Just a few sprays of a home-made Dr Brewer antifungal nasal spray for nasal mold triggered significant PEM

hb8847

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@seamyb This array of symptoms is ringing a lot of bells for me, I've had so much of the same stuff - post-meal malaise, random heart-rate spikes (including from the shower), tinnitus. And of course the CFS, fatigue, poisoned feeling etc. So I thought I'd share a few things I've learned, in case it helps.

After years of trying to figure out what was going on with my health an immunologist formally diagnosed me with Mast Cell Activation Syndrome (MCAS) earlier this year. He also suspects MCAS is causing most if not all of my symptoms, including my ME/CFS.

Mast Cells are a type of immune cell, and MCAS is a condition whereby those cells are being overly triggered by something. Once triggered these cells release chemicals into the body, such as histamine, which cause an array of symptoms (including chronic fatigue, aching, food sensitivities, gastrointestinal).

There is a section dedicated to MCAS on this site, and I've seen you on that section so I'm sure you possibly know all this anyway, but just in case you didn't or it helps someone else I thought I'd mention it.

The first line of treatment for MCAS is generally to take Mast Cell mediators (like antihistamines) to prevent the Mast Cells from releasing said chemicals. After that the goal is to treat the underlying cause. It's been hypothesised that one common trigger of MCAS is mould, so I got my mycotoxin levels tested earlier this year and, lo and behold, I had very high levels.

I mention this is because it seems like you have a problem with mould/mycotoxins (give the fact you are feeling something from the iodine spray), and it really wouldn't surprise me at all given your symptoms if you also had MCAS, albeit maybe a less intense form. (Some doctors think the incidence of MCAS could be as high as 17% of the population).

There's also currently a line of thought that MCAS could be the root cause of bad Covid reactions and even Long-Covid, and I note you thought you had a spell of Covid last year.

I'm not saying this to worry you, in fact it's very positive you're able to go ahead treating yourself with iodine right away; generally if one's MCAS is bad enough you can't tolerate medications as the reaction would be too intense, indeed that's the position I'm currently in.

And hopefully if the iodine keeps working you'll be able get rid of whatever's triggering the MCAS, if indeed that is what's going on with you, without having to take any Mast Cell medication or anything. But in case it doesn't, or you keep having issues you can't resolve, it might be worth getting it checked out. Food is often a big trigger, histamine is known to be particularly bad for MCAS sufferers, so you may want to keep an eye out for those just in case.
 
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seamyb

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Interesting. I've always suspected i didn't have any issues with MCAS. Although perhaps this is what the breathing issue is? I had suspected the air hunger was just the mold infection (assuming the theory) implicating the airways including the lungs.

But now I'll definitely reconsider MCAS as a possibility if it persists. I don't get vomiting or diarrhoea and I've no skin issues. Nor do I seem sensitive to food or chemicals... having said that, my air hunger flairs when I take b12 or glutathione - which I had a theory about regarding antioxidants and feeding the infection.

But it would be hard to imagine the immune system isn't going wild with a chronic infection.

Thanks for that. And thanks for the iodine tip as well. If it works I'll be sure to call my first born child hb8847.
 

hb8847

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Haha, it's a great name.

my air hunger flairs when I take b12 or glutathione - which I had a theory about regarding antioxidants and feeding the infection.

Yeh B12 and glutathione is a pretty big trigger for me, although it did help to begin with. And I've definitely read that these methylation-promoting supplements can be a trigger for MCAS. My guess is that the body has to slow down methylation to stop it triggering the MCAS, but in doing so it also saps the body of the energy and health that methylation provides, which contributes to the overall feeling of ill health.

I've always suspected i didn't have any issues with MCAS. Although perhaps this is what the breathing issue is? I had suspected the air hunger was just the mold infection (assuming the theory) implicating the airways including the lungs.

Could be. I don't get "air hunger" but I do occasionally get some breathing stuff, it's more like the feeling my airwaves are a bit tighter, it's pretty unpleasant. And if I have a big histamine heavy meal I've no doubt it would develop into full anaphylaxis, I've been on the brink a few times.

