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

[GlassCannonLife]

@seamyb you're saying the xlear made you herx as much as the EDTA? Did you ever do saline rinse with povidone-iodine (I did 0.5 %) - I can't recall.

I use homemade xylitol + GSE (xlear essentially) spray daily and it doesn't cause any reaction at all, while the iodine nose rinse crashed me horribly for the past month (still bad atm)

 

[seamyb]

@seamyb you're saying the xlear made you herx as much as the EDTA? Did you ever do saline rinse with povidone-iodine (I did 0.5 %) - I can't recall.

I use homemade xylitol + GSE (xlear essentially) spray daily and it doesn't cause any reaction at all, while the iodine nose rinse crashed me horribly for the past month (still bad atm)

The xlear with eucalyptus oil did make me crash as much as EDTA. I actually haven't tried the one without it, although I do have it in the house. It would be interesting to see if it has the same effect or not.

Eucalyptus oil is a potent antifungal so perhaps the entire effect was from that.

As for iodine rinse, no I have not tried that. I was inhaling iodine vapour but never herxed off it. I maybe had some muscle aches early on, but not the crash I have with other things. I'm not sure how inhaling vapour compares to having actual iodine solution in the nose. I'd imagine the effect isn't as strong, but perhaps it's negligible.

 

[GlassCannonLife]

The xlear with eucalyptus oil did make me crash as much as EDTA. I actually haven't tried the one without it, although I do have it in the house. It would be interesting to see if it has the same effect or not.

Eucalyptus oil is a potent antifungal so perhaps the entire effect was from that.

As for iodine rinse, no I have not tried that. I was inhaling iodine vapour but never herxed off it. I maybe had some muscle aches early on, but not the crash I have with other things. I'm not sure how inhaling vapour compares to having actual iodine solution in the nose. I'd imagine the effect isn't as strong, but perhaps it's negligible.

Ah ok interesting. I also have a eucalyptus oil spray that I was using separately and also did not respond negatively to that.. It's all quite strange and inconsistent it seems.

Maybe you can try an iodine nose rinse if you're feeling brave but please be careful.

 

[Shanti1]

Mind if I join the party .

I tried a 1.25% povidone iodine nebulization last night and this morning with tubes directly into the nose. I did not breathe into the lungs, just let it circulate through the sinuses and did a couple of Valsalvas (like when you are trying to pop your ears) to push it into the sinuses. I chose the povidone iodine due to the lower iodine content and the delayed/lower absorption. I basically used the technique shown in the video at the bottom of this page: http://biotoxinjourney.com/more-marcons/

Last night I had a slight negative reaction to it and this morning was, worse, causing me to feel poorly most of the day. I have decided not to repeat the iodine nebulization but may try something else. I don't think what I am feeling is a herx, more just that my body doesn't like it.

The binder I am using is Ultrabinder by QuickSilver, 4x per day.

I actually don't think that I have MARCoNs or mold/fungus in the nasal cavities, but when I looked back at my labs through the last few years, I have several markers that indicate a CIRS pattern as defined by Dr. Shoemaker (low MSH and cortisol, high TGF-B1, undetectable ADH with high osmolality, bottomed out androgens). I have improved greatly on valacyclovir, but I'm wondering if my reactivated EBV is layered on top of CIRS exposure.

I don't have a known history of WDB, but I do have a history of a severe intestinal Candida krusei overgrowth. No one talks about candida as setting up the CIRS pathology described by Shoemaker, but I am left wondering.

Anyhow, since I have the low pituitary function secondary to low MSH described by shoemaker, I decided to put myself through Shoemakers 12 steps: https://richmondfunctionalmedicine.com/mold-related-biotoxin-illness-part4/. I ordered HERTSMI-2 mold tests for home an office to make sure there is no ongoing exposure and am working with the binders and any possible nasal microbes. I'm looking forward to step 4, which is restoring ADH, since I think this is another part of the puzle for me, but wanted to set myself up for success.

 

[hb8847]

Interesting to hear about your experience with iodine. I've not tried it myself but it seems to chime with some other people's, namely that it causes an unpleasant reaction that doesn't feel like a Herx. And if your gut is telling you it's not a Herx then I'd trust that.

