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

[ebethc]

@Jesse2233

Great post! thanks for taking the time to write this up.

Is this the water filtration system that you're talking about?
http://www.homedepot.com/p/GE-Reverse-Osmosis-Filtration-System-GXRM10RBL/202073853


I can ask my doc to order the enterovirus tests; which ones does Chia recommend?
https://arupconsult.com/content/enterovirus/?tab=tab_item-2

How much does Equilibrant cost?

thanks!

 

[halcyon]

I can ask my doc to order the enterovirus tests; which ones does Chia recommend?
https://arupconsult.com/content/enterovirus/?tab=tab_item-2

0060055 (coxsackie B) and 0060053 (echovirus) are the proper enterovirus serology assays from ARUP. These are what Chia uses.

 

[Jennifer J]

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.

Hi, @Hip! I'm almost positive, and briefly looked for it in my notes but too fatigued to pursue this further, that someone has posted within the past year or I read it on here, that they are back to their old self and working after taking oxymatrine. I remember it because it excited me very much thinking the possibility of that for me. If I run across it I'll share it with you on the forum.

@Jesse2233 , thank you for sharing the information from your appointment! This is very helpful. I can't wait to read it more thoroughly. I'm glad he was able to answer your questions and spend a lot of time with you.

Thank you, @Hip, too, for all you research and share.

 

[Jesse2233]

Took a 1/4 Equilibrant last night, had some mild anxiety. Just took another 1/4 this morning, feeling a bit dizzy

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

Indeed! He mentioned he thinks fewer Asians get sick is because they tend to culturally drink hot water which kills the enteroviruses and that drinking their dead bodies may create a sort of vaccine

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.

Perhaps the magnitude of a robust effect varies but I suspect it's in the enterovirus subset. We need to consider the selection bias of this forum as well. I've seen some positive stories about Equilibrant on Reddit as well as ProHealth, and come to think of it some on here too (a user named TopDog I think). Also Hip didn't you mention someone on another board you saw with great success?

Thanks so much for being such a great "journalist" for the forum.

Of course!

I am going to search the Chinese market again to try to find some matrine injectables for sale.

Great! Let us know what you find

Maybe when you get a chance to listen to your recording of your appointment, you will be able to get the name.

Unfortunately he didn't say the name, just that it was a series of letters and numbers

Is this the water filtration system that you're talking about?
http://www.homedepot.com/p/GE-Reverse-Osmosis-Filtration-System-GXRM10RBL/202073853

Yes I believe that's the one

thank you for sharing the information from your appointment!

No problem!

 

[Hip]

Took a 1/4 Equilibrant last night, had some mild anxiety. Just took another 1/4 this morning, feeling a bit dizzy

I think it is the matrine rather than the oxymatrine that causes dizziness (this study says matrine causes dizziness). When I took the Alternative Medicine Solutions product, which is just pure oxymatrine (the capsules just contain a pure white power, presumably pharmaceutical grade oxymatrine), there was never any dizziness, no matter how high a dose I took.

But when I took the White Tiger brand oxymatrine tablets, which are derived from the Sophora root herb rather than being a pure pharmaceutical grade compound, and I think contain both matrine and oxymatrine, even just one tablet would cause me dizziness.

Actually, it's too late now, but I realize one question that would have been good to ask Dr Chia is the relative benefits of matrine and oxymatrine for enterovirus infections — both are found in Sophora root, the herb Equilibrant contains. It's complex though, because when taken orally, much of the oxymatrine is converted to matrine in the body (ref: here).

Perhaps the magnitude of s robust effect varies but I suspect it's in the enterovirus subset. We need to consider the selection bias of this forum as well. I've seen some positive stories about Equilibrant on Reddit as well as ProHealth, and come to think of it some on here as well (a user named TopDog I think). Also Hip didn't you mention someone on another board you saw with great success?

