Saturday, June 3, 2017

Dr. John Chia and Enterovirus. Old hat? Nope - a key.


Recently, the 12th Invest in ME conference in London ended. This ME/CFS conference is three days of serious research discussion and presentations. It is one of the best conferences on difficult diseases. The sponsors Richard and Pia Simpson exert an extreme effort to put on this conference, a conference which expands in scope every year. These two individuals are extraordinary people.

One wonders, with all the comprehensive research at this conference, if Dr. Chia and his Enteroviral research were even mentioned at the Invest in ME conference conversations this year?

Is it possible that the low level of response to his research will continue indefinitely? Let's hope not.

Dr. John Chia knows that enteroviruses are a cause of ME/CFS.

I first met Dr. John Chia at the Invest in ME conference many years ago. Dr. Chia made a presentation on enterovirus and ME/CFS. He has made several other presentation at Invest in ME and I have written about him before, here and here and here and here.

Recently I came upon the NIH RFI request sent out this spring. Various people responded and the publication of responses can be found here. Dr. Chia's is the third response down, talking about his subject - enteroviral involvement in ME/CFS. The real question is if anyone - specifically the NIH - will pick up the thread.

Dr. Chia made a three-hour presentation on Enteroviruses at the IACFS/ME conference in the fall of 2016. In it, he makes the case that he has been making for many years now.

Dr. Chia keeps working on enteroviruses involvement in ME/CFS. He is undeterred and is committed to continue until there is a solution. In the meantime, Dr. Chia treats patients with oxymatrine. A certain percentage respond. He also uses Epivir in some cases. More recently he recommends dihydroquercitin and specifically Swanson's Russian Rejuvenator. Dihydroquercitin appears to inhibit coxsackie b4 virus and stabilizes mast cells. It has various other activities - anti-inflammatory, neuroprotective, combats oxidative stress - that you can read about online. It suppresses the release of histamine.

Dr. Chia has no problem with the recent metabolome data coming from Naviaux, seeing it as a step in the process of ME/CFS. He believes that a number of drugs might modulate the cellular function in the brain but eventually the viral replication or related mechanisms will have to be inhibited. This will come with anti-virals against coxsackie B and Echo viruses. It is known that two European companies are working on a anti-viral coxsackie drug, but they keep their work very quiet. The companies working on this have extra motivation now, knowing that their market for this drug is greater than originally thought.

By sheer chance, my daughter started doing the ARUP coxsackie antibody test in 2005. Only in 2007 did I hear Dr. Chia state the importance of doing this specific test. My daughter's antibodies to CVB4 and CVB3 have been at the top of the range for ten years. To me this means something, as opposed to many other test results, which are indeterminate. I know a lot of people with ME/CFS - and a good number of doctors who try to treat it. To all of them I urge doing the coxsackie antibody test via neutralization at ARUP. Amazingly, I have yet to convince one patient or one doctor to do this test. This in itself says something - and it is not good. It appears that they just do not want to know.

More can be read on Dr. Chia and enteroviruses on the Phoenix Rising forum and another one on PR here.

There are a number of interesting responses in the NIH RFI cited above. For instance check out Dr. William Weir's response. It is the second one from the top.


Saturday, May 27, 2017

Robert Naviaux, Autism and ME/CFS




Each year I feel more ignorant regarding the research going on with ME/CFS. I know a lot about a lot of things but I know very little about bio-chemistry. It puts me at a great disadvantage, so do not expect scientific insight in this report. I see myself as an observer.

In the fall of 2014, I attended the Lyme conference in San Diego. It was the usual mixed-bag of a conference, except for one noteworthy encounter that I observed. At the instigation of Dr. Neil Nathan - Dr. Nathan, Dr. Judy Mikovits and Dr. Eric Gordon met with Dr. Robert Naviaux. Dr. Naviaux is a mitochondrial/genetic researcher who runs a lab at the nearby University of California San Diego. At the time Dr. Naviaux was doing trailblazing research on Autism. As far as I know, this meeting was the beginning of Dr. Naviaux's interest in ME/CFS. (Previously a number of people, including the incredible Rich van Konynenburg, a close friend of Dr. Nathan, felt there might be some association between Autism and ME/CFS.)

