• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Multiple binders

seamyb

Senior Member
Messages
560
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!

Hi Monkish!

I have abandoned the binder route for now. I just couldn't stop exacerbating my symptoms and have a few months off work to get better, so I'm attacking rather than binding now.

I discovered I have a bad case of candida too. I went low carb, no sugar and started reacting badly to any food that had antifungal properties. Candida is a whole other kettle of fish to deal with, but it's one Nathan says you probably have if you have mold illness and will need to treat to recover. I chose to ignore this but it turned out to be true.

I get you when you say you're skeptical of alternative medicine. I have been militantly anti-pseudoscience my whole life. If I didn't have first hand experience and overwhelming observational evidence, I would probably deem this whole candida/mold thing as quackery if it was explained to me that most doctors don't believe it exists and the people who do are into "alternative medicine". There's a bitter irony with me getting this illness. Still, the scientific method is our best tool, it just hasn't been rigorously applied here by the choices of people. We're in the unique position as non-experts to understand a frontier of modern medicine and the largely political decisions which lead to medical neglect.

Do let us know how you get on and ask if you have any questions. I'm quite far down this road.
 

Rufous McKinney

Senior Member
Messages
13,256
I get you when you say you're skeptical of alternative medicine.

I do chinese traditional which I don t really view as alternative. Because its based upon a couple thousand years of careful work. Recent herbs came along around 800 AD.

Its a system. there may be some other "systems"...but western herbs largely have no system.

The system noted: this works in this type of situation, but not so in this other situation.

therefore, CTM is largely individualized.
 

Rufous McKinney

Senior Member
Messages
13,256
I have abandoned the binder route for now. I just couldn't stop exacerbating my symptoms and have a few months off work to get better, so I'm attacking rather than binding now.

Now I"m going to try Zeolite, having never launched the charcoal. Or the All Thiamine.

maybe I should just keep listing: not launched, or stopped quickly thereafter.

If it makes me feel worse, I want nothing to do with it.
 

seamyb

Senior Member
Messages
560
If it makes me feel worse, I want nothing to do with it.

If you have fungal issues, then the only way out is to kill it and, inevitably, make yourself feel worse. I base the value of a substance on how bad it makes me feel now... although that's slightly different with binders because I can't be sure WHY they're making me feel worse. But any antifungal compound I ingest is better when I can only take a tiny amount and still feel crap.

Incidentally, I believe the severity of my herxes and exacerbations have been greatly reduced just by quitting coffee. I had to drag myself off it, because I love it so, but the effect it had on my nervous system just made the hell a lot worse.
 

Rufous McKinney

Senior Member
Messages
13,256
Incidentally, I believe the severity of my herxes and exacerbations have been greatly reduced just by quitting coffee. I had to drag myself off it, because I love it so, but the effect it had on my nervous system just made the hell a lot worse.

For now, I don't think I have a candida problem. And that's likely due to the large number of people I"ve known chasing that one around. I decided to not bother chasing it. Maybe thats a mistake.

Incidentally, I believe the severity of my herxes and exacerbations have been greatly reduced just by quitting coffee. I had to drag myself off it, because I love it so, but the effect it had on my nervous system just made the hell a lot worse.

Been off my one cup of coffee for over a month. Its a tiny lift, making me feel slightly human for about 2 hours.

but trying to stay off. My new reward for sometime in the late morning: one orange squeezed, on ice.
 

seamyb

Senior Member
Messages
560
For now, I don't think I have a candida problem. And that's likely due to the large number of people I"ve known chasing that one around. I decided to not bother chasing it. Maybe thats a mistake.

I was the same, I wrote it off every time I heard about it... probably because of the difficulty in treating the gut topically and the prospect of having to give up sugar and carbs.

But what I've learned is that candida makes a very large contribution to my illness. I've seen it said here that candida cannot cause the type and severity of symptoms which bring people to this forum. I believe it absolutely can. I've also learned that with any chronic illness, candida sees opportunity.
 

Lalia

Senior Member
Messages
127
Location
Australia
@hb8847 how are you going with the binders?

@seamyb interesting to hear you're going after candida, let us know how you're getting on.

I've also stopped pursuing binders. I've been deteriorating rapidly over the last few months after molybdenum supplementation, which makes me think copper deficiency is causing the severity of my fatigue at the moment. This then led me to look at copper/ iron/ zinc status and metallothionein. Trying to understand why I keep becoming heavy metal toxic (no matter how careful I am w/ exposure). Down a different rabbit hole now... *sigh*
 

lenora

Senior Member
Messages
4,915
Hi @Lalia.....Have you had your electrolytes checked? It's possible that there is a problem in that area b/c in imbalance in that area can cause many really serious problems.

I also have problems with the 'B' vitamins.....so just get them my food at this point. Yours, Lenora.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
@hb8847 how are you going with the binders?

@seamyb interesting to hear you're going after candida, let us know how you're getting on.

