very upset; halfway through, and it's worse (doxycycline update)

[holles]

i do not understand this at all. i'm almost halfway through the doxycycline regimen (just 2 more weeks to go), and my pain is worse. i'm peeing all night again. i am leaking again. i was doing fine until this week. i ovulated monday, and now things are horrible again. :( i just know ovulation had something to do with it. i'm still on the oxytrol patch (i'm too scared to stop using it), and i haven't changed my meds or my diet yet. so the only thing i can think of is hormones.

do i still have a chance of the doxycycline working? or what?

i'm really frustrated. i had a little setback last week because of sparring, but that got better. and now things just suck all over again. :(

anyone who did doxycycline, did you notice the same thing? if i can make it through the rest of my cycle, i will be so happy. and if all this regimen does is make the first 2 weeks of my cycle bearable, then i'll take it. but what else can i do for the 2nd half of my cycle? i'm still not ready for birth control pills because i'm just praying a miracle baby will come our way. but maybe it's time to really throw in the towel.

just need some support here. it's a rotten day. i got barely any sleep. when i wasn't in the bathroom peeing, i was dreaming about being in the bathroom peeing. :rolleyes:

[vm]

I haven't done doxycycline - but I did want to give you a big cyber hug and some smooches. :kissing: Being in that place of not knowing what's next or when it will get better sure is scary. I hope you find some relief soon, sweetie.

[Annie2]

Holly,

I did the Doxy Treatment but I am post-menopausal and had a hysterectomy long ago as well so I can't give you any input on how your cycle might influence how you are feeling.

I do have one thought about your situation. Are you doing anything for yeast control? At the 2 week mark I did begin to have a bit of a problem with yeast. Yeast problems can increase and mimic IC symptoms. If that could be the case in your situation, you might want to check with your doctor to see how he/she wants you to handle it.

Another thing to keep in mind is that you may need more time for your bladder to begin healing. If this treatment works for you, I would think at this point in your treatment bacteria are still being killed off but your bladder has not had enough time to start healing and is still responding to the hormone changes of your cycle.

Hang on and don't give up in the middle! You have to give it the full time before you will know your results. When I finished the full treatment I was given Diflucan again to destroy any remaining yeast. After that had time to work I had a couple of really wonderful days when I felt almost normal again. Unfortunately, I fairly quickly went back to my pre-treatment state and so the treatment didn't totally work for me. It may just work for you, though, so hang on tight, give it plenty of time and see the treatment through to the end.

Wishing you the best with this!!!
Annie

[holles]

kim,
thank you for the kind words. it is scary, you're right. i just wish i knew what the outcome would be. i'm the most impatient person on the planet if you can't tell. :)

annie,
thanks for your advice. i did 2 rounds of gynezole the 1st 2 weeks of treatment to prevent yeast infections. so far, i've not had any sign of yeast. but i'll make sure if i see any sign, i'll let my doc know. i'm finishing the treatment, but i just want a crystal ball to tell me it's going to work. kwim? lol. it would make it so much easier.

but hey, if this stuff gives me 2 weeks a month that are awesome, then it's better than nothing. right?

i'm sparring tonight, and i'm going to make sure i don't get kicked there again. omg, if i do, i'm going to have to wear a freaking diaper. :rolleyes:

thanks so much for the support. i really appreciate it.

dh is lucky. he finishes his meds tomorrow.

[ICLori]

I'm sorry you are feeling bad. I know that so many of us have problems near our periods. I sure hope you feel better soon!

I am thinking at this point that just about any and all antibiotics, make my bladder symptoms worse. I'm not saying I don't need them - I still think it's possible that my bladder problems are maybe because of some unidentified bacteria or something, like what Dr. F. and some others say - but it seems like even if they are doing me good (like when they were combatting a UTI I had recently) they still hurt my bladder while they are doing good.

I don't know if that is what is happening with you - could be just hormones, could be totally unrelated to anything because you know how IC is, sometimes it just flares up for no reason. But if you are like me, you might find that you are hypersensitive to some meds. I used to think maybe I was just imagining things when I noticed that many meds caused my bladder to flare - docs told me it was impossible -but then I came here and saw that some other IC patients also experienced this and I realized, I wasn't crazy or anything, that I was just...unlucky I guess. Anyway, if you do find that some meds like Doxycycline cause bladder symptoms, you aren't crazy, it does happen to a few of us.

