Multiple binders

[Lalia]

Yes @Lalia , this is pretty much my take on it. I read a bit of Annie Hopper's spiel and knew instantly I'd loathe her and her program. The alternatives didn't seem much better but I bought Gupta's one anyway (also has a Neil Nathan recommendation quote on his site), and yes it basically seems like meditation interspersed with some "positive affirmation" stuff. It all feels very dubious to me, but frankly I'm pretty much out of options otherwise. I tested positive for Mast Cell Activation Syndrome last year and saw one of the foremost experts on it in the UK, and after a full year with him he was completely stumped because I was reacting to all his treatments.

I agree with you about meditation, I've done it on and off for years and I think it's a great thing to be doing even if it doesn't fix my sensitivities, so if there's anything I'm going to take away from the Gupta/DNRS nonsense it's just to do that much more regularly, but I've given up any hope that I can materially affect my immune or nervous system in that way. I do wonder why Dr Nathan is so pro it though, presumably he has had patients who it has helped? Which makes me think, were these patients fundamentally different to me, or is there actually a chance it might help? It's all very confusing.

Like, there is definitely science backing the theory that we can affect our nervous system through meditation - you can use it to reduce chronic pain, and theres all that Wim Hof stuff where patients were consciously able to affect their immune system though meditation and cold water therapy. I feel like if I could just like communicate to my immune system and tell it to calm the fuck down, that the food I'm eating is safe, and maybe even to stop reacting to mould itself, it would have such a huge impact on my health situation and I'd be able to take supplements and meds etc. I so want to believe...

Everyone’s different, and I used to think this same thing - if I could just get my immune system to calm the fuck down! But I do believe my immune system is stuck in a loop and it’s going to take more than meditation to get it working again. The treatments that make the most sense to me are things like IVIG and plasmapheresis. Both of which, appear to be, being explored as Long Covid treatment now. These are heavy hitting treatments that either replenish and redirect the immune system or take the burden off the system, enough so it can fight back. Or at least that’s my layman interpretation of the treatments. I think that’s asking a bit much of meditation to have that same action. Unfortunately here in Australia there is zero chance of accessing treatments like that for ME & I am now so sensitive to everything I doubt it would work. Maybe med/ brain retraining is a way in to dampening the sensitivity though? Like chipping away at it? I really don’t know.

Nathan has definitely seen it help a significant portion of his patients. I think he says this in his book.

 

[Lalia]

It wouldn't surprise me. I think so much stuff for these chronic conditions is related, hence why there are so many people on this site with 1) such similar symptoms and 2) such similar reactions to meds and supplements, even if we all differ slightly in areas, and probably whatever triggered our illness.

MCAS is apparently very common with mould illness, and common in CFS in general. As are food/chemical sensitivities. One classic symptom of MCAS is breathing difficulties and airwave constriction, as it's a precursor to anaphylaxis which MCAS can also trigger, so perhaps your air hunger symptom is a similar ballpark.

Even if it's not MCAS it's surely a sign of some sort of immune system trigger. And if you're Herxing from detox supplements, the obvious link is that whatever you're detoxing (eg mycotoxins or other biotoxins) is also sensitising your immune system to other harmless substances (binders, glutathione). It's what I've assumed to be the case for me anyway, and frankly by now I'd be very surprised if it wasn't the case.



Yes, possibly. Mast Cells also exist in the gut so in theory it wouldn't need to be absorbed to be a trigger, and I imagine there are other immune cells there too that could well be triggered by anything passing through, regardless of whether it's absorbed into the blood.

It’s interesting to hear you say you failed all the MCAS treatments that specialist gave you. I feel like MCAS is the only diagnosis medicine has to explain hypersensitivity, but like you, I don’t fit it.

I failed all anti-histamines and then stopped trying to treat MCAS because I didn’t resonate with the symptom picture. For me, the way I explain my sensitivities is that it’s like my liver shut down at some ooint, but in a chronic way, not an acute way. I now can’t filter toxins, so they accumulate in my body. And anything I take that adds to my toxic load or causes me to detox makes me worse.

