I'm trying to look on the bright side here. In my heart, it feels like I've taken one step forward, and two steps back.
The forward progress was the elimination of my TEBB after the ten days of IV antibiotics. Yay!
I was TEBB-free for one cycle.
The TEBB returned the following cycle. Argh!
My first reaction was major disappointment. I'd say it was worse than how I felt when CD1 arrived. The IV was neither easy nor inexpensive. Was all of that effort, inconvenience, and money wasted? It's not like I could just have another one to make the TEBB go away again. What if this new/returned infection is now resistant to the antibiotic? And the big question in my mind...if DH had been treated simultaneously with an IV, would the TEBB have still returned?
But then I realized something. The fact that the IV eliminated the TEBB for one cycle gives us answers.
1. My TEBB is infection related. This was assumed to be the case before the IV since we exhausted the other five known causes of TEBB with other treatments; the IV simply confirmed that infection was indeed the cause.
2. My TEBB can be treated. This is good news. It took me several days to realize that this was good news because of the disappointment and sadness I was feeling, but better late than never.
When I did my cycle review at the end of the TEBB-free cycle, I received a response from Dr. K a couple days before the TEBB returned. (She said to continue with all the same meds, as expected. We were giving it three cycles post-IV before considering another surgery.) A week later, a nurse from PPVI called me unscheduled. (There had been a mix up with my local lab for my P+7 blood draw from the previous cycle, and we were trying to figure out what happened to my blood.) At the end of the call, I mentioned to her that my TEBB was back. I figured that she'd write it in my chart, and Dr. K would address it during the next cycle review.
I expected that Dr. K would say that she couldn't offer me any more treatments for TEBB and that I should look into visiting Dr. Toth in NYC for a complete diagnosis of the bug(s) involved and appropriate treatment. I know other bloggers have gone to see Dr. Toth, so I am aware of what it entails for both the wife and the husband. I have explained it to DH several times this year, knowing that Dr. K might recommend it to us at any time, so that he wouldn't be completely blindsided by the idea. There just is no way of sugar-coating the prospect of prostate injections. Or both of us spending 10 days in NYC for the treatment. (Logistically that would be very hard for him to do, but I think we could figure out a way to make it work.) At this point, DH is not open to the idea of going because of the prostate injection part.
Knowing this, I wasn't looking forward to hearing back from Dr. K. Surprisingly, she didn't wait until the next cycle review, and she didn't suggest Dr. Toth (yet). A nurse called me back the next day with the following recommendation:
-vitamin C - 1 gram twice a day on days 1-10
-bioflavonoids - 1000 mg three times a day
-B-complex - 100 mg a day
She said it's one of their TEBB protocols; the idea is to boost immune function. I had never heard of this combination being used for TEBB. I didn't ask how well this protocol worked for others or how long it takes to have an effect on the TEBB if it's going to work, so we'll see what happens. I've been taking the bioflavonoids and B-complex vitamins for a couple weeks now, and I'll start the vitamin C soon when CD1 arrives.
