Detection of Mycotoxins in Patients with CFS

[soulfeast]

I wanted to follow up on this. I had a complete allergy work up with an immunologist. Twenty one different mold tests were performed. All were negative. I was also tested for a number of seasonal allergies including ragweed and all these were negative as well. Yet every spring and fall my illness is worse. My theory is that allergens cause colonized mold to release mycotoxins as a defensive response. My wife was in to see Brewer yesterday, and she mentioned this to Brewer. He indicated this is a plausable theory. His indicated that many of his patients were significantly worse during this fall season. Hopefully, going forward, the amount of colonized mold will decrease which will in turn reduce the amount of mycotoxin released during allergy season.

I've thought this for a few years since my first sinus surgery with a mold focused ENT. I could feel a rise in activity PSZ summarizes possibilities well:

1. Allergy to ragweed makes us worse.
2. Remaining mold in sinuses is releasing mycotoxins in response to ragweed intruder.
3. Mast cell activation
4. Toxin Synergy theory
5. Cytokine storm

I do believe I have mast cell activation syndrome, but I do wonder about fungus (or possibly bacteria in my case) releasing toxins in response to an intruder. Toxin synergy makes sense as well. There is a storm of activity... most feels mast cell like to me but some symptoms, not sure. I have had very elevated c4a (for what that's worth) and tgf-b1 (which can be caused by mast cells).

ENT ordered another PCR and I have Pseudomonas aeruginosa as very dominant bacteria. PCR before this showed Burkholderia cepacia which is cleared now according to PCR (not sure what factors are involved in PCR results). I've started Cipro with Chelating agent. No fungus was found in this PCR so not treating and honestly, with my reactivity level, I'm good with treating only PA at this point. As I understand, PA is a potent mast cell activator.

My contribution, again... if you have ongoing problems, see an ENT who can scope and test with PCR. The abx Brewer uses is not going to target some of those bacteria.

 

[Christopher]

I've thought this for a few years since my first sinus surgery with a mold focused ENT. I could feel a rise in activity PSZ summarizes possibilities well:

1. Allergy to ragweed makes us worse.
2. Remaining mold in sinuses is releasing mycotoxins in response to ragweed intruder.
3. Mast cell activation
4. Toxin Synergy theory
5. Cytokine storm

I do believe I have mast cell activation syndrome, but I do wonder about fungus (or possibly bacteria in my case) releasing toxins in response to an intruder. Toxin synergy makes sense as well. There is a storm of activity... most feels mast cell like to me but some symptoms, not sure. I have had very elevated c4a (for what that's worth) and tgf-b1 (which can be caused by mast cells).

ENT ordered another PCR and I have Pseudomonas aeruginosa as very dominant bacteria. PCR before this showed Burkholderia cepacia which is cleared now according to PCR (not sure what factors are involved in PCR results). I've started Cipro with Chelating agent. No fungus was found in this PCR so not treating and honestly, with my reactivity level, I'm good with treating only PA at this point. As I understand, PA is a potent mast cell activator.

My contribution, again... if you have ongoing problems, see an ENT who can scope and test with PCR. The abx Brewer uses is not going to target some of those bacteria.

What symptoms do you present to your ENT? I have very little sinus symptoms except a chronic non viral or bacterial feeling sore throat. Just throat inflammation when swallowing.

Was the PCR test from a nasal swab?

Is the cipro oral or nasal?

Thanks

 

[Christopher]

For those of your using the Nasatouch, do you swallow the solution when it drips to your throat, or do you try to spit it out, or do you blow out? If you blow out I think the medicine will not be in the sinuses that much?

 

[consuegra]

For those of your using the Nasatouch, do you swallow the solution when it drips to your throat, or do you try to spit it out, or do you blow out? If you blow out I think the medicine will not be in the sinuses that much?

From what I understand the Nasa-touch is passed back and forth under the nose, one side to the other, while normal breathing or inhaling takes place. We are talking about parts of a minute or two. The patient breathes in the mist which at times might more be a splatter. I believe it is the breathing in of these medicinal vapors that makes things happen deep in the sinuses. And of course the daily or whatever application is important.

Please correct me if I am wrong.

Chris

 

[Ifish]

From what I understand the Nasa-touch is passed back and forth under the nose, one side to the other, while normal breathing or inhaling takes place. We are talking about parts of a minute or two. The patient breathes in the mist which at times might more be a splatter. I believe it is the breathing in of these medicinal vapors that makes things happen deep in the sinuses. And of course the daily or whatever application is important.

Please correct me if I am wrong.

Chris

ASL provides specific instructions. Generally, the device is held up to one nostril while the other is held shut. The button is pushed in short spurts while the individual breathes it in through the one nostril. There is no need to pass it back and forth after each puff as long as both sides end up with similar amount. Some of the medicine washes back out the nose and is caught by the device in a seperate chamber. Some washes down the throat and just goes on down.

The need to blow your nose is inevitable, and it seems like the medicine is lost. However, it is not. I know this because the AphoB is yellow and will cause the nose mucus to be yellow many hours later. I have also used this device with the antibiotic clindamycin which is very bitter. This very bitter taste is noticable hours later, so I know it is still there.

