Is anyone doing Dr. Joseph Brewer's protocol?

[Forebearance]

Hi everyone!
I'd like to start a thread to discuss people's experiences with Dr. Joseph Brewer's treatment protocol for ME/CFS.
The best way to begin it would be to post links to his three published papers.
I need your help with this, because the computer I'm using does not allow me to copy and paste.

His papers are titled:
"Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome" (2013)
"Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit? (2013)
"Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mcyotoxins: An Observational Analysis" (2015)

There is also a paper written by I.H. Grant titled:
"Neurological Disease After Mold Exposure, Immune Risks & Response to Biofilm Focused Antifungal Therapy"
Dr. Brewer and his protocol have been mentioned on blogs by the CFS Patient Advocate and the Better Health Guy.
Dr. Neil Nathan of Gordon Medical Associates has interviewed Dr. Brewer on his online radio program.

 

[Who Me?]

@Forebearance Can you sum up Brewer's protocol/theory here for dummies? I can't even think straight let alone read a bunch of technical stuff.

No copy and paste? Are you a savage? Lol. Can't find the 3rd paper

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920250/

http://www.medicalresearchjournal.org/index.php/GJMR/article/view/925

http://www.icaaconline.com/php/icaac2013abstracts/data/papers/2012/M/2012_M-1063.htm

@Forebearance Ok it's here

 

[Forebearance]

Thanks, @Who Me?
Ha ha! I'm not a savage, just a homeless health refugee whose only computer access is the "kiosks" in hotel lobbies.
The 3rd paper is in a journal called the Global Journal of Medical Research. It looks like it can be found on a website called globaljournals.org
Yes! If someone can find that last link, I will be happy to summarize the protocol for you.

 

[Who Me?]

Wow @Forebearance can't imagine.

I'll try to look later unless someone else can find it. Dr Google didn't know it, or I didn't see it.

 

[Remy]

There is also a paper written by I.H. Grant titled:
"Neurological Disease After Mold Exposure, Immune Risks & Response to Biofilm Focused Antifungal Therapy"

I was unable to find this paper at my university library, unfortunately.

 

[Cort]

Thanks, @Who Me?
Ha ha! I'm not a savage, just a homeless health refugee whose only computer access is the "kiosks" in hotel lobbies.
The 3rd paper is in a journal called the Global Journal of Medical Research. It looks like it can be found on a website called globaljournals.org
Yes! If someone can find that last link, I will be happy to summarize the protocol for you.

Homeless! Sorry to derail this but have you thought about getting a van...and living in that. That's what I do most of the time....It's pretty cool actually. You can get a hotspot and use that.

 

[Forebearance]

Thanks you guys!
I've been aware of your living situation for a while now, Cort. Sorry you have to go through this too. I've been practicing a mold avoidance lifestyle for nearly 8 years, and I've been homeless for the past 3-4 years, so I've tried a lot of living situations. A van doesn't work for me, but i'm glad it does for you!

Okay I'm going to type the link out by hand, and hope it's right:
https://globaljournals.org/GJMR_Volume15/5-Intranasal-Antifungal-Therapy.pdf

 

[Who Me?]

@Forebearance I think I know who you are from PR. I can't remember if you used the same name there but didn't you worry about mold in your car or something? You were looking for anti fungal sprays for inside.

Was that you?

 

[Forebearance]

Here's the story of this protocol as I know it: (correct me if this is wrong)

Dr. Brewer is an ME/CFS specialist in Kansas City. He is one of the good ones, because he listens to his patients and learns from them. He is always on the lookout for the latest treatment that might help his patients. For example, he was one of the first doctors to prescribe Rich Van Konynenberg's simplified methylation protocol.

Apparently a few years ago Dr. Brewer became aware of the patients and doctors who have been saying that they think mycotoxins are involved somehow in ME/CFS. He started asking his patients if they had ever been exposed to a moldy building. He was surprised how many said yes. So he decided to test a group of his patients for mycotoxins in their urine.

Of the group he tested, almost all of them had enough mycotoxins in their urine to register as positive on the test. There were only a few people who were negative. They were not excreting enough mycotoxins to be unusual. Later on he figured out that most of those few people were just really slow detoxers.

