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

[Gingergrrl]

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.

I agree with this and in my case, I had severe mono from EBV (March/April 2012) about seven months prior to moving into rental with toxic mold (Nov 2012). I think b/c my immune system was not fully recovered from the EBV (which I was IgM positive for several years post mono), that I was more susceptible to the mold vs. a healthy person.

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.

I did the HLA DR test and had what Shoemaker calls the most "Dreaded Haplotype" which cannot detox mold. He was not my doctor and my mold doc had very mixed feelings re: Shoemaker and created her own protocols which were tailored to each patient. What was interesting, and I did not understand it until the doctor explained it to me, is that (at that time), I tested negative in a urine sample for mycotoxins (from Brewer's lab) even though I was very sick and tested positive on blood work. My husband and step-daughter tested positive on the urine test (but were not sick like me although they were affected by the mold with headaches, sinus issues, etc). My mold doc said this was b/c my body could not detox the mold so it was not excreted by my urine vs. my family could detox it so it showed up in the urine test. She said we could re-test after I did nebulized glutathione and binders but I never did.

I was not able to try CSM (cholestyramine) at that time b/c my MCAS was so severe and my mold doctor felt it was too dangerous for me. I tried activated charcoal, bentonite clay, but could not tolerate micro dose (at that time) b/c of my MCAS. I ended up using Nebulized Glutathione (which was very helpful) and very gentle binders like oats and apple pectin. I did this for about 9-10 months approx.

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

@halcyon Does this mean that if someone has antibodies attacking the mycotoxins and the toxins finally went away but the antibodies mistakenly kept attacking, that they could turn into autoantibodies? I still cannot figure out how I ended up with eleven autoantibodies when everything for me started off viral and mold.

 

[Hip]

I did the HLA DR test and had what Shoemaker calls the most "Dreaded Haplotype" which cannot detox mold. He was not my doctor and my mold doc had very mixed feelings re: Shoemaker and created her own protocols which were tailored to each patient. What was interesting, and I did not understand it until the doctor explained it to me, is that (at that time), I tested negative in a urine sample for mycotoxins (from Brewer's lab) even though I was very sick and tested positive on blood work. My husband and step-daughter tested positive on the urine test (but were not sick like me although they were affected by the mold with headaches, sinus issues, etc). My mold doc said this was b/c my body could not detox the mold so it was not excreted by my urine vs. my family could detox it so it showed up in the urine test. She said we could re-test after I did nebulized glutathione and binders but I never did.

Very interesting, Gingergrrl. Was your doctor a Shoemaker certified doctor, or did she just follow some of Shoemaker's ideas and employ them in her practice?

It seems to me that Shoemaker's research needs to be validated by further independent studies. I have the feeling he discovered many important things about mold and biotoxins, but until further medical research confirms and validates these findings, they won't become standard doctor's training in medical schools.

 

[Sancar]

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.

Hi @Gingergrrl ~ I wanted to reply. To the issue of IVIG being "expensive and 'off label". Horse feathers!!!!
Look at the cost of Amplegin, a monthly supply of Valcyte and most other drugs? The cost to the general population for all 'who suffer' and are not able to work and spend time and money back into the census. I think I'm gong to start a forum on this issue. Thank your Gg for you replies.

 

[Sancar]

@Hip & @Gingergrrl ~ So if a person has:
1) A genetically 'compromised immune system',
2) Comes into contact with 'biotoxins' (perhaps work related, other environmental contact)
3) Exposed to Mycotoxins,

That is a perfectly horrible storm for a body to handle. Then try to fine a practitioner to work with those issues.
I'm Of the mind thinking that is what has happened to me.

 

[Gingergrrl]

Hi @Gingergrrl ~ I wanted to reply. To the issue of IVIG being "expensive and 'off label". Horse feathers!!!!
Look at the cost of Amplegin, a monthly supply of Valcyte and most other drugs? The cost to the general population for all 'who suffer' and are not able to work and spend time and money back into the census. I think I'm gong to start a forum on this issue. Thank your Gg for you replies.

I agree with everything you wrote @Sancar and I worked in a paid job starting at age 16 and then in my actual career from late 20's to age 43. I have now been on disability for three years (Edit: on private disability plan 2 yrs with SSDI only added the final year). IVIG is the first thing that even remotely made me feel like I could some day go back to work. It's been remarkable but not quite enough to allow me to stand/walk without wheelchair more than a few steps/minutes or drive a car (which would both be needed for me to work again).

