Detection of Mycotoxins in Patients with CFS

[Ifish]

Ok so the antibiotic is now out of the protocol? I thought he was using to try and knock down staph?

It is correct he does not routinely use Mupiricin with the protocol. Given this, I suppose he does not feel staph is generally or frequently present.

 

[JCamp]

Since Brewer's patients almost uniformly test positive for mycotoxins, he does not view this illness as a detox issue. The fact of a positive test shows that detox is taking place because mycotoxins are being removed with the urine I have not specifically spoke with him about the genetic testing. He once indicated to me that it might be possible to increase output but even slow detoxers will get it all out eventually if the input is taken care of.

Thanks, @Ifish. That's what I gathered from him too since he told me to stop binders (I wasn't noticing any effect from them). But I'm a relatively new patient (just since this past summer) so haven't had many conversations with him.

I'm having a bear of a time getting a hold of him by phone. I'm at 16 weeks of daily ampho b and just looking for anything that will help kick some positive results into gear. Do you know the average time his patients take to see results?

Since I'm one of those "no prior sinus symptoms" patients I'm starting to question whether my mold is colonized elsewhere.

 

[JCamp]

One other question:

I've noticed a lot of the yellow ampho medicine ends up in the "collection chamber" of the nasatouch. About half of the volume, I'd say. This seems like a lot although ASL assures me some is still getting into my deep sinuses. Does anyone else have a lot of leftover volume?

 

[Akhess01]

It is correct he does not routinely use Mupiricin with the protocol. Given this, I suppose he does not feel staph is generally or frequently present.

Interesting. Thanks for the update!

 

[Akhess01]

One other question:

I've noticed a lot of the yellow ampho medicine ends up in the "collection chamber" of the nasatouch. About half of the volume, I'd say. This seems like a lot although ASL assures me some is still getting into my deep sinuses. Does anyone else have a lot of leftover volume?

I find that about half is in my cup as well. I do find it reassuring though that later the next day when I blow my nose I can see ampho b in my mucous

 

[Akhess01]

That's interesting about your b12. I need to get my SNPs before I delve into it anymore. I'm hoping it will synergize with the mold detox. I've left a couple of messages with Brewer about this but haven't heard back.

Do any of Brewer's other patients know his stance on genetic testing and methylation protocols? I'm assuming he thinks it's a secondary issue since he focuses more on input than output.

Methylation is so complicated! If you do your snps make sure you find someone familiar with them after you calculate your raw data who can advise you on supplementation.

 

[Forebearance]

My daughter and I were in to see Brewer a couple of weeks ago.

We did talk some about his protocol for treating mold colonization. He emphasized the importance of staying consistant. Patients should treat every day or every other day for a minimum of 12 to 18 months.

Okay, since Dr. Brewer insists that we should be taking the anti-fungal at least every other day, I will try taking a lower dose every other day. Hopefully my ability to detox can keep up with the pace. Thank you for passing on his advice, Ifish.

 

[Akhess01]

Okay, since Dr. Brewer insists that we should be taking the anti-fungal at least every other day, I will try taking a lower dose every other day. Hopefully my ability to detox can keep up with the pace. Thank you for passing on his advice, Ifish.

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.

 

[Little Bluestem]

Only place I have found the adenosyl b12 is dr amy yaskos store and seeking health

Source Natural makes adenosylcobalamin. It isn’t a real common company, but larger stores might have it. Anabol Naturals calls theirs Dibencoplex and it seems to be less common.

 

[Skiii]

I've been so tired lately, even though I took like 5-6 days off from treatment. Aside from B vitamins, anything else that helps?

Also has anyone had weight gain on this treatment? I know the toxins can cause it, but it's discouraging especially when nothing in my lifestyle has changed.

 

[Christopher]

I've been so tired lately, even though I took like 5-6 days off from treatment. Aside from B vitamins, anything else that helps?

Also has anyone had weight gain on this treatment? I know the toxins can cause it, but it's discouraging especially when nothing in my lifestyle has changed.

any chance of infrared sauna?

 

[andjo]

Can you get the Nasatouch device somewhere online (for us that don't live in the states)? Or is it possible to use a regular nasal spray bottle as delivery device for the Amphotericin?

