“You have a disease mimicking Gulf war Syndrome”.

[charlie]

@charlie How quickly does niacin start moving heavy metals out? I’ve never heard of it being a chelator before.

From my experience almost immediately.

 

[pubh12]

I’m trying niacin powder from bulk supplements. The first time I took some I clearly took too much and had an extreme flush reaction. The pressure in my head went insane - hot everywhere insane heart rate , breathing got much more difficult and this lasted a couple of hours and took place ten mins after taking to. I don’t know the dose but it was probably way too much since I didn’t measure.

Anyway - yesterday I took a pinch of it in my water (way less than I did that first time ) and barely felt anything. 24 hours later I’m expericning the same head pressure and burning sensations in my mouth. I feel super awful but I’m not sure I can chalk it up to niacin since it occurred so much later I’m at the ER just incase. @charlie I know you have talked about avoiding niacin if you are extremely toxic and I know I am probably mercury toxic or something else. But have you ever heard of the flush symptoms occuring that long after taking Niacin and lasting five hours and counting? This couldn’t be the niacin I took at 11 am yesterday even though symptoms feel very similar?

 

[charlie]

Anyway - yesterday I took a pinch of it in my water (way less than I did that first time ) and barely felt anything. 24 hours later I’m expericning the same head pressure and burning sensations in my mouth. I feel super awful but I’m not sure I can chalk it up to niacin since it occurred so much later I’m at the ER just incase. @charlie I know you have talked about avoiding niacin if you are extremely toxic and I know I am probably mercury toxic or something else. But have you ever heard of the flush symptoms occuring that long after taking Niacin and lasting five hours and counting? This couldn’t be the niacin I took at 11 am yesterday even though symptoms feel very similar?

Yes I have heard of people flushing and having symptoms of flushing the next day.

 

[pubh12]

Yes I have heard of people flushing and having symptoms of flushing the next day.

It’s been over 48 hours and I’m still getting flushing and burning sensations everytime I move my head and arms. It’s very odd. Ct scan was clean. Im starting to wonder if the niacin wasn’t eliminated or is binding to something to prevent it from being excreted and keeps causing a flush.

Very scary situation I’m in.

 

[charlie]

It’s been over 48 hours and I’m still getting flushing and burning sensations everytime I move my head and arms. It’s very odd. Ct scan was clean. Im starting to wonder if the niacin wasn’t eliminated or is binding to something to prevent it from being excreted and keeps causing a flush.

Very scary situation I’m in.

Sounds like you moved a bunch of metal and are dealing with the aftermath. How much did you take? Dr. Garrett Smith advises people to start out at 25mg. I usually advise my family members to start around 50 to 60mg.

 

[pubh12]

Sounds like you moved a bunch of metal and are dealing with the aftermath. How much did you take? Dr. Garrett Smith advises people to start out at 25mg. I usually advise my family members to start around 50 to 60mg.

More than that I’m sure. Probably closer to 4-500mg which the package says is a normal dose

 

[charlie]

More than that I’m sure. Probably closer to 4-500mg which the package says is a normal dose

That is a pretty hefty dose to start with.

 

[pubh12]

@InChristAlone

Hey could I get your advice on something

So I’ve been having really bad breathing issues ever since I started taking a supplement called Huperzine an and alpha gpc. Huperzine inhibits acetylcholinesterase, which I’ve seen you talk about on here. I didn’t take much before I had a cholinergic crisis type episode and now my breathing has seemingly been permanently altered. 15 months of this hell. My breathing issues consist of 24/7 asthma and wheezing symptoms , but also respiraotry muscle dysfunction , fasciculations etc.

It’s become an impossible challenge trying to figure this out.

This breathing issue has been 15 months but my issues go back six years when I developed POTS, MCAS etc , issues seen in long covid but before Long covid ever existed.

Hanging around this forum , there’s an idea that you subscribe to and that has been immensely intriguing to me and that’s the acute sickness is actually a form of detox and is your body’s way of trying to purge it.

When I read about that light bulbs started going off in my head. I have , in six years, not gotten sick until like 5 months ago on my second suppose covid infection and even that was rather mild I almost don’t want to count it . I just never get sick. And I also never sweat. I lost the ability to do both things at the same time as well as develop a ton of chronic illnesses

This idea that I haven’t been detoxing the whole time could mean a couple of things.. In my year long research into acetylcholinesterase inhibiton i keep reading how much heavy metals inhibit these enzymes. They also inhibit MAOA and I have majorly high serotonin (not carcinoid syndrome)

Could it simply be I have not been able to detox all this toxic material out of me and it has cultivated to inhibiton of acetylcholinesterase causing a perpetual asthma type situation ? Atrovent does not help but without Acetylcholinesterase I doubt it would. When I took those supplements that are reversible inhibitors of AchE , something prevented them from returning to normal fucntion. Perhaps heavy metals that I’ve been accumulating for six years.

