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

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@GlassCannonLife going alright, but no major change here.
I'm only doing once per day, and have missed a couple days. I even bought some kimchi to take some of the kimchi juice and put it in my nostrils on a cotton swab. (I love kimchi, so I thought it as a bonus to be able to eat the stuff in addition to putting it up my nose!)

I watched a mold and mycotoxins summit online. Only some of the presenters were asked about sinus mold, so not too helpful on that front. And there seemed to be some consensus about MARCoNS being super difficult to get rid of.
Here are the sinus treatments that were discussed for nasal molds:
  • Amphotericin B or Nystatin nasal sprays
  • kimchi juice or L. Sakei
  • ozone (very dangerous to breathe into your lungs: take a syringe of less concentrated ozone, hold your breath and squirt it in one nostril. Then exhale, breathing all the ozone out. repeat on other nostril)
  • Nebulized H2O2 or Iodine
  • Salt water Iodine rinse like this: https://daveasprey.com/chronic-sinus-problems/
Wow, kimchi juice! That's cool. Very interesting stuff, thanks for taking the time to write out that list.
 

seamyb

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How are you all going with the iodine nasal spray treatments? @Hip @Lieselotte @seamyb @hb8847 (not sure if I missed someone, please feel free to share if you are trying this).

I'm going to get my house mould tested tomorrow, looking forward to finally ruling this out/diagnosing a large contributor.
I'm doing pretty bad at the minute, which might be a good sign.

I had kind of leveled out a bit just taking the iodine. My breathing issues got better though as time went on. I would have expected that without all the stuff I had taken for symptoms that I would be worse. I really think the iodine was responsible for improvements. However, the very stark remission of fatigue and feeling ill I had early on hasn't quite come back yet.

I have now made my own EDTA nasal spray and have been on it about 3 days. Like @Hip, I've had a very profound reaction. I feel like a dog poo. I had a very weird and new symptom - colourful swirls appeared in the corner of my eye, very much like a hallucination. So I took a break today from the EDTA and will continue tomorrow. There has to be something here for the reactions I'm having.

Just be caareful, no mold in your house is a very good thing but does not mean you don't have any in your sinuses!
 
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I'm doing pretty bad at the minute, which might be a good sign.

I had kind of leveled out a bit just taking the iodine. My breathing issues got better though as time went on. I would have expected that without all the stuff I had taken for symptoms that I would be worse. I really think the iodine was responsible for improvements. However, the very stark remission of fatigue and feeling ill I had early on hasn't quite come back yet.

I have now made my own EDTA nasal spray and have been on it about 3 days. Like @Hip, I've had a very profound reaction. I feel like a dog poo. I had a very weird and new symptom - colourful swirls appeared in the corner of my eye, very much like a hallucination. So I took a break today from the EDTA and will continue tomorrow. There has to be something here for the reactions I'm having.

Just be caareful, no mold in your house is a very good thing but does not mean you don't have any in your sinuses!
Wow those reactions sound crazy.. Are you (or @Hip) not worried that EDTA could be chelating heavy metals and redistributing them into other areas eg your brain..? I heard that was a risk with EDTA chelation and I assume some of it would be getting into your circulation through your sinus membranes right?

I recently did a number of days where I did a saline nose rinse with a teaspoon of baby shampoo (biofilm buster / antimicrobial) mixed in, followed by a normal saline rinse to get it all out. It definitely helped me get over the end of a bad cold more quickly - hard to say if it improved my fatigue directly or if it was just clearing the cold but it seemed to give me a little mild boost. I still want to try the iodine.

Definitely hear your point re the mould - I should get the brief raw data early next week and then a full report following that. At least if the house is clear I can go about testing treatments on myself without any concerns that I am still being ongoingly exposed.

Hope you feel better soon!
 

seamyb

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Are you (or @Hip) not worried that EDTA could be chelating heavy metals and redistributing them into other areas eg your brain..? I heard that was a risk with EDTA chelation and I assume some of it would be getting into your circulation through your sinus membranes right?
A single squirt in each nostril of a 0.5% (actually, mine is less because it is dihydrate) solution each day for three days? Do you think this could chelate enough heavy metals to make me sick, firstly, and if so do you think somebody could have enough heavy metals up their nose to cause it? Genuine question, I've no idea.

I might try other biofilm busters. The soap perhaps. Why did you rinse it all out?
 
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A single squirt in each nostril of a 0.5% (actually, mine is less because it is dihydrate) solution each day for three days? Do you think this could chelate enough heavy metals to make me sick, firstly, and if so do you think somebody could have enough heavy metals up their nose to cause it? Genuine question, I've no idea.

