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

Hip

Senior Member
Messages
17,824
Has anyone found that Dr Joseph Brewer's antifungal nasal spray, which is designed to kill nasal mold, triggers substantial fatigue and PEM, even after light doses for a few days?

I tried a home-made version of Brewer's nasal spray last week, and was hit with considerable tiredness and PEM, which I think may have arisen from a Herxheimer reaction, as the spray kills off mold in the nose.


Dr Brewer hypothesizes that ME/CFS patients harbor a chronic mold infection in their nasal or sinus cavities, which he thinks plays a role in maintaining the ME/CFS condition. In his studies, Brewer found that 93% of ME/CFS patients were positive for at least one mycotoxin (compared to zero of the healthy controls).

Thus Dr Brewer has experimented with treating ME/CFS patients with an antifungal nasal spray which targets this mold infection. Refs: 1 2 3

The nasal spray protocol used by Dr Brewer involves taking a mold biofilm-busting nasal spray in the morning, and then an antifungal nasal spray in the evening. These two nasal sprays contain the following ingredients:

Brewer's morning nasal spray contains the anti-biofilm agent:
  • Disodium EDTA (this breaks down the mold biofilm)
  • Polysorbate 80 (acts as a surfactant)
Brewer's evening nasal spray contains the antifungal drug:
  • Either amphotericin B or itraconazole is used as the antifungal drug

Woodland Hills Pharmacy sells the Brewer antifungal nasal spray kit (and also sells the BEG nasal sprays used by Dr Shoemaker to target nasal MARCoNS infections often found in mold-illness patients). But because these are prescription items, I decided to make my own Brewer antifungal nasal spray.

Brewer's studies do not specify the exact concentration of the disodium EDTA used in his morning nasal spray, but Woodland Hills Pharmacy sell nasal sprays with 0.5% and 1% disodium EDTA, so I made up a nasal spray with 0.5% disodium EDTA (I did not use any polysorbate 80). Disodium EDTA powder can be obtained on Amazon or eBay.

I started off just using this anti-biofilm 0.5% EDTA spray alone, spraying just one spray (0.1 ml) per nostril daily. I did not yet commence any nasal spray antifungal treatment; that I planned to start later.

Interestingly, this same anti-biofilm EDTA spray is also used in the Shoemaker protocol to kill MARCoNS nasal infections. So EDTA works for both nasal mold and nasal MARCoNS.


After just 4 days I had to stop using the nasal spray, because I became pretty tired, and in particular very exhausted and depleted mentally. Even after stopping, my PEM lasted for 4 days afterwards.

I was quite surprised by this, because I did not really think I had any sort of infection in my nasal cavity. But clearly this substantial exhaustion and PEM from just two tiny sprays each day (and I had not even started on the nasal antifungals) suggests I may have a significant mold (or possibly MARCoNS) infection in my nose.


So for that reason I would like to restart the EDTA spray again, but I think I will start much more slowly, perhaps only spraying my nose once every 4 days to begin with, to try to minimize the severity of the Herx.



UPDATE: I eventually switched to using a home made nasal spray containing 0.5% of N-acetyl-cysteine (NAC). You can make up such a spray just by adding 500 mg of NAC from a capsule to 100 ml of distilled water (also adding 900 mg of salt to the 100 ml of water will make it into physiological solution, which is more comfortable in the nose).

I found no side effects whatsoever from this NAC nasal spray, and a study found that NAC was just as effective as EDTA for breaking up biofilms. So I would suggest a NAC nasal spray may be a better solution.

I did not notice any benefits from the NAC spray in my short term tests, but then I don't think I was ever exposed to mold, so I am not the right sort of ME/CFS patient to test this NAC nasal spray on.


I also have a theory of why disodium EDTA caused this Herx, see this post. Basically, my theory is that EDTA makes the nasal skin more permeable, thus allowing toxins in the nose to get into the body.
 
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wigglethemouse

Senior Member
Messages
776
@Hip I've been watching a few videos from mast cell researcher Dr. T.C. Theoharides lately. He states that mycotoxins activate mast cells.

