Detection of Mycotoxins in Patients with CFS

[Skiii]

Update: I'm still stuffy. It's been a month since I've even used the amphoB.

Are anyone's doctors going to ILADS conference?

 

[Skiii]

Oh those citridrops/spray look like a good non-prescription alternative.

Gordon Medical also notes these "Nonprescription nasal options that may be worth exploration include Physician’s Standard Nasal Clear, Argentyn 23 Silver Hydrosol, ACS 200 Nasal Spray, Argentyn 23 Silver Hydrosol, Propolit Nasal Spray (propolis), Seagate Olive Leaf Nasal Spray, Happy Sinus with Silver, NutriBiotic Grapefruit Seed Extract Nasal Spray, and CitriDrops Nasal Spray. Nathan and Anderson have found that silver can often be a helpful adjunct treatment for those dealing with colonizing molds, especially in the sinuses."

in that article I posted.

 

[Forebearance]

I've continued to use Sovereign Silver nasal spray and XClear nasal spray while trying this treatment. I'd been using them for years before this. But the salt inhaler is also pretty great. I've been using it for 5 months now.

I hope your stuffed up nose gets better soon, Skiii!

 

[Ifish]

I keep wondering about my house. We don't have any plasterboard or hollow walls (it's all brick and mortar), no wallpaper (paint), we have no air conditioning (I live in NE England), and I've never seen it suffer from damp for the 24 years we've owned the house. It always seems really dry and airy. I also did a culture test and I got one spec of mould growing which the test rated as 'very good'. Could it still have mould somehow?

Having said that, I did sleep in mouldy bedrooms for 2 and a half years straight at university.

Cheesus,
Mold is always a possibility, although the general construction method used with you home probably makes it less likely. Unfortunately, there can never really be 100% certainty. There are a number of tests that can be done to increase your level of comfort that there is no bad mold currently growing. Ultimately you would need to decide whether you want to do further testing then decide based on the results whether you are satified you don't have a mold problem.

According to Dr. Brewer a prior mold exposure, even one many years ago, can cause continuous mold growth in the sinuses which produce mycotoxins keeping the individual ill over many years.

 

[David.B]

I keep wondering about my house. We don't have any plasterboard or hollow walls (it's all brick and mortar), no wallpaper (paint), we have no air conditioning (I live in NE England), and I've never seen it suffer from damp for the 24 years we've owned the house. It always seems really dry and airy. I also did a culture test and I got one spec of mould growing which the test rated as 'very good'. Could it still have mould somehow?

Having said that, I did sleep in mouldy bedrooms for 2 and a half years straight at university.

ALL homes have mold spores in them. Mold spores are literally everywhere at all times; it's nearly impossible to avoid them unless you are in a "clean room" they use to make electronics or do research. Something like 250,000 spores fit on the head of a pin...

Every mold culture test should grow something...

What you want to know is if there is any actively growing mold in the house; I think the only way to answer that is...

1. Through visual inspection of entire home, inside, out and attic
2. Test for hidden mold

Lots of ways to do #2

I think the best method is to close up your house completely for a few days when the humidity has been high and temps outside are 50-80 degrees. Once all of those conditions are met run a MVOC test.

MVOC tests look for microbial volatile organic compounds in the air. This is what mold releases that you smell and can contain other harmful chemicals.

Here is the only commercial product I know of to test this.

https://www.homeaircheck.com/our-products/voc-test

Like lfish has said; the exposure might not have been recently.

-David

 

[waiting]

ALL homes have mold spores in them. Mold spores are literally everywhere at all times; it's nearly impossible to avoid them unless you are in a "clean room" they use to make electronics or do research. Something like 250,000 spores fit on the head of a pin...

Every mold culture test should grow something...

What you want to know is if there is any actively growing mold in the house; I think the only way to answer that is...

1. Through visual inspection of entire home, inside, out and attic
2. Test for hidden mold

Lots of ways to do #2

I think the best method is to close up your house completely for a few days when the humidity has been high and temps outside are 50-80 degrees. Once all of those conditions are met run a MVOC test.

MVOC tests look for microbial volatile organic compounds in the air. This is what mold releases that you smell and can contain other harmful chemicals.

Here is the only commercial product I know of to test this.

https://www.homeaircheck.com/our-products/voc-test

Like lfish has said; the exposure might not have been recently.

-David

That's interesting -- I hadn't heard of that product.

While molds are indeed everywhere, my understanding is the ERMI test will tell you the relative mold burden of your home in comparison to other homes, so that's an indicator of a problem.

Plus, the ERMI test identifies the existence and amount (in the sample you provide) of the relatively few molds that produce mycotoxins - which also indicates a problem.

Then RealTime Labs can test your urine and your house dust-filter for mycotoxins that, again, are produced only by a relatively few number of molds, and indicate a problem.