To my knowledge it is only Dr Myhill that uses iodine; it wasn't used by any of the main mould doctors in their trials (Brewer, Shoemaker, Nathan), so perhaps it's not that great in this instance. I think if/when I eventually get down to the nasal sprays I don't think iodine's the one I'll try.

I don't have a known history of WDB, but I do have a history of a severe intestinal Candida krusei overgrowth. No one talks about candida as setting up the CIRS pathology described by Shoemaker, but I am left wondering.

For what it's worth I had a lot of Candida in my gut that I treated with Nystatin, and it helped quite a bit. The presence of the Candida alerted my doctor to the possibility I might have mould/fungus elsewhere, and prompted them to order tests for Mycotoxins, which came back positive even though I've gotten rid of practically all the gut Candida. So in my case at least, the presence of Candida in the gut was very much a sign I had more mould elsewhere in my body, or at least it seems so.

 

[Shanti1]

For what it's worth I had a lot of Candida in my gut that I treated with Nystatin, and it helped quite a bit. The presence of the Candida alerted my doctor to the possibility I might have mould/fungus elsewhere, and prompted them to order tests for Mycotoxins, which came back positive even though I've gotten rid of practically all the gut Candida. So in my case at least, the presence of Candida in the gut was very much a sign I had more mould elsewhere in my body, or at least it seems so.

Unfortunately, the candida species I had, candida krusei, is not susceptible to nystatin or fluconazole, so used a no grain, no starch, no sugar, no fruit diet along with a host of antimicrobials for months. This was in 2015. My testing since then has been clear, but I still do occasional rounds of antimicrobials just in case there are lingering biofilms that want to blossom.

Since I am going to the trouble of doing Shoemakers steps, It is not a bad idea to do a urinary mycotoxin to make sure I'm not missing something. There is controversy around them because they can pick up dietary sources of mycotoxins and, according to Shoemaker, mycotoxins are commonly found in the urine of healthy individuals, but I think that by doing a low mold diet beforehand viewing the results with a critical eye, they can give good information. I should probably wait until I am off the binders to do it and I'll retest my CIRS markers at the same time. Which urinary mycotoxin profile did you use?

 

[seamyb]

along with a host of antimicrobials for months

Which antimicrobials did you use? And are there symptoms associated with candida or mold/fungi infections of the intestines? Latter question aimed at you too @hb8847

 

[Shanti1]

Which antimicrobials did you use? And are there symptoms associated with candida or mold/fungi infections of the intestines? Latter question aimed at you too @hb8847

Most people have significant gas, bloating, and distended abdomen due to fermentation of sugar, but I never had any intestinal symptoms, which is why it went undiagnosed for years (I now think I had it to some degree, even in childhood). My atypical symptoms were presumably because I had candida krusei instead of albicans, and there are significant differences between the two. The symptoms I did have were severe cognitive impairment, extreme brain fog, depression, PMS, acne, coma-like non-functional state after eating carbs, coated white tongue.

When I got my GI test back with the heavy growth on culture and "many yeast" seen on microscopy, I "carpet bombed" my intestines and had a major die-off reaction with fever for several days.

Over the next several months of no sugar/carbs and antimicrobials my cognition improved, skin cleared up, tongue coating went away and depression and PMS resolved. Later, in 2019, things went down hill again and I developed PEM and official ME/CFS, but my cognition was never as bad as with the candida.

Regarding antimicrobials, I have used the following: Oregano oil soft gels, GFSE -extra strength (I put a few drops in a capsule), Colloidal Silver, Interfase enzymes, Berberine, Candida SAP (NFH), and ozonated olive oil in a capsule. Some of these are harder to tolerate than others, the ones that were the easiest for me were the colloidal silver, the berberine, and the ozonated olive oil.

 

[seamyb]

Most people have significant gas, bloating, and distended abdomen due to fermentation of sugar, but I never had any intestinal symptoms, which is why it went undiagnosed for years (I now think I had it to some degree, even in childhood). My atypical symptoms were presumably because I had candida krusei instead of albicans, and there are significant differences between the two. The symptoms I did have were severe cognitive impairment, extreme brain fog, depression, PMS, acne, coma-like non-functional state after eating carbs, coated white tongue.

