Scientific explanation for binder reactions???

[TJ_in_UT]

Fellow moldies, we all know that ramping up on binders too quickly (or even using them at all, for some), can provoke very unpleasant reactions. It seems like I'm on the receiving end of that lately.

I have a wild theory about why that might happen, but no clue if it makes any sense. So far, I haven't learned of any scientifically valid explanation for this phenomena. Are any of you aware of the science behind this?

 

[Rufous McKinney]

Are any of you aware of the science behind this?

frankly I don't understand it. Hopefully somebody can arrive who does.

But I read that the charcoal will let go of X to pick up and gather Y, and this is hard to understand, chemistry wise...

 

[TJ_in_UT]

frankly I don't understand it. Hopefully somebody can arrive who does.

But I read that the charcoal will let go of X to pick up and gather Y, and this is hard to understand, chemistry wise...

I'm thinking more about cholestyramine (CSM) and Welchol, but perhaps something similar happens with charcoal. Dr. Shoemaker says that charcoal and clay have negatively charged binding sites, like the biotoxins themselves, and so don't work well, while CSM and Welchol have positively changed binding sites.

 

[hapl808]

I think all of this stuff (including Shoemaker's underlying theories) are just hypotheses at the moment. How binders work, even if binders work, VCS, mycotoxin testing, etc - still in the very early stages. I take various binders, but I have a hard time figuring out if it's helping and how to use them most effectively. I think they're doing something, but who knows exactly what.

TL;dr we don't really understand the chemistry, so it's more guesswork than science per se.

 

[TJ_in_UT]

Shoemaker seems to be very intent on basing his process on evidence, and it seems like he gets consistent, good results, so I'm inclined to say there's more than guesswork going on. But clearly, there are still some mysteries, such as the question I posed, as well as the lack of a solid explanation for the varying degrees of susceptibility among humans (HLA genes are kind of there but we need a better explanation than that).

My personal theory is something like this: through some mechanism I don't understand, our bodies sequester some of the fat-soluble toxins that are circulation in our bodies in fat tissue, probably because they do less damage there than elsewhere. Perhaps there's a "toxin thermostat" to dictate how much energy should be expended on stashing away toxins and keeping them there (assuming there is an active process, not just a passive one). Perhaps taking a binder lowers toxins below that threshold, so that the body relaxes its efforts to contain these toxins, allowing more of them to come our of storage into circulation again, temporarily increasing toxin load. I can't point to any evidence to support this theory, though; it's just speculation.

 

[hapl808]

I think that theory makes reasonable sense. It's hard to prove the binder theories, but most are along similar lines of adsorbed toxins, etc.

As for Shoemaker - every specialist I've ever seen or talked to says they get consistent, good results. Nathan, Kaiser, Shoemaker, etc. Psychiatrists claim the same thing, so does DNRS, etc.

I saw a Shoemaker protege and didn't get particularly good results or find the process helpful. They were sure I'd test positive for MARCoNS but I didn't. They had lots of pseudo-scientific explanations for what my VCS supposedly showed. I took CSM for weeks at full dosage with no response, then got a really bad reaction and the doctor pretty much shrugged and told me to discuss the reaction with my GP (who would've been clueless on why I was taking a cholesterol medication).

At that point I stopped seeing them after they just wanted more money to even discuss my case. I've never had another physician RX me meds and then try to charge me to discuss a bad reaction to them (not an appointment - just a "what should I do" email or phone call).

But of course, YMMV. That's what makes treatment challenging.

 

[Dufresne]

-Concerning binders, the fact that people with illnesses such as ours tend to have such a hard time with them should tell us there is something going on. here Healthy folks taking CSM to lower their cholesterol don't get slaughtered the way we do. Is that confirmation there's a build up of toxins within us?

-Every doctor in the alternative sphere inflates their success rate with these conditions. It's no doubt a combination of encouraging patients, encouraging themselves, and promoting their ideas and making a few bucks. You have to take it all with a grain of salt. Veteran sufferers, on the other hand, will tell you very honestly what has worked for them and to what extent. Regarding mold illness, the extreme avoiders camp is pretty convinced they're on the right track, and it seems to me the majority of patients that try that route say there is definitely something to it. Interestingly about 90% of them will also tell you binders are counterproductive.

