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

[Jesse2233]

Hey everyone!

I lucked out and and Dr Chia had a cancelation. So instead of waiting until May, I'm seeing him on Friday.

Here is a list of questions I have for him.

All the Chia people (@Hip, @halcyon, @RestingInHim, @Andrew, @Ayaju, @aquariusgirl, @Patrick* and others) let me know if there's anything else I might ask. Thanks!

1. Is my chest pain a subclinical myocarditis infection from the coxsackie B4 virus, reduced mitochondrial function, or both? Am I at risk for a heart attack or heart failure? And if so is there a way to clear the virus from my heart?
   
   
2. Is there a risk that anti-virals will further damage mitochondrial functioning?
   
   
3. Is it unusual that I don't have any digestive symptoms or stomach pain even though a CB4 enterovirus and echoviruses are indicated on my bloodwork?
   
   
4. Can we use interferon or IVIG to help clear the CB4 virus?
   
   
5. There are some studies showing effectiveness of the following treatments against CBV4. Have you found any success with...?
   
   Tamiflu, Raoulic acid, Intraperitoneal DHQ, Emodin, 5-androstenediol, DHEA Epimedium, Azadirachta indica, yakammaoto, Rifampin
   
   
6. Would pairing Equilibriant w/ resistant starch, Rifampin, or Zantac increase its bioavailability? What about crushing it into powder for better absorption? Or what about an injection?
   
   
7. What are your current thoughts on Rituximab, Ampligen, and LDN. And is Equilibriant safe to take with LDN?
   
   
8. Might I take standalone oxymatrine to avoid olive leaf extract and licorice side effects over time? If so what's a good oxymatrine source?
   
   
9. Is there a way to improve the bioavailability of DHQ? Injection?
   
   
10. Does taking a cocktail of many Th1 shifting immunomodulators make sense instead of just one?
    
    
11. What about a combination of Th1 immunomodulators, anti-virals, and B-cell depletion?
    
    
12. Are there any new pharmaceutical drugs targeting non-cytolytic enteroviruses (specifically CBV4) on the horizon?
    
    
13. What do you think of Jay Goldstein's treatments such as nitroglycerin, Wellbutrin, naphazoline, and ketamine?
    
    
14. What do you think of the autoimmune and dauer theories of the disease?
    
    
15. Do you believe there will be a cure in the next 5-10 years?

 

[Jennifer J]

lucked out and and Dr Chia had a cancelation. So instead of waiting until May, I'm seeing him on Friday.

Here is a list of questions I have for him.

All the Chia people (@Hip, @halcyon, @RestingInHim, @Andrew, @Ayaju, @aquariusgirl, @Patrick* and others) let me know if there's anything else I might ask. Thanks!

...

Hi, @Jesse2233. That's great that you are able to see him sooner and those are great questions! I can't think of other ones for you, I don't know too much as others here will definitely know much more.

I'm curious what the answers are to several of the questions that you posted. I've wondered the same about a few and a few I didn't know existed so this is good to read.

If you have the energy it would be great if you could post the answers. I hope your appointment goes well. He's nice, smart and will spend time with you. I saw him a few years ago. It was a relief to see a doctor that acknowledged how sick I was, and knew what to look for and what questions to ask. Will be thinking of you Friday.

 

[halcyon]

Glad you're going to be getting in sooner. The sooner the better. Those look like good questions, I'd be curious to hear the answer to some of them. I hope he is able to help you out.

 

[Jesse2233]

Aww thanks @Jennifer J, I appreciate that! Wishing you the best as well!

I'll do everything I can to remember his answers and report back. My family will be there as well to help remember what he says.

Was Dr Chia able to help you?

 

[Jesse2233]

Glad you're going to be getting in sooner. The sooner the better. Those look like good questions, I'd be curious to hear the answer to some of them. I hope he is able to help you out.

Thank you sir!

 

[Hip]

I lucked out and and Dr Chia had a cancelation. So instead of waiting until May, I'm seeing him on Friday.

Fantastic!