I might try other biofilm busters. The soap perhaps. Why did you rinse it all out?
Oh if that's how low of a dose it is then I think you should be ok! 0.5 % is 5 mg/mL and you'd probably be delivering 100 uL per squirt so 200 uL total = approx 1 mg of EDTA (without accounting for the dihydrate). I wonder if there are any other potential effects that this can trigger or if such a reaction is always a positive ie you are destroying biofilms etc? I do recall @Hip had a much stronger reaction to EDTA than he did to NAC, despite both apparently having good busting effects.. Very interesting stuff.

Re sinus rinse, it's apparently the protocol they use - bust up the biofilm and then rinse out the broken down parts etc. Also it's really nasty (and irritating to the membranes) having the soapiness and bitterness in your sinus haha so it's a very welcome thing to rinse it out.

I still haven't read into sinus microbiome but I did this anyway to help clear the virus and reduce the chance of getting a proper sinus infection.
 

Hip

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Are you (or @Hip) not worried that EDTA could be chelating heavy metals and redistributing them into other areas eg your brain..?
No more worried than say taking the supplement alpha lipoic acid, which can redistribute mercury to the brain.

EDTA does not cross the blood-brain barrier well, and also the dose of EDTA I administer via one nasal spray application is very low, around 3 mg; whereas EDTA oral supplements tend to come in doses of around 500 mg.
 

hb8847

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@seamyb So you've stopped the iodine completely then and switched to just the biofilm buster on its own? Did you feel you'd stopped improving on the iodine completely?

@Hip are you still trying with the biofilm spray? How is it going?
 

seamyb

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@seamyb So you've stopped the iodine completely then and switched to just the biofilm buster on its own? Did you feel you'd stopped improving on the iodine completely?

@Hip are you still trying with the biofilm spray? How is it going?
No, I still take the iodine (although I've stopped everything today because I got my second vax).

I actually noticed that 3 days with no EDTA (after having taken it for 3 days) that the iodine was causing a bad reaction (feeling ill for a few hours after it). Perhaps now that a load of biofilm has been busted there really is a lot to kill floating around up there and the iodine now gives me a herx.

My breathing has been a lot better lately, but with a slight exacerbation when I started the EDTA. Still seems to be going in the right direction.
 

Lieselotte

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I got the Microbiology Dx testing back. I'm not sure what the significance is of "Small Amount". Is that normal?
Now to figure out what to do/what to change with this information...Any and all comments welcome.
Looks like there is no candida after all.

According to some research online, the Cladosporium doesn't produce any harmful mycotoxins, but the Penicillium can produce Citrinin and Ochratoxin. Coincidentally, those two toxins showed up on my urinary mycotoxin tests (one had high citrinin and low OTA, the other had high-ish OTA and low Citrinin).

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seamyb

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I stopped it for the moment, as I did not notice any immediately benefits, and am testing other things at present.
Definitely also interested to hear where your mind is wandering now Hip.

Also, how long did the PEM from the EDTA last for you?
 

Hip

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what other things, out of interest?
I test out one or two new things every week. It might be a new supplement I've bought, a new drug I have got hold of, or just revisiting and retesting a treatment I've previously tried, and perhaps noticed some benefits. Or it might be trying an experimental protocol based on some new theory or idea of ME/CFS that is being talked about on this forum.

At the moment I am playing around with oxygen multistep therapy (O2MT), which some say may be more effective than hyperbaric oxygen therapy (HBOT). I figured out a way to get my cheap £200 oxygen concentrator machine to deliver sufficient oxygen to make this work.

Normally O2MT would require an expensive £1000 oxygen concentrator that delivers 10 liters per minute of 90% oxygen. My cheap machine only delivers 1 liter per minute of 90% oxygen, but I figured out how to make it work like a 10 lpm machine.

O2MT involves breathing high concentration oxygen (close to 100% oxygen) while performing some aerobic exercise. Some info in this thread.



Also currently looking into phage therapy, which previously was only available in the Republic of Georgia and Russia, but now you can easily buy cheap phage products from these countries online. I will be posting a new thread on phages soon.

Phages are viruses which infect and kill bacteria. They are in many ways better than antibiotics, because each phage specifically targets a certain species of bacteria, so you can selectively kill bad bacteria without harming the good bacteria. This might make phages good at dealing with dysbiosis.

Thinking in terms of Dr Markov's CBIS theory of ME/CFS, where he postulates ME/CFS is due to an dysbiotic overgrowth of bad bacteria in the kidney, phages which target these bad bacteria in the kidneys might be useful. Phage therapy might also have some benefit if you have a Staph or Strep infection in your nasopharynx.

