Detection of Mycotoxins in Patients with CFS

[Ifish]

globalpilot
Brewer also believes that right now Ampho B is the medication of choice. He is exploring other options because some patients can't tolerate it. I suppose it might also be true that something is the best until something better is discovered.

 

[soulfeast]

In Dr Grant's interview (I think this is linked here), she mentions mast cells. I am curious if any of you have mast cell issues and histamine intolerance. I feel pretty certain that I do and have had some symptom relief with h1-h2 blockers and Neuroptotek with stinging nettle or Querca Max (that I got from Clark's Compounding pharmacy, which is similar to D-Hist). I had specific symptom relief with each intervention.

Since issues built up in my house and my body, I began to feel like I was on the verge of anaphylactic shock quite a lot, maybe almost constantly. I still have flares of this.

I had sinus surgery a few years ago because of stage 4 sinus disease. Is saw Dr. Donald Dennis in Atlanta. I see that Brewer refers to research by Dr Dennis also through Real Time Lab. My sinus cavities were cleaned out and irrigated with Ampho B. I had residual symptoms of hyper reactivity which Dr. Dennis thought at the time (and may be the case) is due to a ramped up T cell reactivity to fungal spores.

Later I began to suspect mast cell involvement and started treatment.

I did not carry through with post surgery instructions past maybe 6 months or so. I was taking voriconizole spray and rinsing with a saline solution and citri-drops (a citrus seed extract). I feel like stuff is building up again and wish I had continued.

Here is one of Dr Dennis's articles: http://www.sinusitiswellness.com/ar...stract-pdf/Dennis-ChronicSinusitisarticle.pdf

I think there may be something to the biofilm theory for me. I am excreting mycos still after 4 tests and over 3 years out of my house. I realized I had a sick building in my face, but now this idea is hitting home again. I do wonder how a biofilm colony survives surgery and Ampho B irrigation and then subsequent months plus of antifungal sprays. I also wonder if there is something to Dr Grant's idea of a soft palate "infection" or what? colonization with a biofilm community.. Something leading to the idea that something was left over to grow post surgery??

 

[dannybex]

I have no idea, so this is just a laymen's guess…take it with a huge truckload of salt (and a teaspoon of baking soda).

I didn't see any mention of biofilms in Dennis' article, but did see that voriconizole 'inhibits' candida-related biofilms. I just wonder if it is specific to candida species, and not other mycotoxins…so that may explain your previous results?

Also, although Ifish mentioned that Brewer doesn't use activated charcoal or other binders, if one has chronic sinus issues, even though most of the infection may be 'stuck' in the sinuses, I know that in my situation, I still get a lot of post-nasal drip all day and esp night, and wonder if that's causing spread of these mycotoxins throughout the gastrointestinal tract, and thus, which then might also affect the vagus nerve, the gallbladder, the liver, etc., and the rest of the body?

I guess I still don't quite understand how it can be treated in the sinus cavity and then just be excreted in the urine?

 

[cigana]

Might be worth mentioning that ozone is useful in the treatment of chronic sinusitis:

http://www.ncbi.nlm.nih.gov/pubmed/12501776

and that ozone also breaks down biofilm.

 

[Ifish]

dannybex,
One point about mycotoxin and the sinus. The idea is that mold is growing in the sinus. The mold produces mycotoxin. When you exhale it is pushed out. When you inhale it goes into the lungs and absorbed into the bloodstream. Mycotoxin is poision and so the body does what it naturally does and excrete it. But in the meantime it makes you sick and damages the body. What is happening is your breathing a little poisionous gas on a consistant basis.

 

[boohealth]

I'm skeptical of the whole picture. You don't need expensive proprietary tests to know if you're being exposed to molds.And I highly doubt that nasal antifungal sprays are effective on more than the nose.
But YMMV.

 

[cigana]

I'm skeptical of the whole picture. You don't need expensive proprietary tests to know if you're being exposed to molds.And I highly doubt that nasal antifungal sprays are effective on more than the nose.
But YMMV.

How do you tell if you're being exposed to mold?

 

[Ifish]

My family was exposed to mold from 1991 until 2005 but did not know it. It was hidden behind the wall. It is not always obvious that you are exposed and it is not always obvious that you are sick from it. Mycotoxin tests showed that we were sick from it. This will also be a useful tool to track the progress of our treatment.

I'm skeptical of the whole picture. You don't need expensive proprietary tests to know if you're being exposed to molds.And I highly doubt that nasal antifungal sprays are effective on more than the nose.
But YMMV.