Blessings, Lori

[Katrina]

:grouphug::grouphug::grouphug::grouphug::grouphug:
I wouldn't doubt yeast and ovulating are hurting you.....I hope you get relief somehow soon....I am not sure how but good luck to you!

[vabeachdebi]

I found some very interesting information on Doxycycline (what my IC specialist has me on right now) on the internet....read this report....
http://www.healthylivingeating.com/SelectedHealthNewsB-6-29-04/NewsonHealth6.htm.
It shows some pretty promising results.

[vabeachdebi]

Here's one more good link on doxycycline...
http://www.dental.am/more.php?id=702_0_1_0_M42

[holles]

vabeachdebi,
that's the treatment plan my gyn has me on. he read about it and called me to start me on it. i'm almost done with my second week. i hope it works for you and for me. something has to. right?

good news though. i sparred tonight. the sweating makes me feel so wonderful! i talked to one of the instructors at my class and told her i would have to stop for the night if i took a hit or kick to the bladder. i had no idea she was a physician. nor did i know she was the wife of the school's founder. she told me not to spar. but when i explained that sweating makes me feel good and that i have endometriosis also and need to work out, she totally understood. she just made sure i told everyone i sparred with that they needed to avoid any female organ areas. it went great. i sparred only black and red belts, and worked mainly on timing. and i feel good still. i was in so much pain before i went i was crying. and now the pain is gone. i sweat exercise is the best medicine. if only the good feeling lasted longer. kwim?

just 15 more days of this, then i'll have a better idea of how it worked. keeping my fingers crossed.

thanks so much for all the support. i really do need it. i'm sure my gyn appreciates it because it keeps me from bugging him 24/7. :rolleyes:

[vabeachdebi]

Yes, I had to finish my Flagyl for Bacterial Vaginosis before I could start my Doxycycline treatment due to the yeast issue. I started the Doxy a couple days ago and feel much better. I still have some twinges but nothing compared to what I was having. I still think I had a slight UTI from the catheter bag I carried for three days and the urethral dilation....I'm almost sure of it. Anyhow, let's keep in touch and see how this goes, maybe we've found something. I sent my doctor the websites that I found on it too....he just responded and stated he was going to review them this weekend. It's good to have a urologist (IC SPECIALIST) who lets you email him. I found a good one. Thank God!!!!

[holles]

vabeachdebi (is your name debi?),
the weird thing about this is my urologist doesn't know i'm doing doxycycline. my gynecologist is the one who started me on it. his wife is a urologist, and she had the article in the journal of urology july issue. he made a copy of the whole article for me too. it's about 4 pages or super-tiny print and lots and lots of huge words. lol. but i feel empowered just by having the info. kwim? :) i'm so glad you're feeling some relief already. i'm not yet. but i'm still hopeful something good will come out of this. it's been 12 hours since i sparred, and the pain is returning. but i'm so glad i got 12 hours of pain relief. usually it's just a few hours, so 12 is freaking awesome! :D i need to start running or something in the mornings i think, so i can have pain relief during the day too. but it was so nice to sleep ALL NIGHT last night! :woohoo:

your uro sounds really cool. all my uro ever did was recommend interstim (can't do it if i'm involved in karate and ground fighting). i'm so glad i have a gyno who has a brain.

let's definitely keep in touch about this. my doc said the women in the study were followed for up to 70 months. some had their symptoms return in about 3 months, but some were still doing fine almost 6 years later. :) that's really promising. maybe one of these days i'll be able to eat strawberries again. :)

[vabeachdebi]

Yes, my name is Debi, yours is Holly, right? The only problem I'm having with the doxy is the yeast. I run into this viscous cylcle of antibiotics then yeast which causes a problem which requires an antibiotic...argh...!!!! Anyhow, the doxy seems to work well for me but I have some urethral discomfort....although that could still be coming from all the stuff that happened to me a couple weeks ago (i.e., having a cath bag for three days and my urethral dilation)....what fun!!!! I'm praying the doxy works. I also have allergies and I used to use Claritin but I called my doc and asked him to change it to Zyrtec, since I've heard so many folks say it works so much better for them and their IC. I figure between the doxy and the zyrtec I might just be able to make it through a day of work without taking my own toilet paper (soft, white).....the stuff where I work is that hard, dry toilet paper that sticks to you (sorry for being so descriptive) and makes you burn.

