Dr. Brewer has developed a protocol for treating mycotoxin involvement in ME/CFS. This protocol is dynamic and over the past couple of years has been modified based on patient response. The crux of his protocol involves patients taking either nasal Amphotericin B or a compounded Nystatin that is atomised before being absorbed nasally by the patient. In tandem with one of the aforementioned treatments, patients must take chelating PX which comprises nasal EDTA with a surfactant.
Specialised testing has ascertained that 93% (104/112) of CFS patients studied tested positive to at least one of three mycotoxin. In contrast 0% (0/55) of the healthy controls tested positive. This study can be found here.
Brewer et al. have written this paper probing the relationship between chronic illness and mold/mycotoxins. The paper theorises that the sinuses are the main reservoir of the mycotoxin hence most of the treatments are focused on this portion of the body. The paper continues on to state that indoor, water damaged environments are hot-spots for mycotoxin production. Detailed mechanism of action and case studies are also provided to support the argument of Brewer et al.
The success of Dr. Brewer’s protocol on his patients has also been impressive. A pilot study by him found that 56 of the 151 patients treated could not tolerate the Amphotericin B. 88 out of the remaining 94 patients noticed improvements- That equates in percentage terms to a staggering 93.6% of the ME/CFS patients having a reduction in their symptoms. Approximately a third of these 88 patients achieved remission. Since this study, Dr. Brewer has found the atomised Nystatin to have a better safety profile than the Amphotericin B.
The Patient Advocate has written extensively on Dr. Brewer’s protocol here, here and here. The Phoenix Rising forums also contains an extensive discussion of this protocol here. Within it are many anecdotal reports and experiences of patients whom have attempted this protocol.
ASL/TAG were originally the compounding pharmacies providing the Brewer’s protocol products (after a prescription is presented or mailed) however they recently went out of business. Woodland Hills Pharmacy in California and Albers Pharmacy in Missouri are now compounding the Brewer protocol medications.
My Experience With Dr. Brewer’s Protocol
I enquired with the American pharmacies that provide the substances required to complete Dr. Brewer’s protocol however they informed me that they don’t ship to Australia. I therefore decided to trial a modified Dr. Brewer protocol. This consisted of:
- A nebuliser used rather than an atomiser.
- Capsule Nystatin opened and some of the powder mixed with distilled water and later nebulised and inhaled nasally.
- A BEG nasal spray used that contained EDTA however no surfactant.
- Nebulised Argyntyn 23, nasally inhaled.
I began different portions of this treatment over a staggered period of time, beginning in March 2015.
The nebulised Argyntyn 23 affected my sleep and hence I only trialled this for a few days. I again started this a few weeks later but similarly, my sleep quality diminished. I tolerated the nebulised Nystatin and continued this treatment for 3 months. I persisted with the BEG nasal spray despite it causing mild yet continuous nose bleeds. Eventually, I determined that the BEG nasal spray was a double-edged sword- My sleep quality deteriorated whilst on it. Every morning I would wake at 4am and struggle to get back to sleep. Curiously, my restless legs syndrome stopped while I took the BEG nasal spray. After 2 months of the BEG nasal spray, I decided to cease the treatment and within days my sleep quality improved and RLS returned.
Overall, I had a very haphazard approach to the Dr. Brewer protocol, largely due to not being able to gain the identical ingredients he used on his patients. His protocol is also intended for long term use and my 2 months of simultaneously taking BEG nasal spray and nebulised Nystatin wasn’t long enough to determine its true effectiveness on me. Over the coming days I will post another blog entry detailing the other ME treatments I have trialled recently.