I have had the Real Time Labs mycotoxin panel done and had high levels of Ochratoxins, Tricothecenes and was at the very top of the reference range in Aflatoxins. This blog post from Chris over at CFS Patient Advocate summed up an interesting study and outlined a possible new treatment direction for me to explore.
Sunday, March 30, 2014
Dr. Joseph Brewer and Mycotoxins, an update
Dr. Joseph Brewer of Kansas City was one of the physicians who did not attend the recent IACFS/ME conference. Dr. Brewer is an infectious disease doctor who has been working with AIDS, Lyme and ME/CFS patients for a very long time. Over the years he has become interested in various treatments for ME/CFS – and has been open to thinking about associated subjects such as Mitochondrial impairment (or down regulation) or Mycotoxin involvement – to describe two of his recent interests.
About two years ago now, Dr. Brewer stumbled upon Mycotoxins and their potential involvement in ME/CFS. Dr. Brewer and his associates, Dr. Thrasher and Dr. Hooper, published their first paper on Mycotoxins and ME/CFS in April 2013. It can be view here. In this study, Dr. Brewer reveals finding 93% (104 of 112) of his patients positive for one of three mycotoxins (there are hundreds of mycotoxins) through a test at Real Time Labs in Carrollton TX. Zero of 50 controls tested positive.
The Real Time Labs test is a urine sample for Ochratoxin A, Aflatoxin and Trichothecenes (MT). (Real time labs will soon have a blood test for gliotoxin, a mycotoxin associated with Aspergillus.) The initial test costs about $700 and appears to be partially reimbursable. On Dr. Brewer’s initial study Ochratoxin A showed up the most, although a good number of patients had more than one and some had “the trifecta” – of all three. Dr. Brewer feels that mycotoxins are not good for patients to have in their bodies – and that they represent a major factor in their ME/CFS illness.
Dr. Brewer reports that these mycotoxins impair mitochondria function and interfere with cell membranes. Loss of mitochondrial function can cause detoxification problems with other toxins. Poor detoxification might have something to do with clinical response.
Dr. Brewer’s previous experience with mold or mycotoxins was non-existent. He is an infectious disease doctor who looks for bugs and tries to kill them. In no way can Dr. Brewer be described as a “mold doctor”.
In December 2013, Dr. Brewer, Thrasher and Hooper published a second paper on Mycotoxins and their connection to chronic illness – “Chronic Illness Associated with Mold and Mycotoxins – Is Naso-Sinus Fungal Biofilm the culprit?” In this study they laid out their case based on examination of existing literature, citing case studies.
Faced with this high percentage of his patients with potential mycotoxin involvement, Dr. Brewer was both surprised and perplexed. He began treating some of his patients with heavy duty anti-fungal infusions. In time, again through researching the literature, Dr. Brewer concluded that the most likely reservoir for the mycotoxins was the sinuses. This involved a bit of guesswork. It is Dr. Brewer’s thesis that these mycotoxins get into the body and colonize in the sinus. Once colonized and protected by a biofilm, the body cannot get at them and they just stay there forever. It is his belief that they have to be rooted out. He finds in his patients that the exposure can be from the distant past, up to 20 years ago. From Dr. Brewer’s point of view, focusing on the sinuses in no way excludes other reservoirs harboring the mycotoxins – the gut, stomach and lung.
Dr. Brewer began treating his patients with nasal Ampho B – and he started getting results. Dr. Brewer works with a nasal drug delivery company called ASL pharmacy. They have a nasal delivery system called Nasa-touch which atomizes the medicinals. In time Dr. Brewer added another nasal drug to bust up biofilms that he believes are harboring the mycotoxins. This is nasal EDTA in combination with surfactant, an ingredient in Johnson’s Baby Shampoo.
Two side effects of this treatment are noted. One is that the Ampho B can cause nasal irritation and even mild nosebleeds in a few cases. The second is that the treatment often causes a strong herx reaction as the mycotoxins are exposed and the drug kills them. In both situations, Dr. Brewer moderates or cuts back the treatment and all cases have been manageable.
