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

[ebethc]

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

And @Jesse2233 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.
..
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).

have you heard the expression "if you have a hammer, everything looks like a nail"? I feel that way about doctors and their playbook.... they decide on something (eg enteroviruses cause cfs; mcas isn't real) and then that's that... I've been to several doctors who insist I have lyme, even though I've always tested negative... they keep saying, okay, you tested negative, but take another test from this other company... and on, and on.. because lyme is their thing

 

[Jesse2233]

@Gingergrrl btw do you remember which EVs you tested positive for?

 

[Gingergrrl]

@Gingergrrl btw do you remember which EVs you tested positive for?

Am actually at appt w/my MCAS doc now so don't have my records in front of me. But if I remember correctly, I was positive on Coxsackie B4 and Echovirus 11 (through ARUP Labs).

I did the testing twice (2015 & early 2016) so not sure what it would show if I were to re-do it now. The weird thing is that on the two tests, the actual titers flipped. So on first test one was 1:80 and other was 1:160 but on 2nd test, the two had reversed. I had hoped to get Dr. Chia's opinion on this but he did not answer the question so I will never know!

Both times I was positive on the same two (CB4 and EV11) but the titer numbers flipped. He did say none were a strong positive (b/c less than 1:320) so am not really sure if it just represents a past infection? My mom said I had Coxsackie virus as a baby so it might be from that?

 

[ebethc]

Am actually at appt w/my MCAS doc now so don't have my records in front of me. But if I remember correctly, I was positive on Coxsackie B4 and Echovirus 11 (through ARUP Labs).

I did the testing twice (2015 & early 2016) so not sure what it would show if I were to re-do it now. The weird thing is that on the two tests, the actual titers flipped. So on first test one was 1:80 and other was 1:160 but on 2nd test, the two had reversed. I had hoped to get Dr. Chia's opinion on this but he did not answer the question so I will never know!

Both times I was positive on the same two (CB4 and EV11) but the titer numbers flipped. He did say none were a strong positive (b/c less than 1:320) so am not really sure if it just represents a past infection? My mom said I had Coxsackie virus as a baby so it might be from that?

Is it important to get EV testing via ARUP lab? I have terrible insurance now, and just have to take what I can get... Is it worth it to get EV's tested somewhere else?

 

[Gingergrrl]

Is it important to get EV testing via ARUP lab? I have terrible insurance now, and just have to take what I can get... Is it worth it to get EV's tested somewhere else?

Dr. Chia only uses ARUP and in spite of my not so great appt, he is the world expert on EV's IMO so if I was going to do the testing, I would use ARUP.

 

[Hip]

Well @Gingergrrl, that's the first time I have heard a negative report of Dr Chia; in the other reports I have read, patients are always impressed with the efforts that Dr Chia goes to in order to find solutions.

Is there any way that you may have started off on a bad footing? For example, did by chance you try to direct Dr Chia to what you wanted, rather than passively listen to his questions and clinical judgement? I notice myself that if I try to actively take over an appointment with a doctor, expressing my own medical views instead of letting him set the pace and the agenda, it sets things off on a bad footing, and you don't get the best out of that doctor.

The fact that you said above that Dr Chia "absolutely refused me IVIG" suggests that IVIG was your own idea, and your own clinical judgment in terms of treatment (and one that you pressed him for), rather than his judgment.

As I say, I have only come across good reports about Dr Chia's treatment of patients, so I am trying to figure out why you had a not so good experience.

 

[Gingergrrl]

Hip, no to all of the above. I did not even know yet that I had the autoantibodies (they were discovered the following month) and I actually would have declined IVIG at that point. He made a point of telling me I was not a candidate for it and he had no treatment to offer me (not the other way around).

My husband was w/me at appt, and he and Dr. Chia are both Asian, and my husband was stunned at how he spoke to us. Two people sent me PM's last night that they had similar experiences to mine but asked me to not share publicly which I would never do.