I'll have to scan the Internet again for oxymatrine success stories. But given there are 17 million ME/CFS patients worldwide, and we might guess that say half of those are the enterovirus subset of ME/CFS, if oxymatrine makes major improvements in 30% of that subset, that's an awful lot of people that would be singing the praises of oxymatrine online, so you'd think the Internet would be awash with oxymatrine recovery stories.

Of course, there is aways the issue that once patients recover, they may lose interest in the ME/CFS community, and just get on with their lives.

Hi, @@Hip! I'm almost positive, and briefly looked for it in my notes but too fatigued to pursue this further, that someone has posted within the past year or I read it on here, that they are back to their old self and working after taking oxymatrine. I remember it because it excited me very much thinking the possibility of that for me. If I run across it I'll share it with you on the forum.

Love to see that story if you can find it again.

 

[halcyon]

Took a 1/4 Equilibrant last night, had some mild anxiety. Just took another 1/4 this morning, feeling a bit dizzy

I had a couple false starts with Equilibrant due to how sick it made me. 1/4 of a pill was too much for me to start with, I kept dropping down the dose until I could tolerate it, eventually just taking off the outer coating and crushing the pills into powder then taking like 10mg and titrating up from there.

 

[Jesse2233]

But given there are 17 million ME/CFS patients worldwide, and we might guess that say half of those are the enterovirus subset of ME/CFS, if oxymatrine makes major improvements in 30% of that subset, that's an awful lot of people that would be singing the praises of oxymatrine online, so you'd think the Internet would be awash with oxymatrine recovery stories.

Yes that logic makes sense, and I'm inclined to agree. But then how to explain Chia's claims? I don't think he's actively misleading people to promote a supplement he sells at cost. That doesn't seem to be in his character. I also don't think he's blind to his own patient population's level of improvement.

Perhaps it's a combination of him seeing modest improvements in some who use Equilibrant, and some very pronounced outlier cases. And him being more attenuated to those cases on a subconscious level because he's so deeply wedded to his theory and protocol. Not to mention the emotional impact of seeing his son so greatly improved. Without a peer reviewed study it's hard to know, and he likely does not have the time or funding for that.

It would be interesting to know how representative forums like these are of the ME population at large. In other diseases do people who have huge relief from a mode of treatment post about it in representative numbers? You certainly hear a large number of cancer success stories. Of course the protocol for most diseases is common so that the sample size is lager.

And how many people with serological evidence of an enterovirus infection and true ME have taken Equilibrant (preferably his supervision) and are active posters on forums.

Let's try to estimate... Chia says he's treated 1000 people with Equilibrant, so that would be 300 who have had the level of improvement he states at a 30% basis. If we discount that by half to get rid of any subconscious reporting bias he has, we get 150 people.

Is 150 a reasonable estimate? Say 10% post online, so there should be 15 Equilibrant success stories to find somewhere.

I'm making a lot of assumptions, let me know your thoughts

 

[Biarritz13]

Maybe not a lot of people have tried this product.

I am in touch with a lot of patients in France, some in other countries in Europe and I know only 2 people who is/was on it.

One has just started.The other couldn't cope with the side effect (extreme tiredness) so he didn't pursue.

 

[Murph]

Thanks Jesse for reporting on your visit. I think that sort of thing creates an important precedent that should improve care.

In the privacy of their rooms, with a patient present, doctors are king. They are free to to make themselves the centre of the universe and have all data serve their theories.

We can all point to times doctors ignored our points or said something that later didn't seem to make sense. If doctors know their consultations are going to be recorded and/or put online it should provide a chilling effect on their most egregious claims.

 

[Kati]

• Says the Incline Village outbreak was caused by a sewage leak into Lake Tahoe with protozoa that had enteroviruses inside of them

i wonder what Dr Peterson who witnessed the outbreak has to say about this?

 

[halcyon]

i wonder what Dr Peterson who witnessed the outbreak has to say about this?

There's some more detail about this that Chia provided in the RFI to NIH a while back.

