Greetings from Alaska...

[mishb]

Hi Tom and welcome to you from me in Australia.

You sure have to love those antibiotics that don't work

[annekat]

Hi Tom and welcome to you from me in Australia.

You sure have to love those antibiotics that don't work

Yeah, I don't get that.... with the big fat ear infection I had at the beginning of Wegs (though I didn't know it at the time), the first two that they tried didn't work at all! Not in the least. So did that mean it wasn't really an infection, but Wegs disguising itself as one? Then the doc pulled out the big gun, Levaquin, and the infection subsided. At that point, he took a sample for culture to see what this "really weird bug" was that I had, but somehow, it wouldn't grow in the culture dish to anyone's satisfaction. Weird bug, indeed.

After that, I had a never-ending series of sinus infections. The antibiotics, usually along with prednisone, did seem to work to some extent, but the infections would just come back within a month or two. A common story, I imagine. So I'm concluding that there really was some bacteria in there along with the Wegs crap, but Wegs does have the ability to mimic infections, including the greenish mucus and all.

[Alias]

My experience was very similar. I had been on at least two oral antibiotics, maybe three, plus topical antibiotics in the ear, before the Levaquin. The myringotomy released a lot of apparently infected fluid, so there was evidently an infection. But, nobody thought to do a culture until I was already on the Levaquin. At that point, it's no surprise that a culture would not produce anything, I think. I also seemed to have some improvement, but not much, with the Levaquin. Next step was the much more invasive mastoidectomy, which the surgeon says also showed gross evidence of infection, but nothing on culture. I suspect that had I been diagnosed, the mastoidectomy would never have happened; they would have started aggressive treatment of the underlying problem instead. I think there's no point in "going there" with the surgeon, as I'm not having active follow up with her and it's water under the bridge at this point.

[annekat]

I think that in my case the culture was also done too late, while I was already on Levaquin. After my ears had cleared up, the ENT had me go in for daily IV's of Rocephin, another strong antibiotic, for 5 days, to prevent or guard against mastoiditis. I guess that was a good idea, although an expensive one. During this whole time and for weeks afterwards, there was nasal discharge, I was coughing a lot, I wasn't hearing well, and I had little energy. Things did improve a bit before the series of recurrent infections, occasional bouts with joint pain, and eventually my lung involvement which I thought was pneumonia but turned out to be Wegs/GPA. I got the hearing aids sometime after my diagnosis.

[Carmen11]

Hi , Welcome to the forum ..your story is a roller-coaster ride ! I can totally relate , I'm new on here by 2 days but it's now been over a year since my diagnosis , but just in these few days I am sooo thankful to have found this sight. It's incredibly reassuring to get to speak with others with similar stories and know you are NOT alone ! Keep fighting !!!!!