But when I think back to not being able to open a bottle of water or prepare my own meals (pre-IVIG) and now I can easily do this (seated), it has been a miracle. This is why we think I could be a responder to Ritux, if only my insurance could see that two Ritux infusions might do more than ten months of IVIG. I have so much more I could contribute back to society if given the chance.

 

[Gingergrrl]

Very interesting, Gingergrrl. Was your doctor a Shoemaker certified doctor, or did she just follow some of Shoemaker's ideas and employ them in her practice?

@Hip She is not on that list so if that is the complete list of Shoemaker certified docs, then the answer is no. Am happy to tell you her name via PM if it would be helpful. She was the director of the US Environmental Dept for several years and really knows her stuff. She herself experienced toxic mold with her family and had to move and give up all of their belongings and had personal experience w/mold in addition to a very strong medical background.

It seems to me that Shoemaker's research needs to be validated by further independent studies. I have the feeling he discovered many important things about mold and biotoxins, but until further medical research confirms and validates these findings, they won't become standard doctor's training in medical schools.

I agree and I wish this stuff was taught in U.S. medical schools but can't imagine that happening any time soon.

@Hip & @Gingergrrl ~ So if a person has:
1) A genetically 'compromised immune system',
2) Comes into contact with 'biotoxins' (perhaps work related, other environmental contact)
3) Exposed to Mycotoxins,

That is a perfectly horrible storm for a body to handle. Then try to fine a practitioner to work with those issues.
I'm Of the mind thinking that is what has happened to me.

I agree and I had exposure to multiple toxins in the bldg I worked in at work for over 10 yrs (in additions to toxic mold at home the final 3 yrs) plus mono/EBV so I had multiple hits to the immune system that for some reason all flipped into autoimmunity, dysautonomia & MCAS.

 

[Sancar]

@Hip She is not on that list so if that is the complete list of Shoemaker certified docs, then the answer is no. Am happy to tell you her name via PM if it would be helpful. She was the director of the US Environmental Dept for several years and really knows her stuff. She herself experienced toxic mold with her family and had to move and give up all of their belongings and had personal experience w/mold in addition to a very strong medical background.



I agree and I wish this stuff was taught in U.S. medical schools but can't imagine that happening any time soon.



I agree and I had exposure to multiple toxins in the bldg I worked in at work for over 10 yrs (in additions to toxic mold at home the final 3 yrs) plus mono/EBV so I had multiple hits to the immune system that for some reason all flipped into autoimmunity, dysautonomia & MCAS.

@Gingergrrl - Dito ~~~ Ecept I was in toxic work environment for 25 years! I believe there was also mold for n the building (it was old and in East LA) through the the air ducts. I may be living with mold at this very moment. My house. ( I wish had some help or recourse to help me'pack up' necessities and get back to So Cal! Perhaps we could have a 'local support group' we could source and help each other?) didn't mean to get of topic....

 

[Gingergrrl]

@Gingergrrl - Dito ~~~ Ecept I was in toxic work environment for 25 years! I believe there was also mold for n the building (it was old and in East LA) through the the air ducts. I may be living with mold at this very moment. My house. ( I wish had some help or recourse to help me'pack up' necessities and get back to So Cal! Perhaps we could have a 'local support group' we could source and help each other?) didn't mean to get of topic....

Yes I relate very much and will reply via PM but wish you could find a way back to So CA as well

 

[Hip]

I was not able to try CSM (cholestyramine) at that time b/c my MCAS was so severe and my mold doctor felt it was too dangerous for me. I tried activated charcoal, bentonite clay, but could not tolerate micro dose (at that time) b/c of my MCAS

Does your doctor think that a course of cholestyramine might now be beneficial, since your MCAS is now much improved? If Shoemaker is to be believed that people like yourself with certain susceptible HLA DR genotypes have great difficulty in detoxifying biotoxins, then conceivably you may still have lots of mycotoxins in your body.

I understand that nothing really substitutes for cholestyramine (or Welchol) in terms of its mycotoxin-removing effects. Welchol is only 25% as effective compared to cholestyramine, according to Shoemaker, but Shoemaker found that all the other binders (charcoal, pectin, chlorella, etc) do not have much benefit, as far as improvements on the VCS are concerned. What's you VCS score these days, by the way? Is your score back to normal?

2) Comes into contact with 'biotoxins' (perhaps work related, other environmental contact)

Note that biotoxins are toxins made by living organisms such mold, fungi, bacteria, algae, spiders, etc.