This is the best way I have of explaining it, it’s not MCAS and it’s not MCS. But I’ve seen other people experience the same thing (like you guys). It’s just even more poorly understood than all the other poorly understood stuff we have going on. So doctors and naturopaths have no idea what to do with it.

I’ve started seeing a decent naturopath, via zoom, but based in Sydney. Who seems to understand this. I don’t know if she’ll be able to help me, but if you want her details, let me know.

After our initial consult her recommendations were butyrate, calcium-d-glutaric and TUDCA. Plus epsom salt baths.

 

[Lalia]

From a big picture perspective, this article from Yale looking at the mechanism behind long Covid is promising: https://yaledailynews.com/blog/2021...cine-study-the-long-term-effects-of-covid-19/

As is this (admittedly long) video with David Putrino (one to watch):

While nothing in here is treatment advice, it’s helpful to see them getting closer to understanding what our immune systems are doing.

 

[seamyb]

Shiiiiit

I now don't believe my improvements came from fatty acids or PC.

I said the exacerbations were creeping back in and when I increased the frequency of charcoal I actually did have a pretty bad one. Yesterday and the day before were pretty bad.

But I had stopped taking two things: broccoli extract and calcium d glucarate. Took these again yesterday and I haven't had to reach for the cumin once today. So, it's possibly one of these that has been making me feel better.

If it's the broccoli extract, it could be a number of active compounds. Maybe sulfurophane, in which case it's the increased capacity of the liver to detox which is the cause.

If it's the calcium d glucarate, then it's possible that gut bacteria are producing the enzyme beta-glucuronidase which undoes glucuronidation, hence making the detoxified toxins toxic again in the gut.

The latter would raise more questions about SIBO. So it would be my liver isn't dealing with the toxicity from my sinuses because of a problem in my gut. Madness.

 

[hb8847]

It’s interesting to hear you say you failed all the MCAS treatments that specialist gave you. I feel like MCAS is the only diagnosis medicine has to explain hypersensitivity, but like you, I don’t fit it.

I failed all anti-histamines and then stopped trying to treat MCAS because I didn’t resonate with the symptom picture. For me, the way I explain my sensitivities is that it’s like my liver shut down at some ooint, but in a chronic way, not an acute way. I now can’t filter toxins, so they accumulate in my body. And anything I take that adds to my toxic load or causes me to detox makes me worse.

This is completely me @Lalia . Like, when a doctor mentioned MCAS to me I was like "Omg this could be it, if I can just take calm down my MCAS I can start taking meds to address the deeper issue (be it mould or whatever)".

But the symptom profile didn't quite match, and most of the MCAS meds I tried either didn't work, or actively triggered me. The MCAS specialist I was seeing seemed at a loss, he basically insinuated it was not normal for his patients to be so reactive to the very medications intended to help.

So, I feel like perhaps there's something different going on. I know there is an MCAS factor in my illness, because I've tested positive for the mediators in my blood, but I think that's only one part of something going wrong in my immune system's wayward reactions to threats. Like you, I'm pretty sure it's liver related, and based on what I've read/heard from doctors, I think it's most likely that repeated exposure to mould toxins have just raised my immune system's sensitivity over time to the point where it's responding to safe foods as threats.

The issue is what the F to do about it all, particularly given the MCAS treatments failed.

The treatments that make the most sense to me are things like IVIG and plasmapheresis. Both of which, appear to be, being explored as Long Covid treatment now. These are heavy hitting treatments that either replenish and redirect the immune system or take the burden off the system, enough so it can fight back. Or at least that’s my layman interpretation of the treatments.

