Multiple binders

[frozenborderline]

https://openletteropenmedicinefound...o-the-open-medicine-foundation-by-thea-storz/

 

[seamyb]

Have you tried treating mold @frozenborderline ?

 

[seamyb]

I had a crash from nowhere and I think it was because I started eating spinach. It's high in chlorophyll and that is a binder of aflotoxins. I'd been eating crap loads of it because I tried to make my diet better and out of nowhere I was very ill. Anybody else noticed this off leafy greens?

 

[SWAlexander]

I had a crash from nowhere and I think it was because I started eating spinach. It's high in chlorophyll and that is a binder of aflotoxins. I'd been eating crap loads of it because I tried to make my diet better and out of nowhere I was very ill. Anybody else noticed this off leafy greens?

Yes, dark greens such as spinach, broccoli are a no-no for me. But I have elevated phytanic acid.

 

[seamyb]

Yes, dark greens such as spinach, broccoli are a no-no for me. But I have elevated phytanic acid.

Are you sure that's why? I read a paper there that says only about 5% of chlorophyll phytol is absorbed. Do you have to avoid lamb and beef too?

I just read about Refsum's disease, which is characterised by high phytanic acid. Apparently when it gets too high, arrhythmia can occur, but this is very rare in a rare disease. But I can't help wonder about it - I get heart palpitations when I take chlorella and when I started eating spinach. Something is going on here, but the overwhelming evidence suggests it is the binding property which makes my other symptoms worse. I don't get heart palps from any other binder, only those which have chlorophyll.

How did you get your phytanic tested, part of an OAT?

 

[Lalia]

Are you sure that's why? I read a paper there that says only about 5% of chlorophyll phytol is absorbed. Do you have to avoid lamb and beef too?

I just read about Refsum's disease, which is characterised by high phytanic acid. Apparently when it gets too high, arrhythmia can occur, but this is very rare in a rare disease. But I can't help wonder about it - I get heart palpitations when I take chlorella and when I started eating spinach. Something is going on here, but the overwhelming evidence suggests it is the binding property which makes my other symptoms worse. I don't get heart palps from any other binder, only those which have chlorophyll.

How did you get your phytanic tested, part of an OAT?

I have a complete loss of oral tolerance thanks to mould and metals. Can only eat a handful of foods & if I stop eating one I lose tolerance to it.

 

[Lalia]

https://openletteropenmedicinefound...o-the-open-medicine-foundation-by-thea-storz/

Have a look at the PolyBio Foundation and Amy Proal, they’re digging into long c now but prior to that they were exploring how all pathogens (inc fungal) trigger chronic disease. Proal is active on Twitter & I believe she has (or had) ME herself.

 

[Lalia]

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.



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.

Just checking in to see if you decided to reach out to the Burghwood Clinic? I had a look at their website & think they look interesting

 

[SWAlexander]

Are you sure that's why? I read a paper there that says only about 5% of chlorophyll phytol is absorbed. Do you have to avoid lamb and beef too?

I just read about Refsum's disease, which is characterised by high phytanic acid. Apparently when it gets too high, arrhythmia can occur, but this is very rare in a rare disease. But I can't help wonder about it - I get heart palpitations when I take chlorella and when I started eating spinach. Something is going on here, but the overwhelming evidence suggests it is the binding property which makes my other symptoms worse. I don't get heart palps from any other binder, only those which have chlorophyll.

How did you get your phytanic tested, part of an OAT?

Yes, I must avoid any animal with a ruminant. Although I eat sometimes a little beef and I´m okay. Phytanic acid seems to fluctuate. But butter and fresh cheese make me feel irritable and my system (cerebellar ataxia) and hearing problems. Aged cheese on the other hand is no problem. Dark green veggies can also elevate phytanic acid. Spinach leaves in addition a metal taste.
I also have cataracts for the second time.
Yes, I had a test back in 2016. Most PCPs don't know what it is or what to order, so I guided them by providing the Lab-code: "VLCFA" (very-long chain fatty acids). My 1st test was done at Tri Core Labs in NM. Now I will have "VLCFA" tested again here in a German Lab as soon I find a doctor who is willing to cooperate and take my blood to send it in. Al X-linked problems (gene ABCD1) should be taken seriously.