When I got my GI test back with the heavy growth on culture and "many yeast" seen on microscopy, I "carpet bombed" my intestines and had a major die-off reaction with fever for several days.

Over the next several months of no sugar/carbs and antimicrobials my cognition improved, skin cleared up, tongue coating went away and depression and PMS resolved. Later, in 2019, things went down hill again and I developed PEM and official ME/CFS, but my cognition was never as bad as with the candida.

Regarding antimicrobials, I have used the following: Oregano oil soft gels, GFSE -extra strength (I put a few drops in a capsule), Colloidal Silver, Interfase enzymes, Berberine, Candida SAP (NFH), and ozonated olive oil in a capsule. Some of these are harder to tolerate than others, the ones that were the easiest for me were the colloidal silver, the berberine, and the ozonated olive oil.

So you're a fan of the essential oils too then.

Did you notice any improvement to your condition when you got rid of the gut microbes?

I'm not really sure I have anything iffy growing in my gut, but I know that the suspected mycotoxins are rife in the gut. Since these are used by the fungi to create an environment free of competitors, it would certainly be a lot easier for them to colonise my gut.

 

[Shanti1]

So you're a fan of the essential oils too then.

Did you notice any improvement to your condition when you got rid of the gut microbes?

I'm not really sure I have anything iffy growing in my gut, but I know that the suspected mycotoxins are rife in the gut. Since these are used by the fungi to create an environment free of competitors, it would certainly be a lot easier for them to colonise my gut.

I actually took oregano oil (from NOW), not the essential oil. Although I'm sure the two share constituents, the essential oil is much more concentrated and you have to be careful with toxicity for internal use.

My cognition, energy, brain fog, skin, mood and PMS improved greatly when I got rid of the candida and eliminated carbs. I was expecting a full recovery, but the brain fog and energy recovery plateaued and then started to worsen again, culminating in the appearance of PEM and ME/CFS diagnosis. I've regained a great deal of function lately taking valacyclovir.

Between a Comprehensive Stool Analysis and a SIBO test, you can get a lot of visibility to if your GI issues are linked to a specific pathogen, general dysbiosis, or an inflammatory process. It is a good place to start if you haven't had that type of testing done.

 

[hb8847]

Which antimicrobials did you use? And are there symptoms associated with candida or mold/fungi infections of the intestines? Latter question aimed at you too @hb8847

The symptoms I did have were severe cognitive impairment, extreme brain fog, depression, PMS, acne, coma-like non-functional state after eating carbs, coated white tongue.

When I got my GI test back with the heavy growth on culture and "many yeast" seen on microscopy, I "carpet bombed" my intestines and had a major die-off reaction with fever for several days.

Over the next several months of no sugar/carbs and antimicrobials my cognition improved, skin cleared up, tongue coating went away and depression and PMS resolved. Later, in 2019, things went down hill again and I developed PEM and official ME/CFS, but my cognition was never as bad as with the candida.

This is so similar to me @Shanti1 it's ridiculous. Particularly the severe cognitive impairment, brain fog, depression etc, and I had all these prior to coming down with ME/CFS. The main differences though are things like the response after eating carbs and the coated white tongue, which I didn't get. And unlike you I did have some intestinal symptoms like bloating and constipation, particularly after certain foods/drinks.

@seamyb it's tough to say which of my symptoms were directly related to the Candida or Intestinal fungus, but when I took Nystatin over a number of months to treat it all of these symptoms got gradually better, particularly the cognitive stuff which was by far the most debilitating. And it would give me Herx reactions which were basically an exacerbation of all the above, and similar to the ones I get now, which it partly the reason why I am keen to persevere through my current experience with the binders.

 

[hb8847]

Since I am going to the trouble of doing Shoemakers steps, It is not a bad idea to do a urinary mycotoxin to make sure I'm not missing something. There is controversy around them because they can pick up dietary sources of mycotoxins and, according to Shoemaker, mycotoxins are commonly found in the urine of healthy individuals, but I think that by doing a low mold diet beforehand viewing the results with a critical eye, they can give good information. I should probably wait until I am off the binders to do it and I'll retest my CIRS markers at the same time. Which urinary mycotoxin profile did you use?

