Multiple binders

[seamyb]

the last one I got happened about 10 days after starting on the bentonite

Yea, from now on I'm gonna test any change with a few days gap. So first dose of something followed by few days gap. Then if I tolerate it I'll keep that pattern with the gap. Then if I want to shorten the gap I will, but I'll have the old gap after I've tried the shortened gap, to see if that has any worsening. Then I'll try the shortened gap a few times if no worsening. The way I see it, the first couple of months on something will be for experiments and not for actual treatment.

I wonder if it might have been a factor for you in the bad response to Bentonite?

The binders have definitely changed something in my response to glutathione. In fact my last herx happened when I paused glutathione for a while because I felt like I was having particularly bad spells after a dose. I had been increasing glutathione too though, so perhaps it was the increase. For now I'm gonna take small amounts because I seem to do ok with them. Maybe I'll go back to cumin as well and try ALA.

That paper mentions about somebody who had a very bad fainting episode or something else really serious when she stopped taking binders and continued with glutathione. It recommends not doing the latter until the former is in place.

It also talks about how oxidative stress seems to be the source of a lot of the symptoms.

It was also interesting to note that they mentioned the lack of studies had something to do with the fact all the treatments for mould are readily available products (like vitamins and binders), ie not patentable. Classic!

Ah yea my mind spins with conspiracy in regards to this illness. I've an image of a lobbyist for landlords just slipping a scientist a fat envelope. Just think of the cost if this becomes a tangible cause of illness, both in the remediation of buildings and the lawsuits from sick people.

I don't know if it's the same for you but it definitely gives me some comfort and motivation knowing someone else is in the same boat as me on this! Maybe we could even rope in a few more members... especially if the treatment actually turns out to work!

It absolutely is the same for me. I sometimes despair at how difficult it is even though I have a far better idea of what's going on than I did a year ago. But I just have to remember how much worse it would be if I didn't have a clue what was going on. And it's great knowing that my experiences are shared and that there are others trialing the same things in different ways. All it takes is for one of us to start seeing improvements for validation. Let's just keep trying to get there!

 

[seamyb]

About 10mg of chlorella 2 nights ago, less than 1/20th of a tablet. Pretty terrible day today.

I wonder if the severity of my reactions is anything to do with gut permeability.

 

[Shanti1]

To add to the collective experience, I started taking Ultrabinder from QuickSilver seven days ago. For the first 3 days I tollerated it ok. Day 4 I felt more fatigued so I skipped day 5. Day 6 I took it in the morning and crashed for the rest of the day on the couch with extreme brain fog. Fortunately, I feel mostly recovered today. The QuickSilver product has a lot of differnt binders in it, so I am going to try again with just bentonite or charcoal and see if the experience is different.

I am also at a loss for the reason for the reaction. Herx? Leaky gut? I also considered that it was pulling so much water into my intestines that it aggravated my already low blood volume?

 

[seamyb]

I am also at a loss for the reason for the reaction. Herx? Leaky gut?

Just jiggles a load of toxins about in the gut causing them to be reabsorbed through entero-hepatic recirculation. You get rid of some and just jiggle some. The idea is that over time you've eventually gotten rid of enough so that you don't jiggle as many when you take it. Jiggle is the scientific term. But if you're at a level of sick from the natural flow of these toxins through and out of the gut, disturbing them will exacerbate your condition.

I can only imagine that leaky gut would compound the issue.

I have a theory that these toxins are usually further detoxified by bacteria in the gut. They're also harmful to bacteria (that's what fungi make them for). So over time with a chronic colonisation somewhere in the body, the gut loses its ability to detoxify them. I think this is what happened to me, because my suspected exposure was years ago and I only had a few mild issues here and there until I became sick.

Be very careful with bentonite and charcoal. I would leave a few days between tiny doses to begin with. The clues that you've taken too much come after the fact, when there's nothing you can do about it.

 

[Shanti1]

@seamyb I have read through the "Binders Thread" and have gained a new respect for bentonite and charcoal. Thank you for all the reporting you have done on this thread, I'm sorry it has been such a rough road. I will go slow with them.

I'm looking for the cleanest bentonite possible as I've seen it can contain high lead levels. So far the lowest I've found is 14mcg/g, which is still higher than the USP limit, but maybe ok short term. I'm not sure how much of a concern this is since bentonite binds heavy metals, but I wonder about it when it passes through the stomach acid, similar to how cooking something acidic in a clay pot can pull out lead. If you have any insights on this, please let me know.

I think your Jiggle Hypothesis is sound, but I'm holding out on deciding if my reaction is a herx until I see my reaction to bentonite/charcoal alone since the UltraBinder had so many ingredients. I also have clean Comprehensive Stool Analysis and SIBO tests and no GI symptoms, but I do have the history of Candia (cleared 5 years ago) and I know pathogens can be stealthy and sneaky little vermin, so could be being jiggled.