 

[frozenborderline]

Have you tried treating mold @frozenborderline ?

Yeah

 

[frozenborderline]

Have a look at the PolyBio Foundation and Amy Proal, they’re digging into long c now but prior to that they were exploring how all pathogens (inc fungal) trigger chronic disease. Proal is active on Twitter & I believe she has (or had) ME herself.

They seem to have most integrity and promise of any me/cfs research org. Still seems lile they're looking more for pathogens inside body rather than toxins or pollutants outside and inside it

 

[hb8847]

How are you all doing? @seamyb

I've continued with the S Boulardii and have had a few bad Herx reactions to it, off of a very low dose. I'm only finally finding out the dose I can tolerate and it's no more than 1 capsule of 5 billion CFU once every two days, which is on the very low end of Dr Nathan's scale.

I think I mentioned before it's also been helping my food sensitivities so there is definitely something positive going on there, and based on how sensitive I am I'm now thinking the reaction it's causing is more to do with the effect it's having on my gut microbiota than as a binder - as in, the Herxes are being caused by displacing bad gut bacteria or fungus than mould toxins (although it could be both). So my plan is basically to keep taking that and build up the dose gradually and see where that takes me, and maybe to start adding in some probiotics.

 

[seamyb]

How are you all doing?

I'm doing pretty terribly.

I've severely reduced sugar and am limiting carbs. Since I did this, I've started reacting to anything slightly antifungal - olive oil, garlic etc. I believe I've got a fungus, probably candida, in the gut and I've prevented it from creating biofilm, so that a load of stuff that didn't affect it before is now killing it. My air hunger is very bad these days and I'm generally just worse.

But on the bright side I have more information and hopefully the gut actually constitutes a far larger proportion of my illness than the sinuses. So if I keep at the diet and taking antifungals it will put me in the right direction.

I'm certain my gut is leaky. I don't know if I should try and treat this first or if it's the candida or whatever causing it and so I should just treat it. I'm back to trying chlorella, I got a new brand that seems to be better tested than the previous, so hopefully I don't get heart palpitations. So far it's been ok. Caprylic acid is one thing I want to use to fight it, but it causes me air hunger. So hopefully I can reduce the air hunger with binders as I seemed to be able to before.

I've just blown a crap load of money on the mycotoxin panel, an OAT test and a general toxin panel, all from Great Plains. I'm sick of guessing based off symptoms. One thing I have in the back of my mind is my amalgams. I'm hoping they're not a factor because that's a whole shit show to try and fix.

I am I'm now thinking the reaction it's causing is more to do with the effect it's having on my gut microbiota than as a binder

Is it possible you still have candida? S. Boullardii releases caprylic acid and stuff that kills it. Might be why you're herxing? Are the foods you can't handle by any chance antifungal?

 

[hb8847]

Sorry to hear it's not going great.

Is it possible you still have candida? S. Boullardii releases caprylic acid and stuff that kills it. Might be why you're herxing?

Yes I probably have Candida - it appeared on my first stool sample result, and then I treated with gut antifungals for about a year and my symptoms improved quite a bit. It wasn't on my second stool sample but that was a good 4 years ago and I think it's probably likely Candida or some other fungus has returned, particularly given the mycotoxin test I had last year (Candida produces mycotoxins).

Up til now I'd been assuming the mould was in my airwaves but, as I said, given how reactive I am to S Boulardii I think it's more likely to be fungus in my gut. Fortunately the S Boulardii should both be helping to get rid of that and bad bacteria, as well as acting as a binder for the mycotoxins. The only frustration is how little I'm able to take, but I guess that's just a sign of how much I need it.

I'm going to keep documenting here how quickly/slowly I'm able to increase the dose, I'm currently doing a 5B CFU capsule every other day and I can tell each night that I've taken it, because it gives me quite bad insomnia and a very mild worsening of aches and stuff the following day, which I assume is a precursor to Herx symptoms.

Are the foods you can't handle by any chance antifungal?

No the foods aren't really related to that, I don't think my food reactions are Herx based because they're much more immediate (whereas the Herx stuff takes time to build up). More I think I have a problem with my immune system recognising what is harmful and overreacting to foods which are safe, which I think I've read is common in people with mould or gut health issues.

