frozenborderline
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
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?
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.
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?
YeahHave you tried treating mold @frozenborderline ?
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 itHave 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.
How are you all doing?
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?
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.
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.
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.
My natural inclination is to be cautious of alternative medicine,
I have yet to open my charcoal bottle.