Multiple binders

[seamyb]

Decided to keep a track of symptoms and what I'm taking. Tried too many times with pen and paper and lost interest, usually around the time when a record would have been very useful. So starting yesterday, I'm keeping a record in a spreadsheet (a very non-fancy spreadsheet in the terminal, see attachment). My memory isn't a fraction as good as I think it is.

 

[GlassCannonLife]

@hb8847 @seamyb are you guys doing urine tests for mycotoxins? Not sure if you saw but Chris Masterjohn released a clip recently about mould testing and he had a period of time where he lived in a super contaminated building.

However, when they tested the mould in the area (that distinctly gave him clear symptoms within a short time of being in the area), the strains that were found did not match at all with his urinary mycotoxin test results. He concluded that urinary mycotoxin testing was not very reliable as it could be influenced by mould contamination in foods etc.

Do you have any thoughts on this?

Also @seamyb if you are having air hunger after glutathione (that is what you said, correct? Sorry I'm doing poorly and can't remember exactly), it could be a molybdenum deficiency IIRC, causing sulfate sensitivity. CMJ also discussed this sometime recently (maybe re: oral glutathione vs liposomal video or something, I forgot this also lol sorry).

 

[hb8847]

@hb8847 @seamyb are you guys doing urine tests for mycotoxins? Not sure if you saw but Chris Masterjohn released a clip recently about mould testing and he had a period of time where he lived in a super contaminated building.

I've done one yes, earlier this year with Biolab in the UK.

However, when they tested the mould in the area (that distinctly gave him clear symptoms within a short time of being in the area), the strains that were found did not match at all with his urinary mycotoxin test results. He concluded that urinary mycotoxin testing was not very reliable as it could be influenced by mould contamination in foods etc.

My understanding was that the amounts of mycotoxins passed on by food are minimal and very unlikely to show up on a urine test.

Another thing about mould - just because a mould environment is giving you symptoms, it doesn't necessarily mean that that mould is what's in your body. You could already have already had a dormant mould infection in the gut or sinus, and then the mouldy environment could then trigger symptoms without necessarily replacing whatever mould is in your body. To be honest it sounds like a bit of a leap by this guy to deduce that simply because the mould species didn't exactly correlate with the mycotoxins found in his urine meant that they had to be coming in via his food.

As for the urine test, it's been advocated by a few of my doctors and by others who are well regarded over here in the UK. And Dr Nathan seems to advocate for them in his book; he claims to have cured hundreds of patients of mould toxicity and says the improvement in their well-being correlates fairly well with a reduction of mycotoxins in their urine. Frankly that's good enough for me. If after binders, anti-fungals and biofilm busters my mycotoxin levels are still high then maybe at that point I'll reassess but for now I see no reason to question it.

 

[GlassCannonLife]

I've done one yes, earlier this year with Biolab in the UK.



My understanding was that the amounts of mycotoxins passed on by food are minimal and very unlikely to show up on a urine test.

Another thing about mould - just because a mould environment is giving you symptoms, it doesn't necessarily mean that that mould is what's in your body. You could already have already had a dormant mould infection in the gut or sinus, and then the mouldy environment could then trigger symptoms without necessarily replacing whatever mould is in your body. To be honest it sounds like a bit of a leap by this guy to deduce that simply because the mould species didn't exactly correlate with the mycotoxins found in his urine meant that they had to be coming in via his food.

As for the urine test, it's been advocated by a few of my doctors and by others who are well regarded over here in the UK. And Dr Nathan seems to advocate for them in his book; he claims to have cured hundreds of patients of mould toxicity and says the improvement in their well-being correlates fairly well with a reduction of mycotoxins in their urine. Frankly that's good enough for me. If after binders, anti-fungals and biofilm busters my mycotoxin levels are still high then maybe at that point I'll reassess but for now I see no reason to question it.

Sounds good, thanks. I'll start reading that book soon

 

[seamyb]

are you guys doing urine tests for mycotoxins?

I haven't done, but it's something I probably should have. I'm just lazy suffering chronic fatigue.

Do you have any thoughts on this?