This is interesting, and I have spoken to one doctor who wasn't very complimentary about the urinary mycotoxin profile as a diagnostic tool. Although others do, such as Dr Nathan who reportedly treated several patients with mould/toxin illness, so for the moment I'm erring on the side of trusting them, particularly given my prior experience with gut Candida.

Another thing to note is that Brewer's study noted that 93% of his CFS patients tested positive for urinary mycotoxins, compared to 0% of a healthy control group.

As for the test, I used Biolab which is based in the UK, but I think it sends all its samples off for testing at Great Plains Labs in the US which I think is the one used by many of these doctors in their studies or practice. And yeh I think they advise you to avoid binders for a while, plus maybe some other stuff, although I don't recall them mentioning any foods, although best to ask.

 

[Shanti1]

Another thing to note is that Brewer's study noted that 93% of his CFS patients tested positive for urinary mycotoxins, compared to 0% of a healthy control group.

Brewer's study tested for aflatoxins, ochratoxins, and macrocyclic trichothecenes and they used the lab Real-Time Laboratories.
Dr. Shoemaker actually wrote an entire paper basically arguing against the use of urinary mycotoxins: https://www.survivingmold.com/Publications/Urinary_mycotoxins_10_8_19_RS_published.pdf. I haven't read the whole paper, but if you do a "Ctrl F" for Brewer, you can read Shoemaker's comments on Brewer's findings. My take is that Shoemaker is right that Brewer's documentation leaves something to be desired, but I think jumping to the conclusion that Brewer's results are invalid is drastic, I mean, even with imperfections in methodology, 0 of controls vs 93% of CFS patients is a significant finding, IMHO.

The mycotoxin testing commonly used by practitioners today tests many more than 3 mycotoxins and probably yields more positive findings from food and in asymptomatic individuals than Brewer's findings. BTW, I think a finding from food isn't necessarily a bad thing if you are eating something you may be reacting to and didn't know.

I recently listed to a webinar by Dr. Jill Carnahan on urinary mycotoxin testing. She uses urinary mycotoxin testing but recognized the following challenges:

• False positives due to mycotoxin food exposure (but if you are reacting to food, maybe this isn't a useless finding)
• Both symptomatic and asymptomatic individuals can show elevated urinary mycotoxins, it can be more about an individual’s immune response over urinary levels
• Individuals with CIRS may have challenges eliminating mycotoxins *, or a hyper response, so low urinary levels do not always rule out problems due to exposure

I'm also seeing that Great Plains and RealTime don't have urinary mycotoxin markers for Candida (although candida *might* make gliotoxin, it is questionable). For evaluating candida, the test to order from Great Plains would be the Microbial Organic Acids Test (Tartaric acid and Arabinose would be the markers). Personally, I like the stool culture method.

My take-home is that you want to choose the right lab to run a mycotoxin test and that experienced interpretation that takes into account your symptoms is also important.

Something else to consider is actinomyceses biotoxins. Turns out the "fungus-like" bacterial group of actinomyceses may be just as problematic as mold (or more) when it comes to WDB biotoxins. But I'm guessing, if actinomycese is present, mold is too, so you would still get a positive result.

*this is refering to dysfuction of the MCH complex in the innate immune system, resulting in a failure to activate the aquired immune response which tags the mycotoxin for recognition and removal by the immune system/kidney/liver

 

[Shanti1]

This is so similar to me @Shanti1 it's ridiculous. Particularly the severe cognitive impairment, brain fog, depression etc, and I had all these prior to coming down with ME/CFS. The main differences though are things like the response after eating carbs and the coated white tongue, which I didn't get. And unlike you I did have some intestinal symptoms like bloating and constipation, particularly after certain foods/drinks.

Although there are many causes of brain fog, my thought is to always go for the gut first. Microbial toxins, candida mycotoxins, D-lactic acid, LPS, and cytokines from intestinal inflammation can all lead to mental symptoms. Then there is the theory that the vagus nerve also picks up on intestinal inflammation leading to vagus inflammation / brain stem microglial activation and resulting sickness behavior (there were some interesting animal studies where LPS and cytokines given to animals that had their vagus nerve severed did not exhibit the same degree sickness behavior). I think a lot of brain fog in ME/CFS also has to do with poor oxygen perfusion to the brain/mitochondrial dysfunction as well.