This is interesting. I'm currently at the stage of reaching out to mould doctors here in the UK, there seems to be some crossover with sensitivities and immune system issues which is encouraging. For example, this is one of the clinics, and they do specialise in some treatments designed to reduce immune system reactivity, although I'm not sure they are the ones you mentioned. I'll look into them. Please keep me in the loop on how you're getting on, and whether you find out anything interesting - I really feel we might be in a similar boat here in terms of our respective illnesses.

 

[hb8847]

General update -

So I've continued taking liposomal PC, 420mg on alternate days, which I seem to be able to tolerate OK. I may at some point try to make it a daily thing but for now I'm just grateful I can tolerate that amount.

I've also been doing Bentonite 1/4tsp every other day, nothing to note.

The weird one has been with S Boulardii, which I started about 5 days ago. I hadn't expected it to do much because I wasn't reacting much to the Bentonite which is considered stronger, but yeh, I was very wrong. I did about 10 capsules of 5 billion CFU over 2 days (so almost Nathan's maximum dose - another smart decision by me), and each night I had some very weird night time symptoms - crazy dreams, lots of insomnia, and some heavy night sweats which I hadn't been getting at all. Not what I'd expected at all, and I'm not even sure if it was a Herx because it didn't exacerbate my aching and fatigue like the Bentonite/Charcoal had. I came off the Boulardii after the 2nd day and gradually my night symptoms lessened, although they're still not back to normal, about 5 days later.

Plus another weird symptom is I randomly had a worsening of mental/mood symptoms in the past few days that I'm also convinced are due to the Boulardii, and again are gradually on their way out since I've stopped it.

So something is going on with this stuff, I just don't know whether it's in it's job as a binder (because if it were surely the reaction would have been more delayed like it was with the Bentonite, and also been of the aching variety). I feel like this may have been some sort of gut related symptom - I know S Boulardii has effects on the gut microbiome as well, and is used to displace bad bacteria. I wonder whether this is what might have been triggering my symptoms, maybe it's from displaced bacterial toxins flooding my immune system?

I guess it's also possible the symptoms were due to it's function as a binder, considering it binds different mycotoxins to the Bentonite, and those toxins may trigger a different reaction in me when displaced? Who knows.

I feel like I should probably keep doing it because it it is triggering severe night sweats from toxins then that's something that would benefit my health, even if it's not directly mycotoxin related. But yeh, again I think I'll be doing it at a much lower dose. I wonder if this is a common reaction at all to S Boulardii, and if anyone knows what causes it?

 

[hb8847]

Another thing - I wrote this comment earlier in the thread, regarding potential problems when taking Magnesium (as a laxative) in conjunction with Charcoal, but I've since learned some info that might affect it, just in case anyone is reading I wanted to share:

I've read it's pretty safe. And presumably it shouldn't remove too many nutrients so long as you're taking it away from food?

Something I have just read though which is interesting is that it's not recommended to take Magnesium Citrate with Activated Charcoal as it could cause problems, including electrolyte imbalances. A bit concerning then that Magnesium Citrate was recommended in Dr Nathan's book then for constipation, I've been taking it daily now for about a week.

I've since contacted Great Plains Laboratories about this, they got back to me the other day:

Magnesium Citrate works on eliminating the bowels by increasing the amount of water absorbed in the intestines (because it is an electrolyte), creating an osmotic effect. The reason you do not take it with charcoal is because the charcoal will bind to the mineral and it will not be absorbed by the system. This could potentially create an imbalance in electrolytes, though not likely, unless taken for long period of time, and/or not spaced appropriately away from meals, medications, and supplements. Charcoal adsorb nearly everything so caution should be taken when utilizing it. Clay is similar in that it binds to a significant amount of compounds, so it also needs to be spaced appropriately.

So it seems that the Magnesium & Charcoal combination doesn't cause problems in itself, just when you take them too close together.

That said, I've also read Magnesium shouldn't be used for long term constipation issues because it can reduce the body's natural ability to move stool through the system, making you reliant on it. So perhaps in regards to binders there are better alternatives.