All the Chia people (@Hip, @halcyon, @RestingInHim, @Andrew, @Ayaju, @aquariusgirl, @Patrick* and others) let me know if there's anything else I might ask. Thanks!

Just for your info: when you tag more than 5 people in a single post, anyone after the 5th person does not get a tag alert, only the first 5 people.

 

[Jesse2233]

Thanks @Hip, I did not know that

 

[Gingergrrl]

Just for your info: when you tag more than 5 people in a single post, anyone after the 5th person does not get a tag alert, only the first 5 people.

Wow, all this time and I did not know that either! Thanks @Hip!

And @Jesse2233 I saw Dr. Chia for a one-time consult over a year ago and brought my medical records and a list of questions w/me. My husband had come w/me to the appt and had some questions, too. The doctor was very angry that his enterovirus theories were not taken seriously and actually told me that he refused to view any records that I had brought from OMI (where I am a regular patient) even though the EV tests were done by the same lab that he used, "ARUP" along w/Quest and/or Lab Corp.

He immediately said that I had an EV in my brain, stomach, etc, but offered no proof and I'd never had a biopsy or brain scan. We were not permitted to ask questions until the very end (even though we tried!) and it was an upsetting experience b/c I was put on the defensive as soon as he walked in the door b/c I was an OMI patient. He absolutely refused me IVIG (which I later got through OMI and my MCAS doctor) and it is the single best treatment I have done in four yrs of being ill. I 100% understood why he refused Equilibriant b/c I have Hashimoto's and am very autoimmune. But I did not understand the rejection of IVIG in my case.

I also got the feeling that he did not believe that MCAS existed (one of my diagnoses which is now in remission from IVIG but was still very acute at that time). I left very disappointed but on the plus side, he was local and took my insurance so it was not a financial loss, just an emotional one. I am literally praying that your experience goes better than mine did and am sure it will. I think we must have caught him on an off-day. I think he is a brilliant man and researcher but he was not able to help me.

 

[Hip]

@Gingergrrl, didn't Dr Chia immediately work out that you do not have ME/CFS? When you listed your symptoms once on this forum once, it was plain to see that you don't satisfy the CDC or CCC definitions of ME/CFS, even though you have autonomic dysfunction and severe shortness of breath.

So I would have thought that Dr Chia would have gone through the ME/CFS symptom checklist with you first, and then realized that you don't satisfy the CDC nor CCC criteria.

 

[Hip]

@Jesse2233, one thing that you might consider doing is making an audio recording your appointment with Dr Chia on your smartphone. This is because sometimes you can miss important or interesting things being said, especially if you happen to have a lot of brain fog on the day.

 

[Gingergrrl]

@Gingergrrl, didn't Dr Chia immediately work out that you do not have ME/CFS? When you listed your symptoms once on this forum once, it was plain to see that you don't satisfy the CDC or CCC definitions of ME/CFS, even though you have autonomic dysfunction and severe shortness of breath.

So I would have thought that Dr Chia would have gone through the ME/CFS symptom checklist with you first, and then realized that you don't satisfy the CDC nor CCC criteria.

Actually no to all of the above. When I saw Dr. Chia one year ago, I truly believed that I had ME/CFS as did my doctor at OMI. We specifically wanted a consult re: the EV portion b/c I twice tested positive for one coxsackie virus and one echovirus through ARUP. He did not go through any kind of checklist with me and not only labeled me as having ME/CFS, he said that I had an EV in my brain and stomach (based on nothing but speaking with me for five minutes). We asked him what this was based on and he got angry and said unkind things re: OMI. I would honestly swear this to be true on a bible if you had one in front of me.

I do have POTS, autonomic dysfunction and SOB (you are correct) but I had worsening muscle weakness that no one could understand until the auto-antibodies were found by another doctor. I also had severe MCAS (confirmed by a phone consult with Dr. Afrin in addition to my own MCAS doctor) and Dr. Chia all but said that MCAS was not real.

ETA: I am not saying that he has not helped many people and I have no doubt that he has. I am just sharing my own personal experience.