Shoemaker also thinks that chronic infections with tick-borne microbes like Borrelia, Babesia, Bartonella, Anaplasma and Ehrlichia might potentially make biotoxins that can harm patients with HLA DR susceptibilities.

(Interestingly enough, Shoemakers says that over 95% of Lyme patients with symptoms that persist beyond antibiotics have these HLA DR susceptibilities; ref: here.)

Toxins that are not made my living organisms are a different category, so environmental toxins like pesticides would be a different category.

 

[Gingergrrl]

Does your doctor think that a course of cholestyramine might now be beneficial, since your MCAS is now much improved?

I don't see the Mold doctor anymore although I could definitely e-mail her with a question at any time. My sense was that she did not think my body would tolerate CSM and it would not be a good med for me. Since I am doing better now, I don't really want to add a new med into the mix (but it is within the realm of possibility that I could tolerate it now). The Shoemaker protocol involves taking a pretty high dose of CSM and she was going to have me take a micro dose if I did do it (but we never tried it).

 

[Valentijn]

1) A genetically 'compromised immune system',

I can't comment on Shoemaker's other research into mold, but his research into the genetics aspect was of extremely poor quality - basically he proved that his patients are North Americans, not that any HLA types are more susceptible.

I would expect that genetics play a role in environmental mold/toxin reactions, but at this point there isn't any indication of which genes or mutations they might be. There are some known mutations which make people more susceptible to infections from candida, aspergillus, etc, but that's likely a different mechanism since infection doesn't seem to be implicated in the type of exposure Shoemaker is talking about.

 

[Hip]

I can't comment on Shoemaker's other research into mold, but his research into the genetics aspect was of extremely poor quality - basically he proved that his patients are North Americans, not that any HLA types are more susceptible.

It probably requires a thread of its own, but could you please elaborate a bit on that. I have not looked at his studies, but I presume that Shoemaker must have found that certain HLA types were more frequently present in patients with mold-induced illness, and from this deduced that these HLA types must represent a susceptibility factor to mold and other biotoxins.

 

[halcyon]

Does this mean that if someone has antibodies attacking the mycotoxins and the toxins finally went away but the antibodies mistakenly kept attacking, that they could turn into autoantibodies?

I haven't looked but my bet is that there is zero research in this area. The wikipedia article I linked to on haptens states that they can induce autoimmune disease. One of the examples given is penicillin forming a hapten-carrier adduct with red blood cells and causing autoimmune hemolytic anemia. Penicillin of course being a chemical produced by Penicillium fungi. So perhaps in theory it might be possible.

 

[Hip]

@Gingergrrl, you didn't mention about your VCS test score, which would provide some indication of whether your body is clear of mycotoxins.

 

[Valentijn]

It probably requires a thread of its own, but could you please elaborate a bit on that. I have not looked at his studies, but I presume that Shoemaker must have found that certain HLA types were more frequently present in patients with mold-induced illness, and from this deduced that these HLA types must represent a susceptibility factor to mold and other biotoxins.

Yes, pretty much. But he compared the HLA types of his local patients to international rates of HLA types. Since HLA is highly variable based on ethnic origins, controls need to also be local, or at least use North American rates instead of international rates.

So the end result was that his "research" claimed that the most common HLA types seen in North Americans were the ones which cause susceptibility for mold. If looking at the rates of those supposed problematic HLA types, around 90% of Americans would be extra susceptible to a variety of things.

The research also was never published anywhere except on his own website, and for very good reason

 

[Jesse2233]

Yes, pretty much. But he compared the HLA types of his local patients to international rates of HLA types. Since HLA is highly variable based on ethnic origins, controls need to also be local, or at least use North American rates instead of international rates.

So the end result was that his "research" claimed that the most common HLA types seen in North Americans were the ones which cause susceptibility for mold. If looking at the rates of those supposed problematic HLA types, around 90% of Americans would be extra susceptible to a variety of things.

The research also was never published anywhere except on his own website, and for very good reason

Yes I'm a bit skeptical of some of Shoemaker research (but not in terms of mold avoidance). Has anyone ever asked him about the North American issue?

 

[Hip]

@Valentijn, I had a quick search of Shoemaker's website www.survivingmold.com for this HLA paper, but could not find anything. Do you remember the title by chance? There are also a couple of his papers on PubMed (see here) which contain the term "HLA".

