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I have mold illness symptoms but test negative for mold...

Messages
4
I started getting sick 8 years ago. At that time we got married, had fist kid, moved into new house and got a new used car. My symptoms were fatigue and sinus pressure. My wife never really got sick. I got a sleep study and it was negative. A few years later I developed a slight dizziness, fatigue from certain foods, chemical sensitivities, joint pain and enlarged prostate.

I had nasal surgery in 2020 and 2021 for swollen sinus cavities but the inflammation keeps returning. Had an allergy test by immunologist and it was all negative. Got another sleep study and it was negative. Got lots of lab work and all normal, the only thing consistently out of range is high bilirubin. Normal testosterone, vitamin D, B12, autoimmune, lyme and thyroid. Brain MRI they said looked good.

I took a Great Plain and Real Time labs mycotox test and they were both negative. ERMI test I did came in at 4 which is pretty low. Professional mold inspector found some small areas of mold but nothing major. Mold in one supply duct, shower caulking and a little water damage from over flow washer about 3 years ago. They did several air samples and were very low. I did some gravity plate sampling and hey were negative.

My 8 year old has some nasal inflammation and fatigue. 5 year old son has nasal inflammation, mood issues and lack of appetite. I have mood issues too but I think it's from the fatigue and sinus swelling. I feel like if the mold in the house was an issue then I would test positive or the house testing would be positive.

Just got a new HVAC system a few months ago. I have a dehumidifier in each bathroom set at 45%. The old HVAC didn't control humidity as good and would get about 60% in spring and fall.

I'm still working but want to quit so bad. Feels like my whole head is inflamed. I have fatigue, sinus swelling, brain fog. Lesser symptoms: joint pain, headaches once a week, chemical sensitivities, irritability, eyes water when wearing mask, ear stuffiness, voice changes, bad breath and enlarged prostate. I have a history of anxiety, GERD 2006, Barretts 2021, headaches, TMJD, bruxism and rosacea.
 
Messages
4
I feel like I make others sick too. Like I make people yawn. I guess because of how tired I look or because of the voice changes. My eyes water at work when I have to wear a mask and my symptoms seem to transfer to the people I talk to. It's not my job because it is a clean room and thousands of people work here. Plus the fatigue started 8 years ago and have had 3 different jobs in that time frame.

Different diets seem to have no effect. I do notice reflux from rice and fatigue from dairy. PSA or whatever its called prostate urine test came out fine. Nasal swab from ENT was fine. So it's like their is no infections but just something causing swelling. The sinuses mostly but also prostate.

Maybe it is MARCoNS? My wife just has weight gain since having 3 kids and high TSH but not hypothyroid yet. We also have 2 Austin air purifiers. I've tried different HVAC filters, UV lights, etc and nothing seems to help.

I've tried different sinus rinses, red LED sinus therapy, probiotic sinus rinses, probiotics, SSRIs, CPAP and nothing seems to help.
 

hapl808

Senior Member
Messages
2,216
I think this is the challenge of 'mold' stuff. There seems to be something to it, but not sure that mold tests or Shoemaker or any of that stuff actually works. I saw a mold doctor who was sure that my MARCoNS test would be positive (it wasn't), I took CSM for a couple weeks (no real change until I had a bad reaction one day), and so forth. My feeling is that CIRS is a correct identification of an underlying problem but a faulty explanation of the etiology.

In short, no idea. I didn't try CPAP but definitely considered that. Have you tried wearing a P100 level mask for a bit and seeing how much it helps your symptoms?
 

frozenborderline

Senior Member
Messages
4,405
I started getting sick 8 years ago. At that time we got married, had fist kid, moved into new house and got a new used car. My symptoms were fatigue and sinus pressure. My wife never really got sick. I got a sleep study and it was negative. A few years later I developed a slight dizziness, fatigue from certain foods, chemical sensitivities, joint pain and enlarged prostate.

I had nasal surgery in 2020 and 2021 for swollen sinus cavities but the inflammation keeps returning. Had an allergy test by immunologist and it was all negative. Got another sleep study and it was negative. Got lots of lab work and all normal, the only thing consistently out of range is high bilirubin. Normal testosterone, vitamin D, B12, autoimmune, lyme and thyroid. Brain MRI they said looked good.

