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.
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.