 

[Jesse2233]

It's good to hear your story @Gingergrrl

I think Chia is likely deeply focused on his theory to both positive and ill effect

Based on self-reported and anecdotal evidence he seems to help a fair number of people, perhaps mainly those in the enterovirus subset

But what happened with your interaction was unfortunate. I wish he'd listened to you more and not painted you with such a broad brush, and I'm glad you're getting effective treatment now

 

[Gingergrrl]

But what happened with your interaction was unfortunate. I wish he'd listened to you more and not painted you with such a broad brush, and I'm glad you're getting effective treatment now

It's okay and it was just a one-off consult and a year ago like I said. I am not upset about it now, it was just an unfortunate experience at the time b/c I tested positive for two EV's and hoped to learn something about them or how they might have related to my symptoms (which are pretty severe and I've been using a wheelchair for 2.5 yrs) but it was not meant to be.

 

[Jesse2233]

@Jesse2233, one thing that you might consider doing is making an audio recording your appointment with Dr Chia on your smartphone. This is because sometimes you can miss important or interesting things being said, especially if you happen to have a lot of brain fog on the day.

I get your logic but if I did I'd ethically have to let him know, and then he might be less inclined to speak freely. Don't worry though, I'll ask my mom to take good notes

 

[Hip]

When I saw Dr. Chia one year ago, I truly believed that I had ME/CFS as did my doctor at OMI.

So perhaps Dr Chia just took it on trust that OMI's original diagnosis of ME/CFS was correct. But how then did the OMI originally come to the conclusion that you have ME/CFS? I mean, obviously you do have a major and debilitating illness which might involve autoimmunity, and in addition things like MCAS as well; but since you are missing the cardinal symptom of ME/CFS like fatigue, brain fog, PEM, etc, how did the OMI come to a ME/CFS diagnosis? That seems rather odd that the OMI would categorize you as an ME/CFS patient.

Anyway, it's very interesting what you say about Dr Chia's attitude to the OMI. I'd love to know the reason for that. I find it very sad that Dr Chia is the only ME/CFS doctor around who focuses on enterovirus research; there should be others, but nearly all the other doctors these days seem focus on herpes family virus research. Except if you go back 3 decades, when all the serious ME/CFS research in the UK was on enteroviruses.

Nobody has even bothered to replicate Dr Chia's amazing research, finding enterovirus infections in the stomach of most ME/CFS patients. I feel sad for Dr Chia — and sad for ME/CFS patients as well, because this line of research needs to be pursued.

 

[Gingergrrl]

So perhaps Dr Chia just took it on trust that OMI's original diagnosis of ME/CFS was correct.

He literally refused to look at the stack of medical records from OMI even though I had spent days xeroxing and preparing them. He absolutely did not know what diagnosis they said b/c he would not read them. He said disrespectful things about my doctors (both my OMI and MCAS doctors) and I really do not know why. But it was off-putting for me b/c the two of them have literally saved my life.

But how then did the OMI originally come to the conclusion that you have ME/CFS?

OMI sees patients with many different diagnoses including ME/CFS, Lyme and tick-borne disease, MCAS, and all types of neuro-immune, autonomic, and autoimmune illnesses that are very hard to diagnose and treat. When I initially went there in mid 2014, I did not have a wheelchair yet and was extremely out of breath from walking a few feet. I was a perfect match with off the charts EBV and other herpes titers, recent history of severe mono/EBV two years prior, undetectable vasopressin levels, very low NK cell functioning, POTS, hypotension, and I matched with their other ME/CFS patients until we continued to dig deeper and deeper.

And I am grateful that they dug deeper and would not stop with ME/CFS as my diagnosis when it didn't quite fit, but yet it did overlap in many ways. I tried two anti-virals and when this route did not help, we really started to look into other things.

I mean, obviously you do have a major and debilitating illness which might involve autoimmunity, and in addition things like MCAS as well; but since you are missing the cardinal symptom of ME/CFS like fatigue, brain fog, PEM, etc, how did the OMI come to a ME/CFS diagnosis? That seems rather odd that the OMI would categorize you as an ME/CFS patient.

