The disulfiram smell certainly is horrible.
The trouble is, my sense of smell of so messed up by the Lyme and everything else right now that it is so difficult for me to tell anything really.
I'm taking doxy and rifampin with the disulfiram now as well to try and hit bartonella. Tolerating it pretty well. I know some posters here will jump on me for this, but I want to hit bartonella as it seems to be causing so many of my worst symptoms and I really want to hit the brain.
I did previously have quite dark urine just on disulfiram, but now it is turning a nice shade or orange since using rifampin.
As admirable as all of this is, please be careful. Make sure you can get your kidney and liver functions tested on a reasonably regular basis. It's so unjust that this is the way it is but you've got to be careful. I dunno what's worse, being this sick or having to take powerful pharmaceuticals, with little knowledge on how they work - with the possiblity that they won't even eradicate the illness.
It's entirely possible waste products will come out in urine as well. I'm not too knowledgeable on it but it makes sense.>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
The way I see it I don't have a choice really.
I can let the NHS do absolutely nothing as they have done throughout and literally die, or I can treat this myself based on what I've learnt here and elsewhere and stand some kind of chance of getting better. I just have to experiment with different medications, target different infections and see how I react. Everything I'm doing is based on the experience of others and what they take etc.
Three weeks of disulfiram has given some relief of symptoms already. Not sure which infections it has hit exactly, but I'm quite convinced I have Bartonella, so I'm having a go at adding some Bartonella meds and seeing what that does to my symptoms. Going to do a big old liver detox next week as well. After that, which will be a month of disulfiram, I'm going to stop all meds for a week or so and just see what my baseline symptoms are like before I decide what to do next.
I will get my doctor to do some routine bloods at some point in the near future, but as you know, I will have to explain why. Oh, the joy of this. I'm not letting the NHS anywhere near me in terms of treatment. If I have to I will find somewhere who can do the bloods privately. Can't afford it, but again, I don't have a choice.
I've got my own little pharmacy going here now. I have disulfiram, rifampin, doxy, bactrim, dapsone, methylene blue and lots of weird and wonderful supplements for detoxing and biofilms etc. I am going to try and avoid the dapsone and bactrim if I can help it, but they're there for use somewhere down the line if I need them... or if I am brave enough.