Detection of Mycotoxins in Patients with CFS

[JCamp]

Thanks for your reply, JCamp. My husband had a good day today, after the last several being terrible, so I'm thinking we've pushed through another layer of the biofilm. At least I hope so! Every time he's suffering like that I'm just praying that it's because we're killing off a lot and good days are coming! I hear you about symptoms seeming to fluctuate randomly. I'm always one that wants to pinpoint what caused what and it's nearly impossible sometimes.

We too have gotten a lot of help on the phone from the ASL people. They are great. That's a good reminder about the saline rinse. When we were in the morning/evening routine he was doing the rinse twice, and now he's backed down to just doing it before the chelating px, but maybe he should do it before the Nystatin too if it will get the meds up there farther.

I agree that the depression and anxiety can get worse on this treatment at times.

We hear the same thing from Brewer's nurse. We're 8 months in on Nystatin (and tried ampho b and itraconazole before that) and we are seeing improvement, but it is SLOW and rocky. Hang in there.

Keep us posted @mamakate.

Another note on saline rinse before ampho/nystatin. Since doing that, the burning from the ampho is nonexistent and I don't blow the yellow medicine out all day. It's like the ampho "sticks" better.

Merry Christmas to you. Your husband is lucky to have you. If you're in KC, I sure hope the sun comes out for us soon!

 

[end]

Does anyone find oral itraconazole and less so fluconazole cause an increase in dyspepsia/nausea?

 

[Forebearance]

Oh wow. I just started at evey third day to try and keep the herx down. So better to do half a dose every other day instead? I discovered today after restarting the protocol that it is the chelating px causing my symptoms as I have been off of the entire thing for over a week and started having my herx symptoms after the chelating px dose this am. I had assumed it was the ampho. Guess not.

Guess what, Akhess01? I tried taking a smaller dose of Nystatin every other day, for two weeks, and it did not work for me AT ALL. I began to sleep less and less, and to excrete less and less, and by the end of the two weeks I was becoming feverish. It was intolerable.

I think my liver was getting stressed out and toxins were backing up in me. I think that it takes my body a full four days to process and excrete each batch of toxins that is released.

So I am going back to what has been working well for me: taking Nystatin every four days.

Dosage makes all the difference between this treatment being counter-productive and intolerable and this treatment being wonderful and helpful!

 

[Forebearance]

what is the molybdenum helping with?

The molybdenum helps those of us who have a mutation in one of the sulphur processing genes. You can tell if you have it, because every time you try to detox you get a headache. So the moly cures my detox headaches.

 

[Akhess01]

Guess what, Akhess01? I tried taking a smaller dose of Nystatin every other day, for two weeks, and it did not work for me AT ALL. I began to sleep less and less, and to excrete less and less, and by the end of the two weeks I was becoming feverish. It was intolerable.

I think my liver was getting stressed out and toxins were backing up in me. I think that it takes my body a full four days to process and excrete each batch of toxins that is released.

So I am going back to what has been working well for me: taking Nystatin every four days.

Dosage makes all the difference between this treatment being counter-productive and intolerable and this treatment being wonderful and helpful!

I'm sorry to hear that! I've been doing ok at every other day so far although I've had a random headache for the last few days. It could be weather related as the temp here just dropped quite a bit. I'm trying to decide now whether to add the antibiotic back to my protocol since Ifish mentioned Brewer stopped using it all together.hope you feel better!!!

 

[Akhess01]

The molybdenum helps those of us who have a mutation in one of the sulphur processing genes. You can tell if you have it, because every time you try to detox you get a headache. So the moly cures my detox headaches.

How much do you take and how often? I supposedly have sulphur issues due to a CBS mutation but I never noticed any issues with sulphur foods.

 

[Forebearance]

How much do you take and how often? I supposedly have sulphur issues due to a CBS mutation but I never noticed any issues with sulphur foods.

Hi Akhess01! I have a bottle of Angstom Minerals molybdenum and I take a swig (about 1 Tablespoon) every time I get a detox headache. In addition, I usually take a swig every morning with my regular vitamins.

Edited to add: It looks like a Tablespoon of my liquid contains 150 mcg of molybdenum. That's 200% of the rda for molybdenum. But I seem to need that much.

I don't seem to have any restrictions on what I eat because of the sulphur mutation.

