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Mold

sunshine44

Que sera sera
Messages
1,131
how many of you guys feel mold is a situations with you? My dr really thinks mold is getting me and worsening situation. We don't see a lot but there is some and come to think of it I had a huge crash after making a small comeback in September 2017 after.....cleaning a moldy screened porch.....and when I would try to sit in that room for that year I would begin this strange spinning which I never had before...connecting dots...its not my whole picture but me thinks this could be a huge puzzle piece of the bricks on my immune system.

I feel like I remember Howard and Jesse's mom mentioning mold. We do not have money to remedy and search and etc but looking into hat we can do bc I do wonder how much this is contributing.

Also, has anyone ever tried to move to another room of their house for those bedridden? Because ever since I moved from sleeping on couch to being in bedroom since last August I have declined significantly. I had been improving weekly before supplement crash mid August. then when home from hospital we moved me in bedroom for first time in 1 1/2 years. hmmmm….wheels a turning. Would need to mentally prep for a move like this for me right now.
 

Wishful

Senior Member
Messages
5,680
Location
Alberta
That would be an individual response: some are sensitive, some aren't. I'm not sensitive to mold. I'm not bedridden, but changing beds and bedrooms had no effect on my ME.
 

sunshine44

Que sera sera
Messages
1,131
thanks, I should add that the bedroom I am in most likely has mold. the living room I was in before did not.
 
Messages
83
Agree with @Wishful.

I think that if it's reasonable for you to get back to that other room and you feel better there, it doesn't really matter if it's mold or not because at least you'll get some relief. And, if you feel worse in other areas (like the porch), you might as well avoid them if that's possible.
 

sunshine44

Que sera sera
Messages
1,131
thanks everyone I should note that getting t my other rooms is a bit difficult right now.

Was just wanting to see if others have had mold issues worsen their symptoms...
 

fredam7

Senior Member
Messages
153
interesting bc I have been having many histamine reactions that are unexplained.

Yes, yes and another yes, mold kills people. One of my biggest regrets in life , was being clueless about mold . It will destroy a person and no one is ok with mold , you don't need a special sensitivity , mold can destroy anyone . I'm a person that had no allergies and used any product , ate any food and didn't so much as have a sniffle during whenever allergy season is.

I am now "allergic " to all food , products , even my own self .

What makes one "sensitive " to mold , is exposure and damage by mold ! I'm sure I encountered mold a lot but it was low enough that my body dealt with it , not because I don't have a special sensitivity. After a surgery , I was home a lot , black mold was there , I got sick and then sicker .

Also interesting is when I first moved there , I did great mon-fri because I was on campus 12 hrs a day , but then on the weekends I would get uneasy , didn't want to go out , had a lot of pain , would almost become afraid and then Monday I couldn't wait to get back on campus and I was good again .
I'm 100% positive that mold is a killer . And I too have MCAS or really , massive histamine reactions due to mold . I got so sick and bedbound and I knew mold was killing me but couldn't get out . My so called family left me there to die . My cats had all the same symptoms so I had to get them out . I put them with a fritnd and 5 weeks later , one cat stopped her hand tremors and hyperasthesia symptoms. Both stopped scratching , both stopped sneezing , both stopped vomiting , both stopped staring at the wall . One vet told me she had cancer ! I knew it was the mold . I then moved us all to a hot place and they got even better .

Then my belongings arrived , the cats crashed , badly . One didn't know where he was , the other started hiding . They were paranoid , cried , started vomiting . I took everything and put it in storage but it took 6 weeks for them to get better but they're not as good as the first time because the belongings released mold spores . So now I have to move but am bankrupt .
I put them on the balcony so they can breathe air . But there is definitely the same mold spores in here , it has a horrid smell . All my sneezing and face shocks returned etc . I also became so anxiety ridden I can't get into it because not allowed here

I did see an immuno who wanted to do a skin prick and patch test and I declined becsyde I would get false positives on all of them . A year prior I had a skin prick and the dr had not even gone to the second tray and one blew up and she asked if I was around mold and I said yes and she said move immediately. I didn't for reasons mentiinsed . Well , they all ended up positive and I don't have allergies , it's like you said , histamine problems because of the mold

So with this dr I said I would do blood tests . He thought I had allergies and I told him I have none ! Why don't they listen ? I have NO allergies . I told him I had been exposed to mold . When the tests came back , all the allergies were negative but all the mold ones were positive which means my body is producing antibodies becYse guess what ? It's under attack by mold . Not because I'm allergic to mold , that's absurd . But once you are attacked by mold , you will forever react to it .

