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

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Yeah nice, I've been making my own version of xclear for a year or so now. It seems to help marginally with sinusitis. Although I'm currently still catching monthly (if I'm lucky, sometimes fortnightly) viruses from our toddler being in daycare and nothing helps with that.. Terrible.
 

seamyb

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Yeah nice, I've been making my own version of xclear for a year or so now. It seems to help marginally with sinusitis. Although I'm currently still catching monthly (if I'm lucky, sometimes fortnightly) viruses from our toddler being in daycare and nothing helps with that.. Terrible.
Is it just the xylitol and saline you're doing? The one I have has a few essential oils in it too. Has it had any effect on your ME?
 
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Is it just the xylitol and saline you're doing? The one I have has a few essential oils in it too. Has it had any effect on your ME?
Yeah xylitol, saline, and a little grapefruit seed extract to help with sterility. Sadly it hasn't had any effect on my ME, just helps the sinusitis a little
 

seamyb

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So I should probably mention here that I don't recommend inhaling iodine vapour, or at least for longer than a couple of weeks and frequently throughout the day.

I began to get pain and swelling in my throat alongside feeling terrible and a few other symptoms. Seems the absorption of iodine via inhalation is significant.

There were positive things that suggest to me the antimicrobial aspect was helpful. I'm still of the belief that I have a fungal infection of the sinuses and possibly the lungs.

I have now bought an essential oil diffuser and will be trying various essential oils aimed at various aspects of destroying fungi (See images below of the table from this paper).

The diffuser I have vibrates the hell out of water mixed with the essential oils and creates an ultra-fine mist and the oils will get into every aspect of my respiratory system. What could go wrong? No, seriously, what could go wrong, if you know then speak now or forever hold your peace.

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seamyb

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The thing with the iodine is weird, especially given Myhill reported having success with it. Are you convinced it was that and not something else?
Absolutely. Went off it a few times for a few days and every time I went back on it there was that strange pain in my adam's apple and the other symptoms. One symptom was a fluttering in my ear drum. Made sure enough that I've stopped taking something that seemed to be helping my air hunger in the end. Would have quit it a lot sooner had it not been so good for air hunger.

Anyways, essential oils look promising. Lots of different ones and I can use them synergistically whilst keeping the use of any individual one to a minimum. Plus iodine doesn't have the effects on biofilm and other qualities that some of the oils have.
 

hb8847

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I wonder if it might be triggering MCAS symptoms? The random pains in weird places reminds me of my own reaction to certain things - glutathione for example would give me some weird ear stuff too, I know now that's just my MCAS, and different things seem to trigger different reactions, presumably because different chemicals are released by the mast cells.

In the case of Iodine, I wonder again if it's some sort of Herx related to the release of toxins? Either way, you know your own body better than anyone, and if you reckon it's right to stop I'm sure it is. Have you thought about binders? And what about the biofilm nasal spray Brewer used, have you given that up too?
 

seamyb

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I wonder if it might be triggering MCAS symptoms? The random pains in weird places reminds me of my own reaction to certain things - glutathione for example would give me some weird ear stuff too, I know now that's just my MCAS, and different things seem to trigger different reactions, presumably because different chemicals are released by the mast cells.

In the case of Iodine, I wonder again if it's some sort of Herx related to the release of toxins? Either way, you know your own body better than anyone, and if you reckon it's right to stop I'm sure it is. Have you thought about binders? And what about the biofilm nasal spray Brewer used, have you given that up too?
Yeah I'm putting my money on the thyroid on this one. Stakes are too high if it is.

I'm not taking the EDTA any more either - huge reaction off it and hoping to find other things to bust biofilm. I was taking activated charcoal for a while but noticed no difference so that's on pause too. Have to take it 2 hours away from food and at night if you don't want other things to bind with it. So not worth the hassle.

For now, it's essential oils (I can't get over saying that). Gonna try taking it slowly with quite dilute amounts, but if there's fungus in my lungs, it's bound to do something.
 
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I've had a sinus fungal infection for quite awhile. I've been using a prescription compounded Itraconazole sinus irrigation powder in my Nasaline irrigator, which I use instead of a neti pot. The Itraconzole rinse has not rid me of the fungus.

I just got switched to a different antifungal for nasal irrigation use: Amphotericin. So far, so good, in that it has not irritated my sinuses, as I had feared since I have such a sensitive nose and sinuses. The prescribed use is 30 days, twice daily, so it might be awhile before I notice results.
 

seamyb

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I have had a very severe herx from using essential oils. I've been in bed for the last few hours and only now have I been able to focus enough to look at my phone.

Wow. There goes my fear they'll have no effect. I'll try to recover and actually take seriously the low and slow rhetoric.

Holy mother of christ. There are no words for how bad I felt there. It was a glimpse at severe. Hopefully it was a transient effect and not a recurring event.