Autism

Dr. Naviaux's Autism research in 2014 included this and this. A year later there was this intriguing study and also this similar study. Dr. Naviaux proposed early on that a 100 year old drug named Suramin might have some activity against the "cell danger response" in Autism.

Today came a new study that moved this treatment to a small group of young boys. The study was published in Annals of Clinical and Translational Neurology. The purpose of the trial was to test the underlying theory about a cause for autism and to assess the safety of Suramin. The results were quite striking, but right on target for Dr. Naviaux's supposition regarding Suramin. There is an article about this new study here. Also there is a youtube video of Dr. Naviaux speaking of this study and its participants. Additionally Dr. Naviaux answers questions on today's study here.

Dr. Naviaux has provoked a shift in the underlying cause of Autism - towards a metabolomic signaling breakdown. This is a seismic shift. Time will tell us how real this is.

ME/CFS

There is some thought that the purinergic signaling in ME/CFS is also aberrant. I first heard of this in a presentation by Dr. Geoffrey Burnstock at a 2011 Invest in ME conference in the UK. Next week the 12th Invest in ME conference will be held in London. Invest in ME does an excellent job at promoting serious ME research. Perhaps Dr. Naviaux will attend this conference? There he could meet Donald Staines and talk about Vasoactive Intestinal Peptides and other neuro-peptides. In this business of ME/CFS, there is never any assurance that the right people are talking together.

More recently, Dr. Naviaux has focused on ME/CFS. He has communicated with various CFS physicians and researchers, including Dr. Paul Cheney. Dr. Cheney has long promoted the notion of ME/CFS being a "Dauer state" or a self-protecting down-regulation. Dr. Cheney's protocol leans towards correcting a hampered metabolism in his patients.

Dr Naviaux and his research is connected to the Open Medicine Foundation.  He works closely, as well, with Dr. Ron Davis at Stanford and Dr. Eric Gordon at Gordon Associates.

The post below reviews Dr. Naviaux's important study on ME/CFS patients in 2016. Yesterday, Dr. Naviaux did a follow-up webinar sponsored by the CDC. The slides can be found here. This presentation includes this: "hallmarks of a low energy state: anxiety, restlessness, irritability, fear of change, OCD behaviors, sensory and chemical hypersensitivities, meltdowns, and bouts of hyperactivity and even seizures." Sounds familiar.

It is worth noting that Suramin has various actions.This fact intersects nicely with some past, supposedly failed, research in ME/CFS.

All this is pretty amazing stuff. Dr. Naviaux's ideas seem to be reshuffling a number of hypotheses about these serious ailments.

As with all research, the biggest obstacle to moving forward is money. I have followed type 1 diabetes research for 25 years. It is a tough road for innovative researchers to get enough money to actually do the work, especially if the researcher is seen as an outsider - and when there are unseen or undeclared forces standing in the way.

Fifteen years into my daughter's illness, her caregivers and I struggle to make her better. Hope is not the answer. Research and treatment are. Dr. Naviaux's work is most welcome. All those connected to the illness need a little practical results and direction in order to gain some traction.

Meanwhile, patients and advocates are left to struggle on their own. All, according to their abilities and finances, try to find a way out of this disease. In my limited experience, different things work for different people - and some enterprising or lucky individuals can actually get better.

****It is worth noting that there has existed for some years now a comprehensive urinary metabolites test that measures 70 different metabolites. This organic acids test is available from Great Plains Laboratory and other labs. I see the OAT as a crude precursor of Dr. Naviaux's metabolic studies. However, it is an existing instrument with actionable information. The patient, advocate or even a doctor can learn to read this test and make decisions.




Monday, August 29, 2016

Robert Naviaux Metabolome study in ME/CFS


The long awaited study from Dr. Robert Naviaux of the University of San Diego was released today. It is a key study in this illness. 

You can read about it here and here.

This is apt to be the most important ME/CFS study to date.