My only agenda for seeing Dr. Chia was to learn more about EV's and I viewed him as the world expert on this topic (and still do). As God is my witness he walked into the room and made a negative comment about OMI before I ever spoke a word. You do not need to believe me and am just sharing my experience.

ETA: His office had asked me to prepare a summary and bring my medical records and I spent close to a week on this (and I was much sicker at that time and it was very difficult for me). He literally refused to look at what I brought. He spoke about his research being denied and was clearly angry. Maybe b/c I am an OMI patient, he took it out on me. I really have no other logical explanation. I think if had been a patient of a random PCP/GP, the appt would have gone differently.

 

[Hip]

I believe you, Gingergrrl, I am just trying to understand the whys and wherefores. Why would Dr Chia make negative comments about the OMI? Maybe there is a background history between them that we don't know about.

Regarding the IVIG: so in fact Dr Chia did not refuse you IVIG as such; rather, he just did not recommend it. IVIG is not a very common treatment of ME/CFS anyway, and has mixed results (but does work in a few cases), so it would not be a normal treatment to recommend for ME/CFS (especially given its $25,000 cost), and at that time I guess you were seen as an ME/CFS patient. The exception is in cases of parvovirus B19 induced ME/CFS, where IVIG works well.

 

[Gingergrrl]

I believe you, Gingergrrl, I am just trying to understand the whys and wherefores.

Thanks, and I do appreciate that you believe me b/c I honestly have no reason on earth to make this up (and couldn't if I tried)!

Why would Dr Chia make negative comments about the OMI? Maybe there is a background history between them that we don't know about.

I have no idea and certainly did not ask him. I was trying the whole appt to re-direct the conversation back to my specific case, why I tested positive 2x on ARUP tests for 2 EV's but the titers had flipped, and what this meant, etc.

I truly believed my case was viral at that time (vs. autoimmune) and I was still attempting to take Valcyte. He was VERY against Valycte and advised me to stop taking it, even though he was not the prescribing doc and had not consulted w/my doc, so that was a little strange, too.

Regarding the IVIG: so in fact Dr Chia did not refuse you IVIG as such; rather, he just did not recommend it.

I should clarify this. I had read about what treatments Dr. Chia sometimes offered and IVIG was one of them. When he said he had nothing to offer me (and actually said there is no specific anti-viral for EV's at this time b/c no one is focusing on his research etc), I asked him questions like, "What about Equilibriant" or "What about IVIG"? etc. He said an absolute no to both. I 100% understood the no to Equilibriant b/c I have Hashimoto's. I did not understand the immediate no to IVIG, only that he would not be willing to try it with me.

I did not meet the criteria for traditional IVIG for immune deficiency and if this is the reason, it makes sense in retrospect. I actually did even not want IVIG or RTX at that time. It was not until later testing showed that I had eleven auto-antibodies that I changed my mind and wanted the opportunity to try the autoimmune dosing of IVIG. (I now want to try RTX but I did not discuss this w/Dr. Chia at that time).

He also made it pretty clear that he did not believe that MCAS was a "real" diagnosis. I have encountered this many times before and will encounter it again. It is just a frustrating feeling not to be believed by a doctor who you are expecting to be open-minded. I had been hospitalized for a week for anaphylaxis from MCAS and see one of the top MCAS specialists in the country (and actually saw him this morning and he is amazed w/my progress from IVIG). Because of this doctor's MCAS regime combined with high dose IVIG, I am now in remission (from MCAS, not from everything)! Had I asked Dr. Chia about high-dose IVIG for autoimmune diseases I am pretty certain he would have told me no but of course that is just speculation.

I do, however, know of people that he has diagnosed with EV, or ME/CFS triggered by EV, only by a phone call or e-mail (no brain scan, no biopsy, sometimes not even ARUP testing). So I think if you see him or talk to him, this is the diagnosis that you will get and it is 100% the diagnosis that he gave me. If I had stopped w/that diagnosis and accepted that there was no treatment for me, I would never know that I have these auto-antibodies or the level of improvement that high-dose IVIG has brought me.