My lab results as of november 2014:
Ochratoxin A .. 2.09 ppb Positive
Aflatoxin Group .. 0 ppb Negative
Trichothecene Group .. 0.21 ppb Positive

Main symptoms from lungs and sinuses.

 

[Christopher]

I've been so tired lately, even though I took like 5-6 days off from treatment. Aside from B vitamins, anything else that helps?

Also has anyone had weight gain on this treatment? I know the toxins can cause it, but it's discouraging especially when nothing in my lifestyle has changed.

Also the weather pattern in the country is conducive to mold activity so it might just be environmental mold

 

[Christopher]

Thanks, Skii. I had read that also. I tested negative on the mycotoxin panel, but I did have some small amounts of trichothecenes and orchratoxins show up.

Now that I'm doing this protocol, I'm having a devil of a time getting the toxins out of me. First I had to take a lot of molybdenum. Now I'm requiring a lot of potassium. I should probably go get my 23andMe results analyzed using that website that tells you your SNPs.

I've been having sweats also. And a few feelings of depression and anxiety. My brain feels uncomfortable, basically. Taking soluble fiber has helped. I'm guessing that I'm just not a good detoxer.

what is the molybdenum helping with?

 

[Sushi]

So now his protocol is really simplified. Patients treat with Chelating Px and AmphoB. They swich to Nystantin instead of Ampho B if necessary. They reduce treatment if the die off is to great.

My doctor has been following Brewer and just suggested that I try alternating nasal nystatin and EDTA nasal spray--one every other day. Has anyone tried a version like this?

Sushi

 

[psz]

Can you get the Nasatouch device somewhere online (for us that don't live in the states)? Or is it possible to use a regular nasal spray bottle as delivery device for the Amphotericin?.

Check this out http://www.ebay.co.uk/itm/Flaem-Rhi...Apparecchiature_Benessere&hash=item25993a758d

Rgds

 

[andjo]

Check this out http://www.ebay.co.uk/itm/Flaem-Rhi...Apparecchiature_Benessere&hash=item25993a758d

Rgds

That's great, thanks!

 

[mamakate]

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?

 

[JCamp]

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?

Hi @mamakate. I can't say I experience exactly what your husband describes, but I have the same routine except I use ampho b. My symptoms fluctuate randomly and it's hard to tell what causes what but I will keep an eye on the chelating px specifically.

One thing I wanted to share with you is that I spoke to ASL recently - so helpful! - and they suggested saline rinse before each of the two treatments. I've been doing this about a week and it seems like the medicine does get further into my sinuses. I was hesitating to do it since I didn't want to rinse the medicine out and it's difficult to stand but like you, I'm determined to do whatever it takes to get the ball rolling. So something to tweak if you feel like it.

I'm 16+ weeks in and unchanged physically/neurologically. I've always had high anxiety and some bouts of depression but that is worse on the treatment. It may also be due to weather/holidays...as I said, hard to tell. Many symptoms others report as detox are the same symptoms orginating with my condition.

Nonetheless, I am still hopeful. Brewer's nurse repeatedly tells me it takes a very, very long time for some to see improvement.

Best of luck to you and your husband.

 

[mamakate]

Hi @mamakate. I can't say I experience exactly what your husband describes, but I have the same routine except I use ampho b. My symptoms fluctuate randomly and it's hard to tell what causes what but I will keep an eye on the chelating px specifically.

One thing I wanted to share with you is that I spoke to ASL recently - so helpful! - and they suggested saline rinse before each of the two treatments. I've been doing this about a week and it seems like the medicine does get further into my sinuses. I was hesitating to do it since I didn't want to rinse the medicine out and it's difficult to stand but like you, I'm determined to do whatever it takes to get the ball rolling. So something to tweak if you feel like it.

I'm 16+ weeks in and unchanged physically/neurologically. I've always had high anxiety and some bouts of depression but that is worse on the treatment. It may also be due to weather/holidays...as I said, hard to tell. Many symptoms others report as detox are the same symptoms orginating with my condition.

Nonetheless, I am still hopeful. Brewer's nurse repeatedly tells me it takes a very, very long time for some to see improvement.

Best of luck to you and your husband.

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.