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

Gingergrrl

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The test is free, and takes about 5 minutes to do online, if you are interested. The test has its own baseline; you don't have to comparison to previous scores; you take the test, and it tells you whether or not you may currently be affected by biotoxins.
I actually am very curious about this and will ask you for more info later since I know I won't get a chance to do the test today or tomorrow. Also, do you understand the mechanism for how a vision test would determine how well someone can detox mold?! Lastly, I wear either glasses or contact lenses (since 12 yrs old) and assume I would wear them for the test (otherwise I am blind and will automatically fail it)!
 

Hip

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I actually am very curious about this and will ask you for more info later since I know I won't get a chance to do the test today or tomorrow. Also, do you understand the mechanism for how a vision test would determine how well someone can detox mold?! Lastly, I wear either glasses or contact lenses (since 12 yrs old) and assume I would wear them for the test (otherwise I am blind and will automatically fail it)!
PM me if you need any guidance or help to do the test. The test is simple to do (you need to wear your normal vision correction during the test); the website will tell exactly how far (in terms of feet) you need to have your eyes from the computer screen, so you move your chair until your head is the right distance away, and then take the test.

This VCS test is not keyed on the sharpness of your vision, but rather your ability to detect subtle differences in shades of gray. The retina has neurons in it which do the light sensing and information processing, and I believe VCS test in effect checks the functioning of these neurons of the eye. This check of functioning is a way of gauging the health of these neurons — a health which may deteriorate if they are being affected by neurotoxins like mold toxins.
 

Hip

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Equilibrant tends to help 50% (out of the 1,000 he's given it to), 30% are major responders (like night / day, bedridden to back to work in 3-6 months). 66% effectiveness against coxsackie B. Better in younger patients (considered 30 young), better for men, people early into the illness, and African Americans / Hispanics.
Jesse, just to clarify: did Dr John Chia actually use those words of "like night / day, bedridden to back to work in 3-6 months", regarding the efficacy of oxymatrine / Equilibrant, as far as you can remember?


I am just re-reading your two sets of questions & answers to Dr Chia, listed in your earlier posts here and here. There is some great info there. It fantastic that you posed these questions to Dr Chia.
 

Jesse2233

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I'm seeing Dr Chia again on Monday. These are the questions I have so far. Let me know if anyone wants me to add / has any feedback @Hip @halcyon @Steve4Andrea
  1. If we do a stomach biopsy and find an enterovirus other than CBV4, would that change the selection of treatments?

  2. Would monthly testing of urine organic acids and pro-inflammatory cytokines be useful as indicators of progress?

  3. Shilin Zhang et al have found that CBV4 uses IL-10 to evade the immune system. Might using drugs such as umifenovir or tenofovir which bring down IL-10 in conjunction with an antiviral that targets RNA replication be effective?

  4. Would selective lowering of pro-inflammatory cytokines reduce symptoms and restore functionality even if it doesn’t get rid of the underlying infectIon?

  5. Do you believe hyperbaric oxygen therapy would be useful in fighting the virus in tissue?

  6. Do you believe any of the following drugs target non-cytolytic CBV4 viruses?

    Amiloride, fluoxetine, pirlindole, itraconazole, umifenovir, ribavirin, tenofovir, dipyridamole, inteferon-alpha, amantadine, DHQ?

  7. At what point does it make sense to try interferon alpha / gamma?

  8. Anastasia V. Galochkina et al have shown that you would need the equivalent of 500 mg DHQ daily to match their dosage for mice. Given that Swanson’s brand only has 40mg a capsule, is there a better way to get a higher dose? And would that be safe?

  9. Do you believe I have permanent brain / nerve and other organ damage like in post polio syndrome? For what it’s worth my MRI is normal, though my qEEG is not.

  10. Why did a recent lab show I have auto myocardial and thyroid antibodies?

  11. Is it possible the CBV4 is a secondary opportunistic infection to a different core cause?

  12. The Dubbo studies show that half of those sick at 6 months are recovered by 18 months.

    Do you believe this is accurate? And if so might I still be able to have a career and family?

  13. Any updates on enteroviral RNA detection or the antiviral drugs being developed in Rega?
 

Gingergrrl

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Why did a recent lab show I have auto myocardial... antibodies?
I am very curious what he will say re: why you have the myocardial peptide autoantibodies, too.

The Dubbo studies show that half of those sick at 6 months are recovered by 18 months. Do you believe this is accurate? And if so might I still be able to have a career and family?
I have no idea re: the Dubbo studies and I have heard so many different quotes re: time lengths for illness and recovery. I have been sick for over four years (so am clearly past the six month mark!) but for the first time, I am having significant improvements from treatment and believe that I can achieve remission. I will absolutely never use the word "cure" but I believe remission is possible. I have no doubt that you will have a career and family some day and I would not say that if I did not mean it. It may not be right now or exactly as you envisioned it prior to getting sick, but I believe it will happen.
 