He came up with a theory. What if people with ME/CFS have an internal source of mycotoxins? Where in the human body could toxin-producing fungi be hanging out? What if it is living in a bioflim in the sinuses? (a biofilm is like a protective layer of crud)

So he gathered a group of his patients who wanted to be his guinea pigs and who were sure that they were not currently living in a moldy home. You shouldn't do this protocol if you are currently living in a place with a mold issue. He started out by prescribing them three things:

1. A NasaTouch machine
2. an antifungal drug (Amphotericin-B or Nystatin)
3. a chelating agent

A NasaTouch machine is an aerosolizer. It delivers medicine deep into the sinuses. At first he had his patients use the NasaTouch machine to administer a dose of the chelating prescription every morning and a dose of the Ampho-B every evening. The chelating prescription breaks up the biofilm, which has metals in it. Sure enough, it worked. Some people began to feel better in terms of their ME/CFS symptoms.

But right from the beginning he has been tweaking this protocol, using feedback from patients. Ampho-B is a really strong drug, and it can produce intolerable side effects. So he had his patients experiment with taking it every other day, or taking a half-dose of it.

Eventually he tried prescribing his patients Nystatin instead of Ampho-B. They are both drugs that are made out of bacteria which kill fungi. But Nystatin is much easier to tolerate. Again he let his more sensitive patients experiment with taking it less often, or in smaller doses.

When you send bacteria up into your sinuses to kill fungi, it starts a war. Fungi release toxins as they are killed. So the limiting factor of this treatment is how fast a patient can detox the garbage it produces. You can only do it as fast as you can detox.

So Dr. Brewer has been suggesting that his patients use a Far-Infrared Sauna to help them detox more through the skin. He has been using folate and B-12 to help patients detox faster.

In general, his published papers are lagging behind what he is doing currently with his patients. At first he had some patients who felt completely well after a year or two of treatment. But now he is realizing that it is going to take some people longer than that. And now he is saying that maybe the chelating agent is not neccessary for some people. And now he is saying that he thinks Nystatin is just as effective as Ampho-B. It keeps evolving.

You don't have to be a patient of Dr. Brewer to do his protocol. All you have to do is find a doctor who will prescribe you the three things from the Imprimis Pharmacy. (It used to be called the TAG pharmacy) He prescribes 50,000 IU capsules of Nystatin. You will have to ask the pharmacy about the chelating prescription. I'm not sure what the dosage of that is or what it is officially called.

When you take a dose of Nystatin, you do this: Mix up some saline solution. Open the capsule and dissolve the contents in 5 ml of saline solution. Put it in the NasaTouch machine and administer it. Wash the NasaTouch parts that are washable.

 

[Who Me?]

@Forebearance I think nystatin is 500,000 iu and you can get those overseas I think. I forget which pharmacy but @Strike me lucky will know.

I have an rx for tablets and I can't find a pharmacy that even has it so I may just buy it from somewhere else.

Can you be more specific about the "chelating" agent or did I miss where you said what it was.

@Remy has an infra red sauna. She and @Wayne talk about it on another thread.

 

[Forebearance]

Hi @Who Me?
Yes, that was probably me on the other forum. I'm Forebearance everywhere.

This treatment is technically considered a topical application of Nystatin. So the formula and dose are different from the oral pills.
I would suggest that one should use the topical version and no more than the dose Dr. B uses. Right now there are only a couple pharmacies in the country that are compounding it, speciifically for patients doing this sinus protocol. The other one is the Woodland Hills pharmacy in Woodland Hills, CA. Both pharmacies do mail order prescriptions.

I haven't tried the chelating agent myself. I decided against it because I have a lot of silver fillings. I thought that if the Nystatin alone didn't do anything for me, I would try using a drop of Johnson's baby shampoo in distilled water, which is a very mild chelating agent. But it turned out that the Nystatin alone works great on me. You will have to ask the pharmacy about it, or else find a patient who is using it. Sorry I can't help.

Oh yeah, I saw that FIR sauna thread. They sound great!

 

[Who Me?]

I know a about woodland pharmacy. They have BEG spray. I think any decent compounding pharmacy can do it if they have the recipe. And it there's no drugs in it maybe you can get it without an rx.

