Multiple binders

[seamyb]

Yep, easy come easy go. Today has been shite.

 

[hb8847]

My Herxes are f***ing weird. I take the binders fine with seemingly no bother at all, and then suddenly it hits after about 10 days, with no warning. And then it just never goes away, I'm like a week in now, bashing the antioxidants too to no avail. And you just have to vaguely hope it's all been worth it.

 

[hapl808]

And you just have to vaguely hope it's all been worth it.

This is the most frustrating part to me. My system is so delicate that I never know if I'm crashing because I expended too much energy preparing my lunch or because of a supplement I took a week ago or because of the pollen count or whatever. Exhausting to track it all, and not really sure it does much good.

 

[hb8847]

Exhausting to track it all, and not really sure it does much good.

This whole thing is so so exhausting

 

[Shanti1]

My last dose of bentonite was 3 days ago and I may or may not have reacted to it because I impatiently also tried a nasal spray of colloidal silver at the same time and then felt poorly for the rest of the day.

Anyhow, I am taking a break from the binders as I decided to move ahead with trying desmopressin. Although this is out of order on the Shoemaker protocol, I don't have a known mold exposure, just lab test markers that show some consistency with CIRS. I am actually reacting will to the desmopressin (I'll post about that on another thread) and plan to come back to the binders once I get my desmopressin dose right.

 

[seamyb]

I'm somewhat better again today. Due another dose tonight. It's a literal crumb I'm taking.

Glutathione seems to be working ok again. I think there's a weird dynamic going on whereby stopping binders for prolonged periods doesn't necessarily bring about improvement to the detox/herx. And if you think about it, you've stopped flushing the toxins from the gut so they build up again and block the detox of stuff brought out of cells or jiggled back into the blood. Low, slow and steady seems to make a lot of sense.

Glutathione seems to make me feel worse in these periods where I've had to stop because of taking too much. And again I can make sense out of it in my working model - glutathione ejects stuff from the cells but because I've stopped the flow out of the gut, there's nowhere for them to go but circulate in the blood and entero-hepatic circulation. Like most things in biology, it's likely all about relative concentrations and diffusion.

Nathan says it can take a month for a bad reaction to calm down of its own accord. I wonder whether tiny doses with consistent gaps would benefit instead - just to keep that flow going. Although it's very difficult to take any amount of something which makes you feel so bad.

 

[GlassCannonLife]

My last dose of bentonite was 3 days ago and I may or may not have reacted to it because I impatiently also tried a nasal spray of colloidal silver at the same time and then felt poorly for the rest of the day.

Anyhow, I am taking a break from the binders as I decided to move ahead with trying desmopressin. Although this is out of order on the Shoemaker protocol, I don't have a known mold exposure, just lab test markers that show some consistency with CIRS. I am actually reacting will to the desmopressin (I'll post about that on another thread) and plan to come back to the binders once I get my desmopressin dose right.

Did you do the test panel he recommends, C3a, C4a, TGF-B1, etc?

 

[Shanti1]

Did you do the test panel he recommends, C3a, C4a, TGF-B1, etc?

I haven't done all of them but have done MSH, ADH/Osmolality, TGF-B1, and MMP-9.
MSH and TGF-B1 were outside of Shoemaker's range (but in Labcorps range). ADH was below the detection limit despite high-end osmolality. These were done in 2019 so I need to do a repeat on them and see if I can get the additional markers (VEGF, C3a, C4a, VIP). I did repeat the ADH/Osmolality in Oct before starting desmopressin and it was the same as on my first test (I also dring 5-8 L of water per day).

 

[hb8847]

I think there's a weird dynamic going on whereby stopping binders for prolonged periods doesn't necessarily bring about improvement to the detox/herx. And if you think about it, you've stopped flushing the toxins from the gut so they build up again and block the detox of stuff brought out of cells or jiggled back into the blood.

I understand that removal of toxins from the gut can trigger the release of more into the blood, but wouldn't this mean there are fewer overall toxins in the body, as there are less toxins in the cells even if the blood is full to the max? Which would suggest that once a Herx has cleared you should notice some improvement?

Glutathione seems to make me feel worse in these periods where I've had to stop because of taking too much. And again I can make sense out of it in my working model - glutathione ejects stuff from the cells but because I've stopped the flow out of the gut, there's nowhere for them to go but circulate in the blood and entero-hepatic circulation. Like most things in biology, it's likely all about relative concentrations and diffusion.

This is interesting, I wasn't aware this was how glutathione works. Oddly for me it seems to help much more when I'm going through a Herx; when I'm not I can't tolerate it at all, so I assumed it was some sort of Herx-clearer, like it got rid of cytokines or whatever. But from what you're saying it triggers the cells to release even more toxins into the bloodstream. But then surely this would worsen my Herx not help it? All very weird. Maybe it's multitasking and the extra release of toxins is mitigated by the positive effects it has on my Herx reactions.