I’ve been taking Niacin flush around 200-400mg a day. I’ll have to move up soon since I don’t flush anymore. But I still have not triggered a detox event. I don’t believe I’ll be able to remove these toxins without one major detox event if I have six years worth of this piled up. But so far I remain unable to have another acute detox. Or sweat anything out if metals actually do come out that way. I don’t know what else to add. I need more sun , I’m fair skinned and burn easily and do not get near enough of it. Could that help?

Do you think this idea has merit or am potentially chasing false hope here?

 

[youngsinatra]

Yes, metals can modulate cholinesterase in a negative way.

Do you have good bile flow? Any liver stagnation signs/symptoms?

 

[youngsinatra]

List every supplement you are currently taking (and approximate dosage) and your main foods you are eating, please.

 

[pubh12]

List every supplement you are currently taking (and approximate dosage) and your main foods you are eating, please.

I currently take 2-4 2nd gen antihistamines a day to help MCAS

I take a beta blocker twice a day for POTAS

Right now I’m trying flush Niacin and NAC, and then I try this and that but never for long. I’ve tried high dose thismine and b12 shots , magnesium , I try to get enough potassium. I’ll take riboflavin too.

My diet isn’t good and Im so unwell I take what I get from whoseveres making it. The vast majority is muscle meat. But I snack on things like chocolate and potatoes chips. I avoid dairy , don’t eat much fruit and vegetables at all and no eggs or organ meat.

I don’t know what to look for when it comes to liver or bile issues. I’m often having diahhrea or severe constipation. I can often go days without moving my bowels. I’ll every now and again have blood in my stool but colonoscopy always normal.

 

[youngsinatra]

I currently take 2-4 2nd gen antihistamines a day to help MCAS

I take a beta blocker twice a day for POTAS

Right now I’m trying flush Niacin and NAC, and then I try this and that but never for long. I’ve tried high dose thismine and b12 shots , magnesium , I try to get enough potassium. I’ll take riboflavin too.

My diet isn’t good and Im so unwell I take what I get from whoseveres making it. The vast majority is muscle meat. But I snack on things like chocolate and potatoes chips. I avoid dairy , don’t eat much fruit and vegetables at all and no eggs or organ meat.

I don’t know what to look for when it comes to liver or bile issues. I’m often having diahhrea or severe constipation. I can often go days without moving my bowels. I’ll every now and again have blood in my stool but colonoscopy always normal.

It can be a sign of a stagnant liver/gallbladder.

Signs of good bile flow:
brown, sticky, sinking, well-formed stool, good tolerance to dietary fats, 1-3 bowel movements a day, blood lipids like total cholesterol in the healthy range, low liver enzyme readings.

Signs of stagnant bile flow („cholestasis“)
pale or yellow stool color, loose stool, undigested food in stool, fat malabsorption, upper right quadrant abdominal tension, constipation, sometimes mixed with diarrhea, SIBO, nonspecific itching, yellow tint of the skin, dark urine and irritability.

 

[youngsinatra]

I recommend you to look into Dr. Kuklinski‘s work. He has written a lot on nitrosative stress and how it inhibits mitochondrial respiration. He recommends B12 for that — always combined with biotin and folate for that. Also thinks highly of CoQ10, alpha lipoic acid, B1, B2, B3, B5 for optimizing pyruvate dehydrogenase, TCA and electron transport chain.

He has a lot of successful case reports from his clients with CFS, diabetes, even some cancer cases, cardiovascular issues, asthma, migraines, IBS etc etc

He recommends extensive lab testing and very rarely muscle biopsy.

He has only written in german but you may be able to translate it:

https://www.dr-kuklinski.info/wp-content/uploads/2019/08/kuklinski-differentialdiagnostik-und-therapie-der-mitochondriopathien-2018.pdf

 

[pubh12]

I recommend you to look into Dr. Kuklinski‘s work. He has written a lot on nitrosative stress and how it inhibits mitochondrial respiration. He recommends B12 for that — always combined with biotin and folate for that. Also thinks highly of CoQ10, alpha lipoic acid, B1, B2, B3, B5 for optimizing pyruvate dehydrogenase, TCA and electron transport chain.

He has a lot of successful case reports from his clients with CFS, diabetes, even some cancer cases, cardiovascular issues, asthma, migraines, IBS etc etc

He recommends extensive lab testing and very rarely muscle biopsy.

