Is Mold a part of your CFS 'puzzle'?

[Lieselotte]

I'm surprised how infrequently there are posts related to mold illness on this forum. I recently found out that mold might be a part of my illness 'puzzle'.

I have worked on many things since I 'crashed' and had moderate-mild CFS and I'm much better, but looking for other things to further close the gap. My doctor ran urine mycotoxin testing on me. Several mycotoxins showed up. I also took a test called the MyMyco Lab test, meant to test IgE and IgG reactions against a list of mold mycotoxins. There was one very high on IgG.
This led to spending a lot more money than I should on testing my apartment for mold, with confusing results.

None of these tests can say if you're being exposed currently, or just have a bunch of mycotoxin stored up. With my crappy detox abilities, it could easily be old mold.
Either way, I'm treating for mold and candida now.

Has anyone found that mold is a part of their illness triggers for CFS? I don't have CIRS so I am pretty sure mold just 'filled part of my bucket' leading me to crash along with everything else.
I also wonder how many of us PwME haven't even been tested for mold?? Seems like something that should be covered just in case...

I have learned a lot about mold and treatment since researching it lately. Might do a summary if anyone is interested.

 

[hapl808]

My doctor ran urine mycotoxin testing on me. Several mycotoxins showed up. I also took a test called the MyMyco Lab test, meant to test IgE and IgG reactions against a list of mold mycotoxins. There was one very high on IgG.
This led to spending a lot more money than I should on testing my apartment for mold, with confusing results.

None of these tests can say if you're being exposed currently, or just have a bunch of mycotoxin stored up. With my crappy detox abilities, it could easily be old mold.
Either way, I'm treating for mold and candida now.

This is maybe why you don't see more posts? I went down the road of Shoemaker CIRS proteges, CSM, ERMI testing, mycotoxin testing, etc. As far as I can tell, none of it is validated and all the supposed results are anecdotal at best. That said, I do think it could be involved, but like lyme a lot of the testing and treatments are confusing.

There's a few good sites I'm sure you're aware of that discuss binders and antifungals and such in detail. I've tried moving apartments multiple times and all sorts of stuff with variable results. Again, seems to be something there but not sure what's helping.

 

[frozenborderline]

Just bc Shoemaker stuff doesn't have a ton of research to back it--and to be fair, I agree about him overstating his claims relative to the research, doesn't reflect on whether mold and toxins are an issue In me/cfs.

Anecdotally, most of the people i know with me/cfs, although not all, are affected by "mold" and pollution and various kinds of outdoor air super toxins. Will post more on this later. For OP, you should read Lisa Petrisons post on urine mycotoxin testing. Basically there's no evidence to support it, and she says that despite being an ardent supporter of the mold causing me/cfs theory. We don't need to go by some poorly backed tests, mountains of anecdata, in the absence of studies, suggest that environmental toxins of some kind play a role in me/cfs. Could be relayed to comorbid mast cell activation syndrome too

This is the main reason I had to have neck surgery. Damaged my ligaments so much by tryptase and mmp9 and potentially tgf beta, all from toxins exposure, that my ligaments degraded.

 

[frozenborderline]

So I did three podcast episodes that especially touched on the mold problem, including me/cfs history like lake Tahoe outbreak and how this wad geographically bounded/patterned in a way that suggested that me/cfs has an environmental element.

https://soundcloud.com/headlessyouthpodcast%2Fgo-west-young-man

This one is long , but its good info. Basically all the details about mold avoidance you could possibly ask, some scientific speculation about it and why certain areas of the country are better or worse , how to learn to detect it. I would start there if I were you.

 

[frozenborderline]

Number 2: this one which is part of an autobiographical series on my illness story. But it includes stuff not just about me, like goes into the lake Tahoe outbreak history. Erik Johnsons scientific theories about that, and how I learned about all of this while starting to investigate whether mold was affecting my illness .

Its also shorter than the other one. But doesn't get into the "how to" of mold avoidance as much.

https://soundcloud.com/headlessyouthpodcast%2Forigins-pt-3

We are doing another one soon that covers a bit more of my mold avoidance journey.

 

[frozenborderline]

https://soundcloud.com/headlessyouthpodcast%2Ftribulations-25-ft-allegedlyzo

"Lyme Wars". This is mostly about lyme disease and the history of US bioweapons testing, but it also goes into the nanoparticle /mold theory that erik Johnson has posited, gulf War syndrome and how that may be related to environmental toxins , and how we can conceptualize post lyme/chronic lyme as analogous to (albeit somewhat different bc lyme Is a bacterial disease) ME/CFS and similar diseases which have an infectious component but also may have an environmental component, fitting into what @Hip calls the "dual factor theory"

 

[frozenborderline]

@Lieselotte let me know if any of this is helpful

I also have other sources besides my own. I even have videos, but were not supposed to post videos on here so you can simply message me if you want those. I recommend Lisa petrisons website https://paradigmchange.me as a start

 

[hapl808]

This is the main reason I had to have neck surgery. Damaged my ligaments so much by tryptase and mmp9 and potentially tgf beta, all from toxins exposure, that my ligaments degraded.