1. EBV, the usual cause of mononucleosis, a self-limited fatiguing illness, was the primary virus candidate for ME/CFS. Although reactivation of EBV is possible after another acute viral infection, the epidemic nature of the Lake Tahoe outbreak was much more consistent with EV infection: a. the epidemic started in the summer when people have much more contact with lake water. b. EVs are known to exist in the lake/river water since 1970's according to the elegant works by Dr. Joseph Melnick, c. there was a major sewage spill on the implicated side of the large lake within the prior year, as documented in court proceeding papers and people knowledgeable of the epidemic, which likely served as a major amplification step for growth of EV. d. EVs are known to be associated with more than 100 species of fresh water protozoans, according to Scandinavian investigators. e. many of the Incline village patients had diarrhea in the beginning of the illness before developing ME/CFS, according to treating physician Dr. Dan Peterson, which was extremely uncommon for well-documented acute EBV infection.

 

[halcyon]

If you search google, it looks like sewage spills into Lake Tahoe happen with surprising regularity. I believe the spill he's referring to is referenced here though:

On February 18, 1983, a sewage spill took place at a sewage pump station owned by CBGID. On September 20, 1984, a complaint was filed by Theodore Geiszler and Steven Kaiser, residents of the area near the pump station (the "Geiszler-Kaiser suit") against CBGID, the Incline Village General Improvement District and the company that constructed the pump station. The complaint alleged that the pump station had constituted a nuisance since its construction. However, it identified only one specific incident of pollution: the February 18, 1983 spill. It alleged that the spill had "deposited raw sewage, effluent and waste water" on the property of the plaintiffs. CBGID tendered defense of the suit to Aetna. Aetna hired Paul Hamilton, a Reno attorney to defend the case.

 

[Kati]

There's some more detail about this that Chia provided in the RFI to NIH a while back.

It does not answer my question. I wonder what Dr Peterson think.

 

[Jesse2233]

I had a couple false starts with Equilibrant due to how sick it made me. 1/4 of a pill was too much for me to start with, I kept dropping down the dose until I could tolerate it, eventually just taking off the outer coating and crushing the pills into powder then taking like 10mg and titrating up from there.

Halcyon, did you have headaches initially? I'm in the middle of a pretty bad one

 

[halcyon]

Halcyon, did you have headaches initially? I'm in the middle of a pretty bad one

Yes. I had them before starting Equilibrant, but definitely getting started and each dose increase caused a headache the first day more often than not.

 

[Gingergrrl]

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.

Thank you for giving such a detailed report of your appt @Jesse2233! I felt relief that you had some similarities to my experience (in addition to the two people who PM'd me but asked me not to mention them, which I would never do)! When Dr. Chia walked into my appt (approx one year ago), his initial comment, before I said one word, was to criticize my doctor and the institution that he worked for and he followed it with how he was unappreciated and how all of the other docs were not collaborating w/him on his EV research, etc.

It put me on the defensive b/c my doctor (only a few months before) had helped to save my life during 2-3 months of daily allergic reactions to food until I was having ANA to everything but water. So I felt the need to defend him which I was not expecting to have to do! And then to defend that MCAS was a "real" disease after spending a week in the hospital from it.

I explained to him that I had waited eight months to see him (Dr. Chia) and had prepared copies of all of my medical records and he said he would not view them b/c they were from OMI. I explained the EV tests were from ARUP labs (no matter who had ordered them!) but it didn't matter. I explained that I specifically wanted info on EV's (as I thought my illness was viral vs. autoimmune at that time) but nothing I said mattered and 90% of my questions were not answered. I did not post about it at the time but probably should have just as you are doing now b/c I left the appt not wanting anyone else to experience what I had.

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.

Thanks for sharing this and I do not disagree with it (and did not mention RTX at my appt w/Dr. Chia) b/c at that time, I did not yet know that I had all of these auto-antibodies and learned of them all at different points in the following year. But I suspect he is correct and that RTX helps those with an autoimmune disease/sub-group/component or whatever we want to call it (vs. a smoldering virus).

