Multiple binders

[hb8847]

@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.

I'm pretty convinced it's doing something positive yeh. If the bad reactions were purely an inflammatory response to the binder itself you'd get them almost instantly. The fact that they take a few days says to me it's caused by a buildup of toxins in the body, which can only mean the binders are successfully dislodging them.

And I'd also be a lot more concerned had I not been prepared for this from Nathan's book, plus what I've heard from other doctors - Herxes are pretty common for a lot of these types of illnesses and particularly mould.

Plus from personal experience, to date the only treatment that has helped me to any significant degree in my CFS journey was the use of oral Nystatin powder a few years ago. It's an antifungal that, like the binders, is not absorbed by the body, only staying in the gut (and hence similarly very "un-reactive") and I had exactly the same Herx-style reactions to that too.

(To clarify, in terms of my health, over the course of about a year it got me from being practically bed-bound to the point I was able to do a 30min walk everyday, but could only tolerate minute amounts hence why I had to build it up so slowly. I wasn't aware of binders or anything at the time though, and if I could go back I'd absolutely start with the binders.

Eventually I had to stop Nystatin as in spite of getting better my food reactions steadily worsened, probably not helped by all the Herx reactions I was putting myself through by flooding my body with toxins without any viable way of removing them. But yeh, to begin with it gave me exactly the same kind of wipe-out reactions as the binders).

 

[hb8847]

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.

Ha this is very true but I'm pretty confident it's doing some good. Like I just said in my previous comment it reminds me a lot of my experience with Nystatin which ultimately helped considerably. Plus is just makes sense, I see no way these binders could realistically be doing any active harm (so long as you make sure they're not depleting you of minerals). I just think getting the dose right is paramount, plus which binder. It seems you're very sensitive, have you considered one of his other recommendations like S Boulardii or Optifibre Lean for more sensitive patients?

 

[hb8847]

Btw @seamyb if it makes you feel any better I'm gonna have to reduce the Bentonite dose after all - this Herx has gone on now for almost a week and it's still pretty intense, the 1/2 tsb seems like it was way too much lol. But I also have noticed feeling a bit clearer in my head at times (than prior to taking binders), maybe early signs of them starting to work... who knows.

 

[seamyb]

@hb8847 I can tell you now that the kinds of doses we were taking are astronomical.

I put the first bentonite dose I took into a 500ml bottle of water and took 1 ml from that in a glass of water. I still felt effects, albeit much much more manageable. Even still, the fact that dividing the dose by 500 still produces a noticeable effect says it all. And that's with an initial dose of considerably less than half a teaspoon.

Even if bentonite doesn't have an effect on you, I imagine the same applies for charcoal.

 

[hb8847]

I put the first bentonite dose I took into a 500ml bottle of water and took 1 ml from that in a glass of water.

That's insane, how soon after taking it are you getting a reaction? And what symptoms? If it's definitely a Herx then that'd be less than 1/1000 tsp you're reacting to!

 

[seamyb]

That's insane, how soon after taking it are you getting a reaction? And what symptoms? If it's definitely a Herx then that'd be less than 1/1000 tsp you're reacting to!

About 2 hours after I start getting intestinal gurgling and a kind of bloating pain. It's profound and surprising for such a small amount. Then over the next few days I get muscle pain, pain in my throat, pain in my bowel and just feel more tired and sick. But it hasn't been a crash on the low dose. It's just a noticeable change in baseline symptoms.

I'm gonna keep at this every 3 days. Then move the doses closer together slowly.

 

[hb8847]

That's really interesting. And it does sound a lot like a Herx to me, what with the 2 hour delay and all the aching etc. Maybe it just shows that you just really need it?

 

[seamyb]

Maybe it just shows that you just really need it?

Hopefully! It's very difficult to keep doing something which makes you feel worse.

 

[hb8847]

For sure

 

[seamyb]

Did three days of the tiny amounts (1ml from a 500ml bottle with less than a quarter of a teaspoon of clay) back to back. Crashed on the third day. Jesus Christ.

 

[hb8847]

Shit, commiserations. Might be worth trying one of the other binders then?

My Herx from the Bentonite ended up lasting effing ages. I was about 9-10 days in and didn't seem to be getting any better, so I decided to try some liposomal glutathione (as that seems to be recommended for Herxes) - it definitely helped the Herx but seems to have triggered some other issues re my MCAS, I'm reacting worse to foods which isn't great as one of the symptoms is pretty bad depression, so I'm gonna try and minimise having to use glutathione as much as possible.