Thank you for the good wishes! I am feeling a lot better now. I am so glad to hear that you're doing okay on your customized version of the protocol.

 

[Ifish]

Here's a question for those of you that have been on the treatment a while. My husband has experienced some improvement on the protocol, and is having some good days, though it's still really a roller coaster. Just in the last few days, he's started having herx reactions right after taking the chelating agent. He'll be completely exhausted after taking it. He usually takes the antifungal an hour or two later, and usually it's during the night or the next morning that he'll feel the worst. But now it seems like chelating agent is making him herx as much as the antifungal. Does this mean we're finally breaking through some of the tough layers of the biofilm? Is this maybe a sign that we're getting toward the "end" and he's going to start feeling better more often soon? I'm looking for some hope here. Anyone else have a similar experience?

A great difficulty with the protocol is trying to understand what is happening and knowing when to make adjustments. It is difficult to understand when you are having a die off reaction or when you are reacting to either the antifungal medication or the Chelating Px. A third possibility is that a bacterial infection has taken hold.

We have learned a hard lesson these last few months. We began the protocol in April, started getting better around July then the three of us (my wife, youngest daughter and I) all got bacterial infections in August. Despite that, we continued to get better for while, but then things got worse. My wife eventually got her bacterial infection under control but my daughter and I became much worse from about mid-October until recently. We went on numerous rounds of antibiotics to no avail. I became about as bad as I have ever been.

Thankfully we were able to turn things around. My ENT had commented that the reason I couldn't overcome the sinus infection was because I had so much inflammation which might be rendering the antibiotics ineffective. I asked him if the Ampho B might be causing the inflation and he said it possibly could. Later, my wife and I realized that she became better some time after she had switched from using the Ampho B to Nystantin.

A few weeks ago my daughter and I stopped everything - the antibiotics, the Ampho B and the Chelating Px for several days. We then switched over to Nystantin every other day and started treating the sinus infection with Levaquin. We didn't realize that, even though we felt we were tolerating the Ampho B just fine, it was actually causing a great deal of inflammation which was effectively preventing us from clearing the bacterial infection. We recently completed the round of Levaquin and we are doing better. Just stopping the Ampho B made me feel better, even before starting the Levaquin. It is noteworthy that we had used this antibiotic without effect previously, and it started working only when we stopped using the Ampho B.

Brewer has indicated to me that some people do not tolerate the Chelating Px and he is treating some patients without it. Time will tell whether this can be effective.

So here is my take away from all of this:

1. Even if you tolerate the Ampho B ( or maybe the Nystantin or Chelating Px) it might be causing inflammation.

2. The inflammation might be making you feel worse in and of itself, and/or it might be preventing you from clearing a bacterial infection.


Even though the Nystantin probably is not causing a great deal of inflammation, I've decided to continue every other day treatment rather than daily in an effort to minimize inflammation and help keep bacteria under control. We are also starting a maintenance dose of azithromycin prescribed by our immunologist.

I came across a very informative article that indicates that sinus fungal growth can cause damage which reduces the ability to control bacteria. http://www.sinuses.com/md.htm

"Fungal growth was found in washings from the sinuses in 96% of patients with chronic sinusitis. Normal controls had almost as much growth, the difference being that those patients with chronic sinusitis had eosinophiles which had become activated. As a result of the activation, the eosinophiles released MBP (Major Basic Protein) into the mucus which attacks and kills the fungus but is very irritating to the lining of the sinuses. It is believed that MBP injures the epithelium and allows the bacteria to proliferate. An assay has been developed for major basic protein (MBP) which may be helpful for evaluating sinusitis due to fungal disease."

We lost a great deal of time and went through some dark days to figure this out. I'm hoping others can avoid this scenario. We are feeling better again (though not as well as a few months ago) and I feel like things are back on track.

 

[cigana]

"Fungal growth was found in washings from the sinuses in 96% of patients with chronic sinusitis. Normal controls had almost as much growth, the difference being that those patients with chronic sinusitis had eosinophiles which had become activated."

I wonder if that is the reason PWC's are made ill by mold. If (for whatever reason) the immune system is already activated, that would lead to an undesirable reaction to the presence of fungus.
Yet another interesting interaction between mold and bacterial infections.

