Should I test/treat for mold, when exposure was decade+ ago?

[Elizhol]

I'm pretty sure that mold was the origin story of my ME/CFS although I've only realised it in the last year! My question is if I should still be looking to test / treat this, even though it was so long ago?

I lived in a London basement flat 2009 - 2011. We had a damp storage cupboard under the external stairs that we put shoes, suitcases etc in and then discovered they were all covered in dusty green/white mold, which I then foolishly cleared out, having no idea how dangerous that was. Some point after, mid 2010, I got increasingly breathless / wheezy and was eventually (end of 2010) diagnosed with suspected pneumonia which I never really got better from. Lingering symptoms at that point were fatigue, breathlessness, sinus pressure / pain, exercise intolerance. I was doing some personal training and a strict low carb diet in Spring 2011 when things continued to deteriorate so put it down to that.

I moved out of the basement flat in August 2011, to a second floor flat (v old building though), still in London but leafy bit, lots of ventilation etc. Left there in 2020 and now live in a (also old) house in the (UK) countryside, no obvious signs of mold in either of these. Have spent 6 weeks abroad (Australia, Asia, Thailand) three times over the decade and no obvious relief in symptoms.

I was off work from 2011 to 2012, got a bit better 2013 - 2015, end of 2015 i got flu of sorts and it knocked me right back again and never really got better again. Work had been crazy that year but I thought i was taking relatively ok care of myself. Did some therapy and they didn't think stress or depression or anything were a factor. Off work completely end 2016 until present, with a bit of part time freelance work in the last couple of years.

I'm mid mild at best times to bottom / mid moderate at worst. Feels like an ongoing decline over the last year or so (i.e. i still do things but less tolerance so longer recovery, need more total rest days, brain capability shorter),

Main symptoms now are fatigue, brain fog, muscle aches, unrefreshing sleep / occasional insomnia, exercise intolerance, weight gain. Still a bit wheezy I think and think I have quite a high respiration rate (according to Whoop). Excessive thirst as well (but get regular diabetes etc tested via NHS GP and no concerns there)

Given I had that interim recovery of sorts 2013 - 2015 before a further relapse without any further exposure to mold, is mold still likely to be an issue?

Obviously with having been off proper work for so long I have fairly limited financial resources so am wary of the extensive cost of full Shoemaker practitioner support and / or both types of mycotoxin testing, etc, but if its likely to be the key to things then I am of course very much happy to invest in the future extra capability it will give me!

Any views as to whether it would be worth exploring and the most cost effective way of proceeding? Is it cheaper / worth just to start treatment with binders and not bother with tests? Or likely enough to be the underlying issue that its worth doing it properly?

Oh i did one of the free VCS contrast tests and i could see everything correctly except the top 3 on each (so I think it was 70% positive?). Haven't yet paid for one to get the full interpretation.


Thank you in advance for any help / advice / pointers. I've not posted on here before but have been using these forums for research and information for many many years and am constantly wow-ed by your knowledge and perseverance.

 

[jason30]

It's not the mold that give you issues, it's their toxins. Unfortunately toxins stick to different materials and clothes. This is the main reason why moldies leave their stuff when they move out of a moldy home.

The cheapest solution is indeed taking binders. But, be aware that being in mold and get exposed to toxins for a while is a huge demand on your system, and uses a lot of vitamins and minerals and electrolytes, and also a huge demon on methylation. So it could also be a recovery on those things.

If you still wear clothes or shoes from the London basement flat 2009, then you are definitely still being exposed to toxins.

Hope this helps, all the best.

 

[hapl808]

I think the problem is the mold stuff is all very confusing and the science is far from robust. The tests don't seem very reliable or diagnostic. I moved out of my place for a couple years and brought nothing - bought new clothes, etc. Didn't improve at all. Moved back (where at least it was more restful) and slowly started to improve for six months, then stopped improving. Related to mold? Maybe, but maybe not. My vague guess from reading all that stuff, seeing a Shoemaker protege, etc - is that our mold sensitivity is similar to our various MCAS, food intolerances, etc. In other words, it's a downstream issue from whatever is causing ME/CFS type symptoms, rather than being the main cause.

