Is Mold a part of your CFS 'puzzle'?

[Lieselotte]

@frozenborderline thanks for all the podcast and other links. I'm aware of Lisa Petrison's Mold Avoidance stuff.

It was suggested to me that I try a mold sabbatical, but I don't know that I'm sick enough from mold that I would get the kind of immediate tell tale signals that you and others get when somewhere moldy. I'm on the mild side of CFS and I am afraid I won't get the Aha moment.
I have never camped in my life (great for not getting lyme!) and also would be camping alone. Um, yah. I feel like I need a camping group or something to go with. Might kill myself trying to avoid mold lol.

It's confusing because while I have gotten better in my current apartment, it's not the cleanest ERMI, and I probably brought in contamination from where ever I was that had mold (I don't know where it was!). If my illness were predominately bc of mold I wouldn't have gotten better at all. Which also makes me wonder if I'll ever get the "Spidey-sense" for mold.

Did you get the whole Shoemaker panel done?

 

[frozenborderline]

was suggested to me that I try a mold sabbatical, but I don't know that I'm sick enough from mold that I would get the kind of immediate tell tale signals that you and others get when somewhere moldy. I'm on the mild side of CFS and I am afraid I won't get the Aha moment.
I have never camped in my life (great for not getting lyme!) and also would be camping alone. Um, yah. I feel like I need a camping group or something to go with. Might kill myself trying to avoid mold lol.

My sister doesn't have cfs for what it's worth and as my caregiver going camping with me noticed she reacts to mold in ways that aren't PEM but are still severe. So she doesn't even have cfs but she reacts. I think more people do than one might expect but it's your choice. I just try and put tbe info out there. The first podcast I showed you was interviewing someone who didn't have cfs but rather mild fatigue and severe depression and once he did a sabbatical he noticed mold was responsible for all that.


I don't know how dangerous camping is. Of course I went with another person, but since I was physically disabled it wasn't as if I was much use if we got attacked and we didn't have mace or a gun and my caregiver wasn't strong but we felt generally safe. The only people we ever feared were police. Just bc they can hassle u if you look homeless. But not any weird true crime podcast type situation. Or animals. But there are people who have done this as single women and wrote about how they stay safe. I forget where, but you can find them in groups.

 

[frozenborderline]

It's confusing because while I have gotten better in my current apartment, it's not the cleanest ERMI, and I probably brought in contamination from where ever I was that had mold (I don't know where it was!). If my illness were predominately bc of mold I wouldn't have gotten better at all. Which also makes me wonder if I'll ever get the "Spidey-sense" for mold.

Ermi doesn't mean much in my opinion. There are places with visible mold people feel good and places without visible mold that look clean that are bad. It's a more complex effect , had to do with stuff we don't measure commercially yet. Possessions and contamination do matter but that doesn't sound all that strange bc even if you do it imperfectly you can get a bit better if you move to a better place. I'm sure you'd get more clarity if you experimented with different variables tho

I don't believe in the shoemaker approach. I mean I think it's worth trying maybe after someone has exhausted all the other mold avoidance basics and wants to see if it works, to use his method of deTox and addressing inflammatory markers , but it's Far less reliable than learning to sense and doing avoidance. And if people need to detox they can sweat In good air they don't always need binders although those work for some people. So idk what to say, I personally don't think those tests like ermi or even the shoemaker blood panels have much solid meaning. I mean the blood panels are somewhat interesting as part of a larger picture but I'd never solely rely on them. The ermi though, I consider even less reliable tjan the blood panels. It just means nothing when nanoparticles from industrial materials aren't tested for. Or mycotoxins. Or when mold acts up sometimes and that isnt reflected in the total spore count.

 

[Lieselotte]

My sister doesn't have cfs for what it's worth and as my caregiver going camping with me noticed she reacts to mold in ways that aren't PEM but are still severe. So she doesn't even have cfs but she reacts.

Interesting. Lots of people on mold FB groups have severe reactions too (without CFS). But they also got very sick from mold and know it was from the mold.

Thanks for all the info, I appreciate it!

 

[frozenborderline]

Interesting. Lots of people on mold FB groups have severe reactions too (without CFS). But they also got very sick from mold and know it was from the mold.

Thanks for all the info, I appreciate it!

I think it's fairly rare people immediately know for sure their reactions and sickness are from mold actually. Most people are masked, whether they have me/cfs or something else.

My sister didn't know she had any reactions to mold until she did avoidance for awhile and became unmasked. Then she started realizing how mold affected her in the present but also how it was responsible for past things like depression as a child in our house.

Sometimes reactions get so bad people can tell its mold even without becoming unmasked but in my exorience that's the exception to the rule. How can you know if you're reacting to something if you're immersed in it all the time ? I thought my sickness couldn't be from mold , bc I didn't have some sort of obvious reaction but mostly got gradually sick with some episode of getting sick faster but nothing correlating *obviously * to environment. The reason being I hadn't lived in a good environment the whole time I was sick, just different environments that were all bad to different degrees.

The person I interview on "go west young man" also didn't think his issues were from mold until he went to Wyoming and then back and had an accidrntal sabbatical on a vacation with family. I guess I just see more people that don't know it's an issue than that do know.

 

[frozenborderline]

Interesting. Lots of people on mold FB groups have severe reactions too (without CFS). But they also got very sick from mold and know it was from the mold.

Thanks for all the info, I appreciate it!

I think it's fairly rare people immediately know for sure their reactions and sickness are from mold actually. Most people are masked, whether they have me/cfs or something else.

My sister didn't know she had any reactions to mold until she did avoidance for awhile and became unmasked. Then she started realizing how mold affected her in the present but also how it was responsible for past things like depression as a child in our house.

Sometimes reactions get so bad people can tell its mold even without becoming unmasked but in my exorience that's the exception to the rule. How can you know if you're reacting to something if you're immersed in it all the time ? I thought my sickness couldn't be from mold , bc I didn't have some sort of obvious reaction but mostly got gradually sick with some episode of getting sick faster but nothing correlating *obviously * to environment. The reason being I hadn't lived in a good environment the whole time I was sick, just different environments that were all bad to different degrees.

The person I interview on "go west young man" also didn't think his issues were from mold until he went to Wyoming and then back and had an accidrntal sabbatical on a vacation with family. I guess I just see more people that don't know it's an issue than that do know. Bc there's not some obvious immediate reaction always if one is gradual onset sick or even sudden onset bc you could be affected by the mold your while life and then the infection or something else pushes you over the threshold

 

[Canyonk8]

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.

How are you now?? Any better? I think mold is my issue but I’ve moved 3 times too and I keep getting worse.

 

[chronicproblems]

The mold is understated since it is so difficult to diagnose.
i have been sic so long, that i dont know what it is to be normal anymore.
When i developed mcas, for long time i was in denyal for long time until i developed MCS and started reacting to mold as well.
Mold destroys mucrobiome, which destroys immunity. Mycotixns can mess with everything.