An article on healio states:


"Among patients with CFS, results showed abnormalities in 20 metabolic pathways, including sphingolipid, phospholipid, purine, cholesterol, microbiome, pyrroline-5-carboxylate, riboflavin, branch chain amino acid, peroxisomal and mitochondrial metabolism. Researchers noted a decrease in 80% of the diagnostic metabolites, which was consistent with a hypometabolic syndrome. Men had diagnostic accuracies of 94% using eight metabolites and women had 96% diagnostic accuracies using 13 metabolites, according to the area under the receiver operative characteristic curve analysis.
“Despite the heterogeneity of CFS, [and] the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” Robert K. Naviaux, PhD, professor of medicine, pediatrics and pathology and director of the Mitochondrial and Metabolic Disease Center at UC San Diego School of Medicine, said in a press release. “And interestingly, it is chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability."
I was at the ILADS conference in San Diego in 2013. Among the interesting connections that I observed was a meeting between Dr. Naviaux and three ME/CFS researchers - Neil Nathan, Eric Gordon and Judy Mikovits. Dr. Nathan had arranged the meeting, thinking that Robert Naviaux might have an interest in ME/CFS.  Neil Nathan, friend of Rich van Konynenburg, had the right instinct on this one. Thanks to him for this connection. 

Dr. Robert Naviaux is a mitochondrial researcher at the University of San Diego. 

Read about him here

Dr. Naviaux has done metabolomic work in the field of Autism, which many feel is allied to ME/CFS. Various studies can be accessed online. Basically Dr. Naviaux has uncovered metabolomic dysfunction patterns in Autism, just as he now has in ME/CFS. 

It is difficult to put into words just how important this study might be for getting the ball rolling. Not only does it provide a clear framework for metabolomic analysis for diagnosis, but it also points towards further studies in treatment possibilities. 

Dr Naviaux works in collaboration with the Open Medicine Foundation, work being done with geneticist Ron Davis and others at Stanford. Their collaboration very well might be a fruitful one for patients with this disease. Here is what Ron Davis says about the study. The Open Medicine Foundation is working hard on a Severe ME patient study and a host of other things. They deserve all the support that they can get, at this critical time. 

A word about Dr. Eric Gordon. Dr. Gordon runs the Gordon Medical Center and sponsors research. He has developed a working research relationship with Dr. Naviaux and Dr. Gordon is named on this paper. You can get more information about this study from Gordon Medical here. Dr. Gordon is one of these physicians who is "all there, all the time". If you want to help out, support his fund for a replication study. Replications are never done in ME/CFS and are a big sign of the problem in ME/CFS research. Those of you who are willing to participate but don't want to throw your money away, I suggest backing Dr. Gordon and his efforts. 

Interestingly, another long-time ME/CFS physician, Dr. Paul Cheney has long held the belief that ME/CFS was a down-regulation of many body functions - as a protective device, a protection from dying. Hence Dr. Cheney has been careful in what treatments might be applied, careful that he would not make the patient worse. In this way he eschews using therapies like coQ, D-ribose and various other items that might provoke - believing that they might make things worse. In a nice way, this study is a substantiation of Dr. Cheney, whose down-regulatory notions parallel Dr. Naviaux's "playing dead syndrome"


Friday, February 27, 2015

A Good Day for a Serious Disease




"unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease."

Dr. Mady Hornig and Dr. Ian Lipkin from Columbia University published an important paper today in Science Advances. The study can be read hereArticles  on this cytokine study appeared immediately in the Wall Street Journal and the NY Times, written by Amy Marcus and by David Tuller.  Both of these journalist have been on top of reporting on this disease for a number of years and their efforts are commendable. 

This significant study at Columbia (financed by the Hutchins Family Foundation) - along with the brain imaging of Dr. Jose Montoya at Stanford - will go a long way towards shifting the momentum in research into this serious illness - ME/CFS, otherwise known as Myalgic Encephalomyelitis.

From the Columbia website


We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn't psychological,” states lead author Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School. “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers." 

"This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says senior author W. Ian Lipkin, MD, also the John Snow Professor of Epidemiology at Columbia’s Mailman School. “The question we are trying to address in a parallel microbiome project is what triggers this dysfunction."

Dr. Hornig will give a presentation on the research at Columbia at the Invest in ME conference in London at the end of May. 

Friday, February 6, 2015

Hugh and Chris Hempel - and their daughters Addi and Cassi




I had the privilege of meeting Hugh and Chris Hempel at the Whittemore Peterson Institute in 2009. My son Peter Cairns was filming various individuals with neuroimmune illness, among them the Hempels. The Hemples' two daughters Addi and Cassi, now eleven years old, have Neimann-Pick Disease, a rare and fatal illness.