 

[Skiii]

Ifish, that is what happened to me. I was using the Ampho B, got a head cold during it, and it just felt like I was super stuffy and inflamed for 3 full weeks, with lingering stuffiness for weeks even after that. I'm lucky it didn't end up a sinus infection (as I get them fairly often).

Right now the mupirocin is causing a great deal of inflammation, I always have to use a diluted afrin spray after, and I'd rather not continue it. I have a follow-up appt on the 15th.

What about the chelating PX are people not tolerating? Inflammation or die-off symptoms? I'm not on it currently because of the horrendous inflammation on ampho, but assume that since I'm doing ok now we might try it again.

 

[JCamp]

A great difficulty with the protocol is trying to understand what is happening and knowing when to make adjustments. It is difficult to understand when you are having a die off reaction or when you are reacting to either the antifungal medication or the Chelating Px. A third possibility is that a bacterial infection has taken hold.

We have learned a hard lesson these last few months. We began the protocol in April, started getting better around July then the three of us (my wife, youngest daughter and I) all got bacterial infections in August. Despite that, we continued to get better for while, but then things got worse. My wife eventually got her bacterial infection under control but my daughter and I became much worse from about mid-October until recently. We went on numerous rounds of antibiotics to no avail. I became about as bad as I have ever been.

Thankfully we were able to turn things around. My ENT had commented that the reason I couldn't overcome the sinus infection was because I had so much inflammation which might be rendering the antibiotics ineffective. I asked him if the Ampho B might be causing the inflation and he said it possibly could. Later, my wife and I realized that she became better some time after she had switched from using the Ampho B to Nystantin.

A few weeks ago my daughter and I stopped everything - the antibiotics, the Ampho B and the Chelating Px for several days. We then switched over to Nystantin every other day and started treating the sinus infection with Levaquin. We didn't realize that, even though we felt we were tolerating the Ampho B just fine, it was actually causing a great deal of inflammation which was effectively preventing us from clearing the bacterial infection. We recently completed the round of Levaquin and we are doing better. Just stopping the Ampho B made me feel better, even before starting the Levaquin. It is noteworthy that we had used this antibiotic without effect previously, and it started working only when we stopped using the Ampho B.

Brewer has indicated to me that some people do not tolerate the Chelating Px and he is treating some patients without it. Time will tell whether this can be effective.

So here is my take away from all of this:

1. Even if you tolerate the Ampho B ( or maybe the Nystantin or Chelating Px) it might be causing inflammation.

2. The inflammation might be making you feel worse in and of itself, and/or it might be preventing you from clearing a bacterial infection.


Even though the Nystantin probably is not causing a great deal of inflammation, I've decided to continue every other day treatment rather than daily in an effort to minimize inflammation and help keep bacteria under control. We are also starting a maintenance dose of azithromycin prescribed by our immunologist.

I came across a very informative article that indicates that sinus fungal growth can cause damage which reduces the ability to control bacteria. http://www.sinuses.com/md.htm

"Fungal growth was found in washings from the sinuses in 96% of patients with chronic sinusitis. Normal controls had almost as much growth, the difference being that those patients with chronic sinusitis had eosinophiles which had become activated. As a result of the activation, the eosinophiles released MBP (Major Basic Protein) into the mucus which attacks and kills the fungus but is very irritating to the lining of the sinuses. It is believed that MBP injures the epithelium and allows the bacteria to proliferate. An assay has been developed for major basic protein (MBP) which may be helpful for evaluating sinusitis due to fungal disease."

We lost a great deal of time and went through some dark days to figure this out. I'm hoping others can avoid this scenario. We are feeling better again (though not as well as a few months ago) and I feel like things are back on track.

@lfish thank you so much for the update. I was just wondering today whether I should take a break from ampho b. I've done it daily since August and I'm only getting weaker. I'm so weak I'm having trouble turning over in bed and holding a glass of water. I tell brewer I'm "tolerating" it but I wonder how risky it could be to take a few days off. My nasal inflammation is tolerable but systemically there could be inflammation from the ampho. I'm very sensitive to meds orally but brewer thought id be ok with the ampho nasally.

I don't see brewer again until February (my six month mark) but I'm wondering if I should push to get in sooner.....

