Ugh....my month of Cipro didn't last.

[hollipop]

I finished my month of Cipro 250mg twice daily a few weeks ago, and slowly my IC symptoms are back. I was able to drink wine before this! Ugh...

But on the bright side, I went ahead and sent a broth culture specimen to United Medical Labs today, and my URO prescribed me another month of Cipro to get me back where I was. She feels that I am a good candidate for this treatment, and will work with me and Ruth ****, who I have my first "appt" with next Wednesday. I'm really excited about trying this, since I've responded so well with Cipro in the past.

I'll keep you posted, if anyone is interested in this.

May you all have pain-free days! :smile tee

[MelindaP]

Good Luck!!! Definately keep us posted!!! If I may ask, what were your IC symptoms before?

Melinda :)

[Katrina]

Good luck!!!!!!!!!!

[Vampireness]

hollipop - Wow your doctor is so amazing!!! So far none of the doctors like the idea about a foriegn nurse working with me or putting on antibiotics long time. They don't let me take full dose for a month even, just a week or two and preventative low dose after the full course. And wow your doctor is so nice!!! Send her over!! lol

I hope it goes well with United.

Keep us posted.

[hollipop]

Thanks!

Melinda - my symptoms are/were bladder pain, and I had frequency before I started taking the elavil. Usually no burning, but had that once right before I started the Cipro 2 months ago.

Vampireness - yes, I'm really lucky I found her. I also found out that she did this for another patient that was also working with the NP I mentioned, so I'm really hopeful that I'll recover as she did. She is also one of the few doctors that are doing botox, so I think she really cares and is willing to try more alternative ways to treat this "incurable" disease.

I can't wait until I get my results! I've been wanting to do this ever since I heard about it. I've ALWAYS felt that I had an infection.

[Romans8:28]

Good luck and keep us posted! You are very lucky to have a doctor who will work with you! How long did you stay off the antibiotics before doing your broth culture? I am just curious.

Shelly

[hollipop]

Hi Shelley, I think it was about 3 weeks...maybe a little more.

I'm feeling normal again.

Update: I got my results back today:

E.Coli (which the Cipro will take care of)
yeast (Called in my refill of Diflucan for that)
Staph (have to wait for my doctor to call me back when she returns from holiday)

Also, I passed a kidney stone last week, so I'm going to have a CT scan next week.

I'll keep everyone posted! Right now I'm feeling great...even enjoying wine again. :smile tee

[janee]

Who is your uro? My uro doesn't believe that IC is caused by bacteria.

[hollipop]

Update - Monday, July 10th

Janee - my doctor is Karen Delhey in Houston, TX. She is a very good listener and is always willing to try something if it will help her IC patients.

I'm doing well, considering that I passed a second kidney stone today. I gave my first stone to the doctor to have it analysed. She couldn't believe how big it was, and how little pain I had from it. It hurt more when it was going through the right ureter than the urethra.

My bladder is feeling good...a little sensitive this morning, but I had Chinese food Saturday night, Mexican last night, and wine 5 days in a row with decreasing amounts of prelief. I'm definitely getting better.

I just want to say a bit of thanks here to all of your great advice, especially MarthaF who I consider my guardian angel, Katrina for guiding me through my symptoms and alternative treatments, and ICDonna for always knowing everything about what I can do and can not do, and especially for introducing me to the world of carob chips and powder. Oh, and KaraIsabel for always making me laugh, no matter how bad it hurt. :kiss:

I'll keep posting, although I can't say that I'll be on as much now that I'm so busy enjoying my new life. ;)

As for my treatment, I'm on amoxicillin until I get a clear broth culture back, but my doctor doesn't think it will take more than 4 months with my degree of enterococcus infection. I'll continue my elmiron until the end of the month to help rebuild the damaged lining, probiotics and diflucan to avoid yeast, MSM to help with my PNE and inflammation of my bladder, and I'm weaning myself off the elavil.

Cheers! PM me if you would like to chat via email, and I'll send you my secret email addy. :smile tee

[Vampireness]

Secret email addy LOLOLOL yaaaa rightttttt haha

Sounds so great, all of it. But what I am wondering is, you got your report from United but how is it that you felt so much better so quickly? I mean you just got your report and your feeling great without treatment? And three bacteria types?

So did you have the Staph? What did you use for it?

With your degree of enterococcus? Meaning? How long did you take the antibiotics?
What is MSM and PNE?

How long have you been on Elmiron and Elavil?

[hollipop]

Girl, go reread my first post. lol I started the Cipro again on the same day I send my broth culture specimen, because my parents were coming into town and I didn't want to be in any pain. Cipro always helped me. I'm continuing the rest of the month with the cipro, then switching to amoxicillin to get the strep. I thought I had staph, but misunderstood Ruth on the phone. My doctor clarified it for me. I've been taking the Elmiron and Elavil since February 1st, but only have 60 more Elmiron to taper off with, and I'm down to 25mg of Elavil and weaning off of that.