In the privacy of their rooms, with a patient present, doctors are king. They are free to to make themselves the centre of the universe and have all data serve their theories. We can all point to times doctors ignored our points or said something that later didn't seem to make sense. If doctors know their consultations are going to be recorded and/or put online it should provide a chilling effect on their most egregious claims.

I very much agree with all of this. I had two very bad experiences w/doctors in a row in early 2016 but my current experiences w/my main doctor and MCAS doctor are so positive that it overshadows the bad ones.

i wonder what Dr Peterson who witnessed the outbreak has to say about this?

I would be curious about this, too. I have no idea re: the answer but am curious what Peterson or Cheney think since they were at ground zero at the time. It confuses me how ME/CFS could be a smoldering virus and an autoimmune disease at the same time (regardless of what label I give my own disease, am just curious in general).

 

[Hip]

Yes that logic makes sense, and I'm inclined to agree. But then how to explain Chia's claims? I don't think he's actively misleading people to promote a supplement he sells at cost. That doesn't seem to be in his character. I also don't think he's blind to his own patient population's level of improvement.

I agree, I don't think Dr Chia would exaggerate the effectiveness of his treatment. He is a fact-based physician and researcher, and dedicated to uncovering the fine details of ME/CFS (for example, he a stickler for investigating patients' full history leading up to their ME/CFS, and through this thoroughness was able to uncover one new causal factor in ME/CFS, namely the corticosteroid + virus trigger of ME/CFS).

Incidentally, to give you an example of his interest in researching patient histories, when I speculatively wrote to Dr Chia in 2008, sending him a link to my website which detailed all the mental and physical symptoms the nasty virus I caught had triggered in me, even though I was not even his patient, he was interested enough to read my entire website, and was kind enough to give me some good advice and info about viruses and ME/CFS.


Dr Chia did not have the funding to do a full oxymatrine study, so he performed a quasi-study, the results of which he detailed in the Invest in ME 2010 London Conference, and I have the video. In this study, he treated 100 patients with oxymatrine, and another 114 he used as healthy controls that were not treated (he did though treat them later with oxymatrine). He mentions a 52% improved on oxymatrine in this quasi-study, versus an 6% improvement in healthy controls. But he does not provide any figures on the percentage of patients that had a dramatic improvement on oxymatrine. Details of this quasi-study details are also to be found in Dr Chia's oxymatrine patent.


But how can we reconcile this 30% of patients that Dr Chia says have dramatic improvements on oxymatrine, with the fact that there are not that many reports online of these dramatic improvements.

Switching into brainstorming mode for a moment, the first crazy idea that springs to mind is that because Dr Chia is based in Southern California, then assuming many of his patients are locals, they are going have higher sunshine exposure, which leads to higher levels of vitamin D, which effects Th1/Th2 in complex ways.

And vitamin D is also important in fighting intracellular pathogens (of which non-cytolytic enteroviruses are one); indeed, the Marshall Protocol for ME/CFS uses Benicar (which powerfully activates the vitamin D receptor, like a super-powered vitamin D) to fight intracellular pathogens. So maybe oxymatrine + vitamin D gets better results. But this is quite a way out suggestion, and in any case, I am not sure just how many of Chia's patients are locals, as people travel a long way to see him.

 

[Hip]

When Dr. Chia walked into my appt (approx one year ago), his initial comment, before I said one word, was to criticize my doctor and the institution that he worked for and he followed it with how he was unappreciated and how all of the other docs were not collaborating w/him on his EV research, etc.

Just to be clear, are you criticizing Dr Chia here because: (1) he has his own opinions and expresses them; (2) he has his own opinions with which you disagree; (3) he has a lower regard for some doctors that you hold in high regard?

All doctors have opinions; all people have opinions. For example, some doctors support euthanasia, others are against it. I am not sure if it is fair to criticize someone just for expressing their opinions. I have encountered some very good doctors who had different opinions to mine.

As for the MCAS, you yourself said that you encountered many medical professionals that do not believe MCAS exists, so this skeptical view of MCAS is common, and not unique to Dr Chia.