 

[seamyb]

I think where the urinary markers have use is that, given that you suspect mycotoxin illness via herxing from nasal antifungals or binders, elevations in particular mycotoxins will show the ones causing the issue. And who knows, the asymptomatics with elevated aflatoxin, say, may go on to develop cancer and other complications. It doesn't seem difficult to discern methods for accurately measuring these scientifically. Measure levels as people fast and as they eat and get a real good sense of it all. But it just hasn't been done because the medical establishment would rather we were anxious as a result of mass hysteria or some lazy ass shit.

 

[Shanti1]

I think where the urinary markers have use is that, given that you suspect mycotoxin illness via herxing from nasal antifungals or binders, elevations in particular mycotoxins will show the ones causing the issue.

That makes sense to me

And who knows, the asymptomatics with elevated aflatoxin, say, may go on to develop cancer and other complications.

So true, most people would have no clue of aflatoxin exposure and the major health risk it poses!

Measure levels as people fast and as they eat and get a real good sense of it all. But it just hasn't been done because the medical establishment would rather we were anxious as a result of mass hysteria or some lazy ass shit.

Sadly, I don't think the medical establishment has even gotten past Step 1, which is recognizing mold as a contribution to chronic illness.

 

[zuperhero]

hi can anyone help me explain what happened with my sinuses after rinse?

Since onset of cfs i always had problems with sinuses, swelling, sometimes pressure on teeth, 'feeling' them while bending, mucus draining on the back of my throat.
Long time ago I did sinus rinse few times and i remeber that it was always causing unpleasant swelling of nose-mucosa sometimes more pressure from sinuses etc. (btw after any nose-spray i often get swelling of nose-mucosa too)

So after reading the thread i decided to buy set for sinus rinse one more time- plastic bottle with straw inside,
on the first day i made a rinse with around 2,5g(1% solution) salt and 5g(2% solution) of xylitol for 250ml bottle, i manage to blow my nose with a bit of mucus and i got cool feeling for 30min, like a bit more air coming via my nose, after that nothing till i went to bed, after laying down i felt like there is water in my ear (it was not painful or anything just for info, it disappeared next morning)
Next day i made the same mixture but i added extra 2g of edta also (to make 1% solution) maybe it was good % for nasal spray, but it was definitely not good % for sinus rinse XD it was so fkn irritating, that for next 45 min i was just sniffing/snorting my nose to spit out and blow this terrible stuff from my throat and sinuses (everyone who was snorting drugs/tobacco_snuff know the feeling), i even did the second dose, without edta of course , to rinse everything from my sinuses, it was ok, i was just 'feeling'(non in negative way) my sinuses for the rest of the day.
I woke up sick-alike with sinus pain and yellow rhinitis-mucus (usually its transparent) i was a bit weaker than usuall for 1,5 day, it came back to baseline now, but when i squeez my teeth i feel preassure on them comming from my sinuses, so there has to be some inflamation still.

What happen? just irritation? but if it is just irritation why i got yellow mucus from nose and state similar to having cold for one day instead just sinus pain/preassure?

*i was using tap water, filtered first then boiled

 

[Hip]

@zuperhero, you might like to edit your post into paragraphs of around 3 to 5 lines, with a blank line between, as many ME/CFS patients find it hard to read walls of text without such spacing.

 

[xploit316]

For what it's worth I had a lot of Candida in my gut that I treated with Nystatin, and it helped quite a bit.

@hb8847 How are you doing now? Do the candida issues go away completely with Nystatin or do you have to cycle it?

 

[Abha]

For what it's worth I had a lot of Candida in my gut that I treated with Nystatin, and it helped quite a bit. The presence of the Candida alerted my doctor to the possibility I might have mould/fungus elsewhere, and prompted them to order tests for Mycotoxins, which came back positive even though I've gotten rid of practically all the gut Candida. So in my case at least, the presence of Candida in the gut was very much a sign I had more mould elsewhere in my body, or at least it seems so.

@hb8847 I used Nystatin powder back in 1980s and I found it helpful with Candida issues then.It was in a powder form.I tried to obtain it again many years later but was unable to do so.What form of Nystatin are you using and where do you obtain it.?..Thanks