But it's a backup I guess for when I go overboard with the binders, and it's enabled me to start them up again - I'm now doing so at half the dose and doing 1/4 tsp Bentonite and 1/4 Zeolite on alternate days, just to try and cover my bases. Gonna be interested to see where my tolerance is at in a few weeks, whether it's improved or whatever, but I'm still definitely in that stage of not particularly enjoying life while I'm taking it.

 

[seamyb]

Yea, looking like I'll have to try something else. Might try just the tiny amounts once a week for a while. It's crazy, the single dose which was equivalent to the entire bottle didn't do this to me, but using the tiny amounts on 3 consecutive days did. I'd read somewhere a while ago that binders should be done frequently in small amounts, like 3 times a day, but this is completely counter to my experience. Just gonna throw that idea out for the time being.

RE the glutathione. I can take it fine at the minute. Haven't had any negative effects from it and I've been taking much more than usual. I think it's one of those things that maybe needs to be built up slowly.

 

[hb8847]

It's crazy, the single dose which was equivalent to the entire bottle didn't do this to me, but using the tiny amounts on 3 consecutive days did.

Well that's weird... Maybe go back to doing the entire bottle then, just space it out a bit more, like once every few days? I'm struggling to figure out what the reason could be for your reaction to the minute amounts.

I'd read somewhere a while ago that binders should be done frequently in small amounts, like 3 times a day, but this is completely counter to my experience. Just gonna throw that idea out for the time being.

Oh really? Yeh I'm not sure how you're supposed to fit that in, given you need to leave like 2hrs either side to make sure the stomach is empty. I'm doing mine in the evening & think I'm gonna stick to that for now.

 

[seamyb]

Maybe go back to doing the entire bottle then

Haha nooo. It made me feel like crap too, just not as bad as the tiny doses over three days. I actually feel like I'm coming out of this one faster than I did the single larger dose. I'm going smaller again and spacing them out over a good few days. Any reaction at all will be a sign to decrease again or space them further. I worry about changing to "milder" binders, because I know this one is doing something. So just gonna try and make this one milder.

I'm struggling to figure out what the reason could be for your reaction to the minute amounts

Yea, same. There is some complex dynamic going on whereby it's a case of repeating the action amplifies the effect. Plus the herx peaks after about 3 days which makes me think that the clay doesn't clear after 24 hours and only starts doing its optimal work after about 3 days.

Anyway, a good long break is needed from it. I need a few good days again.

 

[hb8847]

Any update, how are you getting on? Early days for me but I have a slight feeling mine might be helping. Physically I don't seem to have had any improvement but I have noticed I'm maybe feeling a bit clearer in my head... it could just be the usual fluctuations or whatever but I'm not complaining.

Still doing the same plan with the binders, 1/4 tsp Bentonite or Zeolite on alternating days, and after about 7 days of that I begin to get some signs of a Herx so I have to stop for a few days, although I've also noticed that supplementing with certain antioxidants such as PQQ or CoQ10 seems to help.

 

[seamyb]

Any update, how are you getting on? Early days for me but I have a slight feeling mine might be helping. Physically I don't seem to have had any improvement but I have noticed I'm maybe feeling a bit clearer in my head... it could just be the usual fluctuations or whatever but I'm not complaining.

Still doing the same plan with the binders, 1/4 tsp Bentonite or Zeolite on alternating days, and after about 7 days of that I begin to get some signs of a Herx so I have to stop for a few days, although I've also noticed that supplementing with certain antioxidants such as PQQ or CoQ10 seems to help.

Oh this sounds promising, hopefully it's not a fluctuation!

I'm still on a break from it as I haven't been doing great. Haven't been terrible but just feeling below my best baseline so I haven't tried anything again yet. I actually just ordered some chlorella and S.Boullardii off Amazon. May as well try a few different ones and see what the effect is.

I've been very tempted to try thyme oil again, because I had a period of doing great when I was on it. Apparently thyme oil contains a compound which prevents fungi from releasing mycotoxins and it was this I attributed to the effect. I'm in two minds though because the consensus seems to be binders first.

Either way I'm still not feeling like I've recovered fully from my last worsening and definitely don't want to risk going in the wrong direction from here. It'd be more difficult to determine a negative effect from something anyway.

 

[seamyb]

I'm starting chlorella tonight @hb8847. May as well try different ones and see if any are better tolerated. I'll work in S.Boullardi if well tolerated. These two would be good to combine because the latter is taken with food and so I don't need to mess about with eating times.

You mentioned that S.Boullardii was a milder binder... where did you hear this? I had a look in the toxic book and couldn't find where it said this. Hopefully it's true of both chlorella and Boullardii because I feel I need to get binders working.

How are you doing anyway?

 

[hb8847]

I'm starting chlorella tonight @hb8847. May as well try different ones and see if any are better tolerated. I'll work in S.Boullardi if well tolerated. These two would be good to combine because the latter is taken with food and so I don't need to mess about with eating times.