Yea, I second what hb says. Like any time I've lived in a moldy environment I've generally not suffered these types of symptoms. I had a room in university with black mold and had constant chest infections, but no multi-systemic debilitating symptoms. It's only now I'm living somewhere I believe to be free of mold (or at least can't possibly be anywhere near as moldy as the obviously moldy places in the past) that I'm sick this way. I believe it has to grow inside you. Possibly it changes as it grows. Possibly it interacts with viruses, bacteria, other fungi to become so toxic. So much is unknown that a lot of this is just guesswork. Which is why all I can really do is to gauge the integrity of a theory by my response to certain things. And I have to say, the n=1 evidence is mounting.

Also @seamyb if you are having air hunger after glutathione (that is what you said, correct? Sorry I'm doing poorly and can't remember exactly), it could be a molybdenum deficiency IIRC, causing sulfate sensitivity. CMJ also discussed this sometime recently

Thanks for sharing a theory! I'm definitely short of these. However, I was taking molybdenum for a good while and it didn't help the air hunger. It's also not just glutathione which causes it - B12, B1, iodine vapour inhalation, certain nasal sprays. I never get it the day after taking binders, though. This could be coincidence so far, but it's looking more true as time goes on. I think it's some kind of effect from the toxic stuff. Don't think I'll ever figure it out, but just have to hope it goes away eventually.

 

[seamyb]

@hb8847 so, 2nd dose of bentonite last night (once every 2 days) and I feel both worse and better at the same time. It's weird. I've the pain in my throat, my muscles are threatening to hurt me if I move too much and I do feel a bit sick. But it all feels different. It's like yea you've moved these toxic compounds about so have a bit of this herx, but also you've done a bit of good overall, so it'll not be as bad... maybe this is just because I've gone very lightly with the clay. Who knows. But the clay definitely isn't going through with no effect.

 

[hb8847]

Yeh I know what you mean. Sometimes I can take these binders and feel worse but also weirdly quite good in places. Maybe it's the body trying to tell you you're doing something right, or maybe it's just all in our head. This whole experience is pretty weird. The fact I'm getting any sort of Herx though I'm taking as a positive - it's helping my body get rid of some sort of toxin, which surely can only be a good thing. Just have to get the dose right.

As for the Bentonite, yep I've done a few capsules of this too, I seem to tolerate it a bit better than the Charcoal so I think I'm gonna stick to that too for a while and then gradually work my way up, eventually adding the Charcoal (my Mycotoxin result showed very high Ochratoxin so keen to add Charcoal at some point).

 

[hb8847]

How are you tolerating the Bentonite, & how much are you taking? I seem to be handling it a lot better than the Charcoal. Still early days but I've been able to take 1/2tsp daily so far without much bother (although I'm waiting for the inevitable Herx) whereas just a capsule or two of Charcoal would finish me off... I wonder whether that's because it's better at binding toxins (and so displaces less back into the bloodstream) or if it's just binding the wrong toxins which aren't causing my symptoms. I think I'll stick with it for a while regardless.

 

[seamyb]

How are you tolerating the Bentonite, & how much are you taking? I seem to be handling it a lot better than the Charcoal. Still early days but I've been able to take 1/2tsp daily so far without much bother (although I'm waiting for the inevitable Herx) whereas just a capsule or two of Charcoal would finish me off... I wonder whether that's because it's better at binding toxins (and so displaces less back into the bloodstream) or if it's just binding the wrong toxins which aren't causing my symptoms. I think I'll stick with it for a while regardless.

Bentonite has messed me up. I feel terrible. Only took what I thought were small amounts, a lot less than half a teaspoon, and I've been very sick, had bad muscle pain and pain in my throat and neck - I think this is glands/lymph node pain.

Took 3 days after after my last dose to kick in. I only stopped for so long because I had a meeting on Friday and didn't want to be sick for it. I'm wondering if stopping it is what makes it worse? My worst symptoms have occurred after stopping, but I'd hate to test that theory by continuing with a dose and multiplying the herx by 10. Just gonna have to recover from this and then try very tiny amounts.

 

[hb8847]

Interesting, & sorry to hear. I wonder if Bentonite is mobilising different toxins in each of us? It makes sense that I'd be very sensitive to Charcoal given it binds to Ocratoxins which I'm high in, maybe you're very high in some of the other stuff Bentonite binds better to, like Alfatoxins or potentially non-mould toxins. That said I've also only been taking Bentonite for a few days so perhaps it'll end up giving me a massive Herx too such fun this

I'm wondering if stopping it is what makes it worse?