I wonder if some of my ligament damage is from mold exposure, but my current place has been tested numerous times by various methods from traditional to ERMI and mycotoxin and found nothing of note. All hardwood floors, relatively dry climate, imperfectly sealed windows, air purifiers in the frequently inhabited rooms, etc.

Shoemaker stuff just didn't work great for me so far, yet I feel like mold makes sense. I can 'smell' a musty smell even in places no one else can sense it. And occasionally I find a place that 'smells' perfect and I feel amazing, but it's always a doctor's office (well, that's the only place I 'visit' anymore). When I've tried to figure out what they do, I can't figure it out. Is it UV in the air ducts? That seems to have some downsides, Some kind of industrial air scrubber?

I use mostly HEPA, charcoal, and Airfree devices.

 

[frozenborderline]

I wonder if some of my ligament damage is from mold exposure, but my current place has been tested numerous times by various methods from traditional to ERMI and mycotoxin and found nothing of note. All hardwood floors, relatively dry climate, imperfectly sealed windows, air purifiers in the frequently inhabited rooms, etc.

Shoemaker stuff just didn't work great for me so far, yet I feel like mold makes sense. I can 'smell' a musty smell even in places no one else can sense it. And occasionally I find a place that 'smells' perfect and I feel amazing, but it's always a doctor's office (well, that's the only place I 'visit' anymore). When I've tried to figure out what they do, I can't figure it out. Is it UV in the air ducts? That seems to have some downsides, Some kind of industrial air scrubber?

I use mostly HEPA, charcoal, and Airfree devices.

See I don't take ermi testing or shoemaker stuff that seriously. I think shoemaker has some good ideas about mold and inflammation cascades but he really only has a small piece of the puzzle. A lot of toxins , whether you want to call them mold, or other biotoxins, or slurry of nanoparticles and mold or cyanobacteria, don't show up easily on current tests.

Outdoor toxins are also a major factor. That's why I recommended the podcast and the website paradigmchange.me . The outdoor toxins can be bad enough that people don't get relief from going outside. It's possible that house mold isn't the problem. But then if one leaves their whole area and gets to a better area you realize this affects you. Especially If you come back to it and feel the sheer difference/intensity.

Also As far as i can tell air purifiers are not very good for this and are only useful if you have larger particulate pollution like that caused by fires. Maybe I haven't been clear enough in my posts. The podcast covers this but I get it, it's fairly long. So if you want shorter articles Lisa's website has them.

The basic stuff that most mold doctors teach involves half truths and maybe damages the credibility of patients speaking about their real experiences with these toxins. Mold isn't easy to test for with existing tests. It needs to be studied in deoth with gc/ms and looking as well for nanoparticle pollution, and vocs. It's also not just an indoor problem and it can't be solved thru air purifiers (maybe it can in rarer cases with thr really really expensive non hepa air purifiers that filter small stuff , but even those have mixed reviews). It's something that contaminated belongings easily. Thus I think looking at it in the moderate way most mold doctors look at it and giving people charcoal or csm while not having them go to wilderness air to heal, is a limited way of looking at it.

 

[hapl808]

But then if one leaves their whole area and gets to a better area you realize this affects you. Especially If you come back to it and feel the sheer difference/intensity.

Yeah, I agree. Just not sure what to do about it. As I was getting worse, I tried several different apartments and locations and most were actually worse than my current apartment (including one very clean one in the desert).

Now I no longer have the physical strength to move, so I'm stuck here. Even if I could go somewhere, the crash would likely last for months and I don't have the money to just 'try' some great new place.

Hard to distinguish between ME/CFS, mold, EDS, and so forth. That's why I always hesitate to even say ME/CFS as I have no idea if that's what I have or what that is. Disorders that have criteria to me aren't really 'diseases', just poorly understood symptom clusters. Might be one disease, might be 20.

 

[frozenborderline]

yet I feel like mold makes sense. I can 'smell' a musty smell even in places no one else can sense it. And occasionally I find a place that 'smells' perfect and I feel amazing, but it's always a doctor's office (well, that's the only place I 'visit' anymore). When I've tried to figure out what they do, I can't figure it out. Is it UV in the air ducts? That seems to have some downsides, Some kind of industrial air scrubber?