...

How are you doing anyway?

Oh good stuff! Do let me know how you get on.

I'm doing OK, in the middle of yet another Herx. Mentally I seem to flit between being cautiously positive about it all and then doubting everything I'm doing and questioning whether they're helping. I'm keen to give the binders a proper shake though and I also can't see much reason why they wouldn't be helping, but if I get do mid December and I've really not started to see some concrete improvement once I'm out of a Herx I think I'm going to have to reach out to some specialist mould doctors. I also worry my living space might have mould in it but I'm too terrified to get that checked for now.

You mentioned that S.Boullardii was a milder binder... where did you hear this? I had a look in the toxic book and couldn't find where it said this. Hopefully it's true of both chlorella and Boullardii because I feel I need to get binders working.

This is the passage from Nathan's book, page 76, although it may only be on my version? I'd be interested if he'd removed it from subsequent editions if there are any:

The next section goes into more detail about treatment, and you will see how the knowledge of which mycotoxins are present informs us how to proceed with treatment. Unless we can maximize the information available to us and treat all of the mycotoxins that are present, treatment may not work.

For reasons I will discuss shortly, I start with the gentlest binder, so I begin most patients with one Saccharomyces boulardii capsule, 8 to 10 billion units, with one meal per day. For more sensitive patients, I start with a lower dose of 3 to 5 billion units per capsule and try one-quarter capsule at first, then slowly increase the dosage if it is well tolerated. After a few days, if no negative reaction has occurred, the dosage can slowly be increased to one capsule with each of two meals a day, and finally to one capsule with each meal. Most of my sensitive patients can take Saccharomyces without difficulty, but as noted previously, we proceed with caution.

Next, I add bentonite clay. Most patients start with one capsule containing about 500 milligrams. Here is where we might start noticing problems in sensitive patients. Many of my patients react strongly to even a single capsule of clay with an intense exacerbation of their usual symptoms: an increase in fatigue, anxiety, cognitive impairment, joint pain, and so on. If this happens, I instruct them to stop taking the clay immediately, wait until the exacerbation has completely resolved, and then try again, taking either a half or a whole capsule every second or third day. If the patient can handle this dosage, fine. If not, we look for a liquid preparation...

Although elsewhere in the book Nathan suggests first adding the binder which is most suited to the specific toxin on your mycotoxin profile, which is a bit confusing.

One thing to note about Chlorella is he mentions to make sure it's glass-grown Chlorella as the natural stuff can contain high amounts of arsenic.

 

[seamyb]

I'm doing OK, in the middle of yet another Herx.

Ah shite one. Do you need to cut your dose? Any worsening is bad remember!

One thing to note about Chlorella is he mentions to make sure it's glass-grown Chlorella as the natural stuff can contain high amounts of arsenic.

Yea I've tried looking for glass grown but all the ones I've found are fresh water or similar. It shouldn't be too much of an issue as I start really low. Might try and source a lab grown if I'm getting to substantial doses.

The reason I'm going with chlorella is that it seems to be good for both aflotoxin and tricothycenes (spelling?), and these are the common denominator in charcoal and bentonite, both of which I herxed on.

I still feel pretty bad from my last herx on bentonite which was a couple of weeks ago. Even glutathione doesn't seem to help... might even make me feel a bit bad now - very strange.

Found an interesting review paper you should take a look at. Unfortunately, like a lot of stuff in the literature it doesn't talk about herx, negative reactions or sensitivity. But it's still a good paper and source of references

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654247/

 

[hb8847]

Ah shite one. Do you need to cut your dose? Any worsening is bad remember!

Probably I should yes, although partly it's due to the effect of the Herx being so delayed - the last one I got happened about 10 days after starting on the bentonite. But yes, I should probably just reduce the dose and it's mainly due to me being impatient.

I still feel pretty bad from my last herx on bentonite which was a couple of weeks ago. Even glutathione doesn't seem to help... might even make me feel a bit bad now - very strange.

Yeh glutathione is very mixed for me, some things it helps with, others it doesn't. Interesting your experience is similar, maybe it's evidence we've got similar things wrong with our bodies. I wonder if it might have been a factor for you in the bad response to Bentonite? I know if I go too hard with the Glutathione or other antioxidants I start to feel really awful...

Found an interesting review paper you should take a look at. Unfortunately, like a lot of stuff in the literature it doesn't talk about herx, negative reactions or sensitivity. But it's still a good paper and source of references

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654247/

Thanks for this, had a quick scan and looks very interesting. I just wish they gave a more definitive conclusion on which things are most helpful. 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!

Do keep me posted by the way on how you're getting on or what changes your making. 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!