I spoke to a gastroenterologist about a year ago who said he saw lots of people like me in his clinic with awful food sensitivities and CFS type symptoms (although I was definitely on the 'more severe' scale), and that he was basically convinced my problem was bacterial dysbiosis. His recommendation was a combination of antibiotics specifically targeted for the gut (Rifaximin) plus a specific probiotic called Symprove which I've mentioned here before, with the key being to take them both at the same time (I assume the point here is to try to recolonise the gut with healthy bacteria before the bad stuff can regrow.)

Unfortunately I was unable to tolerate either but now with this S Boulardii thing seeming to go OK I'm wondering about whether I might be able to re-try at some point. If I can get the Boulardii to a reasonable level I think the first port of call might be to add in some Symprove and see if I can tolerate that, and then maybe eventually the antibiotics, but from what I understand the Boulardii should be doing a pretty good job at that alone.

 

[seamyb]

I will talk more later when I have time but I just want to say a few things which would worry me about your approach, whether rightly or wrongly.

Firstly, if your issue is candida, then antibiotics might be harmful. I've followed a number of different candida doctors' content and they disagree on so many things, but antibiotics are the one thing they agree on. It's the killing of gut bacteria which allows candida to grow in the first place. Antibiotics are apparently the number 1 cause. I've just had my microbiome tested and I have no pathogenic bacteria, but I am low in bifido, very low in lactobacillus, very low in some others and have another which was not found at all. I'm getting an OAT test, mycotoxin panel and general tox panel soon, but my microbiome test tells me the low levels of beneficial bacteria is probably what allowed the candida to grow in the first place.

I'm on low carb diet and will be trying to treat with caprylic acid and other things which are antifungal while trying not to kill more bacteria. Once I have the candida lowered I'll start probiotics and trying to replenish the bacteria.

The other thing I wonder about is leaky gut and probiotics, even the S. Boullardii. With a candida overgrowth you likely have leaky gut... it would certainly explain your food intolerances. I think taking any probiotics with leaky gut is a bad idea, as they will pass through and trigger the immune response. It could be possible that this has something to do with the effects you've experienced.

Just putting my thoughts out there, not trying to pretend I'm qualified to advise.

 

[hb8847]

Firstly, if your issue is candida, then antibiotics might be harmful. I've followed a number of different candida doctors' content and they disagree on so many things, but antibiotics are the one thing they agree on. It's the killing of gut bacteria which allows candida to grow in the first place. Antibiotics are apparently the number 1 cause.

I understand your concern, and I'm aware of the dangers of antibiotics which are quite probably the cause of most people's dysbiosis to begin with.

That said, as far as I understand they are still the gold standard for fixing bacterial gut problems like dysbiosis or SIBO, because you need to get rid of them somehow. And if you take probiotics before removing the "bad stuff" it likely won't do much or it could even add to the problem if you have SIBO, as that's not necessarily an issue of bad bacteria but rather bacteria in the wrong place (small intestine).

The key thing is which antibiotic you take, and how you take it. Rifaximin is a targeted antibiotic for the gut and barely any gets absorbed into the bloodstream. But most important is to take it in conjunction with the probiotics - this fills up the "free real estate" left by the antibiotics and prevents the bad stuff from coming back.

Pretty much every gut specialist I've spoken to advocates some form of antibiotic for this, even the doctors who are most anti the medical dogma. Of course there are other "natural" antibiotics you can take, and I plan to before I do the hard stuff, but they do largely the same thing. I think the main concern over antibiotics here is taking general ones willy-nilly for all sorts of ailments without actively working to fix the damage to the gut microbiome with pre/probiotics.

As for the proliferation of Candida, yes this is also a concern but it is why I'm waiting til I get the S Boulardii up and running first. That said, if I have dysbiosis or SIBO this will be allowing things like Candida, leaky gut whatever else to proliferate, so even if I have some success with the Boulardii eventually fixing the microbiome will be key to maintaining any improvement I think.

The other thing I wonder about is leaky gut and probiotics, even the S. Boullardii. With a candida overgrowth you likely have leaky gut... it would certainly explain your food intolerances. I think taking any probiotics with leaky gut is a bad idea, as they will pass through and trigger the immune response. It could be possible that this has something to do with the effects you've experienced.