IVIG is not a very common treatment of ME/CFS anyway, and has mixed results (but does work in a few cases), so it would not be a normal treatment to recommend for ME/CFS (especially given its $25,000 cost), and at that time I guess you were seen as an ME/CFS patient. The exception is in cases of parvovirus B19 induced ME/CFS, where IVIG works well.

Mine is approved by my insurance since last July (with true high dose since Dec) so my co-pay is approx $350. Granted this is not cheap but it is not $25K either.

 

[ebethc]

He also made it pretty clear that he did not believe that MCAS was a "real" diagnosis. I have encountered this many times before and will encounter it again. It is just a frustrating feeling not to be believed by a doctor who you are expecting to be open-minded. I had been hospitalized for a week for anaphylaxis from MCAS and see one of the top MCAS specialists in the country (and actually saw him this morning and he is amazed w/my progress from IVIG). Because of this doctor's MCAS regime combined with high dose IVIG, I am now in remission (from MCAS, not from everything)! Had I asked Dr. Chia about high-dose IVIG for autoimmune diseases I am pretty certain he would have told me no but of course that is just speculation.

Why don't doctors believe that MCAS is a "real" diagnosis? do they minimize it (.ie, just take antihistamines and get over it)? or, do they disbelieve the dx itself?

who's the MCAS specialist that you see? I only know about Dr Maria Castells in boston.

Glad your husband was w you!

 

[Gingergrrl]

Will PM you the name of my MCAS doc and have decided not to post any of my docs names even though many know who they are. Am always happy to share them by PM.

As far as docs who do not believe MCAS is real, only they can answer that. They either truly believe it is psychosomatic or on the flip-side they are afraid to go near you b/c of ANA risk but don't want to admit that. (This is my guess).

 

[Hip]

Can we use interferon or IVIG to help clear the CB4 virus?

I think is fairly certain that ribavirin and interferon do not work against CVB4, as in the Invest in ME London 2009 conference, in the video at timecode 41:30, Dr Chia says:

Interferon and ribavirin has excellent activity against CVB3. I'll just show you this panel on the left upper, this is my son's data. On the y-axis, is the titer of the CVB3 antibody....

Then at timecode 42:30, Dr Chia says:

Interestingly enough, my son also has CVB4, but for CVB4 the antibody titer did not change at all. Which is what I usually see with ribavirin and interferon: it's ineffective against CVB4.

In this part of the video, Dr Chia is talking about treating his son and some other ME/CFS patients with ribavirin and interferon, and how their CVB3 antibody titers dropped after treatment, but the CVB4 antibody titers were unchanged after treatment.

EDIT: Dr Chia also says IFN not good for CVB4 in this post.

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?

I am not sure how important a question this is. Oxymatrine may have a lowish 19% bioavailability, but that presumably is taken into account when setting the oxymatrine doses. If the bioavailability were to be increase, then the dose would have to be lowered.

What are your current thoughts on Rituximab, Ampligen, and LDN. And is Equilibriant safe to take with LDN?

I can tell you the answer the LDN part of this question: Dr Chia says that LDN only works for a very small subset of ME/CFS patients, but he notes that the patients LDN works for get major benefits from it.

Might I take standalone oxymatrine to avoid olive leaf extract and licorice side effects over time? If so what's a good oxymatrine source?

I know that Dr Chia finds Equilibrant to be slightly stronger in effect than pure oxymatrine, and some patients find Equilibrant too strong, so he switches to oxymatrine only.

 

[Jennifer J]

Hi, @Jesse2233. I sent you a pm late last night. Not sure if you read it via an email or not. Have a good appointment tomorrow.