-Shoemaker's HLA DR theory is probably bullshit. This has been much discussed and I won't bother with a recap here. It is worth noting that his theory as to why we're not detoxifying (HLA DR) is at odds with what extreme avoiders are finding. Shoemaker is maintaining that we're genetically incapable of recognizing the toxins and that's why we have to use binders. The avoiders generally claim that we don't detoxify until we're in a really clean environment. Well being in a really clean environment is not going to suddenly make one genetically capable of recognizing and then jettisoning toxins. If it is true that we begin to detoxify once in a clean environment this would disprove Shoemaker's claims about HLA DR.

 

[Dufresne]

These are pictures of what happened to my clothes last summer from just a couple months of extreme avoidance. I’d owned the shoes for about 8 months prior to beginning the experiment without any change in colour. The shorts were bought new for the occasion, as were a number of shirts that had the same thing happen to them. There was no change in my detergent and I never washed the shoes.

None of this effect can be seen on my bedding. I assume this is due to my bedding never really being exposed to UV light while steeped in my sweat (I’d remove it from my trailer, wash it and then hang it up in the sun to dry). Notice the bleaching effect is present on the outside of my shorts but not the inside. You can also see this on the tongue of the shoes (all these clothes have since been repurposed for painting).

I can't say I know what this is but I can tell you it only happens when I'm practicing extreme avoidance.

 

[TJ_in_UT]

-Concerning binders, the fact that people with illnesses such as ours tend to have such a hard time with them should tell us there is something going on. here Healthy folks taking CSM to lower their cholesterol don't get slaughtered the way we do. Is that confirmation there's a build up of toxins within us?

-Every doctor in the alternative sphere inflates their success rate with these conditions. It's no doubt a combination of encouraging patients, encouraging themselves, and promoting their ideas and making a few bucks. You have to take it all with a grain of salt. Veteran sufferers, on the other hand, will tell you very honestly what has worked for them and to what extent. Regarding mold illness, the extreme avoiders camp is pretty convinced they're on the right track, and it seems to me the majority of patients that try that route say there is definitely something to it. Interestingly about 90% of them will also tell you binders are counterproductive.

-Shoemaker's HLA DR theory is probably bullshit. This has been much discussed and I won't bother with a recap here. It is worth noting that his theory as to why we're not detoxifying (HLA DR) is at odds with what extreme avoiders are finding. Shoemaker is maintaining that we're genetically incapable of recognizing the toxins and that's why we have to use binders. The avoiders generally claim that we don't detoxify until we're in a really clean environment. Well being in a really clean environment is not going to suddenly make one genetically capable of recognizing and then jettisoning toxins. If it is true that we begin to detoxify once in a clean environment this would disprove Shoemaker's claims about HLA DR.

The bad effects of biotoxin binders are probably confirmation of biotoxin buildup. I've learned since my last post that biotoxins are small enough to pass through cell walls without assistance, making them susceptible to osmotic pressure. So I think the toxin mobilization theory is right; remove biotoxins quickly in one area (gut/liver area), and osmosis draws biotoxins out of other places, and they cause damage while passing through.

I think both the extreme mold avoiders (EMAs) and Dr. Shoemaker are both right:

• Everyone eliminates biotoxins at a slow rate through simple excretion of urine, sweat, etc.; if you are an EMA, and doing that successfully, you will experience some improvements through slow detoxification over time because you're taking in new toxins at a lower rate than you are excreting them;
• Defective HLA variations have no bearing on the detoxification process; rather, they impair the body's ability to form the antibodies against biotoxins that are needed for a targeted attack, and which then destroy them much more quickly than they can be excreted.

Personally, I find some degree of improvement of time when I'm more successful at avoiding contaminated environments, even without binders. However, I suspect this effect reaches a functional plateau where the remaining biotoxins in the body take longer and longer to decrease by the same amount (that seems consistent to me with osmosis). Binders probably help speed up that process. I'm working with binders because I want to dig deeper and get out more of the toxins than will come out easily, and also because EMA isn't practical for me. My wife and I aren't financially independent, and can't work remotely (she's a preschool special ed teacher, and I'm a truck driver). We have to live in the world, not the wilderness.

I'd be curious to see if a long-time EMAs would experience an unpleasant reaction to binders. If so, that suggests that this might be true.