I thankfully don't have major sinus issues but strike me lucky does and he's talked about making his own sinus stuff.

When I did have sinus infections my NP prescribed some crap that teitlebaum uses. It was a total waste of money.

I think anyone could get nystatin caps or the powder and make their own formula. I mean the odds of finding a doc who does this protocol or pretty slim I would think.

Yet another way to kill critters.

 

[Forebearance]

I'm so glad I tried this treatment, even though I didn't appear to have any major sinus issues.
I've been doing it for 1 1/2 years, and it continues to improve my health. I love that it works on people who have been sick a long time. I love that it is so adjustable. You can slow it down to match your body's rate of detox, and it still works, which is kind of a miracle. I love that it feels like it is addressing the cause of my illness. Or maybe the last piece of the puzzle.

It has changed my life.
Thank you, Dr. Brewer, and thank you to his courageous patients.

Dr. Jarred Younger, would you please look into the theory behind this treatment?
You seem like the best person to research it, since you have already been researching elements of Chronic Inflammatory Response Syndrome, like cytokines and Leptin. Thank you in advance.

 

[Forebearance]

I seem to be going through some kind of phase of healing, that I think is caused by this protocol, that is causing me to need lots of magnesium, zinc and molybdenum. Minerals seem to be really important in the detoxing process, at least for me.

 

[Forebearance]

After doing this for a year and nine months, I seem to need a larger dose of the Nystatin.
(Of course, I'm still doing a lot less than anybody else is, probably.)
It felt like it wasn't doing anything any more, and one toenail that turned white at first is back to being yellow, so I took that as a sign I need more.
And it seems to be working great now! Woo hoo!

 

[Forebearance]

Something to add to this:
Dr. Brewer insists that his patients on this protocol use a FIR sauna to help get the extra toxins out of their bodies.
This protocol seems to generate extra toxins, like every protocol that kills critters.

I've never been able to tolerate a FIR sauna very well, but I finally found something I can tolerate: an ionic footbath. It seems to help get the toxins out of me, and that is helping a lot with tolerating this treatment. I am just doing it for 15 minutes at a time, every four days. It's a start!

 

[Hip]

I've been doing it for 1 1/2 years, and it continues to improve my health.

@Forebearance, in terms of the improvements in your ME/CFS, where would you say you were on the ME/CFS scale of mild, moderate or severe before starting the Brewer protocol, and where are you now on this scale, after 1.5 years doing the protocol?

Dr. Jarred Younger, would you please look into the theory behind this treatment?
You seem like the best person to research it, since you have already been researching elements of Chronic Inflammatory Response Syndrome, like cytokines and Leptin. Thank you in advance.

I have recently being reading about the mitochondrial dysfunction found in ME/CFS patients by Myhill, Booth and McLaren-Howard. These researchers found that various aspects of mitochondrial function and energy metabolism are blocked or dysfunctional in ME/CFS, and they think that xenobiotic toxins which adversely affect mitochondrial function may play a role in this blocking.

So then it occurred to me that perhaps some of the mycotoxins that Dr Joseph Brewer found in ME/CFS patients might possess mitochondrial blocking or inhibiting affects, in which case, it could explain how these mycotoxins may play a causal role in ME/CFS.

After a bit of Googling, I discovered that 1 of the 3 mycotoxins that Dr Joseph Brewer found in ME/CFS, namely ochratoxin A, does indeed possess mitochondrial blocking affects; it inhibits mitochondrial transport carrier proteins. See this paper:

Ochratoxin A, an Inhibitor of Mitochondrial Transport (full paper here).

Dr Brewer found ochratoxin A in 83% of ME/CFS patients (as well as macrocyclic trichothecenes in 44% of patients, and aflatoxins in 12% of patients).



EDIT: after checking Dr Brewer's papers, he does actually himself propose this idea of mitochondrial damage from mycotoxins (I should have fully read his papers!):

In vivo and in vitro studies have demonstrated that mycotoxins cause mitochondrial dysfunction.

Aflatoxins alter mitochondria as follows: mitochondrial DNA adducts, inhibition of protein synthesis, pleomorphism, disruption of cristae, membrane damage and induction of apoptosis.

