Detection of Mycotoxins in Patients with CFS

[Christopher]

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.

Thanks sound. Yes for me marijuana creates major inflammation for me - why I continue to use it is a psychological addiction issue. But yes it is also possible that I released mycotoxins in my system (if indeed I have any in my sinus to begin with). I took a coffee enema yesterday which seemed to have help push me in the right direction.

Thanks for your concern.

 

[soulfeast]

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

I'm on the sinus protocol with atomized meds. I am referring most likely to meds dripping down into stomach from sinuses or mucus and die off material.

 

[soulfeast]

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.

mast cell inflammation can pass BBB.. I know I have mast cell activity so assuming it's that. Atarax helps.. it's an antihistamine that crosses BBB.

 

[Skiii]

Sorry about the crash, Christopher, I know it definitely happened to me on the protocol, 3 days after a minimal dose.

 

[Skiii]

Finally got in to see a new doctor about the Brewer protocol, he was really great.

I told him about the 36 hour stuffed nose and 6 weeks of lingering inflammation. He said he had one other patient experience it, and never to touch the amphoB again! I will start on a half dose of Nystatin, Muciperin, and atomized nasal steroid with an additional sinus rinse per day once I get back from vacation next week. Not even doing the chelating px to start, he conferred with ASL labs and they want me to start as gently as possible considering my past inflammation.

He also suggested a couple herbs/amino acids for the anxiety that has come along with the die-off, the CSM hadn't seemed to be helping me the way it did before the amphoB. HOwever, I started taking the charcoal again at night and the anxiety and muscle pain decreased, so that is good.

He said my ochratoxin level was the highest he's personally seen (10x the limit at 10.32) and also looked in my sinuses and said, "Woah, It's a war zone in there!"

 

[Forebearance]

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...

Yes, soulfeast, I just woke up this morning feeling really nauseated. I was wracking my brain to think of anything I ate that could have caused food poisoning. But it could also be from mold toxins passing through the gut, I think. I know there are some kinds of mold toxins that make sensitized people vomit.

And considering that I take Nystatin once every four days, and the last time I took it was three days ago, could it even be the medicine that's causing it?

It's been going so well up to now. Maybe it was a honeymoon period. Now my skin is burning a LOT, which could be from toxins being released internally or from me becoming even more sensitized than usual to toxins in my environment. This morning I felt like "I want my mommy'.

I've been needing to take extra potassium and manganese lately. And a little less magnesium.

Christopher, I swallow the excess medicine that drips down the throat.
Redaxe, I can't tolerate NAC or ALA, but it's just as well since I have many silver fillings.
I don't even use the chelating PX because of the heavy metal warnings. I use my salt inhaler instead.

 

[Christopher]

Sorry that this is sort of unrelated, but a year prior to getting sick, I developed a red rash on my chest which responded to antifungal cream. When I moved into the moldy house, the rash intensified, and seemed to spread to my face and scalp. Always the same places - they would respond to antifungal cream but then reappear in the same spot.

Wonder if the sinuses are not the only place where fungus can colonize.

Anyone have a similar experience?

I'm still not touching the sinus treatment since my very bad crash which I'm still experiencing.

I wonder if the Nystatin is as effective as the Amph B.

 

[Ifish]

Sorry that this is sort of unrelated, but a year prior to getting sick, I developed a red rash on my chest which responded to antifungal cream. When I moved into the moldy house, the rash intensified, and seemed to spread to my face and scalp. Always the same places - they would respond to antifungal cream but then reappear in the same spot.

Wonder if the sinuses are not the only place where fungus can colonize.

Anyone have a similar experience?

I'm still not touching the sinus treatment since my very bad crash which I'm still experiencing.

I wonder if the Nystatin is as effective as the Amph B.

Christopher,
My wife said that during her recent appointment with Brewer, he indicated it is appearing more and more that nystantin is equally effective as Ampho B (or something to that effect). Earlly on the big drawback to nystantin was that it took a long time to administer - about 15 mg of volume, which took maybe 30 minutes. However, ASL has now been able to reformulate nystantin so it is about 1/3 that volume and it takes about 10 minutes.

