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

fredam7

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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.
Thanks, makes sense . Surprised Shoemaker doesn't think mold can infect the sinuses , of maybe he meant nose only ? It's in the sinuses . Old can't go from no mucus aside from
the common cold , to hsving it pour out of you after being immersed in black mold . It's one of the admitted problems , sinus infection .
From what I ready , it requires surgery and is rather serious , pretty much eats away the tissues .
Once damaged by mold , re-exposure sends people into true hell
So I also suspect many had mold exposure that damaged them some time in the past and didn't know it, the re-exposure sent them over the edge

Maybe ask Erik Johnson about those medicstions and why you reacted the way you did. I've read some of his stuff and he really gets mold. I don't know what he did exactly to cute himself but he really knows what he is talking about and seems to be very sincere and wants to educate and spread the word . I'll try to see if I can reach him. I don't have social
media so maybe via his blog, not sure . But someone here mentioned he is on Facebook ,

The oral anti-fungals are hard on the liver as everyone knows , not sure what that would go. Another member wrote she went on a special diet , took charcoal
And clay, got rid of most her possessions and moved to Arizona . She is 90% better , her/his post was very recent . Maybe she has more insight on your nasal spray and reaction
 

fredam7

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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.

You had improvements from the spray, or other mold treatment ? Was the mold only in your nose?
 

Dufresne

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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.
Dr Nathan suggests you need to have your detox protocol and binders in place before you go after the mold colonizing the nose. He claims he can often tell how a patient is going to react to the antifungals by how they react to binders. Those able to handle aggressive binding can go for the ampho B (about 60% of patients); the more sensitive folks, he starts on nystatin nasl spray; those in the middle will get a 2% ketoconazole solution. If he suspects someone is going to be very sensitive he'll start them on hydrosol silver. Interestingly he adds the biofilm buster in last; perhaps this is a bigger jump than one would think, and maybe why you reacted strongly to your biofilm solution.

Apparently he's tending to leave antibiotics out of his sprays these days after not seeing any improvement with them, and also not being able to eradicate the marcons. He talks about this at around 55 minutes into his recent talk with the betterhealthguy.

Lastly, he claims 90% of his patients have mold colonized nasal passages, and that treating this has catapulted his treatment success rate. These numbers are compatible with Brewer's original numbers in the study of ME/CFS patients.

 
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Hip

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Interestingly he adds the biofilm buster in last; perhaps this is a bigger jump than one would think, and maybe why you reacted strongly to your biofilm solution.
Perhaps it is quite a bit jump to start on the biofilm buster.

I've diluted my disodium EDTA biofilm buster nasal spray ten times now, down from the original 0.5% to 0.05%, and I only take it every other day, at only one 0.1 ml spray per nostril. But I am still finding the day after I take it I feel a bit whacked. But it's bearable thus far, so that's how I am proceeding at the moment.
 
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Dr Nathan suggests you need to have your detox protocol and binders in place before you go after the mold colonizing the nose. He claims he can often tell how a patient is going to react to the antifungals by how they react to binders. Those able to handle aggressive binding can go for the ampho B (about 60% of patients); the more sensitive folks, he starts on nystatin nasl spray; those in the middle will get a 2% ketoconazole solution. If he suspects someone is going to be very sensitive he'll start them on hydrosol silver. Interestingly he adds the biofilm buster in last; perhaps this is a bigger jump than one would think, and maybe why you reacted strongly to your biofilm solution.
Which specific binders does he recommend? thanks
 

Dufresne

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Which specific binders does he recommend? thanks
It depends on which toxins one is trying to bind. Nathan suggests the following:

Ochratoxins: cholestyramine, Welchol, and activated charcoal
Aflotoxins: charcoal and bentonite clay
Trichothecenes: charcoal and probably chlorella and clay
Gliotoxins: clay, NAC, s. boulardii.

This is why he likes to do urine analysis before starting treatment, to know which molds and toxins are present. However it seems charcoal is a good bet. It might be worth trying them all just to see the response. He stresses it's very important to go as slow as necessary to keep inflammation from rising.
 

antares4141

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22 years ago when I first got ill and had a MRI, their was a very conspicuous "cyst" in my nasal cavity. Dr's just ignored it and when I asked they said it was nothing. The allure of treatments like this are very tempting. But I always tell myself if the above mentioned treatments worked. And I say this with a lot of trepidation because studies cost money and take a lot of time and effort to conduct. But somebody should be able to publish a study on it that showed it's efficacy and that would pass the muster of peer review.