You should trust your intuitions.

I think having something like a non traditional building made of metal and simple insulation or Adobe is better than any normal type of building but it makes sense some doctors offices might be better. Some are bad of course but commercial buildings like offices or hospitals or hotels actually seem to have better ventilation and purification than a lot of non commercial buildings. I did say that purification doesn't really work and this is somewhat true , but it's mostly true for individuals who can't afford industrial scale air filtration systems. If one could afford those maybe it would be good to use them.

But the main tenet I adhere to is trying to find the best air possible, usually in nature, to unmask and to gain ability to discern bad air from good. To hone yr senses and partially recover

 

[frozenborderline]

Yeah, I agree. Just not sure what to do about it. As I was getting worse, I tried several different apartments and locations and most were actually worse than my current apartment (including one very clean one in the desert)

there have been lots of bad places I've found in the desert. I think the west is generally better for avoidance but only by a little bit and it's bc of the wilderness and public lands there. Not bc of the dryness. So it's easy to find cities and towns or even some parks in the desert that aren't good. And the housing isn't even always better. Sometimes they use swamp coolers and it makes it moldier.

Tucson arizona for example is in the desert and is very bad. Also Joshua tree used to be amazing and now it has gotten a lot worse or hit or miss which makes me sad. There are still good parts and seasonal changes but it used to be basically perfect ten years ago

Now I no longer have the physical strength to move, so I'm stuck here. Even if I could go somewhere, the crash would likely last for months and I don't have the money to just 'try' some great new place.

it's a pain, I understand. I live on ssi and it's hard to do this. I am currently trying to fundraise for a trailer. Making small steps can help. There are some "normal " buildings I've found thru my journeys that were less moldy and also in good outdoor air I just think they're rarer than finding, say, a good campsite or a good trailer. I'm a bit tired but maybe I can try and talk thru solutions later.

I do think you never know what could be good. It's not always only desert places. Desert in Erik's lingo is almost a metaphor to just mean deserted wilderness. Lots of wet places in Appalachia or the east I've been had good air. Or I the rockies or Sierra. Not only desert.

 

[frozenborderline]

I am crashing after writing a bit so maybe it will take me awhile to respond and help you, but I will say my podcast had some stuff on how people can make this practically viable. But I was interviewing someone who was moderately or mildly ill. When severely ill its harder. You either need a caregiver to take u camping or to have a ready-made trailer to live in or to move sight unseen to a random house in a new location with good reports. It makes it harder to experiment. But there may be options. Don't totallygive up hope

 

[hapl808]

But the main tenet I adhere to is trying to find the best air possible, usually in nature, to unmask and to gain ability to discern bad air from good. To hone yr senses and partially recover

Sadly I am now totally housebound and went pretty broke chasing that idea (I moved like five times in two years while researching every cleaning method and building material and CIRS blogs and podcasts and so forth). VCS, CSM, MARCoNS, charcoal, chlorella, spirulina, zeolite clay, air purifiers, mold testing, masks, and so forth.

So there's no real option to go anywhere else now unless I was guaranteed that it would heal me. I think I reached the end of that road unless some great new research comes along.

Thanks for responding. Too wrecked to listen to the podcast but I'll try to check it out later. Don't see how it can be useful anymore as I have no caregiver but feel lucky that I can still make it to the bathroom and keep myself fed.

 

[hapl808]

And to clarify, I was very careful. I bought new clothing, a new suitcase, took nothing that wasn't metal or plastic, etc. Back then I was reacting to everything, but wasn't sure if it was CIRS or MCAS or MCS or whatever. I am less reactive now, but maybe even more severe general ME/CFS threshold stuff.

 

[frozenborderline]

Sure. Look to be clear I'm not telling g you to go this route. There are other aspects of me/cfs.

But I will say for me , I was so sensitive I would never have gotten results just moving to another building even with a low ermi. Like 95 percent of all indoor buildings were bad for me and even the remaining 5 percent were worse than being in outdoor air. Even while bedridden I got dragged in bed in a car to camp in remote outdoor places and I only started noticing differences then. Before that I tried staying in other houses evenfairlyclean ones without possessions and didn't notice ANY difference really. For me I had to be outdoors in great air for awhile to heal. And I went from bedbound to walking about a quarter or third of a mile consistently without pem, which doesn't sound impressive but I was almost paralyzed to start. And my cognitive energy improved more probably. I went from reading only a paragraph to reading Dantes inferno.

And then I got covid and had to move for surgery and got pneumonia and a major surgical wound infection and antibiotics that were extremely heavy duty, not just doxycycline .