 

[Lalia]

J

General update -

The weird one has been with S Boulardii, which I started about 5 days ago. I hadn't expected it to do much because I wasn't reacting much to the Bentonite which is considered stronger, but yeh, I was very wrong. I did about 10 capsules of 5 billion CFU over 2 days (so almost Nathan's maximum dose - another smart decision by me), and each night I had some very weird night time symptoms - crazy dreams, lots of insomnia, and some heavy night sweats which I hadn't been getting at all. Not what I'd expected at all, and I'm not even sure if it was a Herx because it didn't exacerbate my aching and fatigue like the Bentonite/Charcoal had. I came off the Boulardii after the 2nd day and gradually my night symptoms lessened, although they're still not back to normal, about 5 days later.

Plus another weird symptom is I randomly had a worsening of mental/mood symptoms in the past few days that I'm also convinced are due to the Boulardii, and again are gradually on their way out since I've stopped it?

jusr a quick one & I’ll reply properly later - S Boullardi didn’t work for me. I took a teeny tiny bit and it set off a three week flare. I was super depressed as a result too, when my body gets inflamed, I get depressed. I also got a really yeasty gross taste in my mouth.
I saw a different naturopath a couple of months after taking this & she said the reaction is not uncommon amongst her mould patients. It’s a yeast of course, so if you’re sensitive to mould you could be reacting to it. Take care x

 

[hb8847]

jusr a quick one & I’ll reply properly later - S Boullardi didn’t work for me. I took a teeny tiny bit and it set off a three week flare. I was super depressed as a result too, when my body gets inflamed, I get depressed. I also got a really yeasty gross taste in my mouth.
I saw a different naturopath a couple of months after taking this & she said the reaction is not uncommon amongst her mould patients. It’s a yeast of course, so if you’re sensitive to mould you could be reacting to it. Take care x

Thanks for this @Lalia , I'll definitely bear it in mind. And yes I also get depression when I'm inflamed.

 

[seamyb]

I'll get back to some of the points raised here later. But

another smart decision by me

I have also made a very smart decision. I've been looking into why calcium D glucarate makes me feel better and one avenue was inhibiting the beta-glucuronidase enzyme which may mean I have an overgrowth of pathogenic bacteria in the gut.

So I found somewhere that glucomannan also lowers beta-glucuronidase. I bought some thinking I've heard of this somewhere before. I've been taking other fibers with no issue, so did a full capsule and then another the next day.

Where did I hear about glucomannan before, I wondered as I started to feel more sick. Why am I feeling so sick?

It's only a bloody binder! I'm in for a horrible few days I fear.

 

[hb8847]

which may mean I have an overgrowth of pathogenic bacteria in the gut.

If you do then the S Boulardii should be helping, it's very effective as a treatment for gut dysbiosis. It's another reason I'm hopeful it might be helping me, particularly if mould has colonised the gut, or negatively affected the gut flora in some way...

Another point on S Boulardii - I have actually taken it before, a few years ago for SIBO but it did nothing, as far as I could tell, hence why I didn't really consider it as a binder and took the maximum Nathan dose without thinking. But previously I was taking a different brand, this one, whereas the one I took recently and which caused the big reaction was this. So, maybe something has changed in my physiology (although I doubt it), maybe I initially got a bad batch, or maybe it's very important which brand of Boulardii you go for as you might get very different results - perhaps something to bear in mind.

I have also made a very smart decision.

It's actually remarkable how I'll put hours into research and write extensive symptom diaries in the hope of spotting a pattern, only to blow it all up by repeatedly making stupid decisions on a whim. Nice to know I'm not the only one (although your mistake seems like a pretty difficult one to spot).

 

[seamyb]

I found what we're doing wrong here.

• Water consumption during detoxification should be at least half your body weight in ounces.
  • For example, if you weigh 150lbs, you’re going to want to drink 75 ounces of water a day.
  • Any caffeine containing drinks won’t count toward that, because caffeine actually uses up water to be processed. So, it needs to be pure water or herbal teas.