Interestingly, my husband can drink down charcoal and bentonite with absolutely no reaction (he has IBS with a touch of IBD and will use them for a flair), but I have seen reports of others having challenges with binders and bentonite. Dr. Jill Carnahan reported severe hives for a month when she started binders for CIRS (she was probably using cholestyramine).

 

[ljimbo423]

I am also at a loss for the reason for the reaction. Herx? Leaky gut?

A while ago I read that removing toxins from the body lowers blood levels of toxins. That allows new toxins, and potentially more, to be released from cells. Causing detox symptoms and misery, as the body tries to "catch-up" on removing the new toxins.

 

[seamyb]

I'm not sure how much of a concern this is since bentonite binds heavy metals

Well that's probably precisely why it may contain heavy metals. If it binds to them and comes into contact with them when in the natural world or being processed, it's gonna contain them. If you're anything like me, you'll be taking only tiny amounts anyway. There are no long term studies on bentonite or charcoal. They're just not usually taken for chronic conditions. So other binders are recommended for long term (chlorella, S.Boullardi, fiber etc) and bentonite etc for short bursts when needed. I've nothing that really quashes your concerns, unfortunately.

Interestingly, my husband can drink down charcoal and bentonite with absolutely no reaction

Adds proof to what we're saying. I'm sure normies like your husband have toxins and all sorts in the gut, yet they don't come to the internet every few days to say "I'm herxing again" when they take bentonite clay!

A while ago I read that removing toxins from the body lowers blood levels of toxins. That allows new toxins, and potentially more, to be released from cells. Causing detox symptoms and misery, as the body tries to "catch-up" on removing the new toxins.

This is interesting.

Actually, Nathan says that the blood levels can increase when binders are working properly, which would suggest more is being drawn out of the cells.

I would hope that this is the true reason why we experience these "herxes". It means that the overall effect is a good one and that in time we'll see improvements.

 

[ljimbo423]

I would hope that this is the true reason why we experience these "herxes". It means that the overall effect is a good one and that in time we'll see improvements.

This has been my experience. I use to get horrific detox symptoms from anything that helped my body to lower the level of toxins I had.

Now things like charcoal, milk thistle etc, don't cause detox symptoms. Which does suggest that I have lowered the level of toxins in my body quite a bit.

 

[hb8847]

Jiggle is the scientific term.

Sorry to hear about the Chlorella... as for what might be the cause I'm at a loss. Perhaps yes it has something to do with gut permeability. Or maybe there's some truth to the idea it's triggering your body to unload a bunch more toxins, which would be encouraging. Hopefully you have better luck with the S Boulardii.

I'm looking for the cleanest bentonite possible as I've seen it can contain high lead levels.

This is interesting, and not something I'd heard about. I've emailed my Bentonite supplier for comment, will report back here.

On a wider note I find it interesting that we're pretty much all reacting to binders, regardless of which ones they are, or whether we've tested for mycotoxins. Logically this suggests to me that many of our illnesses are being caused, or at least worsened, by some sort of toxin overload that the body is struggling to eradicate.

Theoretically all the binders are doing is dragging out the toxins - if displacement of some of said toxins is enough to trigger a worsening of symptoms it suggests that those toxins are the cause of the underlying illness. And if it were the binder itself triggering a reaction, the reaction would likely be immediate, not after a few days.

And even if the underlying illness were caused by something else, like a virus, then the toxic load clearly isn't helping the situation, and removal of those toxins would surely help the body eradicate the virus. No?

 

[Shanti1]

Well that's probably precisely why it may contain heavy metals. If it binds to them and comes into contact with them when in the natural world or being processed, it's gonna contain them. If you're anything like me, you'll be taking only tiny amounts anyway. There are no long term studies on bentonite or charcoal. They're just not usually taken for chronic conditions. So other binders are recommended for long term (chlorella, S.Boullardi, fiber etc) and bentonite etc for short bursts when needed. I've nothing that really quashes your concerns, unfortunately.

I did a deeper dive and found a few studies on bentonite clay reducing heavy metals in animals (despite its highish lead content), indicating that it is binding more inside an organism's GI tract than it releases. Unfortunately, I also found one study where bentonite clay ingestion increased lead levels in liver and kidney in mice (see last study below) However, the clay used in that study had relatively high lead levels.

Montmorillonite Superfine Composite = Bentonite Clay (Montorillonite is the main component of bentonite)

Effect of montmorillonite superfine composite on growth performance and tissue lead level in pigs (yu 3008)
https://pubmed.ncbi.nlm.nih.gov/18568297/
A feeding trial was conducted to study the effect of montmorillonite superfine composite (MSC) on growth performance and tissue lead levels in pigs. Sixty barrows were randomly divided into two groups. They were fed the same basal diet supplemented with 0 or 0.5% MSC, respectively, for 100 days.

