$700 mold toxin test

[NickMDal]

Hi. I have just set an appointment with the Environmental Health Center of Dallas. They want me to take the mycotoxin urine test. It's hard to go down this expensive diagnostic path with all the controversy and bad press.

I'm thinking this will surely come back positive. I live in an apartment on a lake. We have false ceiling installed HVACs that heat and cool. When they switch from heat to cooling, the house smells a little moldy until it runs a while. That's really common in this large wooded apartment community.

We have carpet. It's been raining like mad in Texas lately.

I cannot possibly move since the massive stress of moving into this apartment was a large contributor to my CFS. We have a ton of work into this place.

So I'm wondering if other less expensive preliminary approaches might provide guidance. Maybe a test of the air and carpet in the apartment. I try wearing a respirator for a few days. I could buy a couple of good charcoal activated room air filters for the price of the test.

Any thoughts about this would be greatly appreciated!

 

[used_to_race]

Maybe my thinking is flawed, but does it not strike anyone else as weird that mold exposure, at most, only causes CFS/CIRS/whatever in a tiny minority of people? They are saying that 50% of buildings in the US have a mold problem, and even if it's closer to 5%, that still means most people who have consistent mold exposure don't get CFS.

I am convinced the tests are very unreliable, and the ERMI tests claim to use PCR assays AND report quantitative values for different mold spore types, which is a huge red flag in my opinion.

That being said, if you live in a very moldy house, you should get that fixed, because mold exposure does make people sick and can put a huge amount of stress on your systems. Before getting air filters, I would see if you respond to activated charcoal binders, oral liposomal glutathione (which apparently works but I doubt it's been studied adequately), and cholestyramine if you can get a prescription. All these are relatively cheap and I would imagine you should see some improvement in your symptoms if mold is an issue.

I would imagine you're not healthy enough to travel far? You said you live in Dallas, why not try to go to a hotel for like a week in Austin, Lubbock, or El Paso (or some other dry place that's a driveable distance)? If that helps then maybe mold is an issue for you.

 

[NickMDal]

I agree! Yes I was wondering about a trip as another good alternative. Jennifer did that in Unrest and uncovered a serious issue, though I can't recall what she did subsequently.

I have a bottle of S-Acetyl L-Glutathione... It is on my shelf of questionables for possible bad reaction. Really not quite sure if it was a contributor to a hard crash when I was taking it. N-A-C did me in a few weeks ago so I have since been cautious. My head is spinning with all these supplements and treatments

 

[used_to_race]

I agree! Yes I was wondering about a trip as another good alternative. Jennifer did that in Unrest and uncovered a serious issue, though I can't recall what she did subsequently.

She ended up moving from the Bay Area to LA, up in the Valley where it's nice and dry.

I have a bottle of S-Acetyl L-Glutathione... It is on my shelf of questionables for possible bad reaction. Really not quite sure if it was a contributor to a hard crash when I was taking it. N-A-C did me in a few weeks ago so I have since been cautious. My head is spinning with all these supplements and treatments

I would try the mold holiday first if you can make it to Austin or something, and go from there. More likely to produce a major response than supplements.

 

[overtheedge]

@NickMDal one of my doctors offered me a similarly expensive mold test and at the same time ran over the supplements she had for mold, supplements being Nux Moschata LM 1 which is a homeopathic remedy and The Push Catch System by quick silver scientific, both of which are meant to detox biotoxins and other things.
I decided to just take the supplements and if they do anything then look into a test for mold, i don't know if this is the right way of doing things but the doctor didn't object and it seems sensible to me.

Today I'm three days into testing Nux Moschata LM 1 and results are very promising but it's early days, going to start the other sup in a day or two and keep testing for at least 3-4 weeks.

Spent a little over two months at another house last year to see if any improvements were felt from being away from the environment of my own house, unfortunately none were

All the best

 

[used_to_race]

Today I'm three days into testing Nux Moschata LM 1 and results are very promising but it's early days, going to start the other sup in a day or two and keep testing for at least 3-4 weeks.

Given that it's a homeopathic remedy, any effects you are experiencing are due to placebo.