I've also stopped pursuing binders. I've been deteriorating rapidly over the last few months after molybdenum supplementation, which makes me think copper deficiency is causing the severity of my fatigue at the moment. This then led me to look at copper/ iron/ zinc status and metallothionein. Trying to understand why I keep becoming heavy metal toxic (no matter how careful I am w/ exposure). Down a different rabbit hole now... *sigh*

Hi @Lalia

So I've taken a step back on the binders too. I think I mentioned my experience with the S Boulardii binder which I started taking back in January - basically I was super sensitive to it, which didn't make sense to me from the standpoint that it's supposedly the weakest binder. However it seemed to be doing something slightly positive for my food intolerances.

The only way these things made sense to me were if the S Boulardii was doing something different to the other binders, and its function as a probiotic (and natural antibiotic/antifungal) made me think it might have been clearing some Candida or bad bacteria or something, and so I decided to refocus my attention on my wider gut health rather than on mycotoxins specifically.

Given the positive effect on my food reactions I was keen to see how far I could get with the S Boulardii and I spent the next couple of months trying to establish a consistent dose. But it was so difficult, I was so sensitive I kept having what I thought were Herx reactions after about a week on the supplement each time.

Then about a month ago after another of these big reactions I decided to change tack again, and try something I'd been reading about called the Elemental diet - basically you go on a specific liquid diet where everything is pre-digested with the aim being that you starve the bacteria and fungus in your small intestine. It has high success rates for SIBO and has supposedly helped with a number of other ailments. I just reasoned this could be a quicker way to achieve what the S Boulardii was doing plus also give me a break from solid foods which I'm so reactive to.

This has been pretty interesting. After about a week I began to feel considerably worse, which I assumed was another Herx from all the starving bacteria dying off. That then continued for about 4 weeks and I'm very slowly beginning to come out of it now (but still not back to where I was before).

On the other hand, something definitely has improved in terms of my intestinal health as I'm now able to tolerate vegetable oils (a key part of the diet for fat content), whereas at the beginning I couldn't at all. And in the past week I've gone back onto solid foods and I'm able to eat meat with no problems which I haven't been able to do in years.

So there is some cause for optimism. Right now I'm just going to wait and see how much I improve before maybe trying some probiotics or something. But overall my focus has moved away from the mycotoxins and binders and back onto the gut. I just have a feeling that's where the main issue is.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
@hb8847

I've also stopped pursuing binders. I've been deteriorating rapidly over the last few months after molybdenum supplementation, which makes me think copper deficiency is causing the severity of my fatigue at the moment. This then led me to look at copper/ iron/ zinc status and metallothionein. Trying to understand why I keep becoming heavy metal toxic (no matter how careful I am w/ exposure). Down a different rabbit hole now... *sigh*

Sorry you've been declining. And I know the feeling about rabbit holes... I feel like I'm off down a new one every couple of months. It's like the most frustrating and boring detective job ever.

You mention mineral deficiencies and sensitivities to heavy metals - do you think you have a malabsorption issue? One thing I've found interesting since doing this liquid diet is that many things which I assumed to be internal reactions to things were actually probably to do with a damaged and sensitive gut lining.
 

Lalia

Senior Member
Messages
127
Location
Australia
Hi @Lalia.....Have you had your electrolytes checked? It's possible that there is a problem in that area b/c in imbalance in that area can cause many really serious problems.

I also have problems with the 'B' vitamins.....so just get them my food at this point. Yours, Lenora.

Hi @lenora I've just sent another OAT test off, so hopefully that provides some answers. My bloods are always normal but I suspect I’m deficient in potassium and calcium. I don’t get enough from food and supplement a lot of magnesium and sodium. Is there a better way to get an accurate read on electrolytes?

My issue is usually being able to tolerate the supplements I need to replenish these deficiencies (and my diet is very limited due to food reactions). Thank you for your message.
 

Lalia

Senior Member
Messages
127
Location
Australia
yes: likely the baths or in combination with more or less not being able to eat for many many days...forced fast and weight loss.

Thank you @Rufous McKinney just to clarify, do you think you accumulated heavy metals from the bathwater? I’m curious because I’ve been having a bath once a night for the last few years. At one point a naturopath recommended it to help w/ gentle detox (sweating). But now I’m wondering if it’s causing more problems than anything else.
 

Lalia

Senior Member
Messages
127
Location
Australia
Sorry you've been declining. And I know the feeling about rabbit holes... I feel like I'm off down a new one every couple of months. It's like the most frustrating and boring detective job ever.

You mention mineral deficiencies and sensitivities to heavy metals - do you think you have a malabsorption issue? One thing I've found interesting since doing this liquid diet is that many things which I assumed to be internal reactions to things were actually probably to do with a damaged and sensitive gut lining.

So interesting @hb8847 thanks for sharing your update. I’m really pleased to hear you’re able to tolerate oils and meat again - understand how frustrating it is to be on a restricted diet and still trying to get all your nutrients. Did you lose any weight on the elemental diet? That would be my fear.

Also did you end up seeing that new practitioner you mentioned a little while ago? Or perhaps it was a clinic you were talking about, my memory is struggling.

