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

[Hip]

Will try to get all the questions answered and report back

I look forward to it, Jesse2233.

 

[msf]

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

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

I just want to point out that, in ME terms, this is not just a hypothesis anymore after Hanson´s study, unless the hypothesis is that the proven (in one, large for ME study) raised levels of LPS are having an effect on the body, which I would say is a pretty sure thing.

 

[Jesse2233]

Had my appointment with Dr Chia today. He was generous with his time, we spoke for 45 minutes.

1. Can we increase to 70g of IVIG Gammunex-C split into two days infused over 6 hours each day?
   
   Yes, although more IVIG is not always better.
   
   It calms the immune system down and that can vary by patient. It's best for POTS and autoimmune. Not sure about it's effects on enteroviruses because he's not done a trial of it due to the cost.
   
   
2. Do you think neurofeedback therapy could be effective in treating damage to the brain / CNS caused by enteroviruses?
   
   It may help with anxiety.
   
   
3. Might a stomach biopsy show a different type of enterovirus and make me a better candidate for interferon?
   
   No. The stomach biopsy just shows the presence of enterovirus RNA, not the specific ones.
   
   
4. Are you able to prescribe weekly IV saline for suspected low blood volume (due to low ADH) or a Daxor blood volume test?
   
   Thinks benefits of IV saline are placebo, just drink salt water
   
   
5. Do you think plasmapheresis could be helpful in conjunction with IVIG?
   
   No because it will not help with a chronic virus
   
   
6. Do you think my HHV-6 (21.38), EBV (547), and CpN IgG (1:256) titers are significant? And if so can Equilibrant treat those infections as well?
   
   These levels are not significant, but he has seen Equilibrant substantially bring down HHV-6 titers in another patient.
   
   
7. Do you think a SPECT scan and interpretation by Dr Byron Hyde would be useful in assessing the extent of potential brain damage?
   
   Does not think it would be helpful because SPECT scans are not conclusive and low blood flow can mean many different things including depression. Does not think enough studies have been done connecting SPECT scans to CFS/ME
   
   
8. 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?
   
   Thinks this is caused by enteroviruses binding the mitochondria and stealing ATP. Has seen amino therapy help some to an extent but thinks the best treatment is a good diet
   
   
9. How much oxymatrine is in Equilibrant?
   
   "A lot" but would not specify further
   
   
10. 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?
    
    Probably didn't help, but it's likely out of my system by now due to the short half-life of the toxin.
    
    
11. Do you think fecal matter transplants would be of any use?
    
    No, thinks microbiome abnormalities are caused by enteroviruses and you need to treat the enterovirus.
    
    
12. I tested equivocal for Lyme on an IgeneX test. Is this significant or can I ignore it?
    
    Ignore it, "it's BS"
    
    
13. Any updates on Compound 17 CBV4 antiviral from Rega? And are you able to provide the code name of the drug so I might track its progress?
    
    Couldn't remember the code name. Said he spoke with them 3 months ago and they're showing promising results for its actions in the brain.
    
    
14. Could Plecenoril or DRACO be helpful in treating CBV4?
    
    He said Plecenoril only worked in 1 of 6 patients he tried it on and no longer uses it because it's not available.
    
    He thinks DRACO is interesting and Todd Rider, the researcher behind it, is brilliant, but wonders if it can penetrate the brain. He has not be able to get in contact with Todd Rider although he tried.
    
    
15. In their 1985 paper, Behan PO, Behan WM, Bell EJ. state that enterovirus-induced autoantibodies target the ADP/ATP translocator protein in mitochondria. Do you believe this could be happening with me? And if so, is there a good way to test for and treat those autoantibodies?
    
    He said he would love to someday meet Behan and that his work is brilliant. But thinks that he went down the wrong track looking at autoimmunity because he perhaps got discouraged by the lack of interest in his enterovirus work.
    
    
16. In his 2003 paper, Uwe Kühl et al state that interferon-β is useful in CBV4 myocarditis. Have you ever tried this interferon on patients?
    
    Interferon-β's positive effects only last 3-6 months. At 12 months there is no difference.
    
