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Tuesday, September 4, 2012

Two steps forward, one step back

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.

9 comments:

  1. Oh Polkadot, I am sorry to hear the TEBB is back, yuck! I had lunch recently with Rebecca and E from God's Plan is my Joy...I'm pretty sure E saw the same Dr. in NY that you mentioned and had success with conceiving her daughter. I hope the new protocol works for you though and that you won't need the NY trip.

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  2. For someone who went through Dr T treatment twice, and never did get a reprieve of TEBB (except during the uterine washes, once)- I will say I'm not convinced it was ever my issue. I can't say one way or another whether it is yours... but I do like the new approach of coming at this from an immune perspective. Very smart!
    I know what a bummer it is to see positive changes, put stock in them, and then they get dashed. It really, really stinks, and I'm so sorry :(

    Will pray for this new treatment protocol!

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  3. Ugh - have I mentioned how much I hate hate hate BB? (anywhere in a cycle!) It really is almost worse (and sometimes it is worse) than CD1!

    Like TCIE - I like the approach of coming at it from an immune perspective, seems to make a lot of sense to me (not that Dr. T hasn't done awesome things for others, but if you can beat it another way, awesome!) Also, it seems that coming at it from an immune perspective may mean it will stay away longer (or at least not require intensive treatment each time you want to TTC).

    I will be praying for you, first that CD1 just never arrives and second that this new plan works! There is always so much hope with a new plan, and as TCIE said, it sucks when it doesn't turn out the way we hope, so I will also pray for peace in whatever comes next.

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  4. Ugh! TEBB is a jerk!! :( I'm so so sorry. I hope the immune approach works!!

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  5. I still have the TEBB, but didn't treat with an IV. I'll be trying the 3 new meds myself to see if that helps.
    I'm just frustrated that for you the TEBB didn't go away after the IV, except for 1 cycle. What the heck? I would have been MAD too. All that for just a cycle. URGGGGGHHHHH!!!
    I'll keep you in my prayers!

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  6. Oh no!! Stupid TEBB! I'll be praying this new approach works for you!

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  7. So, so sorry! Ugh! TEBB stinks! I am glad there is another protocol though. I am very nervous because we never successfully eliminated (or diagnosed) my TEBB.

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  8. Yucky TEBB :( It sounds like you have a good plan though. Keep your head up PD!! Praying for you...

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  9. Hey, I have some advice. I am struggling with infertility too. I began having brown spotting, 2w's and pelvic pain over the last year. Before that I would say I was normal. (I just got married over the last year).
    Tested negative for everything ( although we were virgins) Been treated by Dr. Toth ( full treatment) and Hilgers. Could not figure out why I had BB!
    Finally, I went to and RE, ultrasound showed cysts every month. Took HCG shot on my peak day, no BB!!!!!!!!! Tried EVErYTHING else! Make sure they do an ultrasound on you that you are not getting cysts. They cause BB, and the napro docs never figured it out for me even though I am thankful for their knowledge. Anyways, God bless!

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