Have you thought of trying Nasalcrom - quite a few folks here have tried it? Perhaps it might help the mast cells in the areas you are trying to address......
 

junkcrap50

Senior Member
Messages
1,330
Neil Nathan also treats his patients with Dr. Brewer's protocol. However he's found in some patients, similar responses to yours. He treats with intranasal colloidal silver spray and other very mild treatments. I don't rememeber them off the top of my head besides the silver nasal spray, but it can likely be found online as he's given several interviews on the subject.
 

perchance dreamer

Senior Member
Messages
1,691
An ENT suggested colloidal silver nasal spray for me, but it makes my nasal and sinus passages swell, and I become very stuffy. The same thing happened when I tried a BEG spray.

I wish these worked for me. I have a sinus fungal infection that I've never been able to get rid of.
 

Hip

Senior Member
Messages
17,824
Neil Nathan also treats his patients with Dr. Brewer's protocol. However he's found in some patients, similar responses to yours. He treats with intranasal colloidal silver spray and other very mild treatments. I don't rememeber them off the top of my head besides the silver nasal spray, but it can likely be found online as he's given several interviews on the subject.

That's very interesting.

What surprised me the most was that I was not yet even using any antifungal compounds: not amphotericin B, itraconazole, nystatin nor colloidal silver.

I just started with the biofilm buster EDTA spray, which breaks down the mold's biofilm. My idea was just to start gently using the anti-biofilm nasal spray first, and then introduce the antifungal nasal spray perhaps a few weeks later.

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.



Have you thought of trying Nasalcrom - quite a few folks here have tried it?

I guess that might be worth trying, although generally I don't appear to suffer from allergies or MCAS.
 
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Hip

Senior Member
Messages
17,824
What would the mechanism be behind the herx-reaction if disodium EDTA only removes biofilms and does not kill mold?

I am not sure, but possibly by removing some of the biofilm, the disodium EDTA spray exposes some of the mold cells (mold is a type of fungus), which then prompts the immune system to destroy them. So you get a Herxheimer reaction from that.

Or maybe when these mold cells are exposed by the the disodium EDTA spray, they start producing more mycotoxins, and it's these mycotoxins which I am reacting to.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I was quite surprised by this, because I did not really think I had any sort of infection in my nasal cavity. But clearly this substantial exhaustion and PEM from just two tiny sprays each day (and I had not even started on the nasal antifungals) suggests I may have a significant mold (or possibly MARCoNS) infection in my nose.

That's a pretty big reaction to such a small dose of EDTA. The only other possibility that I can think of off the top of my head would be a possible immune system over-reaction to mold or bacterial die-off from your nose?
 

Cipher

Administrator
Messages
838
I am not sure, but possibly by removing some of the biofilm, the disodium EDTA spray exposes some of the mold cells (mold is a type of fungus), which then prompts the immune system to destroy them. So you get a Herxheimer reaction from that.

Or maybe when these mold cells are exposed by the the disodium EDTA spray, they start producing more mycotoxins, and it's these mycotoxins which I am reacting to.

An alternative way to get ride of nasal mold and other microbial overgrowths might be to make a Lactobacillus Sakei nasal spray. I have not tested this myself, but I'm considering it because I've had about 70 % congested nasal passages for a number of years now (without any rhinorrhea) and accompanying hyposmia.
 

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
That's quite interesting Hip. A few years ago a close physician friend of mine who is good friends with Dr. Brewer, who practices in the same city we both live in, got me an appointment to see him. Apparently it's quite difficult to get an appointment with him.

I ultimately didn't take him up on it because originally Dr. Brewer was treating ME/CFS patients with much the same approach and treatment as the more popular east and west coast American physicians. But then he suddenly became " obsessed " with the mold basis of disease which kind of put me off. Perhaps I should rethink this.

As an aside Hip, all my improvements are still holding steady after all this time. Coincidence? I just don't know.
 

Hip

Senior Member
Messages
17,824
An alternative way to get ride of nasal mold and other microbial overgrowths might be to make a Lactobacillus Sakei nasal spray.