My uro is very good. I was happy last night because I walk miles and was finally able to go out for my long walk. First time in a long time. However, a bug flew into my eye and I couldn't get it out so I had to walk back home with my eyes tearing. Man....sometimes you have to wonder if it's just not your day....HAHA!

I will definitely keep in touch with you on this. To be honest, I'm pretty positive it will work. After I had my daughter, about 10 years ago, I suffered one UTI after the other and went through all this....it got really bad....but the one thing I do remember is that after the cysto and the urethral stretch and scopes and all that stuff that ironically enough they kept me on doxycyline for a long time. I did great for 10 years and then my mom died in May and boom.....here I am again....same old thing. So, I have high hopes and have said a LOT of prayers....this is going to work....I just know it. And who knows, maybe if we find it does we can tell others our story and help them. This is the worst kind of pain. I told my uro that I'd rather give birth to twins than go through this to which he jokingly replied.....twins weigh less than one child.....haha!!!! He's very understanding and I sent him the link to the sites I found. I wish I could read the article you have.

Talk to you soon,
If you want you can write to my home email too, it's listed on the site or I can send it if you can't find it.
Good Luck and I'll pray for you too!!!!

Debi

[BethW]

Hi Holly, thanks for the update on the doxy - I'm not on that treatment myself but I'm really interested in how it's all going for you. I too, think that my IC is hormonal - I always flare with ovulation and then with my period. I know how you feel. I've started lupron for the endo so my hope is no period - no pain. Hang in there and let us know how things are going. Take care, Beth

[vabeachdebi]

Hi Beth, The doxy is working great for me also. I too seem to have more issues that seem to come with my monthly cycle. But the doxy has taken a lot of the urgency and burning away. I still have several weeks to go but so far, so good (except the yeast). I also tried some acupuncture for the first time today and that helped tremendously. I feel better than I have since early July of this year. Debi

[holles]

have a small update for y'all.

i am feeling better. my bathroom trips are cut down even. :) that's awesome! i still get up in the night, but only once or twice. and it's usually around 4 am. i'm so relieved. i had a really bad week during and after ovulation, but now i'm feeling okay. i've got 9 days left of the treatment, my period should be starting in a week and i'm actually feeling okay today and yesterday. :D

when i have to go, i really HAVE to go. if i try to hold it for a while (even 10 or 15 minutes), then i can't go at all. that's the only downside right now. but i haven't had a spasm in a few days. :woohoo:

i'm almost ready to stop the oxytrol patch, but i'll wait a few weeks first. i'm not that brave yet. ;)

we did have a major boo-boo today. and i hate to admit this, but dh and i dtd and didn't use a condom. we tried, but it was so uncomfortable. so we toyed with fate and did it anyway. i know dr g said to use condoms in case any bacteria was in the hoo ha (that's my super technical term), but dh has finished his meds, and well, there's no excuse. (shameface) i just hope we didn't mess things up. my fingers are crossed like you wouldn't believe. we did agree no more funny business till the last pill though. please be thinking good thoughts and send us anti-bacterial vibes if there is such a thing.

i even drank a beer tonight! :)

[MarthaF]

Hi All,

Just wanted to add that in the article on the Swiss research they say that they did not find a specific species of bacteria in most of their volunteer patients so they don't really know what they were treating. They say in the complete article that they think a more extensive culturing technique should be developed. People are obviously responding to antibiotics but what is being treated?

There is a more extensive culturing technique already being used by Dr. Paul Fugazzotto and which can be performed by him or one of two labs near DC: United Medical Lab in McLean, VA or Fairfax Medical Lab in Chantilly, VA. These labs use the broth culture and usually find a Gram positive bacteria. Those who use the right antibiotics find it takes longer than a month of treatment to really get rid of the bacteria.

If you respond to the Doxycycline but regress after you stop treatment you might want to have a broth culture done to see what bacteria is there and which antibiotic would treat it. The Swiss do not say what kind of culture they used but in our research here we find that 80% of the IC patients have a Gram positive species, usually Enterococcus.

Martha F