So yeah, essential oils seem to cause severe neurological illness in small doses. Surely this can only be herx. Surely I should continue but with way smaller doses and frequency. I used a combination of citrus and tea tree because they appear in several parts of the table I posted earlier. Iodine never did anything like this and I presume you have to have a multi-pronged attack including biofilm disruption.

I'm in disbelief, sorry for yacking on.
 

hb8847

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Incredibly annoying for you. I know the feeling too well of trying something and it cause a bad reaction, I'm currently suffering myself from doing the same.

My advice would be to be careful to not assume it's always a Herx - I used to do that constantly, until I had the MCAS diagnosis. It could just be a bad reaction to the substance itself, it could be something triggering your immune system, it could be MCAS, it could be Herx, etc.
 

seamyb

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I've been doing well after a few weeks of inhaling essential oils and also using xlear rescue nasal spray (xylitol and essential oils).

I haven't felt ill for about a week apart from immediately after inhaling oil, which I presume is herx. This herx used to last so long it never went away between doses. Now it lasts an hour or two. It used to be severe and now it's mild.

I haven't had a terrible attack of air hunger in a long time. The usual triggers don't trigger it any more.

I have been quite tired however. Normal tired, not ill. Eyes feeling a bit heavy and I look like I haven't slept in weeks. I think I've swollen lymph nodes in my nose and near the eyes - they have huge dark rings under them.

I've been able to tolerate glutathione and have been taking more of it. I'm not able to say that this improvement isn't because of the glutathione. However, the fact that I'm able to tolerate it now without struggling to breathe, the fact that I have been having herx-like reactions which have been decreasing and the fact that I've been gradually getting better to the point of not feeling ill at all suggest that it could well be that I'm dealing with the underlying cause in my sinuses and lungs.

I've been up and down a lot in the last few months. Iodine made me mild for a few days and then EDTA made me crash. I never recovered fully from that crash. Then taking the oils made me crash further. So I was severe end of moderate when I restarted the oils at a slower pace. I'm now the mild end of mild. I'm not ready to say in remission.

So watch this space.
 
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@Hip
I have used Lugol's iodine and make 1% solution with distilled water.

But now I used hypochlorous acid and it works great as a nasal and mouthwash straight up to kill viral, bacteria and biofilm. This article talks about the biofilm.
https://www.mdpi.com/1422-0067/17/7/1161

I make it myself with an electrolysis machine.
Distilled water, 1g salt, 3/4 tsp vinegar.
Its test at 100ppm of chlorine at 5.0 pH.

If you don't want to make it you can buy it here https://www.amazon.com/BRIOTECH-Oxidizing-Professional-Mouthwash-balanced/dp/B08GY85TTL
 

hb8847

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Have any of you read Dr Neil Nathan's book on mould & toxin illness? Link here

I'd seen it mentioned a few times so decided to check it out. He seems to be highly regarded and he references Dr Brewer and his approach to mould a lot.

I've only read a short amount so far but a few interesting things to note:

1) His approach is very much focused on FIRST using binders to aid the body to detoxify itself, and only then afterwards adding things like antifungals (or presumably antibiotics) to directly attack the offending pathogen. He says going at it immediately with the latter runs the risk of Herx reactions which are harmful to the patient, and do not help them recover. His mantra also seems to be to "go incredibly slowly" with everything, even binders, and suggests that even minor Herx reactions are counterproductive for the patient and a sign you should stop and reduce the amount of whatever you're taking.

He says that binders aren't 100% effective at absorbing toxins, so can "dislodge" more toxins on the way through the body and this is how they can cause a Herx if taken in too high a dose. Specifically the binders he advocates for mold seem to be things like Charcoal, Bentonite Clay, S Boullardi. I thought this might be of interest to some of you who've had bad Herx reactions @Hip @seamyb

2) Another interesting thing he does, and this will probably be quite controversial here, is advocate the use of "brain training" type exercises - DNRS is the one he specifically recommends but he also mentions the Gupta program. He says the former has significantly helped the vast majority of his patients (he says something like only 2 out of 150 didn't get any benefit).

Now, I'm on pretty high alert for people who peddle "brain retraining" type nonsense for ME/CFS, particularly those selling courses for hundreds of dollars that lack any clinical trials. But, I'm also in no fit state to rule anything out in regards to my health. And, there's apparently been a bunch of new findings recently on neuroplasticity, and on the brain's ability to heal the body from a number of seemingly unrelated illnesses. So, who knows. It certainly carries more weight for me that an - apparently - respected doctor in an unrelated field advocates these types of programs for his own patients, but I can't deny I'm still very skeptical about the whole thing given the lack of evidence.