I took a Great Plain and Real Time labs mycotox test and they were both negative. ERMI test I did came in at 4 which is pretty low. Professional mold inspector found some small areas of mold but nothing major. Mold in one supply duct, shower caulking and a little water damage from over flow washer about 3 years ago. They did several air samples and were very low. I did some gravity plate sampling and hey were negative.

My 8 year old has some nasal inflammation and fatigue. 5 year old son has nasal inflammation, mood issues and lack of appetite. I have mood issues too but I think it's from the fatigue and sinus swelling. I feel like if the mold in the house was an issue then I would test positive or the house testing would be positive.

Just got a new HVAC system a few months ago. I have a dehumidifier in each bathroom set at 45%. The old HVAC didn't control humidity as good and would get about 60% in spring and fall.

I'm still working but want to quit so bad. Feels like my whole head is inflamed. I have fatigue, sinus swelling, brain fog. Lesser symptoms: joint pain, headaches once a week, chemical sensitivities, irritability, eyes water when wearing mask, ear stuffiness, voice changes, bad breath and enlarged prostate. I have a history of anxiety, GERD 2006, Barretts 2021, headaches, TMJD, bruxism and rosacea.
Hey I am too tired to repost all of my info on mold but I highly recommend checking the podcast I did on it out. I also recommend the website paradigmchange.me, Erik Johnsons work, lisa petrisons mold avoiders Facebook groups, the beginners guide to mold avoidance. I have a podcast that covers both Lyme and mold here
 

frozenborderline

Senior Member
Messages
4,405
Tests are mwaningless. Current tests are. I covered the other kind of testing. Sabbaticals, in this podcast: Like I said I'm not just trying to promote my podcast. Others have covered the same info. Lisa petrisons website paradigmchange.me is good, Julie rehmeyers book "through the shadowlands" is good.

The podcast episode I did where we cover the lake Tahoe outbreaks the most , "origin story part III", is also good for this info.
 
Messages
31
if you were diagnosed with no mold + you had your house checked and it was also negative, probably you dont have any problems with molds,
tbh mate i think you fixate on the mold issue, while there are many more explanations of your problems, big % of pwME have sinus issues for years and it has no relation to mold, just me/cfs(whatever the core problem is), you could grab a virus around time of moving + getting new home, having first baby is a great stressor (poor sleep also i guess ;) ) you should check the hips roadmap https://mecfsroadmap.altervista.org/ and extend your diagnostic

still if you want to free your mind from molds, just rent a house for 3 month and check if that's something that change your baseline
 

frozenborderline

Senior Member
Messages
4,405
if you were diagnosed with no mold + you had your house checked and it was also negative, probably you dont have any problems with molds,
tbh mate i think you fixate on the mold issue, while there are many more explanations of your problems, big % of pwME have sinus issues for years and it has no relation to mold, just me/cfs(whatever the core problem is), you could grab a virus around time of moving + getting new home, having first baby is a great stressor (poor sleep also i guess ;) ) you should check the hips roadmap https://mecfsroadmap.altervista.org/ and extend your diagnostic

still if you want to free your mind from molds, just rent a house for 3 month and check if that's something that change your baseline
I don't know which person you're responding to but there are no valid tests for mold, there are no tests considered standardized by the cdc or fda for mold illness

There are many debates and problems with existing tests. This is why people say a good test is your symptoms.

Many of the original patients in the lake Tahoe outbreak reported sick building syndrome but also *outdoor* toxins. Outdoor biotoxins are what's ignored by the idea to just try a rental. Often you can do that and not benefit but if you change regions benefit a lot. I went from bedbound to walking and reading and talking a lot by going to pristine outdoor air
 
Messages
31
I don't know which person you're responding to
did you read posts in this topic?

but there are no valid tests for mold, there are no tests considered standardized by the cdc or fda for mold illness
There are many debates and problems with existing tests. This is why people say a good test is your symptoms.
symptoms from 'mold illness' are so non-specific, that you can easily match them with dozens of other diseases and since author said himself, that there is nothing that would link him with molds rather then symptoms (fatigue, sinusitis, sensitivity- seems a bit 'general' doesen't it?) it's probably not molds but something else

