I did get the GI Effects stool test done (in December 2022, well after I’d already been ill), which showed no presence of parasites. Any reason to think a stool test like this wouldn’t detect the parasites?
How do you know your infection from years ago was viral?
My symptoms during the acute infection were a sore throat, fever, large quantities of mucus and clogged nose (requiring constantly blowing my nose), and a cough (both dry and wet cough; mostly in the evenings). It felt like a cold or flu, just stronger and longer lasting (10 days for most symptoms to clear, then 5 more days after that until I felt basically normal, and then a few weeks later weird stuff started happening to me like extreme sensitivity to caffeine, and it has just kept going on for 5 years now).
GI tract pathogen
I do know I have SIBO and gut dysbiosis (from breath/stool test), but the usual treatments for these seem to have made me worse off, so my current guess is that it’s not the root problem.
Seems like 5-10% false negative for when they already know exactly what you have? And a 30% number is randomly quoted online… I guess it totally depends on what someone has, how much they poop, etc
Yeah i would bet 40% on a worm (ie 67% of my 60% on GI pathogen)
weird stuff started happening to me like extreme sensitivity to caffeine
Only explanation for this (and the salt sensitivity etc) IMO is a hole/thinning in gut lining. Which is moderately likely (30%?) with nonworm gut pathogen but very likely (75%?) with a worm.
Thank you, this is good to know. I reached out to one of my doctors to see what they think of this idea. My own feeling is that 40% on a worm is too high. My eosinophils count is normal (and I know sometimes that can be normal even with a parasite), the viral illness seems like a sufficient explanation of kick-starting my chronic symptoms, I tested negative on the stool test, and I already know I have gut problems (and those gut problems seem to be explained by SIBO/leaky gut). Basically, everything I see seems to be explained well by stuff that I already know is going on, and I don’t see any clear evidence of parasites. I would still put maybe 3% on it though.
My current distribution of root cause now looks something like: 35% on autoimmune/pre-autoimmune (e.g. Sjogren’s syndrome), 25% on MCAS, 10% on dysautonomia/POTS, 5% on latent virus/viral reactivation, 5% on SIBO/impaired MMC, 3% on some kind of parasite, 17% other causes.
Only explanation for this (and the salt sensitivity etc) IMO is a hole/thinning in gut lining.
Why not dysautonomia? I am newly sensitive to a lot of things, including heat, light, and sound that don’t directly involve the gut.
I did get the GI Effects stool test done (in December 2022, well after I’d already been ill), which showed no presence of parasites. Any reason to think a stool test like this wouldn’t detect the parasites?
My symptoms during the acute infection were a sore throat, fever, large quantities of mucus and clogged nose (requiring constantly blowing my nose), and a cough (both dry and wet cough; mostly in the evenings). It felt like a cold or flu, just stronger and longer lasting (10 days for most symptoms to clear, then 5 more days after that until I felt basically normal, and then a few weeks later weird stuff started happening to me like extreme sensitivity to caffeine, and it has just kept going on for 5 years now).
I do know I have SIBO and gut dysbiosis (from breath/stool test), but the usual treatments for these seem to have made me worse off, so my current guess is that it’s not the root problem.
False negative rate is high apparently.
Seems like 5-10% false negative for when they already know exactly what you have? And a 30% number is randomly quoted online… I guess it totally depends on what someone has, how much they poop, etc
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC266208/?page=2
Some reports of people just taking dewormers despite negative tests and having good results. Example:
https://old.reddit.com/r/SIBO/comments/euuvqw/psa_your_sibo_could_be_parasites_even_if_you/
Idk how broad-spectrum/effective dewormers typically are. Apparently this one killed a bunch of random stuff but some species can come back after:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7983463/
Yeah i would bet 40% on a worm (ie 67% of my 60% on GI pathogen)
Only explanation for this (and the salt sensitivity etc) IMO is a hole/thinning in gut lining. Which is moderately likely (30%?) with nonworm gut pathogen but very likely (75%?) with a worm.
Thank you, this is good to know. I reached out to one of my doctors to see what they think of this idea. My own feeling is that 40% on a worm is too high. My eosinophils count is normal (and I know sometimes that can be normal even with a parasite), the viral illness seems like a sufficient explanation of kick-starting my chronic symptoms, I tested negative on the stool test, and I already know I have gut problems (and those gut problems seem to be explained by SIBO/leaky gut). Basically, everything I see seems to be explained well by stuff that I already know is going on, and I don’t see any clear evidence of parasites. I would still put maybe 3% on it though.
My current distribution of root cause now looks something like: 35% on autoimmune/pre-autoimmune (e.g. Sjogren’s syndrome), 25% on MCAS, 10% on dysautonomia/POTS, 5% on latent virus/viral reactivation, 5% on SIBO/impaired MMC, 3% on some kind of parasite, 17% other causes.
Why not dysautonomia? I am newly sensitive to a lot of things, including heat, light, and sound that don’t directly involve the gut.
Oh that’s a lot of evidence against a worm probably. I am out of ideas. Good luck. I hope you can figure it out