There is no "might" in regard to my illness involving auto-immunity. I test positive for eleven auto-antibodies on tests from OMI, Stanford, Mayo, Quest, and Cell Trend. This part is no longer in question. We believe it all started out viral and then turned autoimmune. But you are correct that I do not have fatigue, brain fog or PEM. When I went to OMI, I did not even know what PEM was (and I still struggle to grasp what it means and I think this is b/c I have never experienced it) vs. immediately understanding what tachycardia/POTS was b/c I was such a severe case at that time.

Anyway, it's very interesting what you say about Dr Chia's attitude to the OMI. I'd love to know the reason for that.

I honestly do not know but I think it's a shame. And just to be clear, Dr. Chia 100% told me that ME/CFS was my diagnosis b/c I had two positive EV's from ARUP (but did not tell me why).

I find it very sad that Dr Chia is the only ME/CFS doctor around who focuses on enterovirus research; there should be others, but nearly all the other doctors these days seem focus on herpes family virus research. Except if you go back 3 decades, when all the serious ME/CFS research in the UK was on enteroviruses.

For whatever reason, he seemed to take it out on me personally that other doctors or researchers were not studying EV's which is not my fault!!! I told him that I viewed him as the world expert on EV's, and was very curious how they related to my case, but all I got was a history lesson on what all of the other researchers were doing wrong.

I feel like I need to stop b/c I don't want to derail Jesse's thread (unless Jesse, this is helpful info for you)?

 

[Hip]

He literally refused to look at the stack of medical records from OMI even though I had spent days xeroxing and preparing them. He absolutely did not know what diagnosis they said b/c he would not read them. He said disrespectful things about my doctors (both my OMI and MCAS doctors) and I really do not know why but it was off-putting for me b/c the two of them have literally saved my life.

When you say disrespectful, how do mean exactly? Sometimes doctors do not have a high opinion of the diagnoses of other doctors, but that in itself is not disrespectful.

There is no "might" in regard to my illness involving auto-immunity. I test positive for eleven auto-antibodies on tests from OMI, Stanford, Mayo, Quest, and Cell Trend.

I was thinking more of your shortness of breath condition when I said "might involve autoimmunity;" isn't the cause of that still a mystery? Or has one of your doctors said that this condition is autoimmune?

 

[Gingergrrl]

When you say disrespectful, how do mean exactly? Sometimes doctors do not have a high opinion of the diagnoses of other doctors, but that in itself is not disrespectful.

I'm not going to quote what he said and feel it would be inappropriate, especially publicly, even though I actually remember his exact words. It does not feel right for me to do so.

I was thinking more of your shortness of breath condition when I said "might involve autoimmunity;" isn't the cause of that still a mystery? Or has one of your doctors said that this condition is autoimmune?

I am trying so hard not to go off-topic (which is my biggest challenge LOL) but want to answer in case it helps anyone else. I thought you meant that my entire condition might involve autoimmunity when I replied. However, we suspect that some of my autoantibodies are weakening my muscles (including my diaphragm and lung muscles) and that other autoantibodies are behind the POTS and autonomic problems so I have a double whammy so to speak. My response to high-dose IVIG has exceeded our expectations and there is no other logical explanation why unless it is reducing the autoantibodies.

Let's talk by PM if you have more questions for me out of respect for Jesse and not going further off-track.

 

[Jesse2233]

Hahah it's ok @Gingergrrl I'm enjoying the back and forth, it gives me some insight into Chia and generally into diagnoses. I'm also interested to learn about autoimmunity because that may be a part of my illness as well

If someone wants to jump in and bring up new questions for Chia they can still do that

 

[Diwi9]

Congratulations @Jesse2233 ! I hope you find answers and good treatment with Dr. Chia.

@Gingergrrl - Your experience is very helpful. I'm scheduled for OMI in June, but hope I have Jesse2233's luck and get bumped to an earlier visit. Dr. Chia remains an option. Until we understand subtypes, we must accept that many specialists view the disorder solely through their theory. We need all of these view points for research, but as a practitioner, it can be frustrating and I'm sorry he wasn't kinder to you. I hope it was just a bad day for him, you seem to have a good perspective on the experience and I appreciate you sharing it.