 

[boohealth]

How do you tell? You can do an ERMI or a HERTSMI test (Shoemaker), or you can leave for two weeks without carting your contaminated belongings with, and see if you feel better away and worse on return. But generally I am a DIY person and get annoyed when doctors get on bandwagons. I've seen so many fads come and go, with truth to them, but hey, everybody has to have an angle to market themselves, so they exaggerate the truth.And in this caes supposedly you're shedding mycotoxins years later...so how would you know whether they were from an old place, a current place, workplace (old), workplace new etc.

 

[dannybex]

@boohealth -- Totally understand your skepticism, but as reported from the CFS conference 10 days ago, his patients are finally getting better. And not just their noses. These are people he's been trying to help for 20+ years.

 

[globalpilot]

Did he not state that this is the best treatment so far ? I wouldn't call it a fad. Dr Grant is reporting similar success. Maybe, just maybe, they are onto something that had not been considered before.
Fortunately, if you think it's a fad or ineffective, you don't have to participate. .

How do you tell? You can do an ERMI or a HERTSMI test (Shoemaker), or you can leave for two weeks without carting your contaminated belongings with, and see if you feel better away and worse on return. But generally I am a DIY person and get annoyed when doctors get on bandwagons. I've seen so many fads come and go, with truth to them, but hey, everybody has to have an angle to market themselves, so they exaggerate the truth.And in this caes supposedly you're shedding mycotoxins years later...so how would you know whether they were from an old place, a current place, workplace (old), workplace new etc.

 

[soulfeast]

I have not understood why Shoemaker has not also focused on infection/colonization. It has not made sense to me, especially given I did have infection in every sinus cavity. I wonder about lung and possibly throat and trachea as well? (and GI tract was mentioned along with soft palate by Dr Grant).

 

[boohealth]

@boohealth -- Totally understand your skepticism, but as reported from the CFS conference 10 days ago, his patients are finally getting better. And not just their noses. These are people he's been trying to help for 20+ years.

Who reported? He did?

 

[boohealth]

Just curious. How much is his first patient visit? How much are followup visits? Generally how many visits are required for significant improvement? How much are the Rx meds? How much is the proprietary test by Realtime?

 

[soulfeast]

Ifish,

Does Brewer start at the 5 mg ampules or the 10 mg ampules and is there a protocol of some sort for "ramping up"? And for length.. any indication as to when he might say treatment is complete (maybe RTL results staying in normal range?) or when he might start staggering treatment days?? Thanks so much for this thread and sharing this info!

Getting a sinus fungal culture is difficult to do and highly inaccurate. A mycotoxin test from Realtime Laboratories will tell you whether you are excreting mycotoxins. A positive test will indicate either that you are currently exposed to environmental molds or you have a current internal mold colonization or both.

Brewer has spent almost 2 years working on treatment. He started with oral medications with limited success. For the past 10 months or so he has tried a number of nasal treatments and has now settled on a rather simple protocol:

1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning
2. Amphotericin B in the evening

These medications are provided by ASL Pharmacy http://www.aslrx.com/

I don't know precise doses, but the people at ASL Pharmacy are very easy to work with. Some people cannot tolerate the Amphotericin B. It is important that is be dosed separately as it can bind with other atomized medications.

It should be noted that sinus structure can be a limiting factor as it can prevent penetration of the medications deep into the sinuses.

Some people have a herxheimer reaction and so the Amphotericin B treatement is limited to once per day. ASL and Brewer are working on other types of antifungal that might be as good or better and easier to tolerate.

 

[Ifish]

Brewer stated that he thinks the problem is in the sinuses 98% of the time, which I think is a little different than Grant. I don't know exactly why he thinks this.

I have not understood why Shoemaker has not also focused on infection/colonization. It has not made sense to me, especially given I did have infection in every sinus cavity. I wonder about lung and possibly throat and trachea as well? (and GI tract was mentioned along with soft palate by Dr Grant).

 

[Ifish]

If you are asking about Brewer, he is a standard in network doctor. All visits are the same. Unfortunately the waiting list for new patients to see him is about two years. I saw him last week and I won't see him again for six months. So the answer to your question might be "one visit", or it might be more or it might not work at all. I will have to find out. They will provide phone support at not additional cost.

The meds were covered by insurance for me. I am sure if you contact ASL pharmacy they can give you more information. If you contact RealTime Labs they can give you pricing information. I did get insurance coverage for the test but I think it is out of network. I believe either ASL or Realtime Labs might be able to provide a referral to a doctor familiar with all this.

Just curious. How much is his first patient visit? How much are followup visits? Generally how many visits are required for significant improvement? How much are the Rx meds? How much is the proprietary test by Realtime?