Phage therapy is easy to administer, as it just involves drinking a vial of phages in solution. I will post more info in my new thread (but if you are interested, you can read an old thread on phages here).
 
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Lieselotte

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I got the Microbiology Dx testing back (nasal swab testing). Cladosporium and Penicillium positive.

According to some research online, the Cladosporium doesn't produce any harmful mycotoxins, but the Penicillium can produce Citrinin and Ochratoxin. Coincidentally, those two toxins showed up on my OATS urinary mycotoxin tests (one had high citrinin and low OTA, the other had high-ish OTA and low Citrinin).
Discussed this with my doc. He wants me to try doing a silver nasal spray 3x/day. Then if no change, we may try the EDTA+Amphotericin B as it is (as we know) harsh. I might see if there is a way to do NAC + the antifungal if we get there. Maybe I'll put a couple of drops of iodine in my silver spray :cautious:

Also, I'm getting some of the blood markers for mold done now too: C4a & TGF1.
Will let you all know how I get on.
 
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Have you come across any studies indicating nasal spray antimicrobials might have negative effects on the sinus microbiome?

I don't think much of the spray will enter the sinuses, in any case.

The nasal use probiotic Lactobacillus sakei was mentioned earlier in this thread.
Just thought I'd follow up about this. I did a little bit of reading just now (not for too long).

This article from the Cleveland clinic specifies regarding decongestant sprays that: "Your favorite nasal spray works by shrinking the blood vessels and tissues in the sinuses". I don't see how you wouldn't get all normal nasal sprays into the sinus as they are directly linked to your nose, but at very small spray volumes you possibly wouldn't hit all over the sinus mucosa.

And yes, here is an article showing that L. sakei was very useful in protecting against sinusitis even in the presence of introduced bacteria - I'm not sure if that is the same article that had been linked previously in the thread as I didn't check it.

It does make sense in general though that putting strong antimicrobials or detergents through the sinus would clear out the majority of the microbiome. Perhaps in our case that is an advantage, if we have unpleasant species present. However, biofilms seem to be very difficult to treat.

This paper reviews the use of antibiotics and surfactants in the context of resolving sinus biofilms, and they conclude that there aren't readily available and effective therapies as of now. I wonder if maybe iodine/NAC/EDTA and a surfactant rinse would be the answer to the busting? Hard to know if we have a biofilm present through vs other issues without getting some type of testing done.

I wonder if the ultimate solution would be to clear out whatever pathogens there may be with a somewhat aggressive therapy, then attempt to reinoculate with a probiotic strain such as L. sakei.


That all said, I think I will give the iodine spray a try. I recently had mould testing done at my house, and while the levels very very low, two of the rooms we sampled had some toxic species present... The inspector thought that a link between this and my health was highly likely, but I am not quite so optimistic - we shall see!



EDIT: just stumbled onto this paper, where they compare 1 % povidone-iodine nasal rinses with saline and mupirocin (same antibiotic as in "bactroban" ointment). People that were treated had a post-operative bacterial infection. They found a very similar outcome between the groups, with marginally more people having negative cultures in the mupirocin group (no significant difference). They do conclude that using povidone-iodine is a viable strategy, particularly in the context of COVID (as found here), despite their observations.
 
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Hip

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Still getting good results. It is not a miracle but it does seem to significantly help.
Looking at the ingredients of the CitriDrops nasal spray:
Active Ingredients:

Ascorbicum Acidum 3x, Citrus Limonum 4x, Sinapis Nigra 4x, Pulsatilla 4x, Luffa Operculata 5x, Berberis Vulgaris 6x, Euphorbium Officinarum 6x, Guaiacum 8x, Hepar Sulphuris Calcareum 12x, Mercurius Sulphuratus Ruber 12x.

Inactive Ingredients:

Benzalkonium Chloride, Purified Water, Sodium Chloride, Xylitol.
I suspect that what are listed as the inactive ingredients are in fact the ones that are having an active effect! And conversely, the listed active ingredients (which are included at tiny homeopathic doses) I suspect will have minimal effect!

Xylitol is a sugar which disrupts biofilms, and benzalkonium chloride, which is added as a preservative, is a potent antibacterial in its own right, used in alcohol-free hand sanitizers.

So it could be the xylitol + benzalkonium chloride combo is effective at knocking out microbes in the nasal cavities.


There appears to be a xylitol-based nasal spray on the market called Xlear that is intended for clearing sinus and nasal passages.