The Hempels are what every parent of a chronically ill patient aspires to be. Few achieve the level of involvement and focus that they achieve. They have set aside totally their own lives and devoted themselves to the betterment of their two ill daughters. I have followed what they have done over the last number of years with astonishment.

Today I came upon this video unexpectedly. I was surprised to hear Mr. Hempel speak on a subject that is of very great interest to me. Medical cannabis is in the news every day now. There is a great battle going on in America. The outcome is uncertain. The great states of Minnesota and Pennsylvania, two states close to my heart, are moving towards medical marijuana programs. Why does it take so long?

It is painfully obvious that cannabis, especially non-psychoactive CBD or THCa,  has certain medicinal properties and has helped, in various non-smoking forms - oils, tinctures, vaped, transdermal, suppositories -  a great many chronically ill people, including the two daughters of the Hempels.

Mr. Hempel is doing us all a great favor in presenting his experience at a Ted talk. It also takes a bit of courage, given the nature of the US Government's position regarding medical marijuana. Mr. Hempel lays out the picture, without making extreme claims, only asking for serious research into the potential of this medicinal plant.

There seems to be some use of medical marijuana in Lyme patients. Not much anecdotal experience in ME/CFS is available on the internet. Given CBD's known anti-inflammatory properties, one would wonder, why is this?

Wednesday, December 31, 2014

This time of year - and Severe ME/CFS


It is that time of year again. Holiday time and the New Year is the saddest season for ME/CFS patients. While the dance of life goes on for many people, ME/CFS patients feel the heightened sense of abandonment and despair.

We need to try to do more to relieve their suffering.

I have felt for a long time that the key to the illness – should there be a key – lies with the severely ill. These patients at ground zero of this illness need to be studied - and studied in depth.

This is more possible today than any time prior. There are commercially available tests that could uniformly be applied to this patient group. I could list some of them, but I will forgo this at this time. And then there are the research tests that would delve even deeper.

Please excuse the repetition as I quote a few items from my previous blog posts.  As Stravinsky said, some things need repeating.

“It is my belief that we, collectively, have to look more closely at the most severely ill ME patients. It is my belief that they harbor, in their severity, the keys to this illness. Most doctors do not see the most severely ill. Dr. Kenny De Meirleir, in his trips into Norwegian homes, treats the very ill. Dr. Paul Cheney and Dr. David Bell also have occasionally seen the severely ill. Perhaps others have - and hats off to them.

But, by and large, the severe patient is isolated from everyone. The severely ill ME patients cannot get to a doctor's office. They languish in darkened rooms, cut off from reality, isolated and often abandoned, and without medical care. It appears that no one cares a whit about them. It is these patients on whom we have to focus our attention - both for their sake and for ours. More effort has to be made to "get in close," although this, in itself, is difficult under even the best of circumstances.

I know of a number of these patients. They have the willingness to participate, through testing, in their own potential betterment - provided that the severity of their situation is taken into consideration. Many already have had testing for immune function, NK cell activity, cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent testing needs to be applied to these patients using existing parameters - if only to set the stage for future possibilities that will soon arise.

Most people do not want to take a look in this direction. Most people turn away - including doctors. It is time to toughen up - and to consider these patients, and what they are going through. Testing of the moderately ill has not brought clarity. We need to brace up, take a good look and then move in close. While it is difficult it is the only decent and humane thing to do.”

“Until those at the center of this illness - those in darkened rooms - are depicted, embraced and understood, nothing will happen at the government level.

In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos), should be mandatory - to set the stage and to get the participants in the right frame of mind.

There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said no.  The government is content to give a grieving altar to the moderately ill and leave it at that.

The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from roofers, from plumbers, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything.”

“And what about the others - what about the really sick ones?

There is really only one way to present this illness, and it needs to be done more often. The face of this illness lies in the presentation of the severely ill patients. This is one of the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to make this video, visually and audibly describing her condition. This courageous and heartrending video that has so much power and dignity. We need to see more of these kinds of videos - images and pictures of the severely disabled. This is where the visual information lies - down near the bottom.