And even if the theory is correct that there are ongoing nasal infections that cause symptoms of cfs then there should be accurate universally accepted ways of diagnosing it. This is just too much like the post lyme syndrome theory that there is still an ongoing infection that can't be detected by any universally excepted standards but requires long term antibiotic treatment.

There have been studies on post lyme syndrome that show or at least strongly indicate that while maybe there are physical effects that linger they are not caused by any type of recognized micro organisms.

I always question the integrity of any dr that prescribes treatments that have not gone through this process. That is without conducting studies to try to establish their efficacy. And more importantly accepting the results and acting accordingly. Especially the "lyme literate" dr's that ignore the evidence and continue to give their patients false hope and prescribe them long term antibiotics regardless of the lack of evidence for their efficacy.
 

Hip

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I always question the integrity of any dr that prescribes treatments that have not gone through this process.
Dr Brewer conducted a study on his antifungal nasal spray treatment for various illnesses including ME/CFS, in patients positive for mycotoxins by the urine test. He reports 94% improved clinically.
 

antares4141

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I'm not doubting he did a study. Unfortunately there are thousands upon thousands of studies that may seem to indicate or imply there is evidence for whatever it is they are trying to prove even where there isn't any.
That's where the replication and peer review and widespread acceptance comes in.

And because something like this turns on it's head the conventional wisdom and it would become headline news. I have to assume the study he conducted isn't widely accepted by his peer's. Nor that anyone has been able to reproduce it.

Just like I am guessing there are lots of studies that seem to show a high degree of efficacy for testing and treating post lyme syndrome. It's just that none of them have been replicated in a way that they are accepted by the general community as being a reliable indicator of the hypothesis they are trying to put across.

Pace of course would be a good example of why just because somebody published a study its hypothesis cannot be taken at face value. Sometimes even when it is widely accepted by main stream.

I know it's asking a lot to do this type of work. But I have a problem with dr's that are profiting off of treatments that are not shown to have at least some degree of efficacy. Especially in cases where there are serious side effects to consider or other more likely causes for the patient's symptoms that have not been considered and tested for.
 

Hip

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I know it's asking a lot to do this type of work. But I have a problem with dr's that are profiting off of treatments that are not shown to have at least some degree of efficacy.
Well what you say unfortunately applies to all ME/CFS specialist doctors. All the treatments they use have not been replicated in large scale studies (lack of funding I expect is a major factor for this). At best, they have been tested in small-scale studies, but some treatments that doctors and patients have observed are effective have not been formally tested at all in studies. LDN, GcMAF, tenofovir, pyridostigmine are examples of this.

But the best type of study is an N=1 study, where you test these treatments on yourself, and if you observe major benefits, then you don't need anything more, as you then know it works for you,

And knowing the dedication and desire to help ME/CFS patients that pretty much all these leading ME/CFS specialists have, I would not question their integrity just because they cannot get funding and the medical community interested in studies.

That's not to say that there are not doctors out there who offer duff treatments; but generally speaking I think the leading ME/CFS specialists have very high integrity.
 
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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.
My nose is similar and more or less in a state of very dry and it gets PINCHED like it has clothes pins on it, and when the swelling and sore throat (daily, later in the day typically) comes on, and if I lay down, I often cannot breathe thru my nose hardly, because something in the back is swollen up. What is this anatomy, I don't know as my adenoids and tonsils were removed at 10.

My eyes pour water and that goes down my nose all day long. They are squeezed, also. And located nearby the swollen back of the nose area I seem to feel.
 
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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
It would seem like one could confirm that one has : mold growing in the nasal passages, thru some type of culture and testing...but I recognize we face nearlyIMPOSSIBLE odds to get anyone to test anything.

I would not rule out that the substances, applied to delicate inflammed nasal tissue: created the PEM.

I was given a nasal spray years ago during one of my FAILED efforts to get diagnosed. It hurt my nose, and throat, and I threw it out.
 

antares4141

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Well what you say unfortunately applies to all ME/CFS specialist doctors. All the treatments they use have not been replicated in large scale studies (lack of funding I expect is a major factor for this). At best, they have been tested in small-scale studies, but some treatments that doctors and patients have observed are effective have not been formally tested at all in studies. LDN, GcMAF, tenofovir, pyridostigmine are examples of this.