Trichothecenes have multiple inhibitory effects that include oxidative stress, apoptosis, inhibition of protein, RNA and DNA synthesis, opening of phosphorescent Pt(II)-coporporphyrin (PtCP) and loss of transmembrane potential and mitochondrial translation.

With respect to OTA [ochratoxin A] the primary thrust has been detecting its role in urinary tract and kidney diseases. However, the research into kidney diseases has shown that OTA is also a mitochondrial poison. Mitochondrial abnormalities resulting from OTA include membrane swelling, disarray of cristae, loss of transmembrane potential, inhibition of succinate cytochrome c reductase and succinate dehydrogenase and inhibition of succinate-supported electron transfer, and activities of the respiratory chain. The toxicity of OTA appears to result from oxidative stress leading to nuclear DNA damage, cytotoxicity and apoptosis. Thus, it appears that mitochondrial dysfunction may be correlated with the presence of CFS and other symptoms in these patients.

We present the hypothesis that mitochondrial dysfunction is a possible cause of the health problems of these patients. The mitochondrial dysfunction may be triggered and accentuated by exposure to mycotoxins.

Source: Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome

 

[Forebearance]

Hi @Hip!

I've been doing this protocol for a little over 2 years now. I was a moderate case of ME/CFS for the first 18 years, and then after starting mold avoidance I fell somewhere between the mild and moderate level, as described in the post you referenced. And now I'm still somewhere between mild and moderate.

So this treatment has helped just a little, but it's caused a significant increase in my quality of life. You might know already that living a mold avoidance lifestyle can be very difficult. I was out of places to sleep when I began the Nystatin, and it reduced my level of reactivity enough that I have been able to tolerate some buildings.

So for me it has made the difference between being forced to live in a tent and being able to sleep indoors in a bed. That has been huge. I can go out 6 out of 7 days a week and do things for 2-4 hours. I get to eat in restaurants and go to see movies. I rarely take naps. I can take care of myself. But I still don't work.

Does that help?

I should add that i've been doing this treatment incredibly slowly. Much more slowly than most people. Over the two years I've done it, I've been seeing effects that look like a build-up of toxins in me. (dark circles forming under eyes, weight gain, joint pain, etc.) I think it was because I couldn't detox the extra toxins being released internally. But now that I've found a way to help get the extra toxins out, I think I may start to see some more dramatic results.

Thanks for the info about the Orchratoxin A study!
it would be so nice if the observations by practicing physicians and the research would come together to make some kind of coherent picture!

In the meantime, I hear that Dr. Neil Nathan has become interested in Dr. Brewer's treatment, and those guys have been comparing notes about it. Dr. Nathan used to work in Dr. Eric Gordon's practice in Santa Rosa, but he recently moved out on his own. Here is his new website: http://www.neilnathanmd.com/

I also hear that the lab those two doctors have been using has added a test for a fourth type of mycotoxins: Gliotoxins. Here's their website: https://www.realtimelab.com/environmental-inspectors/mycotoxin-testing/

That is really cool that Dr. Brewer mentioned the mitochondria in his paper. I wish that ME/CFS researchers in general would pay attention to the doctors who are on the front lines of treating our illness and get ideas from them.

Dr. Brewer and Dr. Nathan aren't researchers, but they are sure good at generating theories and hypotheses to test.

 

[Forebearance]

@Hip, does this chart do anything for you?
www.townsendletter.com/Oct2006/figure9.pdf

I went looking for gliotoxin's effect on ATP.

 

[Hip]

@Forebearance, did you ever read the posts of Doug on the PR forum (see this post and this post). His ME/CFS was triggered by a massive mold exposure, but he said he eventually made great progress and I believe near remission, via a protocol containing 2 to 4 grams of inosine daily among other things.

I just mention this is case it is of use.

I read here that Th1 rather than Th2 is required to fight mold, and inosine is assumed to boost Th1.

@Hip, does this chart do anything for you?
www.townsendletter.com/Oct2006/figure9.pdf

It's interesting, as I am currently looking out for things that can inhibit mitochondria and energy metabolism. Though I am still low down on the learning curve in terms of understanding all the complexities of the human energy metabolism.