(I was particularly unimpressed with the Shoemaker protege I saw - who diagnosed me mostly based on VCS, started me on fish oil and CSM where I had no reaction for weeks (no improvement, no worsening), then had a bad reaction and he basically told me to consult my GP about the bad reaction, even though he was the one who rx'ed it.)

 

[jason30]

I think the problem is the mold stuff is all very confusing and the science is far from robust. The tests don't seem very reliable or diagnostic. I moved out of my place for a couple years and brought nothing - bought new clothes, etc. Didn't improve at all. Moved back (where at least it was more restful) and slowly started to improve for six months, then stopped improving. Related to mold? Maybe, but maybe not. My vague guess from reading all that stuff, seeing a Shoemaker protege, etc - is that our mold sensitivity is similar to our various MCAS, food intolerances, etc. In other words, it's a downstream issue from whatever is causing ME/CFS type symptoms, rather than being the main cause.

(I was particularly unimpressed with the Shoemaker protege I saw - who diagnosed me mostly based on VCS, started me on fish oil and CSM where I had no reaction for weeks (no improvement, no worsening), then had a bad reaction and he basically told me to consult my GP about the bad reaction, even though he was the one who rx'ed it.)

It's all about detoxify the load of toxins. When you are out of mold then this doesn't solve your methylation / liver / detox issues. It can take months before you body is be ablo to detox the toxins. Also, mold toxins and lyme toxins goes hand in hand. Same for MCAS, food intolerances etc, it's all part of our journey!

 

[JasonPerth]

Did you do the CIRS protocol and have you improved at all?
The problem i have with the VCS test is that literally all the MECFS systemic symptoms are the same. So if you have MECFS unrelated to mold, you will more likely be positive then not . Even you have a higher chance of having the Mold/CFS HLA gene too.

I have all the genes and VCS test and a high MMP9 whatever that is, the naturopath then told me there was a 95% chance i had Cirs. WARNING WARNING WARNING….. “95% chance”

Ive heard that % before. Its bs and not good enough for a $5000-$10000 protocol, for some its more if you keep going and going and hoping for provements.

The issue I personally had is that i got sick with a random horrible coughing virus in july 2016, and recall mold being in my dads room in the house in December 2016 (who knows how long it was there for before it was noticed)

I was mild until last year after another virus knocked me down to severe and then got desperate for help and came across a naturopath because I stupidly searched for “CFS” help/treatment in Perth

This naturopath did this whole “cfs is CIRS and its all the same” thing.

When i ask those in the CIRS community, they dont answer that question so that was another red flag. The issue i have is that CIRS is indeed real and i know people who have recovered from it. Most people know 100% that it was mold that made them sick.

Personally i think mine was just standard post viral mecfs from some horrible Positive rna virus that knocked me and my lungs out and the mold in the nearby room was coincidental

 

[jason30]

Did you do the CIRS protocol and have you improved at all?
The problem i have with the VCS test is that literally all the MECFS systemic symptoms are the same. So if you have MECFS unrelated to mold, you will more likely be positive then not . Even you have a higher chance of having the Mold/CFS HLA gene too.

I have all the genes and VCS test and a high MMP9 whatever that is, the naturopath then told me there was a 95% chance i had Cirs. WARNING WARNING WARNING….. “95% chance”

Ive heard that % before. Its bs and not good enough for a $5000-$10000 protocol, for some its more if you keep going and going and hoping for provements.

The issue I personally had is that i got sick with a random horrible coughing virus in july 2016, and recall mold being in my dads room in the house in December 2016 (who knows how long it was there for before it was noticed)

I was mild until last year after another virus knocked me down to severe and then got desperate for help and came across a naturopath because I stupidly searched for “CFS” help/treatment in Perth

This naturopath did this whole “cfs is CIRS and its all the same” thing.

When i ask those in the CIRS community, they dont answer that question so that was another red flag. The issue i have is that CIRS is indeed real and i know people who have recovered from it. Most people know 100% that it was mold that made them sick.