You might just have to take this really slow. I had been doing the treatment every other day since April and I am just now able to do it two of three days.

 

[Christopher]

Thanks fish. I wonder if any of the chelator or antifungal makes it into the bloodstream from the nasal treatment. Like I said, I've never had sinus problems, but definitely gut problems and the recurring skin infections.

 

[Ifish]

Thanks fish. I wonder if any of the chelator or antifungal makes it into the bloodstream from the nasal treatment. Like I said, I've never had sinus problems, but definitely gut problems and the recurring skin infections.

The only light I could shine on this is that Brewer has indicated a significant number of his patients also don't have any sinus symptoms, yet have responded positively to the treatment. I recall on one occasion talking to him about gut symptoms and he indicated he had some patients with gut symptoms that resolved completely with his protocol. I suppose these symptoms might be caused by mycotoxins floating around in the body rather than infection/colonization in the gut. I don't know how it could be proven one way or another. I should mention my daughter has used prescription anti-nausea medicine which has been very helpful.

 

[Christopher]

Yes, soulfeast, I just woke up this morning feeling really nauseated. I was wracking my brain to think of anything I ate that could have caused food poisoning. But it could also be from mold toxins passing through the gut, I think. I know there are some kinds of mold toxins that make sensitized people vomit.

And considering that I take Nystatin once every four days, and the last time I took it was three days ago, could it even be the medicine that's causing it?

It's been going so well up to now. Maybe it was a honeymoon period. Now my skin is burning a LOT, which could be from toxins being released internally or from me becoming even more sensitized than usual to toxins in my environment. This morning I felt like "I want my mommy'.

I've been needing to take extra potassium and manganese lately. And a little less magnesium.

Christopher, I swallow the excess medicine that drips down the throat.
Soundthealarm21, is psyllium soluble fiber? That's the kind of fiber that binds with bile.
Redxe, I can't tolerate NAC or ALA, but it's just as well since I have many silver fillings.
I don't even use the chelating PX because of the heavy metal warnings. I use my salt inhaler instead.

Fore, do you know the relationship between EDTA and mercury? I cannot tolerate ALA either - caused permanent severe gut distress. I think we may have similar problems.

 

[Forebearance]

Christopher, I remember someone on this thread saying that EDTA can set mercury free in the body and it can do more damage by ending up in one's brain. I've read other places that chelation has to be done carefully if one has a problem with heavy metals. But I don't know a lot about it. I haven't researched it because I haven't ever wanted to try chelation.

I bought some Johnson's baby shampoo which I was going to use instead of the chelating PX. I was going to put a drop of it into saline solution and aerosolize that. But the salt inhaler has been going so well that I've just been doing that instead.

Has anyone else experienced light-headedness from this treatment?

 

[Akhess01]

By ampho terrible he is probably referring the delivery of ampho into the bloodstream via IV. In that case it is nasty stuff and very hard on the body. In the Brewer protocol the ampho is delivered to the nasal cavity in an atomized spray. Very little if any amphoB is absorbed into the bloodstream. However it can cause problems such as nosebleeds and irritation. Some patients cannot tolerate it and must switch to atomized nystantin.

Ok FINALLY got med Meds today. @Ifish - I know I have read the protocol posted by you many times but my script seems to be off from the protocol so just wanting to confirm. I'm set for chelating px 2xs a day and ampho b 2xs per day along with an antibiotic 1x per day (for 1 month) and a nasal sinus rinse. Brewers protocol is chelating px and ampho 1x per day correct? How did you work in your antibiotic and for how long? If I recall its chelating px in the am and ampho pm or the other way around? Not sure she I am supposed to use this sinus rinse or the antibiotic. I haven't started anything because I wanted to double check Brewers standard and I need to do my baseline RTL urine test.any help, as always, is appreciated!!!