 

[Christopher]

OK thanks. I just started last week with chelator and nystatin. Starting with nystatin instead of amph b. No reaction yet except maybe increased muscle spasms associated with toxic exposure. Whenever I'm exposed to mold/chemical the last year I'll have muscle twitches on my right side. That's happened more often since I started.

 

[Soundthealarm21]

So a rise in mycotoxins is a good thing?

Since mycotoxins are released through urine (and feces) that level shows how much you're currently expelling. It's not the best test in the world because it can give a false negative or make someone think they're almost cleared, but it's the best one we have for now.

 

[soulfeast]

What symptoms do you present to your ENT? I have very little sinus symptoms except a chronic non viral or bacterial feeling sore throat. Just throat inflammation when swallowing.

Was the PCR test from a nasal swab?

Is the cipro oral or nasal?

Thanks

Crazy sinus symptoms. Inflammation that spreads to my brain. Systemic inflammation correlating to sinus inflammation. Not stuffiness, rather a pulsating feeling and other symptoms of inflammation.. hard to explain. Past history of very bad sinus disease requiring surgery.. almost complete opaqueness that first ENT called a white out. Means sinuses were so blocked that fluid had collected and almost completely filled most cavities.

PCR from swab that was inserted past nasal passages. I'm not sure how he was able to do this and my understanding is that previous sinus surgery makes this easier but could be wrong. It was well beyond where sample was taken for marcons. He may have used suction to get it.

Cipro is atomized in Nasotouch along with Chelating Agent (I alternate PX with the regular stuff). PX seems to trigger more mast cell activity for me.

I think I am an exception to the general experience.. though I have heard of others having sinus to brain inflammation.

 

[soulfeast]

ASL provides specific instructions. Generally, the device is held up to one nostril while the other is held shut. The button is pushed in short spurts while the individual breathes it in through the one nostril. There is no need to pass it back and forth after each puff as long as both sides end up with similar amount. Some of the medicine washes back out the nose and is caught by the device in a seperate chamber. Some washes down the throat and just goes on down.

The need to blow your nose is inevitable, and it seems like the medicine is lost. However, it is not. I know this because the AphoB is yellow and will cause the nose mucus to be yellow many hours later. I have also used this device with the antibiotic clindamycin which is very bitter. This very bitter taste is noticable hours later, so I know it is still there.

This has been changed. Now they want you to keep both nostrils open and place atomizer up to one nostril for about 5 seconds then the other, alternating back and forth. Breath normally.

 

[soulfeast]

Curious if anyone has experienced GI issues from either meds, mucous, bio-material? from dead bugs (dead bugs, inflammatory mediators). My gut is a wreck. Nausea, inflammation...

 

[soulfeast]

From what I understand the Nasa-touch is passed back and forth under the nose, one side to the other, while normal breathing or inhaling takes place. We are talking about parts of a minute or two. The patient breathes in the mist which at times might more be a splatter. I believe it is the breathing in of these medicinal vapors that makes things happen deep in the sinuses. And of course the daily or whatever application is important.

Please correct me if I am wrong.

Chris

This is what I was most recently told as well.

 

[Little Bluestem]

I think I am an exception to the general experience.. though I have heard of others having sinus to brain inflammation.

I read somewhere once that sinus infections cause encephalitis more often than most people realize. I now think that some of my 'whole head sinus infections' were really encephalitis.

 

[redaxe]

Curious if anyone has experienced GI issues from either meds, mucous, bio-material? from dead bugs (dead bugs, inflammatory mediators). My gut is a wreck. Nausea, inflammation...

Can you provide some more information; what meds are you on? Is it just after you started a drug? Sounds like it could be a reaction to meds? you better talk to your doctor.

But if you're referring to general CFS symptoms mycotoxins will wreck havoc with the gut because they are inhibiting protein synthesis so any system in the body that has high activity (either cell division/tissue replacement or energy requirement) is going to be hit hardest i.e. nervous system, hypothalamus, immunity, gut etc....

I've harped on about this before but really anyone here who is taking any drug (in particular antibiotics and antifungals) should be on N-acetyl cysteine at at least 1200mg daily if tolerated (preferably in a complex with acetyl carnitine and alpha-lipoic acid).
It has been found that long term antibiotic use does cause inflammatory damage and antifungals are particularly hard on the liver. NAC has been proven to protect the body from inflammatory damage caused by many meds as well as blunting the damage caused by mold and mycotoxins on the body. Dollar wise I've found it's probably the most cost-effective treatment for reducing the severity of some of the misery that this illness causes.
http://www.sciencedaily.com/releases/2013/07/130703160623.htm

 

[Cheesus]

@redaxe I don't think it is a good idea to take ALA unless you are certain that you do not have a problem with heavy metals. If you take ALA at random doses and at random intervals whilst you have heavy metals in your system you will end up constantly redistributing them and could make yourself very, very sick.

 

[redaxe]

@redaxe I don't think it is a good idea to take ALA unless you are certain that you do not have a problem with heavy metals. If you take ALA at random doses and at random intervals whilst you have heavy metals in your system you will end up constantly redistributing them and could make yourself very, very sick.