There is a good article about a man who had a heart attack and died at 36 from mold exposure . It was his second exposure .

Erik Johnson is right about everything he says . Mold is a killer . He went to the desert and got better . You have to run from mold like the plague
 
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Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I know @Gingergrrl had a lot of issues with mould. Hopefully she will notice the tag and have something to help you?

I don't seem (?) to be that sensitive to it. But I am not sure 100%. I have lived in a scenario for much more than 35 years where one can NOT get away from mould.
Even when in the woods I can smell it. It is present on the firewood logs I bring into the house. Not obvious, but I can smell it....that earthy mushroomy smell that I actually quite like...:cautious: I have lived like that for so long and almost all of the time in peak health.
It is only this last year since a flu-like illness that I have had CFS symptoms.
So I wonder in my case if mould has nothing to do with it.

But I do hear you about moving rooms. I am better where I am (in the bedroom) and not so good elsewhere, but in my case it may have more to do with quality of sleep which seems to be so crucial for me and also strange.

Other things can contribute to being unwell/uncomfortable in certain rooms. One idea is examining what unseen factors may lurk in that room, or on the other side of the wall, such as proximity to smart meters, EMF s etc. And routers, smartphones. That sort of influence could include close neighbours, if for example you sleep in a room witha EMF source through the wall from a neighbour going on all night and day (which you probably wouldn't even know about but which might affect you.)
If you think that might be a factor, you can test that with an EMF detector.
 

Wishful

Senior Member
Messages
5,680
Location
Alberta
I don't believe that exposure to mold guarantees that it will cause problems, and they'll lead to more allergies. I was allergy-free until sometime in my 30's, when I suddenly had an allergic reaction to something from evergreen trees in winter (I assume it's a mold spore). I still have that allergy, but didn't develop any others. As with Wolfcub, I hike in the woods with plenty of fungi around (decaying wood and vegetation everywhere). No problems from that (yes, it can smell nice). My tiny cabin has high humidity in winter, so black mold does grow in the corners. I haven't noticed any symptoms from it (have scratch&sniffed it to test).

I accept that some people have problems with mold, but it's not a guaranteed health hazard for everyone.
 

fredam7

Senior Member
Messages
153
Mold leads to more allergies ? I don't see where anyone said that . The person that is wondering about mold , said it could be linked to their histamine reactions .

That's correct , a lot of people who develop sudden "allergies ", have out of control histamine and mold is linked to a lot of cases , those who know they were exposed to a lot of mold .

Allergies is in quotes, because having a reaction to everything , is clearly not true allergies . You're mentioning AN ALLERGY. Some can't tolerate anything or are showing allergic symptoms to a long list of things when they did not have s problem In the past

We are not saying people can't get an allergy at any point in their life , that's common knowledge . No one is complaining that pine needles bother them or hay, it's not a few things that don't disrupt lives .

People are going on strong medications like IVIg , xolair and oral medications , desperately trying to control the fact their body sees everything as an invader , the reaction is allergic .

I hiked a lot before getting sick , mold was around , but I didn't live with black mold nor lie in bed like many of us are forced to do , for days and weeks and months and years, and breathe mold .

Mold is a hazard to all living beings . Are my cats just sensitive ? All 3 who got very ill? Or the neighbors who's animals nearly all died in quick succession and vets didn't know why? Mold is dangerous and I wish I knew earlier .

There are dr's that have told people not to worry , only if their immune system is really compromised . Then if you see a dr who came from Europe of former Soviet Union, they will not hesitate to tell you mold is the CAUSE of CFS , MCAS and small fiber neuropathy and many other illnesses.

