Multiple binders

[hapl808]

What kind of chlorella did you take, and did you ever try other similar binders like algae or spirulina?

 

[seamyb]

What kind of chlorella did you take, and did you ever try other similar binders like algae or spirulina?

I'm not sure what you mean by which kind... but it's cracked cell, fresh water chlorella pressed into tablets. If I start to increase my minuscule dose I might look into lab-grown out of concerns for heavy metals.

I've not tried any of those other algae or spinulina... My bible - Toxic by Neil Nathan - doesn't mention them. But I am interested in binders beyond those mentioned in the bible, should you have anything interesting to say about them. I've been thinking about how certain fibers like psyllium husk might be of benefit, but binders have had the counter-intuitive effect of making my BMs more frequent and regular. So, not gonna try and fix what isn't broken.

 

[GlassCannonLife]

I've never really paid much attention to the scales. I've never found them to characterise my changes in severity very well. I can maybe have a look at one if you can link me to it?

I've been housebound now for about 3 months - literally have not left the house in this time. Perhaps on occasion I've been well enough to, but I sort of suit the housebound life anyway.

At my worst over this time I have had to lie down in a dark room for considerable time throughout the day. Not exactly bed bound but my head has been so plagued with an inability to engage with stimuli that I've had to lie down for several hours. This has been after a herx or detox reaction from nasal antifungal treatments or binders.

The baseline over this period has been a day where I get several waves of feeling overwhelmingly ill. It peaks for half an hour to an hour but usually ebbs and flows, so I get a good few hours where I'm able to get stuff done. The severity of these waves can increase without changing the number of hours I have not feeling as bad. This is mainly why I don't like the scales. Plus, PEM isn't something I've experienced in quite a while - I seem to be living within my exertion envelope. So nothing I do worsens my condition, outside of trying to treat it. I have never rested and felt any better.

The severity of these waves are the lowest they have been in a long, long time and it comes immediately after a worsening caused by the chlorella. It usually takes a lot longer to get back to nowhere near as good as this whe I've had a detox reaction from binders. I accredit this to going slow and steady with gaps.

I need more time to be sure I have actually gained improvement, but the signs are very good. I'll fight the temptation that because some has been good, more must be better.

Sure, this is one of the most commonly used ones: link

 

[seamyb]

Sure, this is one of the most commonly used ones: link

Yea, sorry I can't really mold this framework around my experience very well.

If I had to try, I'd say my worst case is somewhere between 20 and 30 - when I'm herxing/detoxing bad. I'm not confined to bed but I'm unable to work my desk job from home. If I had to push I could do an hour but wouldn't have the concentration to do more. Severely reduced activity, but I don't exercise and walking to the kitchen several times doesn't make me worse. Exercise used to floor me for weeks so I quit. I get PEM from this level of exertion but not from normal activity.

When I quit binders for a few weeks the severity of this dropped. But my need to sleep got longer, 12 hours I'd need at times. Maybe a 40 on this scale? But without the activity-related criteria and I still never left the house - it's the mental fatigue and feeling too ill to which keeps me inside.

On two occasions months ago, I was at 100. This was after inhaling iodine vapour and again after inhaling thyme essential oil diffused in water vapour. I deteriorated again after the iodine despite continuing it. I have theories as to what was going on, but no real certainty. I stopped the thyme oil because I was getting a pain in my throat - which I now believe to be sensitive lymph glands and maybe not something as alarming as I thought. Either way, I continued with nasal treatments and deteriorated again with herxes. I'd be at a constant 40 with my exceptions.

When I was at 100, I wasn't symptom free. I had muscle pain and other symptoms which told me I was not cured. So continuing to herx seemed to make sense. But my baseline over the last few months has been about 40. Before I started all this months ago I'd probably have been around the same - yet strangely not as severe in how ill I felt (this is why I don't like these scales).

Now I'd maybe be sitting at 70. I've been hitting around this mark the past 3 days and one or two other days (the day after chlorella doses). I had one day I was thinking I'm gonna have to lie down (but just fell short in severity) and another couple where I was moderate, but there have been a number of days where I've been experiencing the kind of improvement I haven't seen since I started taking binders. My muscle fatigue and pain seem to be minimal as well.

I should invent my own scale...

 

[seamyb]

I should also note that binders have thus far eradicated my terrible air hunger. I used to react to a tiny spot of glutathione by feeling like I was breathing on the moon. I have not had this problem since beginning the binders. Incidentally, I have seen that it is not recommended to take glutathione before you have the binders in place. So makes sense.

 

[hapl808]

Sure, this is one of the most commonly used ones: link

I'm around 15 on that scale, plus or minus 5 points depending on supplements, activity, etc.