This interests me because I think I've read it somewhere else, are there any actual documented cases or evidence of this happening?
And doesn't glutathione do the same thing anyway? It's supposed to be a chelator too and everyone universally agrees that glutathione is deficient and one of the most needed treatments for helping CFS/ME patients/

 

[Cheesus]

This interests me because I think I've read it somewhere else, are there any actual documented cases or evidence of this happening?
And doesn't glutathione do the same thing anyway? It's supposed to be a chelator too and everyone universally agrees that glutathione is deficient and one of the most needed treatments for helping CFS/ME patients/

It's an opaque subject due to a lack of sufficient scientific study, made yet more opaque by my lack of sufficient cognitive function! I'm not sure there are well documented cases in the scientific sense, however I do believe there are plenty of anecdotal reports. Here is a site that admittedly relates to DMPS, however DMPS and ALA are often uttered in the same breath as they are both well recognised chelators: http://www.dmpsbackfire.com/reports/default.shtml

I guess the thing with glutathione is that if we are exposed to heavy metals in small quantities glutathione should be able to get rid of it. However if that system breaks down and the metals build up then glutathione might not be ideal either. This is an area of hot controversy, with die-hard fans of Andy Cutler doom-mongering about doing anything other than a Cutler protocol, whilst Drs such as Mercola saying raising glutathione is a good way to chelate metals.

I can't be anymore exact. Sorry! All I know is that I am sick enough to be very careful of what I put in my body, and I am wary enough of heavy metals to act very carefully with anything that can affect them. Who knows what the truth is.

 

[Christopher]

I crashed very very hard lately, unsure of the cause - could be the protocol but there have been other things going on as well. Protocol is on hold for now. Tremendous tremendous inflammation, but I've also been smoking marijuana recently which exacerbates my neurological inflammation. Also some chemical exposure, so unsure what the cause of the latest crash is.

Does anyone who thinks they're improving with the sinus protocol have any MCS problems?

 

[Christopher]

This interests me because I think I've read it somewhere else, are there any actual documented cases or evidence of this happening?
And doesn't glutathione do the same thing anyway? It's supposed to be a chelator too and everyone universally agrees that glutathione is deficient and one of the most needed treatments for helping CFS/ME patients/

tiny doses of ALA caused severe gut and neurological crashes for me, anyway this is off-topic.

 

[redaxe]

Hmmm well I don't know about ALA then. I haven't had any issues with it and I've been taking for nearly a year although it's always been in a complex with glutathione or a glutathione precursor like NAC. I don't have any fillings.

Christopher you mean MCS - Multiple Chemical Sensitivity?

Yes I got hit by that really hard around the start of the year. I was trying to do some painting and the fumes just made me sick. I found I couldn't even walk into supermarkets without a reaction.
Ummm its much better now, I can't exactly say why but around that time I was under the supervision of a wholistic/functional medicine doctor who put me basically every antioxidant, nutraceutical, vitamin that exists in Gods green earth. I was doing a weekly IV Vitamin C/Glutathione treatments. There did seem to be some improvement in many of my symptoms from this, although it never cured me and the cost was too high to warrant doing it long term.

Soon after is when I made the connection with mold so I started down a different direction.
So maybe you can try taking high doses of liposomal C.
Otherwise 2 things that may help is camping out in the desert which may give you some temporary relief but this is unrealistic for many people and it doesn't really do anything for the longterm.
The last thing I can possibly suggest is try doing a salt and water fast for about 3 days (or as long as you find comfortable but less than 2 days and you really get the effect). This means all you can consume is seasalt and water as you desire. I've found that once my body switches into ketosis in an effort to save energy the immune system seems to calm down and inflammation seems to subside. I notice a decrease in brainfog and many weird symptoms seem to alleviate. I also believe it gives the gut some "time out" to repair itself.
There was a study out a few months back that showed that water-fasting for 2-4 days correlates with immune system repair and a decrease in inflammation and there were positive signs that it can help people with damaged or dysfunctional immunity such as chemo patients.
The only thing I find you have to be careful if you do try extended fasting is the symptoms of POTS and adrenal fatigue can get worse so if you start feeling really faint when standing up then it is best to discontinue it. Fasting like this does take practice and it's also worth taking magnesium if you get cramps.

 

[Soundthealarm21]

I crashed very very hard lately, unsure of the cause - could be the protocol but there have been other things going on as well. Protocol is on hold for now. Tremendous tremendous inflammation, but I've also been smoking marijuana recently which exacerbates my neurological inflammation. Also some chemical exposure, so unsure what the cause of the latest crash is.

Does anyone who thinks they're improving with the sinus protocol have any MCS problems?

So sorry to hear that Christopher.

Would pot be a cause to crash that hard? Perhaps the protocol has given you a herx and your body is fighting all the released mycotoxins? I can't say for sure, but if you suspect that to be the case I would make sure to be on some sort of a bile binder (cholestyramine, Bentonite Clay, Psyllium).

I hope you get to feeling better soon.