 

[overtheedge]

@NickMDal have you considered asking your dr the rational for the $700 test? Perhaps there are alternatives to this test that would accomplish the same thing. There are options for testing biotoxins, for instance, the dr I'm seeing had two tests for biotoxins, one for something like $500 and another for around $240 and she preferred the cheaper one

There are $50 dollar tests on amazon that send you a kit for swabbing samples of the mold in question, if you have any patches of mold around to sample this will give you the species. If it comes up positive for one of the more dangerous molds like stachybotrys you might have more of a reason to suspect mold, though even if it is a lesser mold that might not rule out biotoxin illness, it's still possible you have it from previous exposure, other molds in the house not sampled, and, as well, allergies to mold also exist

Also
Do you know if the $700 test will guide treatment, like, what does your dr want to do if it comes up positive/negative?
If the test came back positive would it be a credible enough sign for you to consider making some big change to combat it?

 

[SeanQHX1]

@NickMDal I've been thinking about getting tested for mold exposure myself as I've been getting degenerative CFS symptoms for several years after a flu onset. I'm still trying to find out more on this before I decide to get a test. For example, I haven't yet found out if a single exposure to mold can trigger progressing CFS symptoms for years like I've been experiencing. Hopefully you can somewhat get to the bottom of your CFS and see if toxic mold is causing some issues. But I will say, $700 does sound rather expensive for a biotoxin test, I would definitelly check for cheaper alternatives first.

 

[Lucky luke]

If you had cfs before you moved there then maybe mold is not you’re problem.
I’m allergic to dustmites and dust.
Also had sick building syndrome 15 years ago because of a bad airco system.
You feel it when something in the environment makes you sick.
You get a feeling of heavy lungs, Sore throat. Runny nose.
My vocal cords got very dry and painfull.
When i removed myself from the building i was was sick for 6 months but i recovered from that.

I cannot live with carpet by the way. I allways have to clean my bedsheets every 2 weeks.
Really get rid of the dust after drying my bedsheets. Use a vacuumcleaner with hepa filter.
If i don’t.....i get a headache and fatique but i allways feel it in my lungs, nose or throat too.
But it has nothing to do with my cfs. Thats from living on coffee and stresshormones for the last 20 years.

 

[Eve18]

Hi. I have just set an appointment with the Environmental Health Center of Dallas. They want me to take the mycotoxin urine test. It's hard to go down this expensive diagnostic path with all the controversy and bad press.

I'm thinking this will surely come back positive. I live in an apartment on a lake. We have false ceiling installed HVACs that heat and cool. When they switch from heat to cooling, the house smells a little moldy until it runs a while. That's really common in this large wooded apartment community.

We have carpet. It's been raining like mad in Texas lately.

I cannot possibly move since the massive stress of moving into this apartment was a large contributor to my CFS. We have a ton of work into this place.

So I'm wondering if other less expensive preliminary approaches might provide guidance. Maybe a test of the air and carpet in the apartment. I try wearing a respirator for a few days. I could buy a couple of good charcoal activated room air filters for the price of the test.

Any thoughts about this would be greatly appreciated!

The Great Plain Laboratory offers urine test for mycotoxins for $300. It’s still expensive.
I agree with you that it’s better to spend this money on some mold remedies. After removing moldy staff I would buy air purifier and dehumidifier.

 

[sicklady23]

I've been deliberating about doing the myctoxin urine test myself because of Dr. Nathan's book Toxic. I've been researching it and mold illness in general quite a bit recently, so I'll share what I've learned so far.

My doctor doesn't specifically recommend the mycotoxin test but when I asked said he would be willing to order it. He diagnosed me with mold toxity/CIRS based on my HLDR result and MSH, TGF-1, and C4a levels (all of these are blood tests that can be done through Labcorp), plus my score on the Visual Contrast Sensitivity test (and of course my symptoms). The Visual Contrast Sensitivity test alone is supposedly about 94% accurate in predicting biotoxin illness and it's cheap, so I'd suggest starting with that. This is all part of the Shoemaker protocol and a more standard starting point than mycotoxin testing. You can find more info at Shoemaker's website, survivingmold.com:
https://www.survivingmold.com/diagnosis/lab-tests
https://www.survivingmold.com/diagnosis/visual-contrast-sensitivity-vcs

My blood work points toward CIRS but isn't super conclusive, so I was still thinking about doing the urine test and reading different takes on it. This blog post gives a detailed and balanced overview of the controversy within the mold community around this kind of testing: https://paradigmchange.me/wp/urine/ After reading that I decided it didn't seem worth the high price tag, especially since I don't know if my insurance would reimburse me for any portion of it.