 

[Hip]

He also made it pretty clear that he did not believe that MCAS was a "real" diagnosis. I have encountered this many times before and will encounter it again. It is just a frustrating feeling not to be believed by a doctor who you are expecting to be open-minded.

It's interesting that the UK NHS do not have MCAS detailed on their website. I found an NHS page on mastocytosis (in which there is an excess number of mast cells), but not one on mast cell activation syndrome (where the number of mast cells is normal).

The Wikipedia page on MCAS says:

MCAS is a relatively new diagnosis, being unnamed until 2007.

Diagnostic criteria have been proposed only in 2010.

The condition was first recognized in 1991.

So I guess still being so new, MCAS will take some time before it gets accepted.

 

[Gingergrrl]

It's all good @Hip and I know already that many countries do not recognize MCAS in addition to many docs in the US. I'm going to step back from this thread and don't have much else to add!

Good luck Jesse at your appt.

 

[ebethc]

As far as docs who do not believe MCAS is real, only they can answer that. They either truly believe it is psychosomatic or on the flip-side they are afraid to go near you b/c of ANA risk but don't want to admit that. (This is my guess).

this may be rhetorical, but how can it be psychosomatic ? there are diagnostic tests... <sigh>

ANA = anti nuclear antigens?? don't understand

 

[Gingergrrl]

ANA = anti nuclear antigens?? don't understand

Apologies and ANA is the abbreviation for anaphylaxis (but the ANA test also stands for anti nuclear antibodies). I was referring to the former (anaphylaxis) re: many doctors and dentists being afraid to work with the patient (often while simultaneously saying it is psychosomatic). Go figure.

 

[RYO]

It would be very interesting to get Dr Chia's thoughts about Rituximab trials. What are his thoughts about proposed autoimmune mechanism of disease for ME/CFS?

 

[Jesse2233]

Alight guys... here it is.

We had a 90 minute conversation, it was intense in a good way. I think he appreciated all the research I had done, and I have to thank you guys for giving me the building blocks. His nurse also suggested I record it so I have it all, though I don't think it's appropriate to post it online.

There were some similarities to @Gingergrrl 's experience. He went into great detail about his research, his son, how he's underappreciated, and gave his unvarnished opinion of a few colleagues.

I think he's brilliant and I liked him. He makes a strong case for enteroviruses, though I'm not one to say whether he's right or wrong.

Some interesting points:

• Believes there's synergy between viruses that creates chronic infection
• Says the Incline Village outbreak was caused by a sewage leak into Lake Tahoe with protozoa that had enteroviruses inside of them
• Sees lots of clusters of chronic enteroviruses
  
  
• On average people take 4-5 years to see him after coming down with the illness
  
  
• Sees disproportionate amount of white and especially Jewish people with chronic enteroviruses, fewer Asians.
• Hispanics and African Americans tend to have more pain with chronic enteroviruses
  
  
• 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.
  
• Initially 5% may feel more tired on Equilibrant
• Adverse reaction to Equilibrant is caused by viral infected cells dying
• Nancy Klimas has given Equilibrant to 300 patients with similar success percentages.
• Mold and other Th2 triggers can lessen the effect of the Oxymatrine
• Take Equilibrant for at least 1 year even if it's working to prevent relapse
• He sells Equilibrant in his office at cost, doesn't make a profit
• IV matrine is even more effective but he can't give it here (didn't explain why). Studies in China (written in Chinese) show 2 months IV matrine has 97% effectiveness for chronic coxsackie B myocarditis vs 0% in placebo
  
  
• Don't drink tap water, drink triple filtered water (reverse osmosis) by GE. Wash your lettuce with filtered water. 70% of lettuce in a part of Texas in one case had enteroviruses present. Boil your tap water if you don't have a filter.
  
• Don't swim in the ocean or lakes
  
  
• Said Harvoni (Hep C drug) is not effective against enteroviruses

The questions (didn't get to them all)...

