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

Hip

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Hi Hip. Any update on this? It sounds as if you've abandoned this approach because of the NAC experiment.
Applied the 0.5% NAC nasal spray once daily for around two weeks, but did not notice much. However, it may be that you have to follow this treatment for a few months before benefits appear. But I am not a good candidate for this, because I have not had any major mold exposure.



If the EDTA causes you PEM and fatigue, wouldn't that suggest you've discovered something central to your illness, and that there may be a possible treatment in it?
It's hard to say why the EDTA caused PEM. It could be that it was absorbed into the brain via this intranasal administration, and caused some adverse effects there.
 

MartinK

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Hi @Hip . I just found your thread and I remembered one very special incident from last month.
I did Nalcrom (cromolyn) in last months without problem, maybe with some small benefits, but when I did some NasalCrom applications last weeks (I had PEM in those days), my PEM was really harder, longer and I was really inflamed...it was really exhausting for me.

I also don't understand what could have happened after nasal application! a great mystery...

You did some more investigation on this topic?
 

Hip

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You did some more investigation on this topic?
Not really, I just found when I switched from an EDTA nasal spray to a NAC nasal spray, then I did not get this PEM issue.

Nasal application allows the substance to get into the brain more easily, so that's one factor.
 
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MartinK

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@Hip did you also think that it could be heavy metals in the brain? It occurred to me because of that reaction ...
Did you have problems with heavy metals in your body?
 

Hip

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@Hip did you also think that it could be heavy metals in the brain? It occurred to me because of that reaction ...
Did you have problems with heavy metals in your body?
Very hard to say. Some people say that EDTA cannot even cross the blood-brain barrier.
 

ebethc

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But the biofilm buster EDTA spray alone caused my PEM and greatly increased mental fatigue, a strong response which makes me think that a nasal mold infection may very well be playing a causal role in my ME/CFS.
are you going to try to dilute the EDTA solution further?

what about xylitol sinus sprays? I know the xylitol reduces swelling/inflammation, but I don't know how it does this (eg is it lowering histamine? changing the sinus microbiome, like mycotoxins/mold?)
 

Hip

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are you going to try to dilute the EDTA solution further?
No, I switched to N-acetyl-cysteine (NAC) nasal sprays instead. I used a 0.5% NAC solution in the spray.

One study found that NAC is equally effective as biofilm buster as EDTA. So I would think there should be no problem substituting EDTA with NAC in the nasal spray.
 

ebethc

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One study found that NAC is equally effective as biofilm buster as EDTA. So I would think there should be no problem substituting EDTA with NAC in the nasal spray.
good to know! I just went back to NAC and am better able to tolerate it now for some reason (it used to give me a stomach ache, even with selenium and molybdenum).... I don't take it every day, but it's helping.

presumably, it breaks up gut biofilms, too, so glad to get that additional benefit.
 

Hip

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@Hip did you get a prescription for the Brewer kit from woodland hills pharmacy? And do they ship to UK (I think I remember you're from this part of the world)?
I wanted to buy the Woodland Hills EDTA 0.5% nasal spray, which uses disodium EDTA (aka: disodium edetate) as a biofilm disruptor. I wanted to start out just by targeting the biofilm, and then maybe later adding an antifungal. Dr Brewer uses EDTA as the biofilm disruptor in his nasal spray (see this Brewer paper).

But I have no prescription, and unfortunately Woodland Hills pharmacy do not sell these nasal sprays without a prescription.

So I made up a nasal spray myself, according to the Woodland Hills EDTA spray ingredients and using info from the Brewer published studies. This is easy done, see as follows:



Here is How I Made a Disodium EDTA Nasal Spray

Start with food grade disodium EDTA powder, which you can buy on Amazon or eBay for around £5 for 100 grams.

Then you need an empty nasal spray bottle; I use a 50 ml bottle.

You fill the bottle with 50 ml of distilled water, and add 250 mg (quarter gram) of disodium EDTA powder to make a 0.5% solution. Or if you want the weaker 0.05% solution, add 25 mg of disodium EDTA. If found the stronger 0.5% solution produced considerable Herx effects, so the weaker 0.05% solution may be better, as I did not get much Herx from that.

It is a good idea to add 450 grams of pure sea salt (without any additives) to the 50 ml of water, to make it into physiological solution (you don't have to do this step, but it makes the spray more comfortable in the nose if the spray salinity is equal to body tissue salinity).

To weigh out your EDTA accurately, you may want to get a cheap digital weighing scales which has 1 mg accuracy.

Note that Dr Brewer also added surfactant (soap) polysorbate 80 to the nasal spray, in addition to EDTA, but I am not sure how important this surfactant is, and I did not include it.



