running wild said...
I'm not much help for you, but your comment about gut issues pushing things really rings true. It never fails when I feel worse (dizziness, fatigue, near constipation, emotions), my stomach feels worse at the same time. Have had bloating, to some degree, for years. When I feel better, the bloating is not as bad, nor the stomach upset.
In reading through was sorry to see about the SIBO. And maybe I missed something mentioned about this, but with repeated viruses, is there a chance autoimmune type component jumped in?
hi RW
as i understand it all humans have some degree of auto-immunity - its not really a binary condition. that is to say that everyone has some antibodies to many of their own tissues at some level. at least that's my understanding of the science.
and as Lyme patients with lots of extra immune disturbance and general inflammation - we often have higher levels of auto-antibodies across the board - ie further along the spectrum of autoimmune activity against our own tissues - and at some level this starts to manifest in more obvious symptoms.
where exactly we draw a line and say thats frank auto-immune disease with a name is largely a human artifice driven by whatever limited diagnostic technology we have and whatever conventions have developed over the decades.
in that way i am sure i have some level of auto-immunity - and at a raised level compared to normal - as indicated by things like high ANA titres - something that many if not most chronic lyme and bart patients will have. also some dsDNA antibodies and some others at measurable levels
how much of my symptoms picture is being driven by this is anyone's guess
like you my gut symptoms have always been linked to my overall symptoms - and anything i can do to help my gut cope tends to help my overall symptoms - in this way a keto diet was about
the biggest thing i have been able to find that helps my overall health. but its not a cure - I think of it more like something that takes an unnecessary load off the system and allows it to focus more of its energy on doing what its supposed to.
it was the same - but even more so for my ex-fiance - who's life was taken over by gut symptoms after we became ill - and who got her life back within months of changing to a keto diet. i think Bartonella is perhaps the most likely culprit for driving these gut and immune dysregulation effects - as there are papers in the literature describing a linked colitis and auto-immune liver / gall bladder disease - as well as the numerous patient stories with bart and MCAS, auto-immune neuropathies, wild and varied psychological effects - which likely have an auto-immune component to them - eg like PANDAS
i wish i knew what exact treatments would calm this down - the auto-immune colitis / liver thing responded well to 4 weeks of oral vancomycin ( an antibiotic that largely stays in the gut) - but it would be nice to find something more natural and supportive that might help the body heal itself. i have tried many things but not found much that helps in an obvious way. but
open to suggestions
perhaps quercetin is worth another shot as a mast cell stabiliser