 

[seamyb]

I'm around 15 on that scale, plus or minus 5 points depending on supplements, activity, etc.

I've just looked again at that scale. The marked cognitive symptoms preventing concentration of 10 are what I experience alongside what I deemed 20-30. I'm bedbound for hours, but not the majority of the time. Can't stand up when I'm like that, everything gets worse.

Are you on this thread because you're thinking mold/biotoxin illness?

 

[hapl808]

Are you on this thread because you're thinking mold/biotoxin illness?

Yes. I've had a lot of symptoms that could be explained by the Shoemaker theories, but I haven't found the treatments did much positive for me. Maybe slight improvements, but also weird responses. I was on CSM for several weeks with pretty close to zero reaction, then suddenly got a bad allergic reaction to it. It's tough with binders because the proponents sometimes attribute any good reaction to the binder, any non-reaction to not trying it enough, and any bad reaction to herx-ing. By that math, anything is great.

Overall have tried CSM, chlorella, charcoal, spirulina, algae, chlorophyll, bentonite clay, psyllium seed, etc.

 

[seamyb]

It's tough with binders because the proponents sometimes attribute any good reaction to the binder, any non-reaction to not trying it enough, and any bad reaction to herx-ing. By that math, anything is great.

Ha, yea. And the symptoms of biotoxin illness are every symptom it is possible to have... although given most of us are close to having every symptom possible, this doesn't seem too far-fetched.

All I know with binders is that the only possible reason that charcoal and bentonite could both exacerbate my illness is through binding the toxins causing my illness. And the only reason a range of chemically unrelated antifungal nasal substances could do the same is because they're upsetting the source of those toxins.

Given that I'm seeing clear validation of many of the theories, I'm becoming a proponent of them. I'm a hammer and everyone's a nail. If you're severe, and what I suggested on the other thread is true - that its the body's ability to recover which differs - you may not notice the worsening that we have. The worsening puts me in a state like your's for a short time. If we both share a pathology, then you're already in that state.

I've been on and off binders for more months now and it's only when I dropped the dose and frequency way down that I'm (maybe) seeing improvements. It's not intuitive at all.

 

[GlassCannonLife]

Thank you both @hapl808 @seamyb, I find it much easier to relate when I can get some sense of function using the scales. You're right they're not perfect but they do work to broadly illustrate how we are.

I'm currently around a 20-22 depending on the day, still working out of my crash. Best would have been 28 a few months ago before I overexterted and then got vaccinated right after the flare up..

 

[hb8847]

Weirdly something seems to have changed for me with the way I'm reacting to glutathione. Previously it would clear my Herx (particularly the muscle aching which was probably my main Herx symptom and really full on), but it would also come with downsides like worse brain fog over the following days. But during my last Herx it didn't seem to be working - my aching persisted, almost seemed to worsen at times, and the brain fog never came, so I assumed my tolerance had just gone up, or the glutathione hadn't cleared all the cytokines or whatever, and just kept taking it, increasing the dose.

Well my Herx went on for over 2 weeks with no improvement, so I decided to stop the glutathione, and immediately the aching has started to subside. So it seems the glutathione was prolonging the Herx. Basically I have no idea what is going on, nor why my response to glutathione has changed when all I've done since has been taking the binders (Zeolite & Bentonite). I really hate with this illness how there's sometimes no logical progression to things, how certain treatments can cause a different response at different times, it makes trying to experiment almost impossible.

Anyway now I'm off the glutathione and hopefully finally on my way out of this Herx, but still not really there. I've been really hoping that once it's done I will have improved slightly as that is what happened back when I was taking antifungals and what inspired me to keep going through the Herxes. I'm starting to feel a bit despondent about this one though, I have a feeling I'm not getting any better. Right now it's just blind faith in the Dr Nathan book keeping me going & lack of a better alternative I guess.

 

[hb8847]

Incidentally, I have seen that it is not recommended to take glutathione before you have the binders in place. So makes sense.

This is interesting, where did you read it, do you know the reasoning behind it? Definitely chimes with my experience.

It's tough with binders because the proponents sometimes attribute any good reaction to the binder, any non-reaction to not trying it enough, and any bad reaction to herx-ing. By that math, anything is great.

Ain't that the truth. Although I do see a difference in what sort of reaction you get being significant - an immediate reaction would suggest to me an allergic reaction, or immune response to the binder specifically, which because they are non-absorbed is supposedly pretty rare. A delayed reaction, and particularly one which is an exacerbation of pre-existing symptoms, would suggest to me a Herx caused by displaced toxins. Nothing else makes sense to me rationally.

All I know with binders is that the only possible reason that charcoal and bentonite could both exacerbate my illness is through binding the toxins causing my illness. And the only reason a range of chemically unrelated antifungal nasal substances could do the same is because they're upsetting the source of those toxins.