1. Do the CBV4 titers indicate IgG or IgM antibodies? And might this still be an active infection or acute post-viral syndrome that could resolve without sequela?
   
   Neither IgG or IgM, but is instead a serum test. And yes it's possible I get over it on my own, but better not to wait and see, and to start treatment with Equilibrant instead.
   
   
2. Is my chest pain a subclinical myocarditis infection from the CBV4 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?
   
   Active virus linked. Not likely at risk for a heart attack. Equilibrant should help clear it from my heart.
   
   
3. Since I’m early into the illness, do I stand a better chance at a quicker recovery?
   
   Yes
   
   
4. Do you believe there will be a cure in the next 5-10 years? Better treatments?
   
   Yes a cure. There are two new extremely potent CBV4 antivirals coming out, one from Belgium. Said the name was a long number.
   
   It took enterovirus counts in immunocompromised scid mice (no T or B cells) from millions of CBV4 viruses to nothing and protected them from dying. Cleared it from their brain and other organ tissue.
   
   Gave them the drug intravenously for 2-3 weeks. At the end of two months 60% of the mice had survived and had full functionality.
   
   It was acute infections in the mice, but the researchers said it should work in chronic viral infections because it blocks replication of the RNA.
   
   
5. Have you been able to successfully treat people my age with my level of debilitation, symptoms (chest pain, shortness of breath, and fatigue), and 1:640 CBV4 titers?
   
   Yes
   
   
6. How much do you think the CBV2, EBV, HHV-6, Echovirus, and CpN titers are contributing to my illness in comparison with the CBV4 titers?
   
   Not much if at all, it's the CBV4. The other titers are likely past infections.
   
   
7. I’ve read that oxymatrine can make some people permanently worse. Is there a way to mitigate this risk?
   
   Start extremely slow with 1/4 a tablet
   
8. What are your current thoughts on IVIG, Rituximab, LDN, and Ampligen?
   
   Ampligen is a bad drug. The studies were bad. Maybe helps 10% of people
   
   LDN is ok. Can help with sleep and pain, helps 10-20%. Should be safe to take alongside Equilibrant.
   
   IVIG helps 20-25% of people.
   
   Rituximab is interesting. He's in contact with Fluge and thinks well of him. Thinks it helps those with an autoimmune condition but not CFS with he attributes to a smoldering virus.
   
   Said 40% of the people in the 30 person trial had a relative with an autoimmune condition vs 5% normally.
   
   He thinks their positive results are also because of the Norwegian population's homogeneity and high incidence of autoimmune issues.
   
   
9. Is it unusual that I don't have any digestive symptoms or stomach pain even though enteroviruses are indicated on my blood work?
   
   No, CBV4 is active in the sinuses, heart, and brain.
   
   
10. Have you ever successfully used any interferon to successfully treat CBV4?
    
    First he said no, but then he said it brought down his son's CBV4 and CBV3 titers along with the oxymatrine. And he said if I wanted to try it and pay for it I could.
    
    
11. From what I’ve seen DHQ has a very low IC50 value against CBV4. Is there a way to improve the bioavailability of DHQ? Intraperitoneal injection?
    
    He said he didn't know.
    
    
12. Are there any new drugs targeting CBV4 on the horizon?
    
    Yes, two very potent anti-virals.
    
    
13. What do you think of the dauer (Naiviaxu) theory of the disease?
    
    Thinks smoldering virus is the root cause
    
    
    
    
    

 

[Hip]

Fabulous post, Jesse2233, and very interesting news! Thanks so much for being such a great "journalist" for the forum. Glad Dr Chia was able to confirm that oxymatrine may help your recovery, and was able to put your mind at rest regarding your heart symptoms.

Sees disproportionate amount of white and especially Jewish people with chronic enteroviruses, fewer Asians.

Intriguing! Perhaps we need to start looking at Ashkenazi genetic SNP polymorphisms, and figure out why this might be.