Lactobacillus sakei looks like an interesting product. Not sure how effective it would be on its own at clearing a nasal cavity mold infection which lives inside biofilms; but it might be something you could take while using Brewer's nasal sprays, much in the same way as taking probiotics with antibiotics is a good idea.



Dr. Brewer was treating ME/CFS patients with much the same approach and treatment as the more popular east and west coast American physicians. But then he suddenly became " obsessed " with the mold basis of disease which kind of put me off. Perhaps I should rethink this.

I wonder whether the immunosuppressive effects of some mycotoxins might explain why mold appears to be a risk factor for ME/CFS: these immunosuppressive effects may allow viral infection to proliferate, or might prevent the immune system from clearing viral infections.



As an aside Hip, all my improvements are still holding steady after all this time. Coincidence? I just don't know.

Pleased to hear that. I recently mentioned your long-term benefits after tenofovir in this post.
 

junkcrap50

Senior Member
Messages
1,330
What surprised me the most was that I was not yet even using any antifungal compounds: not amphotericin B, itraconazole, nystatin nor colloidal silver.

I just started with the biofilm buster EDTA spray, which breaks down the mold's biofilm. My idea was just to start gently using the anti-biofilm nasal spray first, and then introduce the antifungal nasal spray perhaps a few weeks later.

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.

Ah, I missed that you took EDTA alone. Wow that's pretty extreme response for such a mild intervention. You could try charcoal (or other binders) sinus rinses to see if that's milder than EDTA. Or just really dilute the EDTA.
 

Cipher

Administrator
Messages
838
Lactobacillus sakei looks like an interesting product. Not sure how effective it would be on its own at clearing a nasal cavity mold infection which lives inside biofilms; but it might be something you could take while using Brewer's nasal sprays, much in the same way as taking probiotics with antibiotics is a good idea.

Here's a thread about people trying L. Sakei for their sinuses.

What nasal/sinus-related symptoms do you have?
 

Hip

Senior Member
Messages
17,824
What nasal/sinus-related symptoms do you have?

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.
 
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frozenborderline

Senior Member
Messages
4,405
I wonder whether the immunosuppressive effects of some mycotoxins might explain why mold appears to be a risk factor for ME/CFS: these immunosuppressive effects may allow viral infection to proliferate, or might prevent the immune system from clearing viral infections
THhis is Erik Johnson’s theory of the Tahoe outbreak. I have to admit I find it pretty convincing. I am also having tons of immune issues that all seem to have gotten worse in moldy damp places , although unfortunately I live in the northeast so it’s hard to find places that aren’t that for a proper experiment.
 

frozenborderline

Senior Member
Messages
4,405
@Hip to clarify he thinks that mold basically created areas or fields of immune suppression in Tahoe that made the virus that went around hit harder and made people not recover from it. But he has some extra theories about the type of mold + some Cyanobacteria thing
 

fredam7

Senior Member
Messages
153
@Hip thank you for sharing this . Can an immunologist, hematologist or neurologist write a script for these sprays ? For a year I've had mucus pouring from my nose , sinus pressure , hell, maybe part of the constant tinnitus and just carry flu like symptoms and dr's tell me, "you have bigger things to worry about". Is this sinus stuff part of CFS? I 100% feel mold is in my nose and sinuses so I want to try these 2 items . One is a spray and the other pills, correct ?

Is it possible you reacted that way because the mold somehow flared up or just too much activity ? Or maybe just more of the same of being over reactive to any foreign substance ?

I wish they had something for mold in the lungs...

The other thing may be storage ? Did you make a 1 time batch or store it?
 

Hip

Senior Member
Messages
17,824
Can an immunologist, hematologist or neurologist write a script for these sprays ?

I am not sure. It's experimental fringe medicine, so most doctors will not know about it. And there isn't any direct evidence for mold infections in the nose. In fact, Dr Ritchie Shoemaker is very critical of the nasal mold infection idea. If you can find a doctor following Dr Brewer's protocol for nasal mold, I am sure they would be happy to prescribe. For the MARCoNs nasal spray, it is Shoemaker trained doctors who will prescribe it, if you test positive for MARCoNs.