Many of the original patients in the lake Tahoe outbreak reported sick building syndrome but also *outdoor* toxins. Outdoor biotoxins are what's ignored by the idea to just try a rental. Often you can do that and not benefit but if you change regions benefit a lot. I went from bedbound to walking and reading and talking a lot by going to pristine outdoor air
i'm not denying that but just taking into account probability @weiss27md just should look into other roots of his problems rather then sticking to mold exposure which is least probable
 

frozenborderline

Senior Member
Messages
4,405
did you read posts in this topic?
Yes. But But still i don't know who you were responding to
symptoms from 'mold illness' are so non-specific, that you can easily match them with dozens of other diseases and since author said himself, that there is nothing that would link him with molds rather then symptoms (fatigue, sinusitis, sensitivity- seems a bit 'general' doesen't it?) it's probably not molds but something else
People say this about me/cfs, about mcas, about many syndromes which are not yet diseases with a single biomarker and irrefutable proof.
Personally I think me/cfs is well defined, and I think it makes sense that things like mcas would present somewhat heterogeneously since innate immune cells like mast cells do a lot in sifferent parts of the body and are part of a less targeted and more messy immune response than the more advanced adaptive immune system. I think mold illness involves inflammatory cascades of the innate immune system. It involves neuroinflammation, connective tissue damage, brain fog, allergy like symptoms, gut issues, and even anxiety. That may seem too non specific but if one thinks of how a disease like hereditary alpha tryptasemia works, it clear that there are medically validated illnesses with a varied presentation that involve three or more bodily systems. While mold illness is probably not solely due to hereditary alpha tryptasemia, it makes sense that it's etiology could be analogous if not homologous, and involve multiple body systems and innate immune inflammation.
 

frozenborderline

Senior Member
Messages
4,405
not denying that but just taking into account probability @weiss27md just should look into other roots of his problems rather then sticking to mold exposure which is least probable
If he rules out mold just by going to good air for a week and then coming back... I would tend to agree.
 

GreenMachineX

Senior Member
Messages
362
I started getting sick 8 years ago. At that time we got married, had fist kid, moved into new house and got a new used car. My symptoms were fatigue and sinus pressure. My wife never really got sick. I got a sleep study and it was negative. A few years later I developed a slight dizziness, fatigue from certain foods, chemical sensitivities, joint pain and enlarged prostate.

I had nasal surgery in 2020 and 2021 for swollen sinus cavities but the inflammation keeps returning. Had an allergy test by immunologist and it was all negative. Got another sleep study and it was negative. Got lots of lab work and all normal, the only thing consistently out of range is high bilirubin. Normal testosterone, vitamin D, B12, autoimmune, lyme and thyroid. Brain MRI they said looked good.

I took a Great Plain and Real Time labs mycotox test and they were both negative. ERMI test I did came in at 4 which is pretty low. Professional mold inspector found some small areas of mold but nothing major. Mold in one supply duct, shower caulking and a little water damage from over flow washer about 3 years ago. They did several air samples and were very low. I did some gravity plate sampling and hey were negative.

My 8 year old has some nasal inflammation and fatigue. 5 year old son has nasal inflammation, mood issues and lack of appetite. I have mood issues too but I think it's from the fatigue and sinus swelling. I feel like if the mold in the house was an issue then I would test positive or the house testing would be positive.

Just got a new HVAC system a few months ago. I have a dehumidifier in each bathroom set at 45%. The old HVAC didn't control humidity as good and would get about 60% in spring and fall.

I'm still working but want to quit so bad. Feels like my whole head is inflamed. I have fatigue, sinus swelling, brain fog. Lesser symptoms: joint pain, headaches once a week, chemical sensitivities, irritability, eyes water when wearing mask, ear stuffiness, voice changes, bad breath and enlarged prostate. I have a history of anxiety, GERD 2006, Barretts 2021, headaches, TMJD, bruxism and rosacea.
How are you doing now? I've recently developed gerd, bruxism and some other things are getting worse. About to go down the mold rabbithole...
 

hapl808

Senior Member
Messages
2,216
I've also wondered about a UV light on the coils for an HVAC system. No idea if that might help, but I've always wondered that some medical offices seem to have 'better' air and some don't. I tend to be pretty sensitive.
 
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