And I lost all my gains basically. But I still get significant relief from a lot of mcas and neuro inflammation symptoms and even pem to an extent by going to the nature areas around here ... I'm too poor to make it easy. But I have to tell the truth about how dramatically it helped me in thr past bc even if it's a very inconvenient treatment , we need to study this. It's so important. And some people may benefit from seeing it

And to reiterate I never would've gotten those gains doing the shoemaker approach and just moving to houses with different ermis. I needed extreme wilderness air to get the boost. It may not be sustainable and I'm doom and gloom about the future of clean air in our country. But it's something

 

[hapl808]

For me I had to be outdoors in great air for awhile to heal. And I went from bedbound to walking about a quarter or third of a mile consistently without pem, which doesn't sound impressive but I was almost paralyzed to start. And my cognitive energy improved more probably. I went from reading only a paragraph to reading Dantes inferno.

That's very helpful to know - thank you. And walking 20 feet without help sounds impressive to me.

Sadly I probably could have swung it when I was more moderate, but I had to deal with other stuff then. Being close to bedbound with no caretaker anymore makes it harder. But I'll keep it in mind in case I can figure something out. How were you able to be in a camp or outdoors? I can't imagine how I could use a bathroom when it's already a bit difficult in a relatively handicapped friendly environment.

 

[frozenborderline]

That's very helpful to know - thank you. And walking 20 feet without help sounds impressive to me

More than 20 feet! We didn't measure it but one time I went very very far... maybe even half a mile. I wish we video recorded it. A lot of people don't believe me. I have videos of me going shorter distances or just pictures of me in the midst of walking, but we didn't think about having g to "prove" it worked at the time. Anyway I'm not trying to sound like a zealot. I don't think this is the only piece of the me/cfs puzzle. But it is a very underlooked and important one. We need more study on it bc its obviously a hard one for people to solve on their own. I couldn't financially sustain that lifestyle indefinitely. Tent camping was one thing but in the winters , especially in more high desert or mountain areas, we needed to pay for airbnbs or hotels.

 

[frozenborderline]

How were you able to be in a camp or outdoors? I can't imagine how I could use a bathroom when it's already a bit difficult in a relatively handicapped friendly environment.

Well part of what made it work was I improved a little bit even immediately so being wheeled to or crawling or walking a few feet to a bathroom wasn't as big a deal. We mostly used buckets as we camped off grid. When we camped at campgrounds we used their facilities and I got wheeled there.

It was a lot of work for my caregiver especially starting off but it paid off. And we dragged a real mattress with us in the van. So I could sleep in a tent or under a tarp but not on a camping cot as that wouldn't have supported my neck enough. We made lots of accommodations for my disabilities. I know it sounds insane being that frail and going camping. It sounded a bit insane to us too but I had basically nothing to lose. I was ready to totally give up anyway . So i thought what's theharm in this. Worst case scenario I'll give up anyway but have gotten to see the grandcanyon . Also initially I was very sun sensitive from the illness so we only camped in forests or places with shade shelter. as I became less sun sensitive and healed we started to be able to camp in meadows or plains or open desert more.
That's an example of working with limitations .

We also brought lots of meds with us and had a doctor who said he would tell doctors to give me saline and oxygen if I was ever sick and needed to go to a hospital in a crisis in another state.

Keep in mind tent camping long term nomadicslly is tough and I could only do it with a caregiver but sometimes one can find a longer term rental or airbnb where you can set up a place to sleep outside or something and not have to travel around as much if you find a good spot. Or you can , if you can afford it, live out of a custom trailer or van with conversion and insulation.

 

[hapl808]

Or you can , if you can afford it, live out of a custom trailer or van with conversion and insulation.

I kind of wish I tried this a few years ago when I had a bit more money, but obviously we only know in retrospect that other stuff we tried didn't work. I thought moving to a concrete and glass building with an elevator would be good for me, but for various reasons I don't think it worked great. I did 'heal' my MCAS or MCS a bit in that time, so I became slightly less reactive.

The worst place I moved was ironically right near the beach. I lasted one night and it set me back quite a bit. So hard when you can't move yourself, but I had a few more friends I could call on back then. Eventually they get tired of the harebrained schemes when there doesn't seem to be any payoff.

Of course when I was 'moderate', it felt pretty awful at the time. I could maybe go up a flight of stairs once in a day, could leave the house only a couple times a week. Now I long for that level of ability. It would be much easier if I could walk a few steps, handle a car ride, etc. I know it's been said here a lot, but more severe really feels like an entirely different illness than mild and moderate.