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

[Gingergrrl]

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 slot of effort to go se them.

@Sancar I was also told no to IVIG by Dr. Chia and that EBV, mold/mycotoxins, and MCAS were either not real or were no big deal. My IVIG is prescribed by my two main doctors (vs. I just had a one-time consult with Dr. Chia). I did not actually ask Dr. Chia to prescribe me IVIG (b/c I did not even know yet at that time that I had any of these auto-antibodies until the following month) but I did inquire about IVIG as a potential treatment for me and was told (basically) the same response as you.

 

[Sancar]

@Gingergrrl ~ Thank you for your reply. I do think and know Dr. Chia a brilliant Doctor. He has worked very hard to help many.
It's difficult to understand when you are so ill ~ why one protocol such as IVIG, which IS FDA approved, doesn't get more study or attention toward the benefits for our disease??? It could be for so many...

 

[Gingergrrl]

@Gingergrrl ~ Than you for your reply. I do think and know Dr. Chia a brilliant Doctor. He has worked very hard to help many.
It's difficult to understand when you are so ill ~ why one protocol such as IVIG, which IS FDA approved, doesn't get more study or attention toward the benefits for our disease??? It could be if so many...

I think it is b/c IVIG is so expensive and takes so much work to get insurance to approve it (if you are requesting it "off-label" which is the case for almost all diagnoses except a small handful) that most doctors do not want to bother with it. I was very lucky that my two doctors both believed that it could help me and advocated for me to have the opportunity to try it. It took six months to get it (and many doctors turned me down). I have now done it for ten months and tomorrow is my last approved cycle but am hoping we will be able to get additional approved (but not certain if we will). Not b/c of my docs but b/c of my insurance.

 

[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?

Yes Dr Chia is prescribing it directly. He said something similar to me when I asked the first time. So I went and spoke to another infectious disease doctor who had worked with Chia in the past and agreed IVIG would be worth trying. But he was unable as he didn't IVIG prescribing privileges but I was able to call Chia's office and mention the other ID doc and that got Chia to agree. If you'd like me to share the name of the other ID doc shoot me a PM

 

[Jesse2233]

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?

He said he considers Lyme a catch-all that isn't generally useful unless there's direct evidence. He doesn't seem to care much for IgeniX either. A different ID doc concurred with that opinion as well

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.

Thanks for that Hip

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

Yes, have failed it twice now. Not 100% it's a good diagnostic though, what if someone has vision problems?

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)?

He believes it's enterovirus, but he still thinks IVIG is useful in those cases (due to calming the immune system and addressing secondary POTS). He doesn't think the same for PP

 

[Hip]

Yes, have failed it twice now. Not 100% it's a good diagnostic though, what if someone has vision problems?

I pass the VCS test with flying colors, with a score of 87%, but I don't have any mold exposure history.

This VCS test is not keyed on the sharpness of your vision, but rather your ability to detect subtle differences in brightness. The retina has neurons in it which do the light sensing and information processing, and I believe VCS tests the functioning of these usefully accessible neurons of the eye. This test 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.

Just how useful or reliable this VCS test is, I am not sure. I just found this study, which compared the VCS results of employees working in a water-damaged school (thus having a mold problem), to those working in a school that was not water-damaged; the former had lower VCS values than the latter, so the VCS result does seem to correlate to mold exposure. But the authors state that they do not recommend using the VCS in evaluation of people exposed to mold.

 

[Jesse2233]

@Hip interesting, given the results of the study do you know why the authors don't recommend VCS?

 

[Gingergrrl]

He believes it's enterovirus, but he still thinks IVIG is useful in those cases (due to calming the immune system and addressing secondary POTS).

Jesse, am just curious, when Dr. Chia said that he believes that IVIG can address secondary POTS, is he referring to high dose IVIG (like you would use in autoimmunity and neuromuscular disorders) or low-dose (like for immune deficiency)? Thanks and no worries if you do not know. From my research and discussing with my doctor, it seems that high dose is what is used for POTS but wondered if Dr. Chia agreed with this?

 

[Jesse2233]

Jesse, am just curious, when Dr. Chia said that he believes that IVIG can address secondary POTS, is he referring to high dose IVIG (like you would use in autoimmunity and neuromuscular disorders) or low-dose (like for immune deficiency)? Thanks and no worries if you do not know. From my research and discussing with my doctor, it seems that high dose is what is used for POTS but wondered if Dr. Chia agreed with this?

Dr Chia does think IVIG can help POTS but he believes the required dose is specific to the individual and that more is not necessarily better. He also seemed to imply that in some cases one dose of IVIG can cure POTS completely

I should note that I've read similar things to what you mentioned about the autoimmune dose being better, but Chia may be basing this on his clinical experience

 

[Hip]

@Hip interesting, given the results of the study do you know why the authors don't recommend VCS?

I don't know their reasons, but maybe it relates to the fact that other conditions apart from mold exposure can cause a low VCS result, so it is not specific for mold.

 

[Gingergrrl]

He also seemed to imply that in some cases one dose of IVIG can cure POTS completely

I have never heard of one dose of IVIG curing POTS and have watched the videos of Dr. Kem from Dysautonomia International and spoken to many docs about this. The theory (as far as I can tell) is that for those of us with Autoimmune POTS (which both of my docs believe that I have based on the Cell Trend Abs and other testing) is that high dose IVIG given over a period of time can help POTS but that it is not a cure. Does he have any references on this? I could see it possibly happening with Ritux if it wiped out the B-Cells and no new auto-antibodies were made over the course of a year but not sure how it could happen from one dose of IVIG!