Hip

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Do you believe any of the following drugs target non-cytolytic CBV4 viruses?

Amiloride, fluoxetine, pirlindole, itraconazole, umifenovir, ribavirin, tenofovir, dipyridamole, inteferon-alpha, amantadine, DHQ?
Actually, I have just this moment realized (by rereading the studies) that amiloride's antiviral properties are almost non-existent (the studies say amiloride is a potent antiviral for CVB3, but in fact to get that antiviral effect, you would have to take 140 times the maximum safe amiloride dose, which is out of the question; so for all intents and purposes, amiloride has no useful antiviral effect).



If we do a stomach biopsy and find an enterovirus other than CBV4, would that change the selection of treatments?
Dr Chia's stomach biopsy cannot actually determine which enterovirus you have; it detects the enterovirus VP1 capsid protein, which is common to all enteroviruses. It is only the ARUP Lab blood tests that can determine which enterovirus serotype(s) you have.



I think your question on IL-10 inhibition using umifenovir and tenofovir is a very interesting one. In case you need them, I have 3 references on patients who got better / recovered on tenofovir:
From Dr William Weir:
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.

I have also had to stop 
the tenofovir in 3 other patients in whom there was no beneficial response after 5 months.

In the recovered patients, I think placebo response was an unlikely explanation insofar as there was no beneficial effect until the 3rd/4th month.

Ref: here.
Dr Jamie Deckoff-Jones and her daughter Ali both had improvements in their ME/CFS after taking:

tenofovir (Viread) 300 mg once daily
raltegravir (Isentress) 400 mg twice daily

Ref: here.
Dr Michael Snyderman had success in treating his own ME/CFS with AZT, raltegravir and tenofovir. See his blog post here.
 

halcyon

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If we do a stomach biopsy and find an enterovirus other than CBV4, would that change the selection of treatments?
The stomach biopsy test uses a generic VP1 mAb. It can't tell you what serotype virus it is. You'd have to have the sample sequenced which I believe is quite expensive and still won't give you an exact answer.

The Dubbo studies show that half of those sick at 6 months are recovered by 18 months.
Dubbo study didn't look at enteroviruses at all if I recall correctly.
 

Jesse2233

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I have no doubt that you will have a career and family some day and I would not say that if I did not mean it.
Aw thanks Ginger

I have 3 references on patients who got better / recovered on tenofovir:
Thanks Hip

Dubbo study didn't look at enteroviruses at all if I recall correctly.
Yes, I emailed Prof Lloyd about this and he said the type of virus didn't make a difference including enteroviruses. I made sure to reference Melvin Ramsay as well. Curious as to Chia's take
 

halcyon

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Yes, I emailed Prof Lloyd about this and he said the type of virus didn't make a difference including enteroviruses.
I'm not sure how they would know that if none of the patients they looked at had enterovirus infections. They only looked at EBV, Coxiella burnetii, and ross river virus.
 

Jesse2233

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I'm not sure how they would know that if none of the patients they looked at had enterovirus infections. They only looked at EBV, Coxiella burnetii, and ross river virus.
It's the ageold debate I suppose. Lloyd said the end result is the same set of symptoms and immunological markers but I guess we don't really know.

I could see an argument saying enteroviruses have a different tropism than herpes viruses and thus produce different outcomes. On the other hand, if all roads lead to one cell danger response then it wouldn't matter
 
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I'm seeing Dr Chia again on Monday. These are the questions I have so far. Let me know if anyone wants me to add / has any feedback @Hip @halcyon @Steve4Andrea
  1. Shilin Zhang et al have found that CBV4 uses IL-10 to evade the immune system. Might using drugs such as umifenovir or tenofovir which bring down IL-10 in conjunction with an antiviral that targets RNA replication be effective?

  2. Would selective lowering of pro-inflammatory cytokines reduce symptoms and restore functionality even if it doesn’t get rid of the underlying infectIon?
I will be interested in the answers to these questions as well as my cytokine panel showed high levels of the proinflammatory cytokines since being diagnosed with chronic enterovirus infection via his stomach biopsy. He stated in his oxymatrine patent that CFS patients produced higher levels of interleukin-4, interleukin-10 than controls. With responders to oxymatrine having reduced levels of interleukin-4, interleukin-10 while the non responders pro inflammatory cytokines remain unchanged. This would seem to indicate that reducing these pro inflammatory cytokines is important in restoring function. In his non responders to equilibriant has he tried any other drugs to reduce these pro inflammatory cytokines?