"Walled up:

Imagine a patient who cannot stand, who has extreme fatigue and must live a horizontal life. Imagine a person who is functionally blind from light sensitivity and eye muscle fatigue and wears a blinder 24/7. Imagine how this blindness might further limit this person's ability to move. Imagine this person with sound sensitivity so bad that they cannot tolerate the phone ringing or dogs barking outside. Imagine a person whose skin is sore and sensitive to the touch. Imagine a person who cannot focus their thoughts, has short term memory deficit, or can't speak clearly because of neurological deficits ("brain fog"). Imagine a person who has seizures, spasms and twitches. Imagine a person who has lost their sense of smell - or has hypersensitivity to smells. Imagine a person who cannot speak, or cannot speak above a whisper. Imagine a person with a feeding tube, IV medication, and oxygen. Imagine living in a world where things coming in and things going out don't happen. Take a good look. This is ME/CFS at the core. My friends in the UK call it ME. It is worth noting that all ME/CFS patients are on a continuum, shifting whimsically up or down the scale over the years.”

Incidentally these severe patients have measurable abnormalities that characterize the illness.

I have written about the film Voices from the Shadows here. Allow me to quote one part of this review.

And yet the film does focus on "those who do not back away" - the caregivers. These caregivers are trying valiantly to save their loved ones, but the stress is in their eyes, in their movements. It is a very difficult position to be in, to chose to move in close and support the very ill patient. Moments of interchange between the caregiver and patient are excruciatingly poignant and painful. This illness is terrible for the patients. It robs them of much of life's normal activities and interaction, and yet the caregiver, in his or her giving, suffers terribly also - and this film delivers that message. A properly balanced interaction between caregiver and patient - something that is extremely difficult to get right - is depicted with extraordinary sensitivity by these filmmakers.’

"Natalie Boulton has also done us a great favor in writing and editing her fine book, Lost Voices, a gathering or set of stories and pictures of severely ill UK ME patients. The book was published by InvestinME in 2008. It gives the clearest picture currently available of this illness, and is the most valuable resource for coming to terms with its reality. Otherwise there are various videos on youtube made by patients, and by the providers of these very sick patients. Many of the older videos that I viewed years ago - ones that were quite frightening to me - have disappeared off the internet. Soon we will have additional contributions in this area, and they will be welcomed for what they are - clear documents of the core of this ME/CFS illness.

This, of course, is not an easy subject. It is a delicate issue - this severe private illness that takes place in darkened rooms - and from many points of view. But I think we have to have the courage to put pictures and videos - with clear explanations - out into the world in order to show the serious consequences of this illness. This illness needs a face, a real face.

I was in the conference hall in London several years back when Dr. Kenny de Meirleir showed videos of desperately ill, bed bound patients in Norway. The video was extreme, showing a patient lying in a bed in a darkened room, with a feeding tube, wearing a blinder and ear protectors. The sheets were suspended above the patient due to intolerance of the weight and pain of the sheets. It was a riveting, terrifying video, an image straight out of Dante. At the same time, Dr. de Meirleir had a young woman speak about her "walled up" sister, who she had not seen in four years - even though they lived in the same house. It was easy to sense that this presentation shocked the audience, an audience consisting of patients or those familiar with the illness. It was as if Dr. de Meirleir had done something inappropriate. But for me, it was a revelation, and that moment has percolated in my mind ever since.

How can this illness be presented to the uninformed - doctors, researchers, journalists, friends and families - in a profound way? I think you have to go "to the core". It is like going inside of the smashed nuclear reactor and viewing the exposed fuel rods.

Certainly, at the moment, the face of this illness has not registered with the public at large, and listing a long list of symptoms is not going to cut it. I want a video in my hand that depicts the "very bottom" - a video that I can hand to Dr. Harvey Alter and say : "Dr. Alter, take a look at this." - and hand it to any number of people with the same intention. There is a need to provoke people into the recognition of the true devastation that this illness inflicts on patients - and caregivers.”

Such were some of my comments from the past. If I ever had a conspicuous idea about this illness it is to study the severity of it. Hopefully things are about to change in this regard and I will write more about this soon.