 

[Ifish]

Ok FINALLY got med Meds today. @Ifish - I know I have read the protocol posted by you many times but my script seems to be off from the protocol so just wanting to confirm. I'm set for chelating px 2xs a day and ampho b 2xs per day along with an antibiotic 1x per day (for 1 month) and a nasal sinus rinse. Brewers protocol is chelating px and ampho 1x per day correct? How did you work in your antibiotic and for how long? If I recall its chelating px in the am and ampho pm or the other way around? Not sure she I am supposed to use this sinus rinse or the antibiotic. I haven't started anything because I wanted to double check Brewers standard and I need to do my baseline RTL urine test.any help, as always, is appreciated!!!

Akhess01,
I can't say what you should do in your particular case since I can't give medical advice. Generally speaking, you are correct that Brewer's base protocol calls for Chelating Px once per day and Ampho B once per day. Assuming you have mold colonization, I feel it is pretty likely that trying to do it twice a day will cause some severe consequences. Brewer told me stories about some folkes that tried this early on, had monster die offs and spent days in bed.

Brewer has advised that he believes the Ampho B should be seperated from everything else by an hour as the Ampho B can bind with other compounds. You should ask your doctor when you should take the antibiotic. In my case I did the Chelating Px in the morning then waited an hour or so to do the antibiotic, then did the AmphoB in the evening. I did this so I'd have the both the antibiotic and the AmphoB in my sinuses about 12 hours each without something else washing it out. Another consideration is that the Ampho B makes me feel worse overall (aside from the side effects) and this gives me the chance to sleep through it. Brewer advised to do the Ampho B a couple hours before bedtime so that the stuffiness could subside before trying to sleep.

 

[Akhess01]

Akhess01,
I can't say what you should do in your particular case since I can't give medical advice. Generally speaking, you are correct that Brewer's base protocol calls for Chelating Px once per day and Ampho B once per day. Assuming you have mold colonization, I feel it is pretty likely that trying to do it twice a day will cause some severe consequences. Brewer told me stories about some folkes that tried this early on, had monster die offs and spent days in bed.

Brewer has advised that he believes the Ampho B should be seperated from everything else by an hour as the Ampho B can bind with other compounds. You should ask your doctor when you should take the antibiotic. In my case I did the Chelating Px in the morning then waited an hour or so to do the antibiotic, then did the AmphoB in the evening. I did this so I'd have the both the antibiotic and the AmphoB in my sinuses about 12 hours each without something else washing it out. Another consideration is that the Ampho B makes me feel worse overall (aside from the side effects) and this gives me the chance to sleep through it. Brewer advised to do the Ampho B a couple hours before bedtime so that the stuffiness could subside before trying to sleep.

Thank you so much for replying. I just wanted to double check about it and see when you were doing the antibiotic. I'm thinking you only did yours for a couple of weeks. Im nervous about getting started because so many on here have not been able to tolerate the ampho b. Did you do a baseline Rtl before starting the protocol and have you done one since to see if your levels have come down or are you just basing recovery on your actual progress?

 

[Ifish]

Thank you so much for replying. I just wanted to double check about it and see when you were doing the antibiotic. I'm thinking you only did yours for a couple of weeks. Im nervous about getting started because so many on here have not been able to tolerate the ampho b. Did you do a baseline Rtl before starting the protocol and have you done one since to see if your levels have come down or are you just basing recovery on your actual progress?

I did have a baseline RTL. If I get to a point that I am symptom free or nearly so, I will consider another test. Based on what Brewer has told me, one needs to have zeros across the board before it is possible to stop the protocol.

There might be other reasons to consider a repeat test. For example, to see how effective saunas are in removing excess mycotoxins.

I am plagued my bacterial sinus infections and so I am on antibiotics, both oral and nebulized, quite often. My daughter has the same issue. She has seen an immunologist who considers these chronic infections to be evidence of an immunodeficiency. She proposes continued use of maintenance antibiotics to prevent reoccurrence. We are considering this route. This notion is also consistent with Brewer's belief that the mycotoxins cause chronic immune suppression. It is our hope that maintenance antibiotics would be temporary (maybe a year or so) and that with the eventual elimination of mycotoxins the immune system would recover.