 

[Gingergrrl]

Just to be clear, are you criticizing Dr Chia here because: (1) he has his own opinions and expresses them; (2) he has his own opinions with which you disagree; (3) he has a lower regard for some doctors that you hold in high regard?

All doctors have opinions; all people have opinions. For example, some doctors support euthanasia, others are against it. I am not sure if it is fair to criticize someone just for expressing their opinions. I have encountered some very good doctors who had different opinions to mine.

As for the MCAS, you yourself said that you encountered many medical professionals that do not believe MCAS exists, so this skeptical view of MCAS is common, and not unique to Dr Chia.

I'll give this one more try and then really will bow out of this thread. I do not care what opinion any doctors have of each other in private. I waited eight months for that appt and spent about a week putting my medical history together and my mom xeroxed everything for the appt b/c my muscles were too weak to xerox papers at that time (and now I can easily xerox and do pretty close to normal muscle tasks since IVIG including opening & closing the front door by myself, preparing my own food, etc).

The doctor walked into the room and before me or my husband said ONE word he made a quite negative comment about my doctor who I do hold in high regard. He then gave a monologue on how he was unappreciated and not funded like the location where my doctor worked as if this was some how my fault?!!

He refused to view my medical records b/c they came from OMI. I questioned this and he said he would not look at any viral titers from OMI (even though the labs itself were from ARUP)! After explaining that I was diagnosed with MCAS by one of the top ten MCAS doctors (probably world-wide) and spent a week in hospital with anaphylaxis, he doubted whether this diagnosis existed which I found hurtful. In spite of this, I told him that I viewed him as the world expert on EV's and that I had done the ARUP testing twice and very much wanted his opinion and ideas for treatment. He told me that he had no treatment to offer me and told me to stop Valcyte which was not even prescribed by him and not something meant to be abruptly stopped.

I left with a very hopeless feeling. I am sharing my own experience in case it helps someone else and I am sharing it in the most polite way possible. I expected more from the appt so I was disappointed vs. some other appts where I expected nothing. Yes many docs do not believe MCAS is real. Many docs do not believe ME/CFS or POTS is real. I do not feel this is an excuse for how I was treated nor the comments about my doctor. I waited a year to say anything about this on PR but realize that it does bother me and when Jesse sincerely asked to hear more, I decided to share.

I knew I would be criticized for being honest, and I can take it. I just don't have too much more time to spend on this. And the fact that I posted it voluntarily, I knew it would open it up for replies and I respect that. It is what it is and I am blessed for the two doctors that I have advocating for me now.

 

[Hip]

@Gingergrrl
I'll give you a story of an encounter I had with a forward thinking doctor in 1989. When I was younger, always suffered from inexplicable short bouts of significant depression that would suddenly appear any time during the day, and then ease off around 6 hours later.

Now, one of my very first forays into health was reading a book about food intolerances (a very new idea in 1989), and the notion that a common food which you regularly eat may be inadvertently affecting your health. I got quite enthusiastic about this idea, and decided to do a full exclusion diet (which takes several months) in order to identify any foods that might be causing adverse effects to my health.

To cut a long story short, I was amazed to find that eating wheat/gluten was the trigger and cause of all these inexplicable bouts of depression I had always suffered from. From then on, I became gluten free (at a time when almost nobody had ever heard of being gluten free), and felt so much better.

I then decided to book and appointment with a very good doctor who specialized in food intolerances among other things, a concept few in the medical profession had heard of in those days. He was a very nice guy, very empathetic, and I explained the gluten-triggered depression I suffered from.

The problem was that he would not believe me. He was very nice, but said that this was unheard of in medical literature. And I could not persuade him to take a different view. So I left it there, and did not mention it further, as I knew that nothing I could say would change his mind. Of course, these days, gluten-induced depression is well known in medicine, so it turned out that I was right. In fact, I may have even been the first person in the world to discover gluten-induced depression! But I have absolutely no criticism of that doctor, or his opinions. I thought he was a great doctor, in spite of the fact he did not believe me.