Have you made any further progress?
Hi Eddie,
Yes so the doctor ended up putting me on a short course of Prednisolone, which I'm just coming to the end of now.
The results have been... OK.
I've not reacted badly to it, like I was doing with all the other MCAS stabilisers, and I'd say on balance it seems to have improved my condition a bit, but not by much. All the main stuff is still just as bad though (the fatigue, achiness, cognitive stuff, reacting to food, etc), although I'd say the reacting to food has improved slightly. Say I was at 25% health before, I'm maybe at 30% now.
Which is obviously something to be grateful for - I'd rather respond well than badly to anything. But the way he'd painted it made it seem like it would completely turn off the Mast Cells for a while and I'd probably feel quite considerably better, but that it would be short lived and only a temporary fix. Well that clearly hasn't happened, and it's making me think I need to go back to the drawing board. I know I have MCAS, but maybe my main symptoms aren't something that can be quelled with MCAS stabilisers alone.
In the meantime I've been doing some more reading about mould toxins and their effect on the body. They are common in patients with MCAS and I tested positive for high mycotoxin levels in my urine earlier this year, so I think it's highly likely the mould is at least contributing to the MCAS. What I'm thinking now though is the Mast Cell reactions might only be one facet of it, and my symptoms are more widely attributable to the mould or other issues than the Mast Cells alone.
In light of that I've been reading Dr Neil Nathan's book on mould and toxicity (
have written about it here), and I think I'm maybe going to try and go down a different route other than focus solely on MCAS, as that clearly doesn't seem to be working. So my next steps are to try some of Dr Nathan's recommendations (starting with binders to help the body detox better, followed by some antifungal sprays once my body can tolerate it) in the hope I can maybe quell my symptoms by addressing the root cause rather than going after the symptoms. Maybe I'll also start looking for a mould specific doctor.
My reluctance to go down this path initially was the thought that I wouldn't be able to get anywhere without first quelling the reactions, which in my mind meant MCAS. I've tried to take antifungals or antibiotics (or even probiotics) in the past and after a few days they all seem to start triggering big Herx reactions, suggesting my body can barely handle any extra toxins from killing microbes. My understanding now though, is that this is not the ideal method to start with, and that first you really need to help the body detox these toxins on their own, and without the use of antifungals etc. And I know I can tolerate some of these binders OK, so I'm hopeful I might be able to make some ground here.
I'm also tentatively exploring the idea of maybe doing some "brain retraining" type stuff to see if I can quell any of my reacting symptoms that way. I'm very skeptical about this sort of stuff and my instinct is that it wouldn't do anything. But I also don't have much to lose from it, and Dr Nathan advocates its use in his book, saying DNRS had helped the vast majority of his most sensitive patients.
Anyway yeh, that's where I'm at. Thanks for asking.