Serum samples were collected and analyzed to study growth hormone secretion pattern. The mean lead concentration in selected tissues was analyzed. The results showed that average daily gain, average daily feed intake, and feed conversion ratio of pigs were improved by 8.97% (p < 0.05), 3.90% (p < 0.05), and 4.76% (p < 0.05), respectively, with the supplementation of MSC compared to the control group.

Serum sample analysis indicated that peak amplitude, base-line level, and mean level of growth hormone were increased by 117.14% (p < 0.01), 42.78% (p < 0.01), and 51.75% (p < 0.01), respectively. Supplementation of MSC in the diet was found to significantly reduce lead concentration of tissues in blood, brain, liver, bone, kidney and hair.

Bentonite Clay as a Natural Remedy: A Brief Review (Moosavi 2017)
Copper toxicity, also called copperiedus, refers to the consequences of an excess of copper in the body. Consistently in sheep, it was concluded the dietary Cu bioavailability could be decreased by oral supplements of bentonite (24). Cadmium is an extremely toxic metal commonly found in industrial workplaces. The exposure of carp (Carassius auratus to dietary cadmium caused oxidative stress, while montmorillonite supplemented in diet reversed relatively cadmium-induced oxidative damage in liver and kidney (25). Bentonite is additionally reported to decrease cadmium induced cytotoxicity and genotoxicity in Nile tilapia fish (26). Generally, it seems that bentonite is a reliable treatment for metal poisoning.

In this study, the mice ingested the clay by when cleaning themselves grooming

Elevated Arsenic and Lead Concentrations in Natural Healing Clay Applied Topically as a Treatment for Ulcerative Dermatitis in Mice (Whiteside 2020)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7073401/
In conclusion, we have demonstrated that 3 brands of commercially available healing clay products are naturally contaminated with high levels of arsenic and lead. Despite being unable to demonstrate any significant biologic effects, one brand that has the potential to cause harmful effects when entering the body showed a significant increase in the concentration of lead accumulation in the liver and kidneys of clay-treated mice compared with controls.

 

[Shanti1]

I decided to move ahead with bentonite, I think the evidence is in favor if you choose one with relatively lower lead content. I noticed that a lot of companies use "food grade" or "pharmaceutical grade" on their label, but offer no proof of testing. I decided to go with Pure Clay from Tierra Buena because they at least disclose their testing results.

For reference, US USP levels should be <5mcg/day for lead and <10mcg/day for arsenic. The levels of lead and arsenic on the Certificate of Analysis from Pure Clay are 14mcg/g *lead) and 16mcg/g (arsenic). This is actually lower than levels in bentonite reported in the literature, so it may be as good as it gets.

Certificate of Analysis: https://67473368-4a88-4cf7-8d0b-612...d/fea46c_f61768bd073c4f2d98a45c1e1d5d7acd.pdf

 

[Shanti1]

Now things like charcoal, milk thistle etc, don't cause detox symptoms. Which does suggest that I have lowered the level of toxins in my body quite a bit.

It is encouraging to hear from someone who has passed through to the other side!

On a wider note I find it interesting that we're pretty much all reacting to binders, regardless of which ones they are, or whether we've tested for mycotoxins. Logically this suggests to me that many of our illnesses are being caused, or at least worsened, by some sort of toxin overload that the body is struggling to eradicate.

Yes, it is interesting! Whether it is herxing, toxin mobilization, both, or something else, something may be unique in how these binders affect people pwME.

I just took my first dose of bentonite (using my older product while I wait for the Pure Clay), we'll see how I feel tomorrow.

 

[seamyb]

@Shanti1 Day 3 is when I felt the worst. I actually seemed to do better the day after taking it and so I thought I'd keep taking it every night in an attempt to preserve that observation. That was a mistake. My advice is to do it every 3 days for a while just in case the bad effects from a dose take this long to manifest and you end up compounding them. Let us know how you get on.

@hb8847 I think I'm gonna keep at the chlorella a while. I'll see how I am tomorrow, but I'm happy just to take it every few days. Today wasn't all that bad, just felt somewhat worse. I didn't have to go lie down in a dark room and try to clear my mind because thinking hurts. So that's a plus.

 

[Shanti1]

My advice is to do it every 3 days for a while just in case the bad effects from a dose take this long to manifest and you end up compounding them. Let us know how you get on.

Every 3 days it is, I'm not interested in a setback. I'll let everyone know how it goes.

 

[seamyb]

@ljimbo423 did you see improvements by continuing with the binders and the subsequent worsenings? Also were you taking them every day or with considerable gaps in between?

Cheers

 

[ljimbo423]

@ljimbo423 did you see improvements by continuing with the binders and the subsequent worsenings? Also were you taking them every day or with considerable gaps in between?

