Nocardia and Trichosporons

Hi everybody. Been awhile since I have posted, I hope you guys are holding your own with this darn bronchiectasis. I wanted to share my lastest developements. I was recently pre-qualified for a double lung transplant, but, still too early to get listed. I have recently encountered two new hurdles and those being infected with two terrible bugs. They are Nocardia and trichosporons. Mayo went to treat the nocardia with a sulpha antibiotic (Septra) and I had a terrible allergic reaction to it. I was covered in itchy hives that looked like burne all over my body. They were so red and angry that they put off a lott of heat. I had to stop the treatment and am now awaiting further alternate treatment plans. One may be an overnight stay in the hospital to 'desensitize' me to the sulpha med. Apparently, that is the best option to get rid of nocardia. This particular bacteria is a dangerous one as it can disseminate to other parts of the body, especially the brain. So they did an MRI on my brain to make sure there were no lesions. It was negative thank God. Will know more next Monday what the next step will be concerning this matter. THEN, I got a phone call a few days ago that I also have Trichosporons in my lungs; another potentially lethal bug. It also can disseminate and go to the brain. The med they have called in is voraconizole, which costs 7k for a three month supply. I do not have secondary insurance to cover the co-pay on that, so I am seeking out foundations to help with that. That is what is going on with me. Despite all of this going on, I am happy and active every day. My best to you all!

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@windwalker Oh my, Terri what a turn of events. Both of those bugs are hard to treat – I hope they find something that will work for you. Keep us informed of how things go, please.


@windwalker , great to hear from you but not what I was hoping for you. There are so many nasties out there just waiting for us. Buy lovely to hear that you are still happy and active! I am also allergic to sulphur based drugs and get massive hot red welts all over by body so good to hear we can be desensitised to it. Hope they can fix this all ASAP.
Take care


Prayers for you as you battle these new bugs. I agonize with you.

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