75 ounces of water is 75 pints.

Joking aside, I drank shite loads of water in the early days and found that it actually made me feel better. Really took the piss with it. But 75 pints tells me this person has their wires crossed.

Might try and up my water game again though.

 

[Lalia]

I found what we're doing wrong here.

• Water consumption during detoxification should be at least half your body weight in ounces.
  • For example, if you weigh 150lbs, you’re going to want to drink 75 ounces of water a day.
  • Any caffeine containing drinks won’t count toward that, because caffeine actually uses up water to be processed. So, it needs to be pure water or herbal teas.

75 ounces of water is 75 pints.

Joking aside, I drank shite loads of water in the early days and found that it actually made me feel better. Really took the piss with it. But 75 pints tells me this person has their wires crossed.

Might try and up my water game again though.

oh nice find!! I’ll give it a go and let you know when I’m cured

CDG is one of the other things my naturopath wants me to try. But I have a small overgrowth of C.Diff in my gut (1% of my gut bacteria) and calcium feeds this, so I am not so sure. When I point out contraindications to the things she suggests, she acts like I’m paranoid which really shits me. I’m like lady, I reacted to mouthwash last year, don’t treat me like a moron.

I tried Epsom salts this week and that was a disaster. I gave too much hydrogen sulphide producing bacteria in my gut and a quick look through PR suggests ppl who have that may not do well with mag sulfate. There’s always a catch.

now I’m trying to decide if I try a baby probiotic called bio giai, sodium butyrate or zeolite next. I’m starting to feel like I need to do something to help my gut, and get that bile flowing better before I keep pushing on with these darn binders. I hate that we’re left to work all of this out on our own.

 

[seamyb]

But I have a small overgrowth of C.Diff in my gut (1% of my gut bacteria)

How did you get that tested? I've been thinking about gut microbiome testing but haven't found anything that looks thorough.

I’m like lady, I reacted to mouthwash last year, don’t treat me like a moron.

Stop treating me like I'm crazy just because I'm telling you crazy things!! Yea, it sucks. Wish I could give everybody a week of this and bathe in sympathy for the rest of my illness.

now I’m trying to decide if I try a baby probiotic called bio giai, sodium butyrate

I'm thinking about both these things (well, a more generic, adult probiotic because I'm not as sensitive to as many things as you). Butyrate especially, I think it might be good for the gut and possibly quieten down the exacerbations. Hoping it does good things for gut permeability. I've been thinking about glutamine as well, but there are a lot of people on PR who react badly to it. Maybe small doses and just keep at it.

 

[hapl808]

75 ounces of water is 75 pints.

Wait, did I miss something here? Isn't 75 ounces around 4.5 pints? (Or am I missing the joke?)

 

[seamyb]

Wait, did I miss something here? Isn't 75 ounces around 4.5 pints? (Or am I missing the joke?)

Shit, no I mistook pounds and ounces. Brainfog

That makes much more sense.

 

[hapl808]

Shit, no I mistook pounds and ounces. Brainfog

I thought that might be. I can't throw stones as I overcooked my food by 30 minutes yesterday. I forgot it was cooking even though I was sitting in the kitchen and watching it cook.

 

[seamyb]

I can't throw stones

Yea, same. Muscle fatigue

 

[seamyb]

I have megadosed water today and yesterday and the severe worsening from glucomannan went away completely.

Is this the way forward? Flush the exacerbations out through the kidneys?

@hb8847 what's your water intake been like? I'm on like 10 pints a day now and it's possibly making the difference I needed.

 

[hb8847]

@hb8847 what's your water intake been like? I'm on like 10 pints a day now and it's possibly making the difference I needed.

My water intake has always been crazy high - one of my symptoms is excessive thirst & urination which I think is fairly common for both MCAS and mould illness, & I think I'm probably at around 4 litres on average. Unfortunately I don't think it helps me much but hope it works for you.