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.

I can certainly accept that oxymatrine will help 50% of enterovirus-associated ME/CFS patients overall, but I have always found it strange that as far as I am aware, we have never had anyone on this forum who had this bedridden to back-to-work major response from oxymatrine. If 30% of Dr Chia's enterovirus ME/CFS patients are achieving this, you'd think we would have had quite a few on this forum with similar responses, but I have not seen even one. So that is something of a mystery.

Nancy Klimas has given Equilibrant to 300 patients with similar success percentages.

I did not know that. Very interesting.

Mold and other Th2 triggers can lessen the effect of the Oxymatrine

That's a hypothesis that I was exploring a while ago in this thread. My general thoughts were that exposure to any factors that promote Th2 might both act to prevent viral clearance, as well as thwart any Th1 boosters such as oxymatrine or inosine.

Take Equilibrant for at least 1 year even if it's working to prevent relapse

This post quotes Dr Chia saying that for men, once they get better on oxymatrine, they can discontinue this medication after 6 months. But women usually have to continue taking it (presumably indefinitely), because when they stop, they usually relapse within the next month.

IV matrine is even more effective but he can't give it here (didn't explain why). Studies in China (written in Chinese) show 2 months IV matrine has 97% effectiveness for chronic coxsackie B myocarditis vs 0% in placebo

Fascinating! I did come across some Chinese injectable oxymatrine (rather than matrine) products for sale online a few years ago. I am going to search the Chinese market again to try to find some matrine injectables for sale.

Yes a cure. There are two new extremely potent CBV4 antivirals coming out, one from Belgium. Said the name was a long number.
...
the researchers said it should work in chronic viral infections because it blocks replication of the RNA.

Wow! And double wow! I'd love to know what those two new drugs are. If you look at the very bottom of my enterovirus antivirals post, you will see a list of enterovirus antiviral drugs still in the research and development pipeline (with code names like BTA-798, TTP 8307, etc); the two new CVB4 drugs might be in that list. Maybe when you get a chance to listen to your recording of your appointment, you will be able to get the name.

Ampligen is a bad drug. The studies were bad. Maybe helps 10% of people

LDN is ok. Can help with sleep and pain, helps 10-20%. Should be safe to take alongside Equilibrant.

IVIG helps 20-25% of people.

Interesting that Dr Chia finds IVIG can help a reasonable percentage of patients. He did say in the 2009 Invest in ME Conference video that the problem with IVIG is mainly that insurance companies will not pay for it.

Rituximab is interesting. He's in contact with Fluge and thinks well of him. Thinks it helps those with an autoimmune condition but not CFS with he attributes to a smoldering virus.

Said 40% of the people in the 30 person trial had a relative with an autoimmune condition vs 5% normally.

He thinks their positive results are also because of the Norwegian population's homogeneity and high incidence of autoimmune issues.

Very interesting. @Jonathan Edwards might want to comment.

If the cohort in the 30 person Fluge and Mella phase II rituximab trial contained an inordinate number of Norwegian people that are prone to autoimmunity, that would help explain the high success rate, but it might also entail that rituximab might not work as well for other ME/CFS patient cohorts in different countries.

That might explain why on these forums, the response rate of those who posted their rituximab results has not been very good. Out of the 14 people on this forum who I saw posted their results, only 1 person had a very good response, another 1 or 2 had moderate to mild responses, and the rest did not respond at all to rituximab.

That said, the Kolibri Medical hospital in Norway are getting a good success rate from rituximab (they report ⅓ cured, ⅓ improved, ⅓ no response), but again they may be treating mostly Norwegian ME/CFS patients.

Though @eljefe19 in this post said that Dr Kaufman of the Open Medicine Institute in the US told him the OMI's rituximab success rate for ME/CFS was similar to the Fluge and Mella phase II rituximab trial's. So that is some indication that rituximab does work for non-Norwegian cohorts.