I definitely think I have malabsorption issues, my gut was badly damaged when I first got ME from a barium swallow procedure. It was one of the triggers that made me really unwell. I’ve struggled with food reactions and weight loss since then. Activated charcoal helped with absorption and weight gain at one point. But long-term I don’t think I have the nutrients needed to make metallothioneine, so the heavy metals always seem to creep back in. I’ve tried a lot of things to heal the gut and again they always seem to act like band-aid solutions.

Might have to try some foot baths or transdermal nutrients to see if they’re better tolerated. Good to hear from you, thanks for your message 😊
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Might have to try some foot baths or transdermal nutrients to see if they’re better tolerated. Good to hear from you, thanks for your message 😊

Good to hear from you too, and thanks for asking after me. And sorry again about your difficulties, I hope they improve. It does sound like we share a lot of the same ailments and symptoms, if I ever find anything that does help me I'll make sure to share it with you.

I’m really pleased to hear you’re able to tolerate oils and meat again - understand how frustrating it is to be on a restricted diet and still trying to get all your nutrients. Did you lose any weight on the elemental diet? That would be my fear.

Yes I did lose weight, and that was a concern as my weight wasn't great to begin with. A big component of the diet are vegetable oils for their fat content, but like I said I was completely unable to tolerate these at the beginning which apparently is common in people with intestinal damage (and seems to me to be a fundamental problem of the diet).

So at the beginning I tried to mitigate for this by just increasing the carb content (dextrose was my carb, it's usually that or something similar like maltodextrin), but this was so sickly in large quantities, it's basically sugar, so getting anywhere near the amount needed for maintaining my weight was impossible. After a while I just accepted I would lose weight to begin with, then hopefully try to add it back on with the vegetable oils when I could tolerate them, which fortunately is what happened. If you're really militant I reckon you could get there with the dextrose though, and if you have weight issues it might be worth considering adding that into your diet anyway.

Also to be clear I made my own "homemade" Elemental diet - there are commercial varieties but I reacted to everything I tried. I assume most contain some sort of ingredient I'm intolerant to, and by making my own I could at least just add everything separately so I could see what I was having issues to, and this was key for me in checking which vegetable oils I could tolerate (turns out I have a massive problem with coconut oil and olive oil which I assume are due to salicylate content, another common problem for people with damaged guts).

This was the formula I used, from the website www.siboinfo.com, which has videos explaining the diet and stuff. It seems to have been referred to a fair amount online from what I've read, and there are two options, one low in fat and the other high, presumably for people with problems with fatty oils. Even now that I'm back onto chicken I've still kept up with some homemade Elemental formula as it seems to be a good way of maintaining my weight and getting more nutrients.

Another thing about the diet is it's not cheap, neither the commercial nor homemade varieties, and from what I gather this is mainly due to the amino acid content. For some reason these seem to be really expensive, and you need a pretty good amount to meet protein requirements.

Like I said, I'm still not out of the Herx I experienced from this diet but if I start to see any benefit beyond the improved tolerance to foods I'll be sure to let you know.

Also did you end up seeing that new practitioner you mentioned a little while ago? Or perhaps it was a clinic you were talking about, my memory is struggling.

Well remembered, yes I had a consultation with a mould doctor a few months back but she basically said that to properly fix mould issues the gut has to be in a healthy state, or else the mould problem will just recur. Which makes sense I guess, and this was another reason for my decision to change focus to the gut.

My goal now is basically to try and heal the gut as much as possible, then if & when I've managed to do that to reassess, and if I'm still having issues and my mycotoxin levels are still high then I can go back to the mould. But my instinct tells me the core issue is with the gut and not mould (in my airwaves or elsewhere), and that my mycotoxin levels were probably caused by Candida (which the Elemental diet should have gone a long way to starving out).

I've got a consultation with a gastroenterologist coming up in a couple of days who seems very on-the-ball, if I learn anything from him about this diet or whatever I'll be sure to impart it here.
 

ChrisD

Senior Member
Messages
472
Location
East Sussex
Yea, like @hapl808 says, the fermentable ones do. Fungi and bacteria have a lot more enzymes for breaking down carbs than we do, so they can manage the oligosaccharides too.

I seemed to deal with fibers ok until I took glucomannan. And then they started introducing the new-ish symptom of panic attacks. Luckily these have gone away now, but I think they must have been having an effect on top of binding, which is why I'm now thinking about overgrowth.
.

I've just been trialling Glucommanan for a few days, primarily for Weight loss but also gut health and cholesterol. I could feel the anxiety/discomfort I've had since Cov. ramping up until last night had trouble staying asleep but also horrible nightmares when I did manage to get to sleep.

I never usually have nightmares, always pleasant dreams - so I'm pretty sure it's the glucomannan interaction with bacteria/fungi and negatively stimulating neurotransmitters or stress hormones.
 
Messages
11
No reason not to take them together, i have mixed and mixing CSM, zeolite, carcoal, betonite clay. it makes a difference for me but unfortuntatley not enough