 

[Jesse2233]

@Gingergrrl

I'm not sure Ginger, perhaps in mild, early or purely viral cases IVIG can be curative. I was speaking with a pure POTS patient a month ago who also claimed some are cured by one dose IVIG. I'd imagine it's not common

My other doctor said the nice thing about IVIG is that it has both anti-viral and anti-autoimmune mechanisms of action

 

[Gingergrrl]

@Jesse2233 That is fascinating re: IVIG and it's without question the best treatment I have done in four years of being sick (although I still have POTS)!

We took my dog to vet yesterday and I could climb the one stair and walk a few feet to the chairs and remember last year (before high dose IVIG) that I could not do this and someone had to literally carry me over the stair and I never left my wheelchair for the entire vet appt.

Would love to chat with the person (people?) cured of POTS w/one dose of IVIG and still struggle to just understand the mechanism of how it has helped me so much.

 

[Hip]

@Jesse2233, you might find this new resource page by "Ryan" about recovering from mold illness of interest.

The interesting thing is that Ryan makes a clear distinction between chronic inflammatory response syndrome (CIRS), which is the name Dr Shoemaker uses for mold and biotoxin-induced illness, and ME/CFS. He says that he was misdiagnosed with ME/CFS for 10 years, when he actually had CIRS. Once he accepted he CIRS diagnosis, and followed aspects of Dr Shoemaker's treatment protocol for CIRS, he made dramatic improvements.

So I guess the message is that because CIRS and ME/CFS have very similar symptoms, you need to make sure you are not misdiagnosed, or else you may end up with the wrong treatment.

The diagnostic criteria for CIRS are given on page 4 of this document.

Of course, patients who are exposed to both mold and viruses may have a combination of CIRS and ME/CFS, so perhaps it may not always be a clearcut case of whether you have either CIRS or ME/CFS; you may have a bit of both.

 

[Hip]

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.

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).

I have been trying to find some more info on the notion that mycotoxins (and other biotoxins) may remain in the body for a long time.

This idea of mycotoxins that you cannot easily detoxify seems to feature in Dr Ritchie Shoemaker's work. See here for example:

Biotoxins That Cause CIRS
• Ionophoric

– Very small, can move into cells and out of cells.​

• Not easily detectable in the blood.

• Secreted by liver into bile and reabsorbed back into body unless tagged by antibody.

– In genetically susceptible individuals, body is unable to tag toxins and therefore they are not removed but lead to chronic stimulation of immune system.​

So Shoemaker says that in these genetically susceptible patients, mycotoxins and other biotoxins are not detoxified. The genetic susceptibility Shoemaker refers to relates your HLA DR genotype: Shoemaker say that 24% of the population have the genotype that makes them unable to properly detoxify mycotoxins and biotoxins. Shoemaker's treatment is to use cholestyramine, which binds to the mycotoxins in the intestines, and pulls them out of the body.

Just how much evidence there is for such undetoxifiable mycotoxins I am not sure, but cholestyramine seems an easy enough treatment to try, since it is not particularly expensive. Taking cholestyramine is one of the first steps in the 11 step Shoemaker protocol for mold illness.

 

[halcyon]

Do mycotoxins contain antigenic regions that the immune system would recognize and produce antibodies against?

 

[Hip]

Do mycotoxins contain antigenic regions that the immune system would recognize and produce antibodies against?

That's a good question. I found this study which mentions that individuals who were exposed to water-damaged buildings (where there is lots of mold) have antibodies to mold and mycotoxins.

But I have yet to find any studies showing that tagging of mycotoxins by antibodies is required in order for the mycotoxin to be properly expelled via the intestines. I wonder where Dr Shoemaker got this idea from? Was it his own idea?

If you look at this document listing mycotoxin half lives, in many case the half lives are very short, in the order of 30 minutes; but a few of the mycotoxins have longer half lives of around 30 days. Nevertheless, 6 months after exposure, you'd expect nearly all mycotoxins to be out of the body, if this document is to be believed.

The document does not directly mention Shoemaker, but is critical of doctors who use cholestyramine to detoxify mycotoxins, and says that the half life data argues against the theories of doctors who say that mycotoxin get "stuck" in the bodies of individuals (individuals with certain HLA DR genotypes, according to Shoemaker).

I don't know where the truth lies in this matter, but I don't see any harm in trying cholestyramine, for people who have been exposed to mold or other biotoxins (like blue-green algae, toxic cyanobacteria, or ciguatoxin), especially if they have a positive VCS test result.

 

[Vojta]

I don't know where the truth lies in this matter, but I don't see any harm in trying cholestyramine, for people who have been exposed to mold or other biotoxins (like blue-green algae, toxic cyanobacteria, or ciguatoxin), especially if they have a positive VCS test result.

I thought cholestyramine (and other statins) are potentially disrupting mitochondria functions.
"Other cholesterol medications such as cholestyramine that bind to bile acids can distrupt the ETC."
http://www.mitoaction.org/blog/medication-exposures-mitochondrial-toxicity

 

[halcyon]

That's a good question. I found this study which mentions that individuals who were exposed to water-damaged buildings (where there is lots of mold) have antibodies to mold and mycotoxins.

Interesting. I guess that haptens such as mycotoxins don't directly illicit an immune response, it's only when they become bound to a protein that an antibody can be raised against them.

 

[Hip]

I thought cholestyramine (and other statins) are potentially disrupting mitochondria functions.

With the Shoemaker protocol, I understand that you do not take cholestyramine forever, but take it until your VCS test result comes back to normal, which might take a few months. Mycotoxins themselves can be toxic to mitochondria; see this post. There is a free online VCS test here.