Doesn't seem to be the case with me, I've only ever stopped binders once already Herxing. But the Herx has worsened sometimes even when not taking it, which makes me think it definitely takes time for the binders to work their way through the system and displace more toxins.

 

[seamyb]

which makes me think it definitely takes time for the binders to work their way through the system and displace more toxins.

Seems to be the case. Think I'm starting to come out of my herx now, but Jesus Harry Christ that was a bad one. When I've had a few days of being able to keep the despair at bay I'll try a tiny crumb every 3 or 4 days. Struggling to see how this can make me feel better within my conceptual model, but just have to have a bit of trust. If I herx after literal crumbs then I don't know where to go from there.

 

[hb8847]

Maybe you could consider trying some of the binders he recommends for highly sensitive patients, like S Boulardii or Optifibre Lean? Another one not mentioned but I've come across quite a lot is Zeolite (or Clinoptilolite) which is similar to the Bentonite Clay but may be more useful for certain types of mycotoxins. I'm thinking of taking some of that on top of the Bentonite as I'm concerned the latter isn't really doing anything. It's weird - the Herx I got from Charcoal was awful but it was sort of encouraging that it was at least getting rid of something. Now I'm getting nothing from Bentonite I'm concerned it's not doing enough! Need to try and find a sweet spot for this stuff I think.

 

[hb8847]

Progress update -

So I've been taking about 1/2tsp Bentonite daily for about a week without much bother, then I added one Zeolite capsule to that yesterday and it seemed to tip me over the edge, I'm currently having another Herx and have stopped everything.

My Herx reactions generally consist of a worsening of body aches and fatigue, but I've also noticed the depression worsening a bit which hasn't been pleasant (although perhaps it's unsurprising given mycotoxins trigger inflammation and cytokine release). Interested to hear whether anyone else has experienced this?

Regarding my general health, I've not noticed any improvement since starting the binders. I guess I'm just sort of hoping they will be doing some good, hopefully I'll get an indication they are doing so before too long.

 

[hb8847]

On a separate note has anyone here done binders before, and if so what was your experience on them? I have to say I'm surprised there isn't more discussion of this and of mould illness in general on this forum given the prevalence of mould issues amongst ME/CFS sufferers (e.g. Brewer's study showing >90% of a random sample of ME/CFS sufferers tested positive for mould, original PR thread discussing the study here).

It also seems to me like binders make sense as good starting point for remedying ME/CFS irrespective of whether mould was the underlying issue, because they're well tolerated and they get the detox pathway moving properly. Even if the CFS isn't being caused by mould specifically it's likely it's being worsened by some sort of toxin overload, be that bacterial or otherwise. If you have gut dysbiosis for example, binders should help soak up the endotoxins released by bad bacteria, and allow other treatments such as antibiotics or probiotics to be better tolerated?

 

[seamyb]

Nasty, @hb8847. I think the herx means you took too much. I'm gonna start bentonite again soon, but I'm putting my last dose into a bottle of water and taking a dropper-full from that and putting it into a glass of water - so very small amounts. Gonna wait 3 days after that to see how I react and then maybe continue it for a while before increasing. Any increase in dose gets 3 days to see how I react. Had you recovered from the charcoal before trying the zeolite?

Do you know which toxins zeolite is meant to target? I would have thought it would be very similar to bentonite but maybe it's better for ochratoxin.

Regarding the lack of people trying this, we're not exactly advertising it very well . Come herx with us! I feel if we pave the way and end up much improved we can begin spreading the word. But yea, the lack of any success stories with this is a dampener. You'd imagine at least some of Nathan et al.'s patients would have been on PR before becoming much improved by him. But anyway, there's enough consistency with my symptoms and responses and the biotoxin/mold sinus infection theory to continue.

 

[GlassCannonLife]

@seamyb @hb8847 so you guys are pretty confident you're successfully clearing toxins with this then? I just ordered some charcoal and bentonite a few days ago.. May join you but only once I'm stable enough to handle a reaction.