One thing I should note is that Dr Nathan's patients often fit under the ME/CFS banner but more specifically they seem to be ones who are highly sensitive to everything, and he talks about using these DNRS type programs to reduce that sensitivity to a point whereby they can begin to take other treatments that can help, not necessarily that these things will cure patients. Well I am one of those patients - I am ridiculously sensitive to everything, food, medications - and I'm wondering whether there might be some sort of internal "communication" problem between my brain and my immune system that I might be able to help with some of these types of mental exercises? I have no idea whether that even makes any sense.

My sensitivities and reactions to things have gotten so much worse over time, in spite of feeling like I've improved my underlying health situation in regards to things like my gut health (proved by improving stool tests), and it does make me wonder whether some part of my recovery is being hindered by malfunctioning signals in my body or something I can maybe affect with my brain. I'd be interested to hear if anyone's tried something like this and if it's had an effect.

On a wider note I'd be keen to hear peoples' opinions on Dr Nathan, particularly in relation to detoxing from mould, the use of binders, any of that. Have you tried any of his methods? How have then gone?
 
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Have any of you read Dr Neil Nathan's book on mould & toxin illness? Link here

I'd seen it mentioned a few times so decided to check it out. He seems to be highly regarded and he references Dr Brewer and his approach to mould a lot.

I've only read a short amount so far but a few interesting things to note:

1) His approach is very much focused on FIRST using binders to aid the body to detoxify itself, and only then afterwards adding things like antifungals (or presumably antibiotics) to directly attack the offending pathogen. He says going at it immediately with the latter runs the risk of Herx reactions which are harmful to the patient, and do not help them recover. His mantra also seems to be to "go incredibly slowly" with everything, even binders, and suggests that even minor Herx reactions are counterproductive for the patient and a sign you should stop and reduce the amount of whatever you're taking.

He says that binders aren't 100% effective at absorbing toxins, so can "dislodge" more toxins on the way through the body and this is how they can cause a Herx if taken in too high a dose. Specifically the binders he advocates for mold seem to be things like Charcoal, Bentonite Clay, S Boullardi. I thought this might be of interest to some of you who've had bad Herx reactions @Hip @seamyb

2) Another interesting thing he does, and this will probably be quite controversial here, is advocate the use of "brain training" type exercises - DNRS is the one he specifically recommends but he also mentions the Gupta program. He says the former has significantly helped the vast majority of his patients (he says something like only 2 out of 150 didn't get any benefit).

Now, I'm on pretty high alert for people who peddle "brain retraining" type nonsense for ME/CFS, particularly those selling courses for hundreds of dollars that lack any clinical trials. But, I'm also in no fit state to rule anything out in regards to my health. And, there's apparently been a bunch of new findings recently on neuroplasticity, and on the brain's ability to heal the body from a number of seemingly unrelated illnesses. So, who knows. It certainly carries more weight for me that an - apparently - respected doctor in an unrelated field advocates these types of programs for his own patients, but I can't deny I'm still very skeptical about the whole thing given the lack of evidence.

One thing I should note is that Dr Nathan's patients often fit under the ME/CFS banner but more specifically they seem to be ones who are highly sensitive to everything, and he talks about using these DNRS type programs to reduce that sensitivity to a point whereby they can begin to take other treatments that can help, not necessarily that these things will cure patients. Well I am one of those patients - I am ridiculously sensitive to everything, food, medications - and I'm wondering whether there might be some sort of internal "communication" problem between my brain and my immune system that I might be able to help with some of these types of mental exercises? I have no idea whether that even makes any sense.

My sensitivities and reactions to things have gotten so much worse over time, in spite of feeling like I've improved my underlying health situation in regards to things like my gut health (proved by improving stool tests), and it does make me wonder whether some part of my recovery is being hindered by malfunctioning signals in my body or something I can maybe affect with my brain. I'd be interested to hear if anyone's tried something like this and if it's had an effect.

On a wider note I'd be keen to hear peoples' opinions on Dr Nathan, particularly in relation to detoxing from mould, the use of binders, any of that. Have you tried any of his methods? How have then gone?
I tried DNRS for a while, and Gupta a few months prior to it. It did give me a little boost in energy / helped me clear PEM somehow, but I'm not sure if it was just placebo (maybe?).

I think some of the exercises can help get some endorphins going or release other neurotransmitters that can help modulate immune response etc. I'm not sure if "rewiring" has any real traction.

I had tried using DNRS on a second occasion and it helped a bit less than the first, and now it all just feels a bit "stale" - I tried mixing up the phrasing and customising parts but it somehow doesn't feel as fresh as when I first gave it a go.

I didn't buy either program - I downloaded a torrent of Gupta's videos and found a set of subtitles of the DNRS videos that I converted into a text file with a little program I wrote to get rid of the timestamps and other stuff. They are very similar to each other, but DNRS is a little better presented (marginally!).