Personally i think mine was just standard post viral mecfs from some horrible Positive rna virus that knocked me and my lungs out and the mold in the nearby room was coincidental

I didn't do the CIRS protocol because I was busy with running away from it. Moved several times last year, I feel so good when I am in a home without mold/toxins and not near pesticides. I am recovered and have no fatigue etc. But as soon as I get exposed to toxins/pesticides there is huge inflammation going on. I am now in a house with toxins and all the symptoms are back. But, instead of moving (flight mode) I am now busy with retraining my nervous system, because it's the nervous system that decides to go to the fight/flight program, not the toxin!

 

[JasonPerth]

I didn't do the CIRS protocol because I was busy with running away from it. Moved several times last year, I feel so good when I am in a home without mold/toxins and not near pesticides. I am recovered and have no fatigue etc. But as soon as I get exposed to toxins/pesticides there is huge inflammation going on. I am now in a house with toxins and all the symptoms are back. But, instead of moving (flight mode) I am now busy with retraining my nervous system, because it's the nervous system that decides to go to the fight/flight program, not the toxin!

Sounds like CIRS, i dont think brain retraining will assist in CIRS mold toxins. It doesnt assit with ME patients and only people with burnout/FND issues.

 

[ruben]

I'm pretty sure that mold was the origin story of my ME/CFS although I've only realised it in the last year! My question is if I should still be looking to test / treat this, even though it was so long ago?

I lived in a London basement flat 2009 - 2011. We had a damp storage cupboard under the external stairs that we put shoes, suitcases etc in and then discovered they were all covered in dusty green/white mold, which I then foolishly cleared out, having no idea how dangerous that was. Some point after, mid 2010, I got increasingly breathless / wheezy and was eventually (end of 2010) diagnosed with suspected pneumonia which I never really got better from. Lingering symptoms at that point were fatigue, breathlessness, sinus pressure / pain, exercise intolerance. I was doing some personal training and a strict low carb diet in Spring 2011 when things continued to deteriorate so put it down to that.

I moved out of the basement flat in August 2011, to a second floor flat (v old building though), still in London but leafy bit, lots of ventilation etc. Left there in 2020 and now live in a (also old) house in the (UK) countryside, no obvious signs of mold in either of these. Have spent 6 weeks abroad (Australia, Asia, Thailand) three times over the decade and no obvious relief in symptoms.

I was off work from 2011 to 2012, got a bit better 2013 - 2015, end of 2015 i got flu of sorts and it knocked me right back again and never really got better again. Work had been crazy that year but I thought i was taking relatively ok care of myself. Did some therapy and they didn't think stress or depression or anything were a factor. Off work completely end 2016 until present, with a bit of part time freelance work in the last couple of years.

I'm mid mild at best times to bottom / mid moderate at worst. Feels like an ongoing decline over the last year or so (i.e. i still do things but less tolerance so longer recovery, need more total rest days, brain capability shorter),

Main symptoms now are fatigue, brain fog, muscle aches, unrefreshing sleep / occasional insomnia, exercise intolerance, weight gain. Still a bit wheezy I think and think I have quite a high respiration rate (according to Whoop). Excessive thirst as well (but get regular diabetes etc tested via NHS GP and no concerns there)

Given I had that interim recovery of sorts 2013 - 2015 before a further relapse without any further exposure to mold, is mold still likely to be an issue?

Obviously with having been off proper work for so long I have fairly limited financial resources so am wary of the extensive cost of full Shoemaker practitioner support and / or both types of mycotoxin testing, etc, but if its likely to be the key to things then I am of course very much happy to invest in the future extra capability it will give me!

Any views as to whether it would be worth exploring and the most cost effective way of proceeding? Is it cheaper / worth just to start treatment with binders and not bother with tests? Or likely enough to be the underlying issue that its worth doing it properly?

Oh i did one of the free VCS contrast tests and i could see everything correctly except the top 3 on each (so I think it was 70% positive?). Haven't yet paid for one to get the full interpretation.


Thank you in advance for any help / advice / pointers. I've not posted on here before but have been using these forums for research and information for many many years and am constantly wow-ed by your knowledge and perseverance.

Sorry to be lazy but can't read all this just now. I'm in UK. Please how, where do you test for mold?

 

[Artemisia]

alternative perspective - these ppl say not to test but to do a mold avoidance sabbatical in clearer air, camping or hotel, need not be in a desert

https://lymebook.podbean.com/e/sabbatical/