I finally seem to be coming towards the end of my current Herx, and I think I'm going to give it a few days before re-adding binders to see where I'm at health-wise. And when I do it'll be much more spread out like you're all doing, one small dose every 2 or 3 days. I'm still cautiously optimistic it's helping though.

 

[seamyb]

wouldn't this mean there are fewer overall toxins in the body, as there are less toxins in the cells even if the blood is full to the max? Which would suggest that once a Herx has cleared you should notice some improvement?

Yes, in my unverified and oversimplified model of what's going on, it would mean there a fewer toxins overall in the body. But what causes symptoms? This I don't know. Is a toxin that has been in a cell for months being mitigated by the cell somehow? Does the release of that toxin into the blood then disturb the mitigations your body has been making for that toxin, allowing the toxin to begin causing symptoms? Do some toxins end up in new cells? This would upset the homeostasis your body had built around the presence of toxins.

Also the rate of excretion through binding may be a lot lower than the total amount of toxins. So while you're doing good overall, it may require a long time of doing so before you notice any improvement - because each excretion just upsets the homeostasis even further until there are so few toxins that the effect is minimal.

It could be that less toxins in the gut mean that more can be released into the gut, lowering the blood concentration. The lower blood concentration means more can diffuse out of cells, increasing the blood concentration again. Perhaps that blood concentration can overshoot its previous level? And if you've stopped clearing the gut because of a bad reaction there's nowhere for the extra toxins in the blood to go apart from back into other cells - hence new symptoms. Then the cells have to mitigate and find a new homeostasis with these new toxins.

It's highly speculative. It assumes the body regulates the maximum amount of toxins in the blood. It also assumes diffusion is an important factor. Both of which I've no idea whether they are true.

But then surely this would worsen my Herx not help it? All very weird. Maybe it's multitasking and the extra release of toxins is mitigated by the positive effects it has on my Herx reactions.

Glutathione does a shit load of jobs. It neutralises Reactive Oxygen Species (ROS) (and I believe this to be the mechanism behind making me feel better), it's involved in phase II liver conjugation, it transports toxins and heavy metals out of cells as well as a whole host of other things. Perhaps the symptoms of your herx are caused by oxidative stress (known to be an issue with mycotoxins). Perhaps the blood is highly concentrated with toxins, so the the glutathione can't mobilise any more, but it can reduce oxidative stress. Perhaps with me, because I notice bad effects from it about a week or so after stopping binders, it's because the toxins are being stored in the cells and adding glutathione just undoes some of this and upsets the body's attempt at getting to homeostasis.

Symptoms are likely caused by a number of different things, not just oxidative stress. So this is why we notice improvement for a while with something which then poops out. Is it lots of toxins in the blood which cause symptoms A, B and C? Lots of toxins in muscle cells which cause muscle pain and fatigue? Lots of toxin in the brain which cause the brain fog and horrible symptoms associated with cognition? If my theory is somewhere close to correct, then the interplay of symptoms as we do this should be as much of a mind fuck as we observe them to be.

I finally seem to be coming towards the end of my current Herx

Ah great! I seem to be doing ok with small amounts of chlorella every 3 days. I would aim for something similar. The day after a small dose I seem to actually be somewhat improved. Maybe my blood concentration has gone down and by day 2 the toxins start coming out of cells and I feel a bit worse again. Then it's rinse and repeat. But so far I've not had it too bad and usually feel ok to take another dose by day 3. The important thing to note is that the tiny doses definitely have a significant effect. Time and patience I think are warranted. Gonna keep at this pace for a few weeks and reevaluate.

Good luck and, of course, keep us posted.

 

[ljimbo423]

Yes, in my unverified and oversimplified model of what's going on, it would mean there a fewer toxins overall in the body. But what causes symptoms?

Toxins are also attacked by the immune system, as foreign bodies. So toxins would stimulate the immune system. I feel very confident that immune system stimulation is what's causing my symptoms.

I feel like I have cold or flu-like symptoms almost constantly, to some degree. When I have a flare, it feels exactly like the flu, BUT, it never lasts more than 24 hours or so.

With the flu-like symptoms I get in a flare, I get lymph node swelling under my jaw, which is a clear sign of immune system activation. At worst, in a flare, I'll feel lingering symptoms for up to 48 hours but no longer than that. So it's not a cold or a flu virus.

The immune system protects the body from possibly harmful substances by recognizing and responding to antigens. Antigens are substances (usually proteins) on the surface of cells, viruses, fungi, or bacteria.

Nonliving substances such as toxins, chemicals, drugs, and foreign particles (such as a splinter) can also be antigens. The immune system recognizes and destroys, or tries to destroy, substances that contain antigens.

https://medlineplus.gov/ency/article/000821.htm

 

[seamyb]

So toxins would stimulate the immune system

Yes this is an interesting point. I don't get cold or flu symptoms, but I do get the tender lymph nodes around the neck and jaw. Especially when I take too much of a binder.