There are people who had short term exposure and took years to recover . There are people who don't even know it was mold that caused their ill health .

Mold is not safe for anyone , at all. There are neurotoxins in mold . People don't even realize mold is making them sick because it causes confusion that's so mild at first , the person doesn't even know.

Add to that , people on this board are very compromised and I wouldn't want anyone thinking they can scratch
And sniff mold . They can't hike nor eat , last thing they need is to relax around mold .

There is also evidence that mold can cause CFS.

This is not about mold causing a few random allergies . The entire immune system
Is destroyed. Allergies can't even be identified because it is everything, every smell , every food , every product . Some of us can't even use soap.

I had no allergies whatsoever , to anything. I then had an allergic response to everything. I don't call this allergies . Are people with AIDS who can't tolerate anything in or outside their bodies just allergic ? Or is their immune system badly compromised . That's what I liken it to .

And some here do have immune deficiency, such as myself .

Mold is not to be taken lightly , especially for people on this board , the vast majority will be killed by mold or never leave bed again . Everyone must get away from mold .
 
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frozenborderline

Senior Member
Messages
4,405
I do think mold is underrated as a toxin. It was, after all, present in many of the buildings in which people got sick in Tahoe. There were also Cyanobacteria blooms at the same tome. The type of mold matters a lot. I don’t think genetic sensitivity plays as much a role as just “priming”/sensitization by overexposure. People who become sensitive I think probably always reacted a little bit to mold , and I think this is normal for most people, but at some point their immune or detoxification systems became overwhelmed and went haywire.

Trichothecenes are toxic to everyone. It’s not about allergy. They produce ROS , suppress immunity , and inhibit protein synthesis. But it seems that there are environmental factors in the past 40-50 years that have made mold a lot worse. Some speculate that it’s because molds do a kind of biowarfare in which they produce worse toxins to outcompete other molds, and if they are prodded by environwmrnal toxins they may start producing worse ones. Some speculate that nanoparticle pollution makes mycotoxins more bioavailable in the same way that nanoparticles are used to make drugs or vitamins more bioavailable. Both seem far fetched at first glance but I don’t believe changes in building practices are enough to explain the explosion in sick building syndrome.
 

GypsyGirl

Senior Member
Messages
165
Location
North Carolina
Yes, mold was/is a huge component to my ME/CFS, triggered after moving into a moldy rental home. Not the only factor, but huge. I was also diagnosed with CIRS (chronic inflammatory response syndrome), a neuro-immune syndrome response to mold or biotoxin poisoning. Like @debored13 mentions, this is a neuro-immune priming response.

It was not toxic black mold that made me sick. Nor was it visible mold, just poor circulation in a partially built in basement with relatively mild water damage, so I never thought of mold as a cause. By happenstance, an ENT examining me for something unrelated noticed my weird health history and asked if I'd moved or changed jobs when I got sick. He saw mold illness often enough to recognize it. Though he didn't know much about treating it, he was able to confirm my diagnosis thru blood work recommended by Dr. Shoemaker's research about biotoxin illness.

Mycometrics ERMI is a useful test to check for mold levels in your home, but pricey ($300?). Mold is airborne; if you're sensitive and in a home with mold, you're unlikely to have relief from moving into another room because it's in the air and in your things. (I tried so many things to make the space better/workable.) My SO lived in the same house and wasn't affected. I do have the "dreaded" genetic haplotype of multi-suspectible to biotoxins/hard to treat. Was always a little sensitive, but this exposure coupled with a flu (dx-ed as post viral ME/CFS) broke me for some time.

Until I addressed that, I saw virtually no improvement from all other treatments. I went from being an active athletic social person with a full time job & gigs on the side... to severe ME/CFS, bedbound for a couple years unable to sit up even in a wheelchair, all my body systems were affected and many failing. Had a bunch of other diagnoses. (POTS, hypothyroidism, adrenal issues, gastroparesis & GI issues, thrombocytopenia, etc etc)

I've largely recovered from the ME/CFS issues (maybe 70% back to normal?), despite struggling with other health issues. I still have CIRS, and biotoxin exposure can trigger immediate, severe symptoms, but I recover much quicker - possibly a neuro-immune improvement, but possibly the lifestyle changes I've been into place to recover (an adapted Shoemaker protocol).