 

[Soundthealarm21]

Glad to see it was written about on such a big platform like the Washington post. The article was long though- I wish she had gotten to the mold part a bit sooner so that people won't stop reading too soon.

Even though Mold is my problem too I think it was more important to address CFS as a whole first. That's what the article was about.

I'm glad that mold was included in it and that it was on such a big platform as the Washington Post.

Also, I have this thread "watched" but I don't get notifications unless I've posted recently so I didn't even realize the conversation was going. Anybody know how to fix that?

 

[Cheesus]

Thanks @Ifish and @David.B

I had seen that MVOC test before. It is on my list of things that I want to do. I'm currently waiting for the results of a Cyrex Chemical Immune Reactivity Screen, which will show whether or not I have an active immune reaction to many common environmental toxins including aflatoxins and formaldehyde which I know can be produced by fungi.

I think my mould problem is more in my gut than my sinuses or my house, though it is still something I am keen to investigate more deeply. My liver is throwing out some really weird results even by conventional medicine standards. I am getting the results of a long-term alcoholic and my GP can't find the cause. I'm pretty sure I am being poisoned by something, whether that thing is a fungus or not is not yet clear.

@Soundthealarm21

You need to check in after every time you get an email notification. If you don't check in after the notification it won't send you another email.

 

[David.B]

That's interesting -- I hadn't heard of that product.

While molds are indeed everywhere, my understanding is the ERMI test will tell you the relative mold burden of your home in comparison to other homes, so that's an indicator of a problem.

Plus, the ERMI test identifies the existence and amount (in the sample you provide) of the relatively few molds that produce mycotoxins - which also indicates a problem.

Then RealTime Labs can test your urine and your house dust-filter for mycotoxins that, again, are produced only by a relatively few number of molds, and indicate a problem.

Yes, ERMI testing is good. And so is the real time labs testing.

I think the real time labs dust is probably a better test to check for current environmental mycotoxin exposure. Even if you have say pennicilium spores found using ERMI (very common, they are everywhere) there is no guarantee it's producing mycotoxins. The issue might be hidden stachy or fusarium...

Really all of this testing is useful if interpreted correctly.

-David

 

[waiting]

Yes, ERMI testing is good. And so is the real time labs testing.

I think the real time labs dust is probably a better test to check for current environmental mycotoxin exposure. Even if you have say pennicilium spores found using ERMI (very common, they are everywhere) there is no guarantee it's producing mycotoxins. The issue might be hidden stachy or fusarium...

Really all of this testing is useful if interpreted correctly.

-David

Yes, at least the RTL dust one tells you whether mycotoxins are present & how much. I don't know if there is research data that shows how quickly mycotoxins are produced following a water-intrusion event. I would guess it's dependent on the condition of the environment.

However, as you say, interpretation is important -- so, the ERMI shows how much of the specific molds were found. There is a reference range for each of them, so there's another indicator of the severity of the problem if your numbers are higher than what is considered typical. Also, certain molds in WDB tend to be found together.

This interpretation does not come with the ERMI report, but if you call them, you can speak to someone who can provide some of this. In my view, this interpretation is critical to understanding the report.

If I remember correctly, it also divides them into 2 groups, one of which is indicative of a WDB and the other is common molds that are expected to be present -- but again, within specified reference ranges. So, I think even if it's in the common group, it could be a problem if in very high numbers...?

There are also other considerations in the collection method which depend on your circumstances in your house. E.g. If you include the basement in the sample, but you don't spend much time there daily, then I think that's NOT how they developed the overall ERMI score (they used common living areas).

There's a lot to consider and everything costs. We really need good, curated go-to reference information for these decisions.

 

[Ifish]

psz,
I think you make a good point here. I am confident many of us have mold growing in the sinuses, but there is a major question as to the rest of the equation. My family's recent experience might be helpful. By early August my wife, youngest daughter and I all had clear improvement, but then we all became worse again, almost simultaneously. It took a while to figure out, but it is becoming apparent that it all relates to the start of ragweed season. So now the question is what is happening exactly. The insightful comments from you and others help create a list of possibilities, singularly or in combination:
1. Allergy to ragweed makes us worse.
2. Remaining mold in sinuses is releasing mycotoxins in response to ragweed intruder.
3. Mast cell activation
4. Toxin Synergy theory
5. Cytokine storm


Quite a few years ago I did allergy shots to decrease my allergic reactions to a variety of things including ragweed. It is interesting (and frustrating) that eventually my allergy tests were great but I did not feel better at all. I believe the reason is the allergies wasn't really making me feel worse, but it is the mold reacting to the allergens. I've decided to test this out again by going through the allergy testing process. I'll know in a few weeks.