You can also do something called an ERMI test to check for mold in your home, which I haven't done yet but my doctor has encouraged me to do. This isn't cheap, but its definitely cheaper than the RealTime mycotoxin test and maybe a bit cheaper than the Great Plains test, or comparable. Initially I did one of those cheap mold tests you can buy at Home Depot that grows mold in a petri dish, just to detect presence or absence of air-born mold in the home. (I didn't mail it in.)

Getting out of the mold environment is a pretty big (most say essential) part of treatment, but there are other things you can do in the meantime. I'm not able to move immediately myself. I'm currently taking activated charcoal as a binder (on my doc's recommendation). I'm also treating Mast Cell Activation Syndrome with H1 and H2 inhibitors. (MCAS is is implicated in CIRS as well as in ME/CFS.) I also bought a pretty decent air purifier for my bedroom a few months ago when I began to suspect mold was making my symptoms worse, but I haven't noticed any improvement from that.

I haven't taken an intentional/formal "mold sabbatical," but when I went back to my hometown in NC this fall for a couple of weeks my fatigue and flu-like symptoms became less severe, so that was another thing that helped substantiate mold being a significant contributing factor for me.

Hope that helps! Have you had your appointment yet? Let us know what you ended up doing.

 

[Learner1]

I just got results for the basement of a house I plan to live in. Would you be worried? It says not elevated, but there's a little Aspergillus there. Is this just likely what's in the air and impossible to get The basement is clean, enzymatically treated, and a dehumidifier has been installed. @used_to_race ?

 

[satori]

I did the test and found elevated levels of mycotoxins. Treatment included dietary changes, various OTC binders and supplements to increase glutathione. It brought the levels down and made a difference in my exercise tolerance. Cost is always a factor, but eliminating possible causal factors and learning more about your individual biochemistry always helps.

 

[Learner1]

I did the test and found elevated levels of mycotoxins. Treatment included dietary changes, various OTC binders and supplements to increase glutathione. It brought the levels down and made a difference in my exercise tolerance. Cost is always a factor, but eliminating possible causal factors and learning more about your individual biochemistry always helps.

I did the same, that's why I'm concerned about my house.

 

[used_to_race]

I just got results for the basement of a house I plan to live in. Would you be worried? It says not elevated, but there's a little Aspergillus there. Is this just likely what's in the air and impossible to get The basement is clean, enzymatically treated, and a dehumidifier has been installed. @used_to_race ?

I wouldn't really be able to say anything about those levels other than that they seem pretty low to me. Could it be that these particles are coming in from the surrounding area outdoors? Did you just have the basement tested or other areas in the house?

 

[Learner1]

I wouldn't really be able to say anything about those levels other than that they seem pretty low to me. Could it be that these particles are coming in from the surrounding area outdoors? Did you just have the basement tested or other areas in the house?

Thanks for your thoughts.

Yes, the guy who came back to retest said those look like the outside air quantities. I had multiple areas of the house and the basement tested and the first time around a little mold was found in the unfinished basement, and I had it remediated, insulation pulled out, and treated with ozone and enzymes. I realize mold is in the air in most places, and I'm hoping this is adequate for now.

 

[satori]

I didn't test my house, but I keep the humidity down and disposed of everything that could be a substrate (paper, corrugated etc). I keep the basement well ventilated and don't store or keep anything down there. I think there is a genetic deficiency in handling the mold so I focus on increasing my ability to detox and eliminating foods that are moldy. It seems impossible to eliminate mold completely from your environment so I just try to reduce it as much as possible and avoid places that are known to have issues. I also test periodically to ensure something hasn't cropped up. Not sure if it's possible to do anything better, but it seems to be working so far.

 

[Learner1]

I also test periodically to ensure something hasn't cropped up

What test do you do and how often?

 

[satori]

What test do you do and how often?

Realtime Labs Mycotoxins every other year.