It was a hell of a time, but I was lucky to figure it out so quickly and recover in the ways I did.
 

frozenborderline

Senior Member
Messages
4,405
@GypsyGirl i'm heartened to hear you made it from bedbound to way better by addressing mold. I think its a factor in my issues and things are pretty bleak but i hear a lot of good things about mold avoidance. I also have cci (most likely) but think there may be a connection btwn connective tissue issues and mold. so wanna address both.
 

GypsyGirl

Senior Member
Messages
165
Location
North Carolina
@GypsyGirl i'm heartened to hear you made it from bedbound to way better by addressing mold. I think its a factor in my issues and things are pretty bleak but i hear a lot of good things about mold avoidance. I also have cci (most likely) but think there may be a connection btwn connective tissue issues and mold. so wanna address both.

Mold (and biotoxin) avoidance has been the single most helpful thing for me, and I posted some specifics in this forum years ago when first forming a working avoidance protocol (if that's useful to you, it's searchable).

I definitely see correlation between mold + connective tissue issues. There's a bit of literature out about mast cells and ligament laxity, a bit about biotoxins causing collagen damage/degeneration. I have hEDS, but had no problematic symptoms till that big crash/onset/trigger. I may not have all the puzzle pieces but have noticed ligament laxity worsens with biotoxin exposure and decreases with avoidance, along with all related comorbidities. It's wild, like a biotoxin lighting rod.

Also trying to get evaluated for cervical instability, the most disabling issue atm. :/
 

Hd-x

Senior Member
Messages
244
how many of you guys feel mold is a situations with you? My dr really thinks mold is getting me and worsening situation.
My dr was thinking the same, because blood tests showed up some fungal load.
I switched my bedroom, renovated all rooms with mold to get ridd off it. I also installed an UV Hepafilter and mold test kits no longer show any exposure.
Doing all this cost me a lot off money, but it hadn´t helped anything.
I think it is good that the mold is gone, because mold is toxic and not any good
- it still wasn´t the cause in my case.
 
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frozenborderline

Senior Member
Messages
4,405
My dr was thinking the same, because blood tests showed up some fungal load.
I switched my bedroom, renovated all rooms with mold to get ridd off it. I also installed an UV Hepafilter and mold test kits no longer show any exposure.
Doing all this cost me a lot off money, but it hadn´t helped anything.
I think it is good that the mold is gone, because mold is toxic and not any good
- it still wasn´t the cause in my case.
Remediation is often inadequate Bc the mycotoxins persist on belongings and inthe house. The only way to know is really a sabbatical
 

Hd-x

Senior Member
Messages
244
The only way to know is really a sabbatical
I was also considering this times ago. Perhaps it was wrong to say the mold removal didnt help anything, because my NK cells increased over the time. The thing is still I cant finally say for sure if the increased NK cell count has something to do with the mold removal, Valtrex, higher Selen/copper dosing or whatever so.
I think there is usually not still 1root cause, in most cases it seems serveral things cause or trigger CFS/ME.
 

frozenborderline

Senior Member
Messages
4,405
I was also considering this times ago. Perhaps it was wrong to say the mold removal didnt help anything, because my NK cells increased, the thing is still I cant finally say for sure if the increased NK cell count has something to do with the mold removal, Valtrex, higher Selen/copper dosing or whatever so.
I think there is usually not still 1root cause, in most cases it seems serveral things cause or trigger CFS/ME.
I’m not saying you have mold problems , can’t fiagnose someone through the internet at all. But it’s sort of like gluten issues—one has to try to stop being exposed for awhile to see if you react when reintroducing the substance. Plenty of people have found that even after a remediation their house was uninhabitable due to the mycotoxins left by the mold colonies