I'm seeing Dr Chia again on Monday. These are the questions I have so far. Let me know if anyone wants me to add / has any feedback @Hip @halcyon @Steve4Andrea

Do you believe any of the following drugs target non-cytolytic CBV4 viruses?
  1. Amiloride, fluoxetine, pirlindole, itraconazole, umifenovir, ribavirin, tenofovir, dipyridamole, inteferon-alpha, amantadine, DHQ
I know he has prescribed fluoxetine, interferon alpha and gamma and DHQ but with what success I am unsure of? It would be good to know if he has tried successfully with any of the other drugs?
 
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At what point does it make sense to try interferon alpha / gamma?

Anastasia V. Galochkina et al have shown that you would need the equivalent of 500 mg DHQ daily to match their dosage for mice. Given that Swanson’s brand only has 40mg a capsule, is there a better way to get a higher dose? And would that be safe?

Any updates on enteroviral RNA detection or the antiviral drugs being developed in Rega?
Interested in hearing his response to these questions, Thanks Jesse
 

fireflymd

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I will be interested in the answers to these questions as well as my cytokine panel showed high levels of the proinflammatory cytokines since being diagnosed with chronic enterovirus infection via his stomach biopsy. He stated in his oxymatrine patent that CFS patients produced higher levels of interleukin-4, interleukin-10 than controls. With responders to oxymatrine having reduced levels of interleukin-4, interleukin-10 while the non responders pro inflammatory cytokines remain unchanged. This would seem to indicate that reducing these pro inflammatory cytokines is important in restoring function. In his non responders to equilibriant has he tried any other drugs to reduce these pro inflammatory cytokines?
Hope01, at what lab was your cytokine panel done?
 

Jesse2233

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Saw Dr Chia today. Before I post the answers I was surprised to learn he has read this thread!

He said "I saw your blog" and I was confused at first because I don't have a blog, and then I realized he was talking about this post. He said it was ok to post, but to make sure I let people know about the viral etiology, which I certainly try to do!

-------------

1. The Dubbo studies show that 2/3 of those still sick at 6 months are recovered by 24 months. Do you believe this is accurate?

Doesn't believe in the Dubbo studies. Quoted general CDC statistics, but thinks I will get better

2. Shilin Zhang et al have found that CBV4 uses IL-10 to evade the immune system. Might using drugs such as umifenovir or tenofovir which bring down IL-10 be effective? 


Is not familiar with this study. Thinks IL-10 is important in EBV

Said we could try tenofovir, but he wants to try lamivudine first. Says 1 out of 3 patients respond well to lamivudine ("if you're responding you'll be able to tell"). Says that response rate is a bit lower for tenofovir


3. My IL-6 and IFN-y levels have gone down since starting IVIG. Is this a sign of progress? 


Best sign of progress is symptomatic improvement

4. Would monthly testing of urine organic acids and pro-inflammatory cytokines be useful as indicators of progress? 


No

5. Do you believe I have permanent irreparable brain damage (like in post polio syndrome) from CBV4? How can we
tell the difference between a chronic enterovirus infection and post viral brain damage where there is no longer an infection? 


Does not think there is permanent brain damage given people recovering and having cognitive function return

6. Do you believe intermittent prolonged total resting throughout the day can help fight the enterovirus or repair the brain? 


No but don't do aerobic exercise

7. Why did a recent lab show I have a-1-adrenergic, myocardial, and thyroid antibodies?

Immune response to virus, antibodies are not significant

8. Do you believe hyperbaric oxygen therapy would be useful in fighting intracellular CBV4 or in repairing brain damage?

No

9. At what point does it make sense to try interferon alpha / gamma? 


Not good for CBV4

10. Do you believe any of the following drugs target non-cytolytic CBV4 viruses?

 umifenovir, amiloride, fluoxetine,
itraconazole, umifenovir, ribavirin, tenofovir, dipyridamole, inteferon-alpha, amantadine


Doesn't know, was not familiar with umifenovir

11. Is there any contraindication with taking bupropion? 


No, but thinks trintellix is better

12. Would selective lowering of pro-inflammatory cytokines reduce symptoms and restore functionality even if it doesn’t get rid of the underlying infectIon? 


Maybe

13. Anastasia V. Galochkina et al have shown that you would need the equivalent of 500 mg DHQ daily to match their effective dosage for mice. Given that Swanson’s brand only has 40mg a capsule, is there a better way to get a higher dose? And would that be safe? 


Doesn't know. Sees people respond (positive or negative) to 1 capsule of DHQ so that tells him it does something even at low dose. Says Hispanics and those with pain respond best to DHQ

14. Is it possible CBV4 is a secondary opportunist infection to a different core cause? 


No

15. Any updates on enteroviral RNA detection methods? What about the antiviral CBV4 drugs being developed in Rega? 


No updates. He will likely meet with the Rega team next year when he travels to Europe. Thinks that once an effective antiviral is found, the FDA will approve it quickly