    
17. Do you think Dr Kenny DeMeirleir's lipopolysaccharide hypothesis plays a role in the disease?
    
    LPOs play a role in terms of leaky gut, but the cause is viral.

 

[halcyon]

Do you think a SPECT scan and interpretation by Dr Byron Hyde would be useful in assessing the extent of potential brain damage?

Have you looked into this at all? I'd love to know if there is anywhere in California with the "right" equipment that Hyde talks about and past research studies have used.

 

[Jesse2233]

Have you looked into this at all? I'd love to know if there is anywhere in California with the "right" equipment that Hyde talks about and past research studies have used.

Chia said Amen clinic in Irvine is the only place that can do it

 

[halcyon]

Chia said Amen clinic in Irvine is the only place that can do it

Interesting, so their bay area location doesn't have the correct machine?

 

[Jesse2233]

Interesting, so their bay area location doesn't have the correct machine?

Not sure about that, think Chia was just referrinv locally to Southern California

 

[duncan]

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

Ignore it, "it's BS"

It may be wrong, but I would be somewhat taken aback if he said to ignore it. I would not ignore any signs of enterovirus infection, equivocal or otherwise. So why would I ignore any biomarkers that may suggest a possible TBD infection?

 

[Hip]

Do you think my HHV-6 (21.38), EBV (547), and CpN IgG (1:256) titers are significant? And if so can Equilibrant treat those infections as well?

These levels are not significant, but he has seen Equilibrant substantially bring down HHV-6 titers in another patient.

Sounds like Dr Chia does not normally use oxymatrine for treating herpes family viruses (otherwise I presume he would have said so); but he has observed oxymatrine to work for HHV-6 in one patient.

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?

Probably didn't help, but it's likely out of my system by now due to the short half-life of the toxin.

Dr Chia is right that mycotoxins have relatively short half lives, so after mold exposure, these mycotoxins that you breathe in would leave the body quickly.

However, have you looked at Dr Joseph Brewer's work on mold/mycotoxins in ME/CFS patients? His first study showed a strong history of prior mold exposure in ME/CFS patients, and in his second study, he details his idea that the nasal and sinus cavities of ME/CFS patients may be harboring a chronic mold infection which is constantly producing mycotoxins.

So although mycotoxins leave the body quickly, Brewer's idea is that if you have a chronic mold infection actually in your body, in the nasal and sinus cavities, more mycotoxins will be constantly produced.

Dr Brewer's experimental treatment involves antifungal nasal sprays to kill the mold. One spray he uses is based on amphotericin B, and another itraconazole. His 2015 paper shows around 60% of his patients with chronic illnesses make improvements on this antifungal nasal spray protocol.

There is a good thread on the protocol here: Is anyone doing Dr. Joseph Brewer's protocol?

I did not myself have any mold exposure history, but have been tempted to try the protocol anyway.

 

[Hip]

Have you performed a visual contrast sensitivity test (VCS), @Jesse2233?

The VCS test uses the eye's ability to detect shades of contrast as a means to gauge exposure to neurotoxins such as mycotoxins. A free VCS test can be found here.

If your VCS test comes out positive, it suggests you may be exposed to mold toxins (or other neurotoxins such as ciguatoxin). But note that a positive VCS test result may also occur in Lyme disease, Babesia, diabetes, Parkinson's and Alzheimer's. The VCS test may sometimes come out negative even when there is mold exposure.

 

[Gingergrrl]

@Jesse2233 Thanks for posting the update re: your appt with Dr. Chia, and even though my appt with him over a year ago did not go so well, I still think he is a genius and the world expert on Enteroviruses. I wanted to reply to a few of his responses to your questions which I thought were interesting.

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

Yes, although more IVIG is not always better. It calms the immune system down and that can vary by patient. It's best for POTS and autoimmune. Not sure about it's effects on enteroviruses because he's not done a trial of it due to the cost.

So, he said that he is willing to increase your IVIG to 70 grams in a 2-day split dose? Does this mean that he views your case as autoimmune mediated (or is he willing to try it for another reason)? I just wanted to make sure I understood!