Yeh this is where I'm at. It's interesting you're tolerating the Chlorella so much better and it seems to be helping. I'm wondering whether I might have more luck switching up the binders...

How is it going now, are you still noticing improvements?

Thank you both @hapl808 @seamyb, I find it much easier to relate when I can get some sense of function using the scales. You're right they're not perfect but they do work to broadly illustrate how we are.

For the record I'm at about a 20.

 

[seamyb]

How is it going now, are you still noticing improvements?

Yes I am. Although I think I herxed from gargling salt water last night. I suspect I have this in my throat and mouth as well. I made another post about my glass always getting cloudy when I drink. So I wanted to see if it went away from gargling salt water. Last night I felt very ill for a couple of hours out of nowhere. But I seem to be ok today, back to better than I was before the chlorella.

My partner has a cold at the minute and I have a mild version. I suspect my overactive immune system is kicking the shit out of it. But I do seem to have a bit more phlegm and a tickly throat etc, so I may be even better than I'm currently feeling. This might explain why I felt ill last night, rather than the salt water, but I still reckon it was the latter.

I'm due another dose of chlorella tonight. One thing I did notice from the chlorella was heart palpitations. I think these have gone away now but I'll want to make sure before I increase the dose or frequency. But overall I am still a good bit better. Not cured by any means, but a nice noticeable boost in the right direction.

 

[seamyb]

Hmmm maybe it wasn't the salt water at all. I've been doing well all day and then I took some glutathione and felt overwhelmed with illness for about an hour.

Maybe it's the glutathione. It's so hard when you need to repeat something several times to verify it. Especially when that thing induces horrendous illness.

Glutathione is weird. There's a complicated dynamic going on. When the body's in certain states it makes you feel better. When it's in others, it makes you feel worse. Still can't be sure what has been causing these short bursts of illness, but glutathione has been the common thing.

 

[hb8847]

Glutathione is weird. There's a complicated dynamic going on. When the body's in certain states it makes you feel better. When it's in others, it makes you feel worse. Still can't be sure what has been causing these short bursts of illness, but glutathione has been the common thing.

Yes I certainly feel this with glutathione. I remember the first time I tried it a few years ago it made me feel amazing, like I felt almost normal for the first time in years, brain fog suddenly gone, felt like I could run a mile, it was crazy. That lasted about 3 hours then I crashed awfully for days. Since then it sometimes helps a bit, sometimes it makes things worse, it's definitely a very powerful supplement and I wouldn't be surprised if it's doing a lot of things in the body concurrently.

 

[seamyb]

I increased my dose of chlorella from 10mg to 20mg three nights ago. I'm very tired. I had a bit of trouble sleeping on the 2nd night and I've had a few heart palpitations again. My worst symptom - the poisoned, ill feeling has been kept at quite a low level. I don't seem to be having waves of being overwhelmed by it. But everything feels a bit more constant. The fatigue seems to be more persistent as does the low-grade poisoned feeling. So I'd say the severity of my illness is significantly better still, but it seems to no longer be coming in waves and is more steady. I'm more tired than I have been, but I can deal with tired. Overall good, but room for more.

I'll keep at 20mg for a while I think. Then I might add some S. Boullardii in a similar way. Then I think I'll try and work both to every 2 days instead of every 3. I'll give this some time and then move to every day. Then I'll see about increasing both further. Then back to sticking things up my nose.

Currently reading over that megathread on the Brewer protocol from 2014 or something. There are so many people who were very active on it who are no longer around. Possibly a good sign, although there are a lack of posts from any of them saying they're completely cured. There are people claiming good improvements, so maybe the remaining improvements happened so gradually that they had just lost interest in PR in the meantime. I'd love to be able to get in touch with them.

 

[hb8847]

So do you think these symptoms are as a result of the Chlorella, do you think it's helping but you're doing a bit too much?

Currently reading over that megathread on the Brewer protocol from 2014 or something. There are so many people who were very active on it who are no longer around. Possibly a good sign, although there are a lack of posts from any of them saying they're completely cured. There are people claiming good improvements, so maybe the remaining improvements happened so gradually that they had just lost interest in PR in the meantime. I'd love to be able to get in touch with them.

Yes I did the same thing a few months ago and noticed exactly the same thing lol. I do wonder though whether it's just people dropping off the forum, I did a hunt through a bunch of older threads a while ago and most of the names I didn't recognise. I think it's just a thing that happens. It'd be nice to think they'd all been magically cured but I suspect they'd be shouting it from the rooftops if that were the case.

Equally though I'm surprised by how little mention of mould in general there is on the site - we have all these studies by people like Brewer, books by Nathan where he says in 80% of his CFS patients the problem was mould, but the mould area of the site is one of the least active. And within that, almost no mention of the method of first using binders to sort out the body's detoxing ability (I wonder how many considered mould but were put off by awful reactions to antifungals).