But the best type of study is an N=1 study, where you test these treatments on yourself, and if you observe major benefits, then you don't need anything more, as you then know it works for you,

And knowing the dedication and desire to help ME/CFS patients that pretty much all these leading ME/CFS specialists have, I would not question their integrity just because they cannot get funding and the medical community interested in studies.

That's not to say that there are not doctors out there who offer duff treatments; but generally speaking I think the leading ME/CFS specialists have very high integrity.
I guess I am jaded maybe? From 22 years of experience I absolutely believe mold is a huge factor in my illness. When I am exposed to water damaged buildings I absolutely believe I get sick from it.

I just don't think any of the test's or treatment's other than common sense mold avoidance have any value. And you don't need to see a specialist for this. As a matter of fact it's counter productive. Because it is expensive. Finding adequate housing is difficult and expensive. And many times fraught with trial and error. The resources should be delagated where they will do the most good. Safe housing.

Seeing a specialist who will just reaffirm what you already know through questionable and expensive test's and treatments, and ultimately giving you the same basic advice you already are aware of. To find safe housing. Seems counter productive to me.

And when I say "safe" that term is relative. In my opinion safe would be a metal building with adequate insulation where everything can be exposed and checked for mold. And for 99.9% of the mold affected population this isn't an option.
 
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I guess I am jaded maybe? From 22 years of experience I absolutely believe mold is a huge factor in my illness. When I am exposed to water damaged buildings I absolutely believe I get sick from it.
When we consider chemical sensitivities associated with ME/CFS, mold clearly emits strong odors which send the message: flee the area. So does the perfume section of any Dept. Store. The Soap aisle in the grocery store. I recall using a "common" furniture cleaning product on the wood and: got really sick from smelling it.

When I am extra run down, I am extra sensitive to chemicals. I was subjected to strong perfume soap on this trip and felt really sick from it...but after I rested for a while, its no longer seems to be bothering me as strongly as it did.

I moved from a place that was KNOWN to have some mold issues.....and frankly: I am much sicker now that I live in a very clean, fresh, lovely apartment.

Clearly: more attention to mold and other ubiquitous substances that stress the body: is warranted.
 

antares4141

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I have the chemical sensitivity issue too. It almost disappears at times when my energy levels are high and my symptoms are sparse. I can provoke this by pushing myself physically. Then I become much more aware of fragrances, chemical odors, have air hunger, and seem to be going through digestive stress, brain burn, neuropathy, etc. etc..

I live in a metal building like I described in the prior post and for me it isn't a panacea. But I was bed ridden when I first got sick and lived in a moldy house. And the symptoms were unbearable. I wouldn't be alive today if I still had to endure that type of existence.

I've moved many places over the years and lived in many different conditions. One was a relatively new house. Less than 5 years old. Much like you are describing. Unfortunately looks can be deceiving. I did very poorly in it also. I really don't have any good advice for people trying to find safe housing. Except if you can find one with a porch or a back yard you can camp out in. I strongly suspect there was mold in the new house.

I have traveled back and forth to see my dad in fl and stayed in his house in Fl. As well as an all aluminum rv in NC in his driveway next to a 70 year old moldiest home I have ever seen. All the different situations seemed to affect me differently. I did very poorly in fl as well as NC. But also seems especially when I initially get back to NM in my metal building the same thing. But after I settle in I seem to get better. So I attribute a lot of this to being outside breathing dust and pollen and other allergins. I can't help wondering if these don't provoke my symptoms the same way mold does just not to the same degree. And I am always physically active to the extent I am able in NM trying to maintain and work on my home. Which provokes my symptoms also.

I keep wanting to experiment with just staying in my metal building with the windows shut for a couple of consecutive weeks and see how that affects me. Maybe using air filters which I gave up on a long time ago.

Seems the best I have ever felt was traveling on the 1800 mile trips back and forth between nm and fl and nc. I can't help but wondering if a large part of that is while I am awake and driving 12 hours each day I am not active physically. It seems physical activity always provokes symptoms regardless of all the other variables. So does a WDB.
 

Sushi

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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.
I just bought some and have used it for 4 days now. I have had chronic sinus congestion and infections for many years. So far it has given nearly immediate help. We’ll see about long term. I’ve tried so many things over the years—I am using it as a stand-alone approach.