I do 82 grams in a 3-day split dose but it is 100% for autoimmunity/reducing autoantibodies (in my case). Tomorrow starts my last approved cycle of IVIG (and then back in insurance limbo) but I would not have done high dose IVIG without such striking evidence of autoantibodies. I am fascinated that he is approving it for you before you have evidence of autoimmunity (unless you already have it and I am unaware)? Also 70 grams (assuming you weigh more than I do) is more of a moderate dose than high dose. I could have done 110 grams or more but we stopped at 82 grams for me to be as safe as possible, but still be well into the high-dose range (for my weight).

I also found it interesting that he said no to plasmapheresis (PP) which is consistent with every doctor that I saw last year. I can't quite tell if he views your case as autoimmunity vs. enterovirus (or both)?

Probably didn't help, but it's likely out of my system by now due to the short half-life of the toxin.

I disagree with his statement re: mold and back in 2015, I saw a mold specialist (not Shoemaker or anyone even slightly controversial LOL) and she said that while you can absolutely kill the mold on your belongings, you cannot kill the mycotoxins which can last for eternity in some cases. If you have solid evidence of exposure to toxic black mold (as we did), I would not dismiss trying nebulized glutathione and binders (or some kind of mold protocol under the guidance of a mold specialist).

Ignore it, "it's BS"

I also find it concerning that he views ALL cases of Lyme as BS (if I am understanding this correctly). I did Lyme tests three separate times and was negative on every single band on every single test (for Lyme, Babesia, Bartonella, etc) but if I had gotten an equivocal or unclear result, I would have pursued it before dismissing it as we did in my case.

Thanks again for sharing all of this with us!

 

[halcyon]

she said that while you can absolutely kill the mold on your belongings, you cannot kill the mycotoxins which can last for eternity in some cases.

I think what he means is that mycotoxins don't remain in the body indefinitely as they are metabolized and excreted, so as long as you are not re-exposed, they will not remain in the body forever. On surfaces, I'm sure they last much much longer.

 

[Gingergrrl]

I think what he means is that mycotoxins don't remain in the body indefinitely as they are metabolized and excreted, so as long as you are not re-exposed, they will not remain in the body forever. On surfaces, I'm sure they last much much longer.

The doc I saw felt if your immune system was not normal than mycotoxins can remain in the system unless you use some type of binder to help excrete them (but I know many doctors/people disagree on this). And unless you get rid of all belongings, then you are being re-exposed. I'm not saying this applies in Jesse's case (and have no idea!) but it definitely did in my own.

 

[halcyon]

The doc I saw felt if your immune system was not normal than mycotoxins can remain in the system unless you use some type of binder to help excrete them

I don't believe the immune system deals these substances at all, they are chemicals not proteins, but I could be wrong. Mold spores however are. I think mycotoxins are mostly handled by the liver and excreted in bile, hence the use of binders to keep them from being reabsorbed.

 

[Hip]

And unless you get rid of all belongings, then you are being re-exposed.

I think there is a distinction between being allergic to mold, and suffering the toxic effects of mold. The former involves an immune hypersensitivity to mycotoxins or mold (unrelated to the toxic effects of mycotoxins), and the latter involves mycotoxins causing damage or dysfunction in the body (unrelated to any immune hypersensitivity).

Don't forget that most allergens are not toxic: eg, peanuts can provoke a strong, even fatal, allergic response in susceptible people, but peanuts are not toxic. In peanut allergy, the immune system has just miscategorized peanuts as a dangerous pathogen, and so mounts an immune response against peanuts, giving rise to allergy symptoms.

So the allergic effects of a substance are unrelated to any toxic effects the substance may have.
The toxic effects of mold can include damage to mitochondria, as Dr Joseph Brewer point out in his paper (more info in this post), but I suspect this requires higher levels of mycotoxin exposure.


If you start sniffling and getting a runny nose or itchy eyes in moldy environments like damp basement, then you probably have mold allergy.

