Michael VanElzakker? Do you have an article he published? I would really appreciate a link or reference.

@Sancar , this is a transcript of an interview with VanElzakker I read a little while ago - it's is really fascinating! I'm convinced this is definitely my husband's issue since he has very screwed up vagus nerve reactions.

https://healinghistamine.com/harvar...an-elzakker-chronic-fatigue-vagus-nerve-link/

 

[halcyon]

I looked at the ingredients in Equilibrant. Is this what Dr. Chia is using?

Yes it is. He is the one that developed the product.

Is this all he presently uses as an ant-viral?

He has also used things like lamivudine, amantadine, ribavirin, interferon, tenofovir, inosine, and probably others that I'm forgetting. Not all or any of these things will necessarily have an effect in every case.

 

[Shoshana]

this is a transcript of an interview with VanElzakker I read a little while ago - it's is really fascinating! I'm convinced this is definitely my husband's issue since he has very screwed up vagus nerve reactions.

https://healinghistamine.com/harvar...an-elzakker-chronic-fatigue-vagus-nerve-link/

HI all,
I apologize that I have not read the beginning posts of this thread so I might be off-topic, with my own post here.

But I just read SOME of this linked interview and it is pretty interesting. I hope to be able to check it out more, another day. Does he end up making specific recommendations for people to try, while they wait for continued research in that direction?

 

[Basilico]

HI all,
I apologize that I have not read the beginning posts of this thread so I might be off-topic, with my own post here.

But I just read SOME of this linked interview and it is pretty interesting. I hope to be able to check it out more, another day. Does he end up making specific recommendations for people to try, while they wait for continued research in that direction?

@Shoshana , In a nutshell, a little bit of both

They are currently working on some different ways to verify vagus nerve infection with MRIs and PET scans.

He talks about the potential of combining specific antivirals with anti-inflammatories (to reduce glial activation), and says that it is really important to use the proper antiviral for the specific virus the person has, just taking a bunch of different antiivirals looking for improvement might actually be counterproductive and cause more harm than good.

He also says that at this point, there is not a good treatment available, the best thing CFS/ME patients can do is mostly what they've figured out for themselves; rest, not to overexert themselves and cause PEM, mitigate symptoms as much as possible.


I read this interview a few years ago, so it's likely he's published some updates on his findings...I'm going to do a little digging and see if I can find new information (It's probably even somewhere here on PR already!)



Edit: looks like VanElzakkar is in the process of conducting two small scale studies using imaging equipment to identify vagal nerve activation in CFS/ME patients. If he has good results, he will use this as the basis to apply for a grant for a large scale study.
http://www.meaction.net/2016/12/12/dr-vanelzakker-two-new-mecfs-studies-at-harvard/

 

[JES]

I looked at the ingredients in Equilibrant. Is this what Dr. Chia is using? This product is basically herbal anti-virals of astralgus and olive leaf extract as well as mushroom extracts which can increase NK cells.

Is this all he presently uses as an ant-viral?

Apologies if I missed other treatments he uses in this thread. I think I saw IVIG as well.

The primary ingredient in Equilibrant is oxymatrine, which is both an immunomodulator and enterovirus antiviral. If you can't get hold of Equilibrant, Dr. Chia recommends just plain oxymatrine, which can be bought from herbal shops online. So those other ingredients are not as important as oxymatrine in his regimen.

 

[fireflymd]

Ok--it looks like the sophora root is the oxymatrine.

 

[Shoshana]

Thank you for that info, @Basilico !

I have difficulties with both of the major nerves he mentioned in tht first article.

I have not yet looked at your 2nd link.

 

[Shoshana]

looks like VanElzakkar is in the process of conducting two small scale studies using imaging equipment to identify vagal nerve activation in CFS/ME patients. If he has good results, he will use this as the basis to apply for a grant for a large scale study.
http://www.meaction.net/2016/12/12/dr-vanelzakker-two-new-mecfs-studies-at-harvard/

Another fantastic link, @Basilico

Thank you!

 

[Sancar]

@Basilico~ Thank you for that link. Really great info. I wish we could see him as a Dr for reatment.

 

[Jesse2233]

Hey everyone, I'm seeing Dr Chia again on Wednesday. I have a second set of questions, let me know what you think...

1. Can we increase to 70g of IVIG Gammunex-C split into two days infused over 6 hours?

2. Do you think plasmapheresis could be helpful in conjunction with IVIG?

3. My recent blood test shows elevated pyruvate and very low cis-aconitate implying metabolic dysfunction in the Krebs cycle and low ATP output. Besides using Equilibrant and IVIG upstream, is there a way to directly treat the aconitase enzyme?

4. Are you able to prescribe weekly IV saline for suspected low blood volume (due to low ADH) or a Daxor blood volume test?

5. Stachybotrys black mold was found at the house I was staying in right after I got sick. Do you believe this contributed to the severity of my illness, and would advise a mold protocol using gentle binders to detoxify?

6. Any updates on Compound 17 CBV4 antiviral from Rega?

7. Could Plecenoril or DRACO be helpful?

8. Some studies have shown interferon-B is useful in CBV myocarditis. Have you ever tried this on patients?

9. Some studies show Enteroviruses create autoantibodies that attack the heart and decrease its energy. Do you believe this could be happening with me? And if so, is there a good way to test for and treat those autoantibodies?

10. I tested equivocal for Lyme on an IgeneX test. Is this significant or can I ignore it?

11. What do you think of Ron Davis' research rapidly testing drugs on in vitro serum to induce better tolerance to electrical impedance?

12. What do you think of Kenny DeMeirleir's LPS hypothesis?

 

[Hip]

6. Any updates on Compound 17 CBV4 antiviral from Rega?

If Chia is able to give you a fuller name for this CVB4 antiviral compound, that would be interesting to learn. It may be a code name along the lines of RG-1234 or something like that.

9. Some studies show Enteroviruses create autoantibodies that attack the heart and decrease its energy. Do you believe this could be happening with me? And if so, is there a good way to test for and treat those autoantibodies?

I'd be very interested in hearing Dr Chia's thoughts on this, as this is a hypothesis of ME/CFS that dates back to the 1985 paper by Behan et al.

I have been trying to get in touch with the German myocarditis researchers who originally discovered these enterovirus-induced autoantibodies that target the ADP/ATP translocator protein in mitochondria. I asked them in my email whether they think the same enterovirus-induced mitochondrial autoantibody that lowers energy levels in the heart in chronic enterovirus myocarditis might also be responsible for creating the low energy state of ME/CFS.

But they have not answered my emails.

 

[Hip]

One question you could ask Dr Chia if you don't mind is: Does oxymatrine only work for enterovirus-associated ME/CFS, or can oxymatrine also be used to treat ME/CFS associated with other viral infections, such as EBV, cytomegalovirus and HHV-6?

 

[Jesse2233]

If Chia is able to give you a fuller name for this CVB4 antiviral compound, that would be interesting to learn. It may be a code name along the lines of RG-1234 or something like that.

Good point, I'll try to get that

I'd be very interested in hearing Dr Chia's thoughts on this, as this is a hypothesis of ME/CFS that dates back to the 1985 paper by Behan et al.

Thanks for providing the paper, I was having trouble remembering it.

One question you could ask Dr Chia if you don't mind is: Does oxymatrine only work for enterovirus-associated ME/CFS, or can oxymatrine also be used to treat ME/CFS associated with other viral infections, such as EBV, cytomegalovirus and HHV-6?

You got it Hip!