This complicates things. Cumin makes me feel better. It's both an antioxidant and a cytokine suppressor. So I can't be sure what is causing my symptoms. Although the immune system uses oxidative species for certain tasks, so there may be overlap. B12 is both an antioxidant and cytokine suppressor. Glutathione is an antioxidant, not sure about cytokines.

So maybe my own symptoms are caused by the immune system too. But they're so complex I would bet that they have multiple causes - immune system, oxidative stress, mitochondrial toxicity.

 

[ljimbo423]

So maybe my own symptoms are caused by the immune system too. But they're so complex I would bet that they have multiple causes - immune system, oxidative stress, mitochondrial toxicity.

I agree. The immune system activation (which causes a lot of oxidative stress), oxidative stress from dysfunctional mitochondria, toxins from the gut, etc. All work together I think, to cause symptoms, and they "feed" each other.

Toxins stimulate the immune system, causing oxidative stress. Oxidative stress causes mitochondrial dysfunction, which causes more oxidative stress.

The oxidative stress and inflammation from it, disrupts the gut lining, causing leaky gut, more oxidative stress, immune system activation and inflammation and the cycle continues. This is a very simple view of what I'm trying to say, but I hope it makes sense.

Maybe creating some kind of self-perpetuating cycle. If that cycle can be broken or interrupted long enough, maybe our bodies could heal and our health improve.

 

[hb8847]

So toxins would stimulate the immune system. I feel very confident that immune system stimulation is what's causing my symptoms.

I feel like I have cold or flu-like symptoms almost constantly, to some degree.

Yes I am convinced this is what's going on with me.

Some sort of toxin triggers my immune system and this causes my symptoms, and I am stuck in the self-perpetuating cycle you talk about, whereby the toxins are low enough in number that it doesn't kill me or make me actively worse, but still high enough that my body can't clear them and recover.

In addition, the toxins have compromised my body's natural detoxing ability in some way, such as by triggering intestinal permeability or bacterial dysbiosis, and this also prevents recovery. So I'm stuck in this permanent flu-like state.

To my mind, the purpose of binders (if they work) would be to "manually" remove the toxins, assuming the body cannot do so on its own. And once those toxins get below a certain level the body can get itself out of the cycle and start to heal itself, which can maybe then be helped along along by treatments which target whatever is producing the toxins (mould, gut bacteria, lyme).

And to me the presence of a Herx reaction would seem to prove both the binders' efficacy, and that one's ME/CFS is in fact being caused by a toxin overload.

If the body were already removing toxins efficiently then binders would surely have no extra effect - they would merely bind to whatever toxins were already on the way out of the body; the displacement of some of those toxins back into the bloodstream along the way would do nothing.

 

[ljimbo423]

To my mind, the purpose of binders (if they work) would be to "manually" remove the toxins, assuming the body cannot do so on its own. And once those toxins get below a certain level the body can get itself out of the cycle and start to heal itself, which can maybe then be helped along along by treatments which target whatever is producing the toxins (mould, gut bacteria, lyme).

And to me the presence of a Herx reaction would seem to prove both the binders' efficacy, and that one's ME/CFS is in fact being caused by a toxin overload.

If the body were already removing toxins efficiently then binders would surely have no extra effect - they would merely bind to whatever toxins were already on the way out of the body; the displacement of some of those toxins back into the bloodstream along the way would do nothing.

I agree. Well said!

 

[seamyb]

Was expecting a few waves of horribleness today (day 2 from last dose of chlorella) but it has not come. Needing less sleep, no real symptoms apart from like an ambient background fatigue which just about lets me know I'm sick. Pretty big improvements to my sickness score lately.

 

[hb8847]

Was expecting a few waves of horribleness today (day 2 from last dose of chlorella) but it has not come. Needing less sleep, no real symptoms apart from like an ambient background fatigue which just about lets me know I'm sick. Pretty big improvements to my sickness score lately.

Wow, good to hear. To what extent do you attribute that to the binders?

 

[seamyb]

Wow, good to hear. To what extent do you attribute that to the binders?

To the fullest extent. For a long time I've been getting waves of overwhelming sickness at least once per day. This has been since I started herxing on essential oils etc and then the binders when I was taking too much. The number of days of relief I've experienced since starting chlorella in very small amounts is statistically significant.

 

[GlassCannonLife]

To the fullest extent. For a long time I've been getting waves of overwhelming sickness at least once per day. This has been since I started herxing on essential oils etc and then the binders when I was taking too much. The number of days of relief I've experienced since starting chlorella in very small amounts is statistically significant.

Would you say you've moved up the functional scale by a point (or more)? Can you please give us a rough estimate of before and after using one of the scales? I hope the progress continues!

 

[seamyb]

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.