A couple of years ago or so when Brewer was still looking for an effective treatment he stated to me that he felt that if the mold is killed, any hypersensitivity will diminish eventually. Time will tell if he is correct on this. It could be that effective treatment will require some combination of environmental improvement, mold killing in the body, detoxification and some sort of calming down of the inflammatory response. Perhaps it would require the best of both the Brewer and Shoemaker approach on this. For now I am content to try to get the mold to minimal levels and see if everything else calms down over time.

One final point I should make is that my youngest daughter is still clearly better over all despite her seasonal reactivity.

I anxiously await the first hard freeze.

I wanted to follow up on this. I had a complete allergy work up with an immunologist. Twenty one different mold tests were performed. All were negative. I was also tested for a number of seasonal allergies including ragweed and all these were negative as well. Yet every spring and fall my illness is worse. My theory is that allergens cause colonized mold to release mycotoxins as a defensive response. My wife was in to see Brewer yesterday, and she mentioned this to Brewer. He indicated this is a plausable theory. His indicated that many of his patients were significantly worse during this fall season. Hopefully, going forward, the amount of colonized mold will decrease which will in turn reduce the amount of mycotoxin released during allergy season.

 

[Ifish]

My wife had an appointment with Brewer yesterday. I was not able to go with her, so the information I have is not direct. It does sound like there are a couple of significant developments.

First, he mentioned a physician in Iowa that performed an experiment with sauna therapy. This doctor had several patients who were positive for mycotoxins. I don't know how many patients were involved. The doctor had the patients spend time in a sauna then retest two days later. All of the patients experienced a significant rise in their mycotoxin levels. Brewer believes that heat will cause myctoxins to be released from the tissues. He indicated that his patients who are able to exercise generally do better and he believes that either exercise or sauna will release mycotoxins. He didn't offer any specific recommendations.

The other development is that Brewer now has a hand full of patients (about 5, I believe) that have achieved what I would call the mold treatment trifecta:
1. A complete resolution of symptoms.
2. An RTL test showing zero mycotoxins
3. A sustained time off treatment without relapse

These patients all treated for over a year and have gone about 2 or 3 months off the protocol. So I suppose you could say these patients are in remission with the possibility of eventual cure. These are my words, not his.

It looks like he has really settled into a set protocol as there haven't been any changes on that.

Brewer emphasized how variable the road is for his patients, but clearly it takes a very long time for people to achieve their highest level of improvement. Mentally, I am looking at this as a two year process.

 

[Skiii]

iFish your updates are very much appreciated, thank you for helping us all keep up to date. That is wonderful, reassuring news about the patients in remission.

As for the sauna, I thought that was already known? My doctor had told me that and I know I've read it a couple places, too. I hate sitting in saunas but I've been trying go, especially since my number one symptom is painful myofascial/muscle knots, so I figured the mycotoxins are definitely stored in my tissues. My doctor recommended taking some CSM right after to help get them right out after being released.

 

[Skiii]

Also, I have this thread "watched" but I don't get notifications unless I've posted recently so I didn't even realize the conversation was going. Anybody know how to fix that?

Soundthealarm, same here. I just try to remember to come check every couple of days...

 

[Soundthealarm21]

So I've been doing Hyperbarics now for some time and my last real time lab showed

.03 Tricothecenes which is almost zero and well below equivocal, but the problem is I still feel like crap and was re exposed again!! As much as I try mold keeps following me!

I'm still waiting on a nasal culture and the next step will be to try some of Brewer's protocol. My doctor has talked to Brewer before and has a basic idea of what to do. He said that he doesn't prefer it because it is very harsh (I assume he means things like nosebleeds and on the sinuses). But we'll see how that goes. In the meantime, I've been on Adderall and it makes me feel a bit better but not even amphetamines can keep me from being sleepy!

Hope everyone else is doing ok!

 

[Skiii]

Soundthealaram. I clicked on notifications on the top right. Then clicked on Watched Threads on the left. Then I had to click on the little "show all watched threads" then check the box for this one and select "enable email notication" from the menu. I wonder if that will work! (they certainly didn't make very visible)

 

[consuegra]

http://cfspatientadvocate.blogspot.com/2014/10/dr-joseph-brewer-at-ilads-2014.html

 

[Skiii]

Oh great! I had written him a comment yesterday asking if he had gone and for an update on Brewer's talk.

 

[Little Bluestem]

The doctor had the patients spend time in a sauna then retest two days later. All of the patients experienced a significant rise in their mycotoxin levels. Brewer believes that heat will cause myctoxins to be released from the tissues. He indicated that his patients who are able to exercise generally do better and he believes that either exercise or sauna will release mycotoxins.

So a rise in mycotoxins is a good thing?

 

[Cheesus]

So a rise in mycotoxins is a good thing?

The release of mycotoxins is a good thing. I also think it is probably coming from the lymphatic system rather than tissues.