 

[Ifish]

@lfish thank you so much for the update. I was just wondering today whether I should take a break from ampho b. I've done it daily since August and I'm only getting weaker. I'm so weak I'm having trouble turning over in bed and holding a glass of water. I tell brewer I'm "tolerating" it but I wonder how risky it could be to take a few days off. My nasal inflammation is tolerable but systemically there could be inflammation from the ampho. I'm very sensitive to meds orally but brewer thought id be ok with the ampho nasally.

I don't see brewer again until February (my six month mark) but I'm wondering if I should push to get in sooner.....

Brewer has said to me that fungus grows slowly and a few days off doesn't hurt anything. It's a marathon. I'd take a few days off. He had also told me that every other day is frequent enough, so maybe you should consider a slower schedule.

 

[Ifish]

Ifish, that is what happened to me. I was using the Ampho B, got a head cold during it, and it just felt like I was super stuffy and inflamed for 3 full weeks, with lingering stuffiness for weeks even after that. I'm lucky it didn't end up a sinus infection (as I get them fairly often).

Right now the mupirocin is causing a great deal of inflammation, I always have to use a diluted afrin spray after, and I'd rather not continue it. I have a follow-up appt on the 15th.

What about the chelating PX are people not tolerating? Inflammation or die-off symptoms? I'm not on it currently because of the horrendous inflammation on ampho, but assume that since I'm doing ok now we might try it again.

He wasn't specific with me on that. I assume he was talking about intolerance of Chelating Px rather than die off. With die off you'd want to manage it rather than stop using it altogether.

 

[Skiii]

Brewer has said to me that fungus grows slowly and a few days off doesn't hurt anything. It's a marathon.

Ah, reassuring to hear that. That's what I was wondering. Thanks for everything, iFish.

 

[Skiii]

Ok my Brewer protocol friends, talk me into a FIR sauna....

 

[Ifish]

Ok my Brewer protocol friends, talk me into a FIR sauna....

Why not do 10 minutes or less, give it a couple of days and see how you do? I think it makes most sense to find something you can do consistantly and stay with it.

 

[Skiii]

I mean talk me into buying one

 

[Soundthealarm21]

I mean talk me into buying one

https://healthandmed.com/fir-real-p...NgdUaolh_V7U5kYyvCX7ghjtUnYzAg-wGQxoCNZPw_wcB

For the low low price of just 259.98 + S&H this FIR-Real Portable Far Infrared Sauna + Sample Concentrate Trace Minerals could be yours! You heard right folks! Just 259.98 + S&H! This is the same product seen on the popular daytime TV show The View!

 

[mamakate]

Ok my Brewer protocol friends, talk me into a FIR sauna....

We actually visited with Brewer this week and talked at length about sauna treatment. He talked about how toxins likely settle deep in your tissues, and sauna is the way to get them out. He mentioned a study done by a fellow mold doc in which 10 patients with mold toxins all used the same sauna for 30 minutes. They tested their urine for mycotoxins before and after the sauna, and in each patient the amount of toxins was greater after the sauna. This indicates that the sauna helps draw them out.

Brewer said that many of his patients have reported success with sauna, and it seems to work best if you do it every day. My husband has been doing it twice a week, and it seems to help. We are considering buying a portable sauna similar to the one you just posted, Soundthealarm21, for convenience so he can do it every day. Brewer also said he just talked to a patient who uses one that's more like a blanket or sleeping bag and they think it works well too.

 

[Soundthealarm21]

We actually visited with Brewer this week and talked at length about sauna treatment. He talked about how toxins likely settle deep in your tissues, and sauna is the way to get them out. He mentioned a study done by a fellow mold doc in which 10 patients with mold toxins all used the same sauna for 30 minutes. They tested their urine for mycotoxins before and after the sauna, and in each patient the amount of toxins was greater after the sauna. This indicates that the sauna helps draw them out.

Brewer said that many of his patients have reported success with sauna, and it seems to work best if you do it every day. My husband has been doing it twice a week, and it seems to help. We are considering buying a portable sauna similar to the one you just posted, Soundthealarm21, for convenience so he can do it every day. Brewer also said he just talked to a patient who uses one that's more like a blanket or sleeping bag and they think it works well too.

Haha I urge people to do their research! I just picked the second one on google mainly because it had the "as seen on TV" sign to make the joke a bit funnier

I am not endorsing said Sauna!