Dr. Brewer has been surprised, astonished really, by the results of treatment. In his first 100 patients treated, 70% showed improvement, including six whose symptoms completely resolved, including all symptoms of their larger illness.
With treatment, the successful patient’s urine Ochratoxin A will go down to zero in a matter of some months. The Trichothecenes (MT) takes longer but it too will diminish with treatment.
Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.
Dr Brewer has continued testing and treating more patients. He has now tested 350 patients, 325 of whom are positive for one or more mycotoxins. More Trichothecenes (MT) have been showing up recently in his patient population. He is now treating up to 200 patients and I believe another paper will be coming out soon. Dr. Brewer reports that those patients who have fully resolved and ended treatment tend to relapse and have to go back on treatment.
Dr. Brewer’s absence at the recent IACFS/ME meeting has already been noted. How could this happen? How could the emergence of a target for treatment not be acknowledged at this conference? This is all the more unusual in that Dr. Brewer published his first paper a year ago and then gave an exciting presentation at the Lyme conference in October 2013. In this situation, there seems to be a target, a treatment that is relatively benign – and Dr. Brewer is getting results. Doesn’t this warrant more attention? Wouldn’t it be interesting to find out what is happening here?
Of course, in spite of this, there was quite a lot of discussion of the subject of Mycoyoxins in the hallways of the IACFS/ME conference.
Regarding mycotoxins and ME/CFS we have to ask some questions. The most obvious one concerns the validity of the testing at Real Time labs. At the moment this seems the only lab that does mycotoxin testing. Dr. Ritchie Shoemaker has not been overly excited with this test, or with the idea of nasal colonized mycotoxins. If it isn’t mycotoxins that are being knocked out, what is the activity of Dr. Brewer’s treatment? A 70% response rate of over 100 patients is impressive. Dr. Brewer himself says that he has never seen such success with a single treatment.
Meanwhile other physicians are beginning to test their patients. A West Coast physicians group has tested over 100 ME/CFS patients for mycotoxins at Real Time labs – and are getting the same high positive results. Preliminary reports on Dr. Cheney’s testing of his patients also indicates a high positive response, especially for Trichothecenes. Even Dr. Ian Lipkin indicated that mycotoxins were dangerous, and warranted looking at in ME/CFS. Other physicians, Dr. Chia, and Dr. Enlander, are aware of Dr. Brewer’s work and have been encouraged to test their patients.
This does sounds promising. I’m glad you are looking for solutions. You are a strong and admirable woman. Wish I could do more, but know you are always on my mind. Fingers crossed that I will see you this summer.
Thank you, Jamie! It means so much that you read my blog! I’m fighting on and would love nothing more than to see you and the girls sometime soon. Xo
Fascinating read and a hopeful one.
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Dr. Cheney is exploring this area with Dr. Brewer as well. I did the test recently and was at 2.3 for Tricothecenes. That was three times the highest amount he had previously seen. Gold star for me!
Oh, and when I told my regular doc about potentially doing Ampho B, he was visibly alarmed and said, “We call that one Awful B.” Apparently it’s quite toxic to the liver, iirc. Nothing is ever easy in this illness.
Oh, you just answered my question about VIP, I guess. No nothing is ever easy and I’m more and more reluctant to try anything. I just had the most severe reaction yet to Yasko’s multi vitamin. Seriously? We must, under all of it, be very resilient.
Yes, I read that he and Dr. Shoemaker sometimes swap patients. 2.3 is unbelievable! I’m so sorry, but, also, know no one else that has done the test, so I’m comforted that you also had a high result. It’s thrown me for a loop, wondering if I can ever feel at leave living where I have lived for the last eight years. Are you being treated for that? Is Dr. Cheney doing the VIP? Can we all go form a dry, moldless, sunny commune on the sea with a vegetables growing and animals grazing in the pastures and a good doctor near by and endless money and help from peaceful, harmonious loved ones? Please?
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From what my doctor says, AmphoB is very toxic if ingested, however with Dr. Brewer’s research, they are presuming it is located int he sinuses and AmphoB is now available as an atomized sinus spray, and 95% of it does not enter your system, so pretty safe.
Elizabeth have you started treatment?