FYI I don't get the vomiting or skin stuff either, so I wouldn't rule MCAS out just based on lacking those. In fact for many years I didn't seem to get triggered by anything at all, I just had your classic CFS stuff - fatigue, PEM, POTS, body aches, cognitive stuff.

Indeed, the fact that for me my ME/CFS was probably MCAS all along has made me wonder whether all ME/CFS is in fact MCAS - lots of the things that people link with ME/CFS are MCAS triggers, like gut dysbiosis, mould, B12 stuff, food sensitivities, etc. And apparently MCAS is thought to be massively under-diagnosed amongst the population. But then I'm also wary of me just assuming everything is a hammer because my situation is a nail, kind of thing.. But it wouldn't surprise me.
 
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Booble

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Ever since I caught the virus which later triggered my ME/CFS, I have had chronic feeling of mild inflammation and slightly blocked airways in my nasal cavity. Not much mucus production, but the airways are probably a bit swollen from inflammation, and so the nose feels slightly blocked.

So nothing significant really. No episodes sinusitis or nasal infections requiring antibiotics.

Which makes it all the more surprising that the EDTA biofilm spray could cause such significant PEM and mental tiredness.
I'm an endless blocked nose person as well.
When I tried sinus rinse once it made my nasal passages swell further.
 

seamyb

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I'll definitely keep mcas in mind. I'll have a look at what I'm eating with histamine.

This is being written at 08.20 when I went to bed at 02.40. I feel well. I could get up now. This is pretty damn significant. I should feel awful.

I'm gonna try and go back to sleep though. I'm not mentally ready to try and do a day without a full dose of sleep. Only woken by my fiance getting up.

If this doesn't keep up I'm screwed. I'm properly full of hope.
 

seamyb

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Got another 4 hours or so sleep. Woke up feeling worse than I did earlier. Headache (not a normal symptom for me) and more tired, although not feeling horrible.

But as the day went on my energy has been good. Cleaned the house with no consequences. Again, haven't had to take anything.

My air hunger is brutal today. It's been mostly mild recently, but today it's back with a vengeance. Gonna take a break from the iodine and see whether it gets better or worse. Why the fuck can I never have improvements to fatigue without exacerbation of air hunger!!?
 

seamyb

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@hb8847 I may try and treat for MCAS to see if it has any effect on the air hunger.

I have cetirizine (H1), but can't seem to find any over the counter H2 blockers.

Is there anything else I should take?

Are there any negative or startup effects I should watch out for?
 

hb8847

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@seamyb By all means try whatever you feel like but I'm not a doctor and would feel a bit uncomfortable giving you advice on medication as it might not help. But obviously what you do is up to you, so I'll just relay to you what my doctor has given me.

Basically his plan with my MCAS as far as I'm aware is (1) try to reduce symptoms with mediators, & (2) follow a low histamine diet. The mediators can be supplements or medications, the specific ones he started me out on were Vitamin D (1000iu daily) and antihistamines, one H1 and one H2 (loratidine and famotidine). I was told to take one tablet of each daily and give it a while before any positive effects.

For me it didn't feel like the antihistamines did anything - my MCAS is pretty bad, and Mast Cells can release loads of chemicals so it's probably the case that for me there are other chemicals at play, and I'm about to try some other prescription meds.

But the Vitamin D did seem to help a fair bit, as did avoiding histamine foods, so honestly if I were you I would just give these things a go first as they're safe, they could do a lot on its own and it sounds like if you do have MCAS your symptoms are relatively mild. Maybe if you're really desperate I'd think then about trying the antihistamines but doing so without any doctors' advice could be risky...
 
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seamyb

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Third consecutive day of no fatigue or feeling ill. That's a definite sign.

Air hunger isn't as bad today, but definitely still present. It's only the odd breath I can't get. I'm wondering whether the sever exacerbation yesterday was from exertion (cleaning the house) or a lot of dust in the air (cleaning the house).

Few aches and pains. It's possible I'm having a herx reaction as I'm more sweaty than usual. Definitely wouldn't say I no longer have an illness, but the most debilitating aspect hasn't been present for 3 days. I can't imagine iodine vapour could have any other effects than killing microbes.