 

[Hip]

I wonder whether any of Dr Ritchie Shoemaker's idea might help throw light on the nature of ME/CFS. Even though he focuses on mold-induced illness, the fact that Dr Joseph Brewer found that prior mold exposure is common in ME/CFS patients suggests there may be some common areas between mold-induced illness and ME/CFS.

If you look at Shoemaker's 11 step treatment plan for mold-induced illness, which I have been scrutinizing in recent days, there are some interesting interventions there — interventions which might both throw light on the nature of ME/CFS, as well as serve as possible treatments for ME/CFS.

One of those 11 steps that stood out for me was step 10: the lowering of elevated TGF beta-1 in mold patients, which Shoemaker achieves using the drug losartan at a low dose of 25 mg twice daily. Ref: 1

And there are several supplements that reduce TGF beta-1 as well, including: curcumin, vitamin D, Rhodiola rosea, ginkgo biloba, taurine, EGCG, genistein, licorice, N-acetyl-cysteine and resveratrol.

TGF beta-1 is elevated in both mold illness and in ME/CFS, and Shoemaker explains here the possible autoimmune consequences for having high TGF beta-1:

Underlying these new insights into abnormalities in T-reg cells is the role of Th17 immunity, in which plasma TGF beta-1 is a major marker.

When we have the combo of high TGF beta-1 and low T-regs what is happening is that the helpful, good guy T-regs are being directed into tissue by TGF beta-1 where the wonderfully helpful T-regs are converted (plasticized) into pathogenic T-cells that make more TGF beta-1 (OH NO!) which sends more T-regs to their death in tissue.

Get used to hearing Th17/T-reg imbalance: it is the new jargon word in modern immunology. We are now seeing countless references to Th17/T-reg imbalance in assessment of inflammatory illness from acute coronary syndrome to cirrhosis. No where can we show such abnormalities better than in mold illness.

So Shoemaker is basically saying that high TGF beta-1 kills T-regs.

The Th17/T-reg ratio is much higher than normal in several autoimmune diseases, and it is thought this ratio may play a causal role in such diseases. The high TGF beta-1 found in mold illness and ME/CFS likely contributes to this elevated Th17/T-reg ratio, because high TGF beta-1 kills T-regs, thereby increasing the ratio.

If we wanted to bring the Th17/T-reg ratio down, then inhibiting TGF beta-1 using losartan might be the first step; there are also a number of supplements and drugs (see here) that desirably inhibit Th17, and other which desirably boost T-regs, which will both serve to reduce a high Th17/T-reg ratio, and thereby possibly ameliorate autoimmunity.

Supplements and drugs that increase T-regs include: IGF-1, andrographolide (from Andrographis paniculata), selenium, vitamin D and rituximab.


Caveat: this study on the CVB4 triggering of type 1 diabetes in mice found that increasing TGF beta helped prevent diabetes from arises after CVB4 infection.

 

[Gingergrrl]

I haven't looked but my bet is that there is zero research in this area.

I would agree that there has probably been zero research on this and was just curious!

@Gingergrrl, you didn't mention about your VCS test score, which would provide some indication of whether your body is clear of mycotoxins.

For some reason (not sure why?) my mold doctor back in 2015 never asked me to do a VCS test so I have no idea what my score might have been and have no baseline to compare to (if I were to try to order the test now). She had me do a ton of testing (blood, urine and stool tests) plus the nasal swab test and I did that HLA DR test on my own b/c was so curious if I had the worst haplotype that couldn't detox mold and I did. I don't know if she simply does not endorse the VCS test as valid, or if she does but just didn't ask me to do it b/c things were so crazy for me with us trying find a place to live and just getting out of hospital w/anaphylaxis to all food (at that time).

TGF beta-1 is elevated in both mold illness and in ME/CFS, and Shoemaker explains here the possible autoimmune consequences for having high TGF beta-1:

Not sure how you would interpret this, Hip, but the mold doc tested my TGF beta 1 and it was extremely elevated at 9400 in July 2015 and it is currently 2100 (within the normal range which stops at 2380). She said it was an inflammation marker that is not specific to mold but gives a good picture of the inflammation that the mold is causing. In any case, post her treatments with nebulized glutathione and post-IVIG, mine is drastically decreased.

 

[Hip]

For some reason (not sure why?) my mold doctor back in 2015 never asked me to do a VCS test so I have no idea what my score might have been and have no baseline to compare to (if I were to try to order the test now).

The test is free, and takes about 5 minutes to do online, if you are interested. The test has its own baseline; you don't have to comparison to previous scores; you take the test, and it tells you whether or not you may currently be affected by biotoxins.