Here is How I Made a N-Acetyl Cysteine (NAC) Nasal Spray

Dr Brewer in his paper about the nasal spray treatment of ME/CFS says that both EDTA and N-acetyl cysteine (NAC) can be used as biofilm disruptors. I tried both a NAC nasal spray and an EDTA spray.

I made up a 0.5% NAC nasal spray by placing 250 mg of NAC into 50 ml of distilled water in a nasal spray bottle. NAC you can buy as a supplement, and one capsule of NAC is typically 500 mg. I found no Herx effect from this NAC nasal spray.
 

seamyb

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It's both impressive that you did this and frustrating that you had to.

This Brewer fella isn't the same guy who did something with zinc in the nose? Think that was bacterial infections?

I'm gonna try this at some point. This one will definitely have the missus doubting my sanity.
 

seamyb

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I've just had an epiphany.

A few years ago I lived in a B&B and the room above me flooded. There were literal mushrooms growing on the ceiling of my en-suite and the damp was all over the place. This didn't bother me too much because I was a raging alcoholic, so it was left for quite some time.

I would bet you a thousand quid that this is my issue.
 
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I've just had an epiphany.

A few years ago I lived in a B&B and the room above me flooded. There were literal mushrooms growing on the ceiling of my en-suite and the damp was all over the place. This didn't bother me too much because I was a raging alcoholic, so it was left for quite some time.

I would bet you a thousand quid that this is my issue.
Possibly.

After discovering that mold could be a problem in his patients, Dr Brewer reinterviewed all his ME/CFS patients, many long term patients, with various onsets (viral, stress, surgery, etc.) asking specifically about mold exposure (any flooded basements, crappy apartments, etc.). Many of them said, "Oh yeah, we did have bad flood damage once" and "Oh yeah my college dorm/apartment definitely had mold." Some, I don't know how many, patients who were viral onset were "cured" with mold treatment with intranasal antifungals. Many others, even with known mold exposure, were not improved with mold treatment.

I don't think he believes all ME/CFS cases are because of mold, but that it can be a definitive treatment and provide significant improvement in some cases. Perhaps, due to the prevalance of mold infested buildings and possible exposures to mold, it can cause susceptibility to other ME/CFS triggers. But he doesn't know about that for sure. However, mold definietely must be a consideration for a trigger of ME/CFS and treatment route.

Source: Spoke to a patients of his and had 1 email exchange with Dr. Brewer.
 

Hip

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I've just had an epiphany.

A few years ago I lived in a B&B and the room above me flooded. There were literal mushrooms growing on the ceiling of my en-suite and the damp was all over the place. This didn't bother me too much because I was a raging alcoholic, so it was left for quite some time.

I would bet you a thousand quid that this is my issue.
The Dr Joseph Brewer study that @junkcrap50 details above is this one. In this study Brewer found 90% of ME/CFS patients reported exposure to a water-damaged building.
 

seamyb

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Yea I've just glanced through them.

I know this is probably a long shot, but I'm booking a private ENT appointment and taking these papers with me. Maybe I'll get a prescription for Brewer's, maybe I'll be asked what I'm smoking. Maybe they'll be able to see something up there themselves. I dunno. But at least I have the DIY if not.
 
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I've just had an epiphany.

A few years ago I lived in a B&B and the room above me flooded. There were literal mushrooms growing on the ceiling of my en-suite and the damp was all over the place. This didn't bother me too much because I was a raging alcoholic, so it was left for quite some time.

I would bet you a thousand quid that this is my issue.
I have a different opinion than brewer in that I don't think nasal colonization is main problem. But mold is a big deal and even if the worst buildings are left , possessions u have from them are often coated in mycotoxins
 

seamyb

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@Hip how would you go about making the actual antifungal spray? Did you try this part? I know you only took the EDTA, but was wondering if you'd surced any of the antifungals suitable to make a spray out of.
 

Hip

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@Hip how would you go about making the actual antifungal spray? Did you try this part? I know you only took the EDTA, but was wondering if you'd surced any of the antifungals suitable to make a spray out of.
I never got that far as to add the antifungal. I was planning to add an antifungal later, after using the biofilm buster spray for some months. Did not want to do too much all at once, otherwise the Herx might be stronger. I think I read that doctors using this Brewer protocol also go slowly like this.

It may be possible to buy some antifungal drugs, and dissolve them into the nasal spray, at the right concentration. However, it's something I have not yet looked into.

A biofilm buster should help fight both mold or bacteria in the nose just on its own, by breaking down biofilms, which should allow the immune system to attack the microbes within the biofilm.
 

seamyb

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Just watched this video by Brewer. Seems to be from before he started spraying people's noses with mushroom killer, but he makes a strong case. Very interesting video.