In the meantime, I have five or six ME/CFS friends who have made substantial improvement in the last few years. Most had the illness at a moderate to serious level and were disabled in one way or another, suffering serious consequences to their lives. Each of them pursued various avenues to betterment and there was no commonality to what brought them to some betterment - and a couple to substantial betterment.  No commonality, and yet they have the same illness. Their diverse treatments included antibiotics, acupuncture, Valtrex, methylation supplements, uv light therapy, thyroid regulation, dietary changes, Chinese herbs, jin shin jyutsu, ozone therapy - and cannabis.  Each had to find their own path through trial and error. This is an important bit of information.

Yesterday I read this article, which I found of interest.


Thursday, October 16, 2014

Dr. Joseph Brewer at ILADS, 2014



ILADS is a professional scientific conference focusing on the education and treatment of Lyme disease and its co-infections. This year's conference in Washington DC was packed.

I was particularly pleased to see Dr. Neil Nathan from Gordon Medical Associates give several lectures, one on viral treatment for the Lyme patient and one on methylation. Dr. Nathan is a remarkable clinician, one who is open to suggestion regarding different treatment modalities. Dr. Nathan, Dr. Eric Gordon and Dr. Wayne Anderson form a unique group of physicians working on these complex illnesses out of one clinic, Gordon Medical Associates in Santa Rosa, CA. 

Dr. Nathan worked closely with Rich van Konynenburg. In 2009, they did an important study together on methylation.

I really went to ILADS to hear Dr. Joseph Brewer update us on his treatment for Mycotoxins in ME/CFS and Lyme. The bottom line of Dr. Brewer’s lecture was that this treatment is continuing to provide remarkable results. Over time Dr. Brewer has gained confidence that he is really onto something here. Many others are beginning also to understand and treat patients for mold and mycotoxin involvement.

A previous blog post from October 2013 covered Dr. Brewers previous Mycotoxins lecture at ILADS. It can be found here.

Once again Dr. Brewer gave a quick review of the overall picture of mycotoxins and chronic illness.  Dr. Brewer pointed out that mycotoxins suppress all aspects of the immune system. Certainly this is what Shoemaker and others have found. 

Dr. Brewer continues to use Ampho B in an atomized nasal application. Ampho B has caused serious nasal irritation in some patients. These patients either cut back their treatment or shift to another treatment drug.

Dr. Brewer presented a pilot study, done with his own patients. This is an open label observational study done by him and his patients. This pilot study covered treatment of 151 patients between May 2013 and May 2014. The treatment for all patients was two fold: nasal atomized Ampho B and nasal atomized PX chelating formula. Chelating PX is a combination of EDTA and a surfactant. Each patient did each agent once daily for at least six months. A few were every other day dosage.

56 patients dropped out, not able to tolerate Ampho B.

94 of 151 continued on the study. 

Of those 94, 88 showed improvement at the end of the study. This is a 93.7% improvement rate. Improvement was 25-50% or greater from baseline, and this was self-reported.

One third of the 88 are pretty much back to normal. These patients have had a complete resolution of symptoms. 

58% of the total 151 improved with this treatment. 

Die off was reported at 13%. Dr. Brewer believes the die off percentage was higher, perhaps in range of 30-40%.

22 patients continue to be followed. Some of these have stopped treatment while others were on maintenance doses. A number of patients have relapsed after stopping treatment.

A few patients, more recently, have stayed off treatment and have not regressed. It is believed that the treatment has to be continued for a certain unspecified duration for complete resolution.

Since April 2014, Dr. Brewer has begun using nasal Nystatin on a number of his newer patients. He has now treated 80 patients with Nystatin. Most of them were in the Ampho B intolerant group. ASL pharmacy has been unsuccessful in making a liquid formulation of Nystatin for atomization. Instead they fashioned it in a pill form. The pill is opened and the powdered Nystatin is mixed with distilled water prior to being atomized with the Nasa-Touch. The patients on Nystatin have no nasal symptoms. It seems to be very user friendly on the nose. Die off is about the same as with Ampho B cohort. Preliminary results indicate that these patients are improving on nasal Nystatin treatment.

There may be other agents that could be useful and they will be studied.

This report is for informational and educational purposes only. It is not to be seen as medical advice in any way.