It wouldn't surprise me if leaky gut was a factor in the food intolerances and my wider immunological issues. Though I'm not sure how valid is the concern though about the probiotics - the gut may be leaky but it's still not easy for most things to pass through the intestinal barrier and none of the gut doctors I've spoken to have said probiotic bacteria can pass through into the bloodstream. Remember none of the binders get through (charcoal, bentonite etc) so a leaky gut is still able to filter out things it knows not to let through. I've just had a quick search and I can't find any literature suggesting probiotics can get through, most things say they're essential for fixing leaky gut which again echoes what I've heard from the doctors.

In the past I've taken probiotics and specifically the Symprove one recommended, and I did end up reacting to that but again it was a Herx-style reaction similar to the one I've gotten from the S Boulardii and the bentonite. It was also very delayed like the Herxes, whereas if I was reacting directly to the probiotic entering the bloodstream it would likely be immediate. My guess here is it's doing something similar - displacing bad bacteria, and the residue from the toxins is getting absorbed into the bloodstream. Again, not something I'm really concerned about.

As for the S Boulardii, I am aware that this can cause issues in some people but this is generally for people with compromised immune systems, as that allows the Boulardii to take over and colonise other areas in the body and you can get very sick with fungemia. But my understanding is this is pretty rare, and certainly if this was something that was happening to me I think I'd be aware of it by now. In healthy people I think it passes through the gut fairly quickly.

 

[MonkishSubset]

I thought I’d pop in and say hi, since I took my first dose of activated charcoal a couple days ago. I’ll be starting on this journey with y’all. I definitely have to fine-tune my dose but so far so good.

I first got sick after unknowingly moving into an apartment with leaky windows. I’ve lived here for 17 years, and have been sick for 15 of them (argh).

I began seeing a functional practitioner last December. She diagnosed me with EBV reactivation, mold exposure, and a potential tick-borne illness. All confirmed by labs, including a urine mycotoxin test—positive for trichothecenes, gliotoxins, and aflatoxins. Thus far we’ve been focusing on the EBV plus my food sensitivities. Phase I being more or less done, it’s time to tackle the mycotoxins!

My natural inclination is to be cautious of alternative medicine, and I kind of had to hit bottom before going to a functional practitioner, but I’m really glad I did. The book Toxic helped me understand why I have so many things going on. I was a bit suspicious of getting multiple diagnoses… until I understood that the mold probably caused my body to no longer be able to manage earlier EBV and tick exposures.

Good luck to us and I hope you all are doing well!

 

[Rufous McKinney]

I thought I’d pop in and say hi, since I took my first dose of activated charcoal a couple days ago. I’ll be starting on this journey with y’all. I definitely have to fine-tune my dose but so far so good.

I have yet to open my charcoal bottle.

Now I've ordered Zeolite. (I felt metal poisoned three weeks ago during severe acute gastro event and me soaking in hot baths every four hours for a week.)

I'd like to wade thru some of the info here but reading is mostly offline right now.

My natural inclination is to be cautious of alternative medicine,

My natural inclination, starting in 1969, was to have nothing further to do with doctors and I worked for decades to achieve my goal.

I mostly do chinese traditional herbs. Help me more than anything else anybody ever offers.

 

[Rufous McKinney]

I have yet to open my charcoal bottle.

I thought the charcoal would just "bind" but given I don' t understand the chemistry of binders (the chemistry I studied, isn't explaining why a molecule would give up its Ca +_+ and instead grab Mercury +++ instead.

This fundmental process I don't understand chemically.

Anyway- I didn't launch the charcoal because it was part of a All THIAMINE cure I also did not launch (after promise I would try that).

Really sick in Nov and Again in March: I fall off the protocol wagon

 

[MonkishSubset]

I’m sorry, I hope you improve soon.

What convinced me to try binders (never studied chemistry) is the number of agricultural studies I ran across showing that they protect animals from mycotoxin exposure in measurable ways. I found double-blind studies in mink, chickens, and cattle. If I recall correctly the animals on binders gained more weight and showed fewer inflammatory markers.

Putting the ethics of deliberately exposing animals to mycotoxins to one side…