 

[hb8847]

As for me I'm still recovering from my glutathione & Zeolite escapades. Very interested to see where I'm at at the end of it, can't deny I'll be a bit demoralised it there hasn't been even a slight improvement.

 

[seamyb]

So do you think these symptoms are as a result of the Chlorella, do you think it's helping but you're doing a bit too much?



Yes I did the same thing a few months ago and noticed exactly the same thing lol. I do wonder though whether it's just people dropping off the forum, I did a hunt through a bunch of older threads a while ago and most of the names I didn't recognise. I think it's just a thing that happens. It'd be nice to think they'd all been magically cured but I suspect they'd be shouting it from the rooftops if that were the case.

Equally though I'm surprised by how little mention of mould in general there is on the site - we have all these studies by people like Brewer, books by Nathan where he says in 80% of his CFS patients the problem was mould, but the mould area of the site is one of the least active. And within that, almost no mention of the method of first using binders to sort out the body's detoxing ability (I wonder how many considered mould but were put off by awful reactions to antifungals).

So not long after writing about my plans I've changed them. I've been reading about chlorella and apparently they have a lot of lipopolysaccharides. This wouldn't be good for anybody experiencing excessive immune activation. I also had the heart palpitations which weren't good, so I'm switching to activated charcoal low and slow for a while. This has the added benefit of including ochratoxin in the list of bound toxins. So I'll cover the entire table that Nathan has on his website with charcoal and S. Boullardii.

I don't know why I began feeling slightly worse, or even why I started feeling better. Maybe I had the cold my partner had - I think it's common for people with CFS to experience improvement with a cold? So perhaps it wasn't the chlorella after all... although I did seem to be feel particularly better the day after taking it. I don't know. Anyway, with the negatives listed above plus the possibility of heavy metal contamination, I'm going to switch it out for a while.

10 mg of charcoal every 3 days starting last night. Hopefully I start to see improvements.

With regards to yourself, I wouldn't be too put off if you don't see any improvement when you get out of the worsening... If you haven't been binding then I imagine there's a chance you only get back to baseline. In the model I'm working in, if you induce a worsening and then stop altogether, it's not the ideal way. A constant flow out is what's needed and you may have just got rid of a good bit, but dumped more in for recirculation. If you don't see an improvement I would keep it in mind that you have yet to try the orthodox Nathan way - taking so low an amount so infrequently that you expect - and feel - nothing. Then increase slowly until you feel any worsening and go back to the dose you felt nothing on. I think if it's going to work, it needs a lot of time and not too fast a flow out of the gut. I'm not completely free of doubt myself, but if I don't have faith I'll never find out.

 

[hb8847]

With regards to yourself, I wouldn't be too put off if you don't see any improvement when you get out of the worsening... If you haven't been binding then I imagine there's a chance you only get back to baseline. In the model I'm working in, if you induce a worsening and then stop altogether, it's not the ideal way. A constant flow out is what's needed and you may have just got rid of a good bit, but dumped more in for recirculation. If you don't see an improvement I would keep it in mind that you have yet to try the orthodox Nathan way - taking so low an amount so infrequently that you expect - and feel - nothing. Then increase slowly until you feel any worsening and go back to the dose you felt nothing on. I think if it's going to work, it needs a lot of time and not too fast a flow out of the gut. I'm not completely free of doubt myself, but if I don't have faith I'll never find out.

Yeh I do get that, I just don't see how it wouldn't improve you in spite of triggering the Herx reactions. Like, I don't believe all of his patients were able to keep it at such a low dose so diligently that they never Herxed, it's impossible. And for me, it's not like I've been trying to set out to Herx, first it was minute amounts of Charcoal that did it, then with the Bentonite and Zeolite I was taking them for literally 10 days with no symptoms at all before it hit. Then after that it was glutathione which seems to have prolonged it.

Anyway I sort of feel like you have to Herx at least once to know what level you need, or whether it's even having any effect? I suspect Nathan was saying that more to dissuade people from going at it too hard maybe because they become demoralised, or because the recovery time slows down the whole process, I don't see how getting rid of toxins wouldn't actually make you better (which, if you're Herxing, is surely what's been happening).

But yeh, once I'm through this one it really will be a very low dose for me and very sporadically. My thought process is, even if I'm not getting better with binders it can't be hurting removing toxins, so I might as well keep taking it at such a low dose that doesn't trigger me to worsen while I maybe crack on with some other options. The nuclear option is also to just go immediately to antifungals although that would mainly just be to confirm beyond any doubt the presence of mould because I don't see anyway it helps my situation.