 

[Ifish]

The box says 5mg/3ml on the Amphoterecin B. It looks like all his patients get the same thing as my daughter that is doing it is half my size. I don't know the exact previous dosage but it was twice a day. Now he has settle at once per day. There is no ramping up. He has settled on this and has patients stay the course, but he will adjust it down if there are problems.

The end of treatment is an unknown. Most patients start to get better in the 2 week to 12 week range which is similar to what Dr. Grant reported in her paper. Ochratoxin and aflatoxin can come down fairly quickly but tricothecene is more difficult. He has not gotten anyone get trocothecene down to zero but he is very close. He does not know whether maintenance treatment will be needed or what the exact length of treatment will be. He did say he thought the 3 to 6 month mark might be about the right time to retest.

Ifish,

Doe Brewer start at the 5 mg ampules or the 10 mg ampules and is there a protocol of some sort for "ramping up"? And for length.. any indication as to when he might say treatment is complete (maybe RTL results staying in normal range?) or when he might start staggering treatment days?? Thanks so much for this thread and sharing this info!

 

[dannybex]

Who reported? He did?

I heard it through the grapevine that he has 20 or 25 that he describes as either "completely well" or or "nearly completely well", as a direct result of this new protocol. Also, the paper from Dr. Irene Grant (posted earlier in this thread) showed 91% of her patients had 'dramatic improvements'.

 

[N.A.Wright]

This interests me because in a previous life I used to know a bit about macrofungi – mushrooms etc. I find the mould theory difficult to get to grips with because of the gaps between what is known and what is proposed seem so large. Fungal toxicity in mammals, via dietary sources, from either mushroom poisoning or contaminated plant material requires ingestion of grams or kilograms respectively, of the source material to produce acute effects. There seems very little available data on the levels of ingestion required to produce chronic effects in humans, although chronicity is known to be associated with major organic harm (liver damage, cancer). I don’t understand how there could be continuous exposure to health impairing levels of mycotoxins without liver damage being evident in at least some cases.

There also seems to be confusion in some of the discussions, between spores and toxins, as well as some problematic views on the human facial sinuses . All fungi produce spores to sexually reproduce, we are surrounded by fungal spores all the time and while these can (like plant pollen) cause allergic responses, the amount of toxicity (if it exists at all ) that is inhalable is in most circumstance very, very small. Certainly some microfungi can produce serious infection, but that isn’t the same thing as toxicity, just because a fungus produces a mycotoxin under some circumstances, doesn’t mean that it is perpetually throwing out toxins. Also the idea that a fungus can set up home in a facial sinus, and then proceed to produce high levels of mycotoxins seems rather improbable. Certainly the vector by which the toxins enter the body isn’t by spores being aerosolised via the nasal passage. The volume of the skeletal cavity of the frontal sinus is about 10mls in an adult human, and this is largely filled with soft tissue and mucous, the passage between sinus and the back of the nose is less than a millimetre across and is mucous filled.

If a fungi are in the sinus and are producing mycotoxins, then it would seem more likely that the toxins are being directly absorbed into the soft tissue. Even were this to be the case the volumes needed to produce a health impact still seem mismatched to a low level of surface infection. It might be different if people had ballooning faces, tooth abscess style, but there just doesn’t seem enough infecting organism present to produce enough toxin to be disease causing.

The levels of toxins in urine set as being significant by Brewer seem to be in the order of 1 part per billion. This is as compared to a base of less than 2 parts per 10 billion in healthy controls. There seems to be no data on what levels of mycotoxin in urine are consistent with known disease, but in the US, 50 parts per billion of aflotoxin in food stuffs of is considered safe for human consumption, and it seems feasible that >50 ppb ingested orally would yield a small measure in urine. The differential between healthy controls* and declared chronically ill, would be explainable by differences in digestive function or immune system performance, so I’m unclear why these urine tests are considered significant.

I’m not suggesting that fungal exposure can’t be an issue in ME/CFS but I don’t understand why allergy is not sufficient to explain the symptoms involved (headache, nausea etc) rather than some arcane solution that requires novel behaviour (super mould ? ) and novel responses by the human body.

* Added: On further reading I see what others meant by lack of helathy controls. Brewer et al describe their controls as 'patients' but don't say what their health status actually was, but rather that the controls didn't have known mould exposure. This is a pretty unsatisfactory basis on which to build a treatment programme, moulds are ubiquitous in the environment and just because someone doesn't live in a building with obvious mould growth doesn't mean they are not exposed to 'infectious' spores. Even if the testing regime were to have identified a significant difference (debatable) between controls and 'non controls', there are numerous confounding elements that need to be addressed.