Went a bit easier on it yesterday and continuing today at a decreased rate. Don't want the air hunger getting worse.
 

seamyb

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Today's a strange one.

I haven't felt ill but I did get about 15 minutes of feeling pretty anxious and odd. I maybe feel a bit more tired today, but nothing sinister, just a bit less chirpy. Possibly within the realms of a normal person's variation.

My breathing got better as the day went on yesterday and it's fine again today. As the day went on yesterday I increased my use of the iodine. Today, though, I have a bit of tightness in my chest when I breathe in, although I can breathe without issue. It's a new sensation and it's more worrying than it is painful or uncomfortable. Perhaps it's microbes in the airways dying or perhaps I'm damaging my lungs by breathing in iodine, perhaps it's just the stress from the deep laboured breathing of the past few days.

I have back pain. I have a gurgling in my intestines, however BMs are sound. Having taken nothing to control symptoms in as long as I have, I'd expect nasty constipation by now. But nope!

@Hip does the povidone-iodine give off much of a vapour as far as you can tell? Does it have a powerful smell?
 

Hip

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@Hip does the povidone-iodine give off much of a vapour as far as you can tell? Does it have a powerful smell?
Povidone-iodine does not smell as strong as regular Lugol's iodine, probably because the iodine is locked up within the povidone-iodine molecule.

I am not sure if the iodine gas that escapes from an open bottle of Lugol's iodine would be sufficient to have a clinical effect against microbes in the nose.

According to this article:
Iodine vapor is highly toxic and is a severe irritant to the eyes and respiratory tract.

The acute toxicity of iodine by inhalation is high. Exposure may cause severe breathing difficulties, which may be delayed in onset; headache, tightness of the chest, and congestion of the lungs may also result. In

In any case, I believe Dr Brewer's nasal spray protocol takes 3 to 6 months to show effects, and some patient's report feeling worse in the first month due to a temporary Herx effect. See his paper of the nasal spray treatment. So you would not expect to get much benefit initially, and you may actually feel worse for the frist few weeks.
 

hb8847

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did get about 15 minutes of feeling pretty anxious and odd. I maybe feel a bit more tired today...
For what it's worth, mood symptoms like anxiety & depression, and fatigue, have been very common Herx symptoms for me, and MCAS too (the two are pretty indistinguishable for me).

Today, though, I have a bit of tightness in my chest when I breathe in, although I can breathe without issue. It's a new sensation and it's more worrying than it is painful or uncomfortable. Perhaps it's microbes in the airways dying or perhaps I'm damaging my lungs by breathing in iodine, perhaps it's just the stress from the deep laboured breathing of the past few days.
Another possibility is that it could be unrelated to your lungs and could again be just Herx symptoms or MCAS. Mast Cells release a lot of chemicals like histamine which can affect your breathing, I've had a lot of breathing related symptoms before which I'm pretty sure are unrelated to my lungs, and more to do with my immune system reacting. Just a thought.
 

hb8847

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I am not sure if the iodine gas that escapes from an open bottle of Lugol's iodine would be sufficient to have a clinical effect against microbes in the nose.

According to this article:
Hmmm that doesn't sound particularly positive. Do you think Myhill is wrong to be using Lugol's iodine then, do you think povidone-iodine is the better option?
 

Hip

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Do you think Myhill is wrong to be using Lugol's iodine then, do you think povidone-iodine is the better option?
Looks like I did not read the Myhill article properly: I assumed she was using diluted Lugol's iodine solution in the nose as a nasal spray, but reading the article more closely, I see she says to inhale iodine gas by placing a few drops of Lugol's iodine into a salt pipe.

Just did a quick Google to see if anyone else has used iodine gas in this sort of manner to treat microbial infections, but did not find anything.