 

[CFS_for_19_years]

I am plagued my bacterial sinus infections and so I am on antibiotics, both oral and nebulized, quite often. My daughter has the same issue. She has seen an immunologist who considers these chronic infections to be evidence of an immunodeficiency. She proposes continued use of maintenance antibiotics to prevent reoccurrence. We are considering this route. This notion is also consistent with Brewer's belief that the mycotoxins cause chronic immune suppression. It is our home that maintenance antibiotics would be temporary (maybe a year or so) and that with the eventual elimination of mycotoxins the immune system would recover.

When I was having repeated bouts of sinusitis years ago, my allergist told me that recurrent bacterial sinusitis could be a sign of chronic allergies. The treatment she recommended was avoidance of allergens (duh) and allergy shots (immunotherapy). I was allergic to dust, mold, trees, grass, cats, dust mites, etc. Once I began treatment with allergy shots I stopped having sinusitis.

 

[mamakate]

Hi all, this is my first time contributing to this forum. I'll share my experience in case it is helpful to any of you. Ifish, your posts have given us SO much encouragement. Thank you, from the bottom of our hearts!!!

So here I go... My husband is also a patient of Dr. Brewer. We've been seeing him for years for my husband's Lyme disease and chronic pain. We really trust him as a doctor, and are excited about this treatment, namely because we've never seen Dr. Brewer so excited about a treatment, and we are excited to hear the progress many of his patients have had.

With that being said, this treatment is HARD. My husband is one of those patients that's tried doing it twice a day in effort to get better faster, and it is torture. Not worth it. The only good thing is knowing from the die-off that the medicine is working. My husband has been on Nystatin since May, and experienced a crazy amount of fatigue this summer, especially when trying to do it twice a day. The fatigue is quite a bit better now, but it's been quite a roller coaster. It's not been just a gradual uphill climb for us, but instead has been filled with lots of ups and downs. He still experiences lots of pain. We don't know day to day or even hour to hour what to expect. Overall, though, we are hopeful.

My husband has also tried the amphotericin b and itraconazole. He could not tolerate the ampho b because of the nasal irritation. He did ok with the itraconazole.

The other thing that we think really helps him is sauna. Often after sauna he feels better than he does before. He's also on a stict diet, taking quite a few supplements, and occasionally does epsom salt baths.

We've tried a few binders, but we're not sure how much they help. Some binders (like charcoal) have made the situation worse. Thanks to all of you who keep up posting on this forum; I'll continue to watch it!

 

[mallen12132]

Hello everyone,

I have recently been trying to get to the bottom of my own personal CFS issues and discovered this site as well as the subreddit for Toxic Mold Exposure. Based on what I read here, I went and had the Mycotoxin test done by Real Time Lab. My results are here: http://i.imgur.com/Hb3wK6t.png

http://i.imgur.com/Hb3wK6t.png

I have tested positive for Trichothecenes which as i understand is Toxic Black Mold.

I am seeking help in understanding what exactly this means, and how to use this information to improve my health. Currently, I live in a house near New Orleans that flooded during hurricane Katrina. We have had a mold test done in the past, though, and were told there was no mold issue. Is there any way to know whether or not this mold issue is a current issue, or a past exposure? A few years ago I lived in a dorm that had black mold in it for about a short period of time. I am just trying to sort out whether this is a current exposure or one from the past, but I am unsure how to differentiate between the two possibilities. If anyone can lend any help in regards to that i would appreciate it a ton, as I would like to try to figure out if I need to move away from this home or what my best course of action will be.

For what it is worth, I am a 22 year old male, living near New Orleans, I am "otherwise healthy" but living with this illness makes me feel like a 60 year old instead of a 22 year old.

Thank you all so much for the information you have shared so far, I really look forward to learning as much as I can from you all and eventually getting back to good health.

 

[Skiii]

Thanks for sharing Mamakate!

mallen- When did you start getting pain/cfs symptoms? The others on here have posted a lot of info about the best kinds of tests to know if you are currently being exposed. Other than that- have you traveled anywhere else for a week or two and seen improvement? If not you could be colonized, most of us are going on supposition since there isn't an easy way to culture it. As Mamakate mentioned, most of us are confirming our the theory by experiencing die-off when we do the treatment. Do you have a doctor who is current on these issues? I'm sorry you are dealing with this at a young age, I started getting my pain at 22, too (during my exposure).