He has only written in german but you may be able to translate it:

https://www.dr-kuklinski.info/wp-content/uploads/2019/08/kuklinski-differentialdiagnostik-und-therapie-der-mitochondriopathien-2018.pdf

Thanks I’ll look into him

There’s one thing I need to fully understand though and that’s if the possibility even exists that the acetylcholinesterase can be dysfunctional as long as it has been for me simply by being “poisoned” with heavy metals and whatever else I can’t detox. So when new acetylcholinesterase is synthesized it’s also almost immediately rendered useless OR it’s not being synthesized in the first place. Whatever’s happening would be inhibiting this enzyme well over 15 months now. As long as that seems like it’s reasonably possible with bad heavy metal toxicity then I’d certainly continue chasing the acetylcholine excess causing chronic wheezing theory but I’m still not entirely convinced that could happen as it’s playing out currently. Like I said earlier , this all started on Acetylcholinesterase inhibitor Huperzine and just didn’t revert back to normal. It’s the best theory I have going.

 

[youngsinatra]

Thanks I’ll look into him

There’s one thing I need to fully understand though and that’s if the possibility even exists that the acetylcholinesterase can be dysfunctional as long as it has been for me simply by being “poisoned” with heavy metals and whatever else I can’t detox. So when new acetylcholinesterase is synthesized it’s also almost immediately rendered useless OR it’s not being synthesized in the first place. Whatever’s happening would be inhibiting this enzyme well over 15 months now. As long as that seems like it’s reasonably possible with bad heavy metal toxicity then I’d certainly continue chasing the acetylcholine excess causing chronic wheezing theory but I’m still not entirely convinced that could happen as it’s playing out currently. Like I said earlier , this all started on Acetylcholinesterase inhibitor Huperzine and just didn’t revert back to normal. It’s the best theory I have going.

Do anticholinergics like Benadryl improve your symptoms?

 

[pubh12]

Do anticholinergics like Benadryl improve your symptoms?

Not in any meaningful way with the breathing. Sometimes I feel like it’s easier to expand. The way I understand it though is that Benadryl will only block receptors that aren’t already occupied by acetylcholine, so if the AchE isn’t functioning then it won’t affect it any meaningful way. I could be wrong about that.

 

[Tidal]

Your hypercholinergic symptoms are similar to mine except I believe Myo inositol was the culprit in my case. Although I did trial galantamime for 2 days later on which caused myoclonus to a ridiculous extent.


I have hypersalivation, muscle twitching/spasms and I also have some weird form of GERD that is likely related to acetylcholine. None of this lets up at all and I am literally swallowing saliva non stop.

Like you I have POTS and dysautonomia but this was caused by taking nortriptyline.

I've also been looking for ways to increase acetylcholinesterase but there doesn't seem to be many options unfortunately.

Easy to increase but difficult to reduce for some reason

 

[pubh12]

Your hypercholinergic symptoms are similar to mine except I believe Myo inositol was the culprit in my case. Although I did trial galantamime for 2 days later on which caused myoclonus to a ridiculous extent.


I have hypersalivation, muscle twitching/spasms and I also have some weird form of GERD that is likely related to acetylcholine. None of this lets up at all and I am literally swallowing saliva non stop.

Like you I have POTS and dysautonomia but this was caused by taking nortriptyline.

I've also been looking for ways to increase acetylcholinesterase but there doesn't seem to be many options unfortunately.

Easy to increase but difficult to reduce for some reason

I’m trying forskolin but it hasn’t been hugely beneficial yet

 

[pubh12]

Right now I’m currently doing flush niacin , occasionally nac and trying to force myself to sweat but having no luck.

I was just thinking back that I was on Fludrocortisone when my breathing weakness and then 24:7 wheezing started. Some of my symptoms certainly could be explained by awful potassium levels. My blood levels are normal but that doesn’t convince me of anything. Especially since I’m on beta blockers which apparently can block potassium from being absorbed into cells.

I’m wondering if it’s possible a combo of my beta blockers and Fludrocortisone some serious cellular potassium deficiency 15 months ago and my continued use of the beta blockers meant I didn’t replenish cellular potassium. It could explain the fasciculations , maybe it could cause severe bronchoconstriction.

I have a hell of a time when I stop the beta blockers becasue of POTS. But I’m starting to wonder if I need to stop them and try to raise cellular potassium levels. I wish I could do potsssium topically but the eveidence this works seems spotty at best. I’ve tried around 4000mg of potassium a day for a couple days but felt very weak and low blood pressure when I did it. But of course I was still on beta blockers so I wonder if it just collected in my blood.

No idea if beta blockers can really prevent the potassium from getting into my cells this much but I guess I’ll add it to the list of things to try again.

If anyone has any suggestions on how to get potassium cellular levels up I would like to hear it.

 

[Peater]

I've seen numerous references to POTS being simple thiamine deficiency. It interacts with potassium too so possibly best to take both.