I guess it could work, but I could not find any studies on using iodine gas like this.
 

junkcrap50

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You probably need take toxin binders such as activated charcoal/zeolite/clays, cholestyramine, chlorella, glucomannon, fruit pectin, etc. while you are doing the intranasal treatment. Make sure the binder don't constipate you. If you're having herx symptoms, I would consider supporting the detoxification pathways too: NAC/glutathione, Lipoic acidm milk thistle (liver), bitters or other bile support,
 

seamyb

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I am not sure if the iodine gas that escapes from an open bottle of Lugol's iodine would be sufficient to have a clinical effect against microbes in the nose.
Well, I can tell you that it's had a highly significant effect on my illness. If it's not killing microbes, then I don't know what it's doing. There seems to be conflicting information about the length of time it takes for Brewer's protocol to take effect. In the video I posted of his lecture, he says somebody whose illness had been ongoing for years had complete remission of symptoms after 3 weeks. I'm sure this is what he said.

I can't imagine the fumes from a single drop of lugol's could cause the severe irritation talked about in that safety leaflet? The breathing issues I had are the exact same I've been having all year. It's only now that my chest is sore I'm wondering if I've perhaps been overdoing it. I'll cut back for a while and stick to a single drop (about 1/120 th of a ml).
 

Lieselotte

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I listened to a podcast with Dr. Mercola and Dr. David Brownstein where Dr. Brownstein was touting the use of nebulized hydrogen peroxide for COVID. But he also used iodine (Lugol's) in the nebulizer mixture.

Here is a run down of that episode: https://cohlife.org/wp-content/uplo...xide-Helps-Against-Respiratory-Infections.pdf
So it looks like someone has been using nebulized iodine... I think this would be easier than the salt pipe method where you have to inhale and then try and exhale it through your nose to get it to your sinuses.

Like Hip, I've had a stuffy nose for years now - I probably only have 50% nasal intake capacity at any one time.
I recently went to a doctor that did muscle testing on me. The muscle testing showed fungus in my nasal area (probably candida as I always have positive IgM for candida). She said that for nasal mold colonization she has people treat with nebulized amphotericin or diflucan (maybe she said nystatin, can't remember).

Also, she told me about this company which will culture your nasal swab to see what's going on:
https://dlmcharlie.wixsite.com/dlmmicro
I requested a test kit so we'll see....thoughts anyone?

I might look to try the iodine nebulization. Why might Lugol's be OK in this case? And I do have hypothyroidism, so not sure if that is a contradiction for doing this? I'm planning on discussing the antifungal nebulization with my PCP in a month. However, if iodine works I think that's a safer route.
 

Hip

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There seems to be conflicting information about the length of time it takes for Brewer's protocol to take effect. In the video I posted of his lecture, he says somebody whose illness had been ongoing for years had complete remission of symptoms after 3 weeks.
I found that, it is at timecode 57:09 of the video. Dr Brewer said he had a patient with a chronic illness for 10 years (he did not specify which illness) who was cured in 3 weeks of taking voriconazole. But I believe that was oral voriconazole.

He says that the triazole drugs voriconazole, itraconazole and posaconazole work against molds. At one point I took itraconazole 200 mg daily for two months, but noticed no benefit.

Interestingly at timecode 54:00 Dr Brewer says fluconazole and nystatin have absolutely no effect against molds. These drugs work for yeast, but not mold.



Dr Shoemaker believes the issue in mold illness is not nasal mold, but a nasal Staphylococcus infection he called MARCoNS. So I guess a treatment like iodine which may be capable of targeting that as well as mold might be preferable.
 

hb8847

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He says that the triazole drugs voriconazole, itraconazole and posaconazole work against molds. At one point I took itraconazole 200 mg daily for two months, but noticed no benefit.
Same, I took Itraconozole for a month, noticed nothing. And have since tested high for mycotoxins, so I know I have mould and it didn't get rid of it.
 
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seamyb

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If this stuff is avoiding the immune system, I fail to see how oral anything will help.

Iodine appeals to me because I'd heard of all the MARCoNS and mold and was also toying with the idea of persistent covid. So, kill three microbes with the one chemical, as the old saying goes.

Regarding the safety of iodine vapour and the respiratory tract. It's definitely something I should take into consideration as I go. But the factsheets around it are likely based around chemists using elemental iodine in significant quantities, which vapourises through sublimation. A drop or two of a 15% solution surely does not compare to these quantities. That's what I hope anyway!