I am guessing that if you have a severe allergy to mold or mycotoxins, then small residual amounts of mold or mycotoxins left on your clothes or furnishings could give rise to allergic symptoms. But if we are instead talking about the toxic effects of mycotoxins in the body, I am guessing these small residual amounts on furnishings would not be so much of a problem.

Thus unless you have a mold allergy that causes major problems, getting rid of all your furnishing and clothes I would think is unnecessary. My guess is that you would just want to address the sources of mold and mycotoxins, such as damp walls or water-damaged rotting wood. Ordinary household bleach is a great mold killer.

 

[Gingergrrl]

Our mold story is done but we had 19 kinds of mold circulating through our A/C system in our former rental for 2-3 yrs (which started w/pipes leaking in a hall closet and spread to the A/C closet). Three companies (including one hired by landlord, not us) found levels of toxic black mold (stachybotrys) to be 8.0 ppb (parts per billion) and positive was above 0.02 ppb.

The three companies tested our clothing, furniture, electronics and air samples and it was consistent and systemic to every room. We hired a mold restoration company, whose estimate to clean our belongings would've cost over $20K, but they said in good faith they could not take our money b/c our belongings were unsalvageable.

We brought the reports to a mold doctor (who had been the head of US Environmental Dept for several years) who concurred that I stood no chance of recovery if we brought the belongings w/the mycotoxins to our new apt so with everyone in agreement, we moved into our new apt in 2015 with almost no belongings and I can honestly tell you that I do not regret that choice as hard as it was back then.

One of my inflammation markers that the mold doc tested TGF-b1 was 9400 back at that time and it's now 2100. Yes there is a true mold allergy but mycotoxins can be deadly and cause bleeding in the lungs and all kinds of serious problems that have nothing to do with an IgE allergy. I have not posted about this in a while but when the topic gets brought up, I think it is important for people to know about it.

 

[Hip]

@Gingergrrl, did you ever look into Dr Brewer's treatment?

 

[Gingergrrl]

@Gingergrrl, did you ever look into Dr Brewer's treatment?

I worked w/my own mold doctor at that time and followed her protocols as best I could for about 9-10 months. I was negative on the sinus test swab that is more part of the Brewer protocol and have never had sinus issues as part of my illness.

 

[Diwi9]

I think there is a distinction between being allergic to mold, and suffering the toxic effects of mold. The former involves an immune hypersensitivity to mycotoxins or mold (unrelated to the toxic effects of mycotoxins), and the latter involves mycotoxins causing damage or dysfunction in the body (unrelated to any immune hypersensitivity).

Don't forget that most allergens are not toxic: eg, peanuts can provoke a strong, even fatal, allergic response in susceptible people, but peanuts are not toxic. In peanut allergy, the immune system has just miscategorized peanuts as a dangerous pathogen, and so mounts an immune response against peanuts, giving rise to allergy symptoms.

So the allergic effects of a substance are unrelated to any toxic effects the substance may have.
The toxic effects of mold can include damage to mitochondria, as Dr Joseph Brewer point out in his paper (more info in this post), but I suspect this requires higher levels of mycotoxin exposure.

Every time I have a question in my head...@Hip has a post on it! Thank you!!!

 

[Sancar]

@Jesse2233 ~ If I may ask? Is Dr Chia your 'primary' Dr for the prescribing of the IVIG that you receive in the vaci ty where you reside?

I ask because when I went to see him last February he (Dr Chia) told me it would be 'impossible' for me to get IVIG when I ask him about receiving it for Treatment myself. He said it would 'be to expensive & insurance would never cover it'. End of discussion regarding IVIG. Yet I responded positively to Gammaglobolin injections in the past, when I was diagnosed with EBV. My EBV values are VERY high. He dismissed that also. He replied when I ask him about EBV 'it's nothing to worry about'. I know I must have looked back blank faced. When I was ill in the past with EBV It Was somethin! Perhaps more that EVB, however that was all I was told early '90's.

I'm very glad that you and @Gingergrrl are responding and able to get IVIG. I wish more of us sickies would get a sympathetic response from Doctors when we spend alot of effort to go see them.