Cheers

I'm not very clear on how I experienced improvements from the charcoal, when I first started taking it. It was a few years ago now. I do know that I often feel better within 30 minutes after I take the 3.4 grams I take a day now.

I also don't remember how I did the dosing. I probably did what I did for years when I would detox or get herxes from supplements.

I probably started at a very low dose and only took that every few days or so, based on how I felt. Because my detoxing symptoms or herxing would do to me what they have been doing to you.

I've always been able to get passed the herx or detox symptoms, as long as I stick with it, but go at a pace I can tolerate. I use to take the equivalent of 6 grams a day of oregano, as a 10:1 extract of oregano oil, without problems.

When I first started taking it, even 1 drop of very weak oregano oil, would almost put me in a coma! Time and patients were key. Now I can increase my oregano intake 1.5 gms (150 mg of 10:1 oil) at a time, with only minor herxes.

I think my experience is fairly common in those of us with ME/CFS. As you know though, the detoxing or herxing can be unbearable.

 

[seamyb]

I do know that I often feel better within 30 minutes after I take the 3.4 grams I take a day now.

So you feel better and then wake up the next day feeling like crap again? This would suggest to me that you've toxins being generated somewhere on an ongoing basis. Have you ever tried the nasal antifungal stuff? I'd bet money on it at least having some effect.

use to take the equivalent of 6 grams a day of oregano, as a 10:1 extract of oregano oil, without problems.

This would be as an antimicrobial aimed at the gut? Or is it more of a systemic thing where it gets absorbed into the bloodstream and distributed?

 

[ljimbo423]

So you feel better and then wake up the next day feeling like crap again? This would suggest to me that you've toxins being generated somewhere on an ongoing basis. Have you ever tried the nasal antifungal stuff? I'd bet money on it at least having some effect.

Yes. The toxins are being generated constantly.

I have tried grapefruit seed extract and maybe one or 2 others up my nose but didn't notice anything. I feel confident (after 14 years of research) that a leaky gut is the source of the toxins. I've been working on my gut for years but can't seem to heal it.

I do have an anxiety disorder, and stress and anxiety can really mess up the gut. But I also have taken dozens of courses of antibiotics, and ate I very high sugar, junk food diet most of my life too.

So I think my anxiety is what keeps my gut messed up, after years of antibiotics and junk food created severe dysbiosis and leaky gut. I'm pretty sure I've addressed all the other causes of gut dysbiosis I had, now for years but my gut is still messed up.

This would be as an antimicrobial aimed at the gut? Or is it more of a systemic thing where it gets absorbed into the bloodstream and distributed?

It works both on the gut and systemically. I use it to help balance my gut microbiome.

 

[seamyb]

I have tried grapefruit seed extract and maybe one or 2 others up my nose but didn't notice anything.

If you were to ever go down that path again, xlear rescue (not the normal xlear) and various essential oils diffused (tea tree, citrus, thyme) all made me herx. I've never tried just grapeseed extract, but I know that I need biofilm busters to cause the herx.

I feel confident (after 14 years of research) that a leaky gut is the source of the toxins. I've been working on my gut for years but can't seem to heal it.

Well that's annoying. You finally work out the underlying pathology of your little-studied illness and it's a pathology which is little-studied and barely even recognised. It's the same for us all I think. Mold, leaky gut, chronic active viral infection etc.

I do have an anxiety disorder, and stress and anxiety can really mess up the gut.

I was on sertraline for extreme panic attacks ages ago. My anxiety is under control now, but I suspect that quitting the sertraline may have messed my gut up. But with the nasal antifungals causing herxes I believe that some bacteria which detoxifies conjugated toxins has been impacted and this has allowed the circulation of these toxins. There's possibly some permeability issues, but mycotoxins can cause this too. So, I've started thinking about the gut too, but it's not my root cause - but very close to root.

Anyway, anxiety sucks man. Just sitting minding your own business and then a tiger comes in and sits in front of the only exit snarling and eating your loved ones. Except there is no tiger, you're just responding to it anyway. Hope you sort it out. It's one of those things that just went away for me, albeit I was on sertraline (albeit, again, this may be implicated in my illness). Unfortunately I have no advice, but it can go away.

and ate I very high sugar, junk food diet most of my life too.

Aw same. High sugar diet and never put weight on. That glucose just fueled my TCA cycle even if it wasn't needed. I often wondered whether it was a very active brain which just burnt it all.

 

[seamyb]

2nd dose of chlorella last night. I actually feel better today than I have been feeling. Got a good night's sleep, woke up after 9 hours, down from about 11, haven't felt particularly sick. Seems to have been an improvement, but I did notice the day after bentonite I would feel better and then get worse by day 3. So I'll see how this goes.