I should probably add that I have since crashed my boosts from all of the helpful things I have tried and am currently still flared up 2 months into my latest crash..
 

hb8847

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I didn't buy either program - I downloaded a torrent of Gupta's videos and found a set of subtitles of the DNRS videos that I converted into a text file with a little program I wrote to get rid of the timestamps and other stuff. They are very similar to each other, but DNRS is a little better presented (marginally!).
Ooh do you have a link?? I've been looking around for a while but can't seem to find any... maybe they've purged them all from the internet. I really hate the idea of funding scammers, if it turns out that's what they are.

I think some of the exercises can help get some endorphins going or release other neurotransmitters that can help modulate immune response etc. I'm not sure if "rewiring" has any real traction.
Yes this is what I'm assuming it is. I think I read a someone who was informed critique their understanding of neuroplasticity, saying it doesn't work that way. I've also downloaded Normal Doidge's book on the brain that goes into it more, and he talks about a lot of miraculous recoveries to various illnesses by "rewiring" the brain. I'm hoping that'll give me some answers.

I had tried using DNRS on a second occasion and it helped a bit less than the first, and now it all just feels a bit "stale" - I tried mixing up the phrasing and customising parts but it somehow doesn't feel as fresh as when I first gave it a go.
Mind me asking what it entails? I'm assuming it's sort of variants of CBT and meditation (both of which I've done a ton of), and maybe positive affirmations and stuff?

I should probably add that I have since crashed my boosts from all of the helpful things I have tried and am currently still flared up 2 months into my latest crash..
Really sorry to hear that, I hope things turn around for you.
 
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Really sorry to hear that, I hope things turn around for you.
Thank you.

Did you mean a link of the torrent for gupta or to the dnrs transcript? I'll PM you.

Both programs are essentially a system where you do a "sequence" multiple times a day, generally whenever you focus on your symptoms or just as many times in the day as you can. It's some type of variant of saying "stop stop stop", "cancel cancel cancel" etc first, and being like this is a false response, my body is reacting to past traumas etc. I am ok now, I am safe and can return to normal function. Good job yourname, you're doing amazing. I feel myself restoring balance, filling with energy etc. Soon I will be restored to full health.

Essentially something to that effect (I'm paraphrasing), with some hand motions and steps forward and back etc depending on the program. And also they add at the end generally a period of time where you visualise yourself being fully healthy either in older memories, and/or in your current age/life doing activities that you enjoy and being happy.
 

hb8847

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Did you mean a link of the torrent for gupta or to the dnrs transcript? I'll PM you.
Either would be incredible, both if possible? Thanks so much.

Both programs are essentially a system where you do a "sequence" multiple times a day, generally whenever you focus on your symptoms or just as many times in the day as you can. It's some type of variant of saying "stop stop stop", "cancel cancel cancel" etc first, and being like this is a false response, my body is reacting to past traumas etc. I am ok now, I am safe and can return to normal function. Good job yourname, you're doing amazing. I feel myself restoring balance, filling with energy etc. Soon I will be restored to full health.

Essentially something to that effect (I'm paraphrasing), with some hand motions and steps forward and back etc depending on the program. And also they add at the end generally a period of time where you visualise yourself being fully healthy either in older memories, and/or in your current age/life doing activities that you enjoy and being happy.
Oh God... I already feel a bit ill at the thought of having to do any of this...
 
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Either would be incredible, both if possible? Thanks so much.



Oh God... I already feel a bit ill at the thought of having to do any of this...
Haha yes, wait until you're doing it 20 times a day as well. Once you've done that for a few days it feels so forced and stale it's really hard to keep it up.. Not to mention keeping it feeling genuine and doing the imagination parts etc as well..
 

seamyb

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I thought this might be of interest to some of you who've had bad Herx reactions @Hip @seamyb
I've read some of Nathan's stuff on his website. It's interesting and there seems to be justification for what he says. Probably one of the best sources on this stuff, but at the same time there is a significant potential for him to be wrong in a number of places. It's still fringe medicine. It's still without clinical trials and concrete guidelines.

Having said that, I think I may just buy his book. I've had yet another setback when I started holding my head upside down when taking nasal sprays/ oils etc - with the plan of getting it up into other areas of the sinuses. Well I think it worked, because as soon as I did this I lost all my hard-won gains. Breathing issues are back, can't tolerate glutathione and I feel sick again. Not the worst I've ever felt, but worse than feeling great like I had been.

I'd been taking charcoal and was doing well with glutathione on it. I'm going to try it again. I think I've cleared a lot of what was causing me to herx in my lower sinuses, because I was no longer getting herx from upright administration of any of my nasal arsenal. As soon as I began holding my head upside down, it's like I'm back at the start. And the sounds I've been hearing in my sinuses suggest I have a way to go yet.

It's annoying, but at least I have my plan and my hope. Think I'll get Nathan's book too.