It would be interesting to see periodic VCS test results or urine mycotoxin test results while you do it to see if anything seems to be improving vs it just causing some type of inflammatory reaction or whatever it could be if it isn't a herx.

 

[seamyb]

so you guys are pretty confident you're successfully clearing toxins with this then?

Well so far I've taken too large a dose and have put too many toxins back into my system. It's bound to have cleared a lot out, but I need to do it slower because at the minute too much is going back in. It dislodges them from the intestines, some bind and fall off which makes them volatile again. So the theory goes. Just need to go very very slowly.

May join you but only once I'm stable enough to handle a reaction.

It's worth mentioning that neither myself nor hb can report any improvement but can report a lot of worsening and herx. I have some positives to say regarding improved constipation and I think it is good for my air hunger, but in terms of overall sickness it's been horrible. We'd be glad of more data and insights, but it's not something I can at all advise at the minute - maybe in a month or two I will be able to, but at the minute I'm experimenting and the results have been awful.

Having said this, there are doctors and scientists who have predicted these reactions and they still recommend them. Predicting a reaction to something is the absolute best that any doctor has been able to do for me. So I am sticking with it. I'm on a break from my last herx with bentonite. I'll be starting back again soon with almost homeopathic (what have I become) doses. So, if you're adamant you want to try this approach, don't let my negative reports put you off, because they haven't put me off.... yet. If you're anxious, maybe just watch hb and myself and see if we see improvements or turn into goblins. I have to balance this with the fact(?) that the toxins originate in my sinuses, so I'm not expecting positive results in the immediate future.

 

[seamyb]

It would be interesting to see periodic VCS test results or urine mycotoxin test results while you do it to see if anything seems to be improving vs it just causing some type of inflammatory reaction or whatever it could be if it isn't a herx.

Also, in regards to this, it should actually be expected that mycotoxin levels rise in urine initially. This has been observed and the theory I have in my head is that, as you start to clear stuff out of the intestines, you're able to clear more out of your system and that means dumping more into the blood from the cells. This may be crap, but apparently it is observed that levels rise initially.

 

[GlassCannonLife]

Also, in regards to this, it should actually be expected that mycotoxin levels rise in urine initially. This has been observed and the theory I have in my head is that, as you start to clear stuff out of the intestines, you're able to clear more out of your system and that means dumping more into the blood from the cells. This may be crap, but apparently it is observed that levels rise initially.

Yeah makes sense - but surely after a month or however long they should have fallen a bit.? Or is it even slower than that.

I'm going to try thymosin alpha 1 when I stabilise in the next weeks and then valtrex (if it clears customs) so I'd only join in a few months if neither of those help. Should be enough time to see how you guys are getting on hopefully! I just bought them now because iherb had a 15 % off sale.

 

[hb8847]

Had you recovered from the charcoal before trying the zeolite?

Pretty much yeh. I've not gone back to Charcoal since all that though, the Herx was just way too intense (and a lot more than the ones I'm getting from Zeolite or Bentonite).

Do you know which toxins zeolite is meant to target? I would have thought it would be very similar to bentonite but maybe it's better for ochratoxin.

Yeh so this is the reason I added it - I was taking Bentonite fine without too much bother but it was concerning me a bit that it supposedly doesn't bind to Ochratoxin, the mycotoxin I'm highest in. Zeolite is a similar compound to Bentonite, and I'd read some stuff about it being good for Ochratoxon (such as this) so decided to add it in.

So far it seems to be going fine, I'm a bit more sensitive to it than Bentonite but it's way more tolerable than Charcoal so I reckon this combination might be my go-to for now.

Regarding the lack of people trying this, we're not exactly advertising it very well . Come herx with us! I feel if we pave the way and end up much improved we can begin spreading the word.

Haha yeh, I just meant in general. We know mould seems to be very common amongst CFS sufferers, Nathan is an expert in this field with a well regarded and widely cited book on the topic, where he advocates the use of binders and claims to have cured many people with them...

I'm just surprised it's not more of a thing here, both mould and the use of binders, being discussed or whatever. You've got legions of people trying crazy shit to get better from all this, all different sorts of supplements or whatever. Binders which help with the toxic pathway just seems a pretty logical and safe first step... I dunno.