PNE is pudendal nerve entrapment, which is a nerve found in the tailbone that when compressed, makes everything burn "down there". It is most common with men who ride bicycles a lot. Sitting is difficult, but standing immediately relieves the pain. A special seat cushion and MSM (a mineral found in organic whole milk) have pretty much gotten rid of it, but the only thing that can really be done is a nerve block. Cipro usually makes that feel better, too, so we are thinking that the backteria has invaded the spine, too. I'm going to give the antibiotics 6 months to cure everything, then go to a specialist for the nerve block if it still bothers me. It's not a good thing to have when you sit at a computer all day. Delhey doesn't think it is related to my UTIs, but I'm not convinced of that since I never had it until March of this year. That's when I was not taking antibiotics anymore and trying the Elmiron and IC Diet.

[Vampireness]

Oh yeah I forgot lol yup I now remember. Yeah I did the same thing, take medication after getting the culture but it didnt last very long.

PNE sounds scary. Cipro does have anti-inflammatory right? So could that be why your feeling better?

Whatever it is, I hope you continue to feel better.

Bactrim is something which is like Cipro to you, it makes me feel alot alot alot better on it for sometime. But I have not had the chance of being put on it for a month. Just the normal two weeks.

[helen newcastle]

Hi I am also with Karen. G Delhey, Have IC and continous UTI . EColi etc , I have never heard of a Nerve block. I m in terrible pain. The infections used to respond to antibiotics, can u email me with you details what u take , and how and how long does the nerve block last. My personal E Mail is haprestegard@yahoo.com, if u want to send me your phone number I would love to chat Helenx

[Vampireness]

hollipop - How you been feeling? better I hope

helen - I'm sorry to hear about what your going through....Used to respond to antibiotics dont sound good, perhaps a resistance and you can try another antibiotics since theres infection present?

[ICNDonna]

Antibiotics can have anti-inflammatory effects so the relief you are feeling could be partially from that. I hope it's not in your case so you'll continue to improve. Also, since you've been on elmiron for six months, that may be partially responsible for your improvement so if the antibiotics don't work completely, you might want to go back on elmiron.

Donna

[hollipop]

I'm on amoxicillin now 450mg 3 x day. I'm eating pretty much what I want now (including tomato sauce), but I've had a little bit of urethral pain, but not too bad. I'm going to try to go back on a more IC-friendly diet and give the amoxicillin more time to get rid of the infections I have.

I'm no longer on the elmiron or elavil. My doctor doesn't think I need them, since I'm responding to the antibiotics. Thank goodness for the broth culture!!!

[Vampireness]

I'm soooooooooooooooooo happy for you hollipop, that is soooooooooo great!!!!

So you've weaned off the Elavil completely and no withdrawal symptoms?

Good to hear amoxycillin is doing it's job for you.

[hollipop]

Hey girlie...how are you? Any improvement yet?

I'm drinking coffee now! :)

[Vampireness]

Thats so great about coffee.....I'm more of a tea person.

Well the diarherra's been bad so I've slowed down on probiotics and well the pains being alittle bothersome and burning too and frequency and urgency sometimes are really bad.....

So its like I get alittle better then really bad...not sure right now...it's crazy

[hollipop]

Hang in there. I was already much better when I started the antibiotic treatment, so that's why I responded so much faster, I think. I'm basically eating/drinking everything now, just trying to continue eating healthy. I still avoid fruit and juice, though.

[Vampireness]

Oh I see....thats great.

However, I do find it odd to be on antibiotic for just a month considering the fact that I've been on antibiotics for two weeks for four years and I go from getting better to worse quickly.

Cefaclor has been causing me bad diarrhea and Ruth was saying, I have to a stool culture? My diarherra is because of Cefaclor......why would I need a culture? She said it could be a bacteria in my gut...but Cefaclor's side effect IS diarrhea and if severe diarherra happens to stop medication.

I was just about to sent out culture but I'm putting that on hold till I hear from Ruth on what to do. I wanna go back on Bactrim, I actually felt close to "normal" then.

How long have you been on amoxycillin? How long more do you have to be on it?

[hollipop]

This is really my first week of really feeling normal. I have about one week left of my first prescription of amoxycillin, and I plan to take it another two months before I do another broth culture. My dr said that only I can tell when it's time to recheck, so she is leaving it up to me. I think I have a 4 month prescription.

Ewwww....I would hold off on that culture, too. I think I did better on the Cipro than the amoxycillin, but now I'm feeling even better after 3 weeks, so maybe you just have to hang in there a little longer? Did they test the bacteria against Bactrim in the broth culture? I never had any luck with Bactrim, but then you and I have different bacteria, so maybe it will work for you.

[Vampireness]

Yes the bacteria was checked and taking Bactrim is like taking nothing meaning I don't feel any bad side effects other than feeling better.

It seems like my doctor is getting rather...uncomfortable? with Ruth's suggestion etc. She said I would have to admit myself into the hospital if I get really dehydrated because of the diarherra. She said to complete 3 weeks. Honestly, I don't know why I'm on Cefaclor, because I originally told Ruth that Bactrim has done wonders for me and it's something I tolerate so well....

Cipro was also tested but I haven't taken that before. She chosed the Keflex family to deal with my Klebsiella. I wanted to send off my culture today but I waited for Ruth's reply all night and day before 2p.m because that's the cut off time for FedEx so since she didn't reply and she was already mentioning about stopping the medication and to get a stool culture (which my doctor didnt think was neccessary), and I didn't know if I should still test it if I'm gonna stop it after all.

Like you been on Cipro for two months and I've had these prescription for negative bacteria for two weeks all the time for four years so when Ruth told me it takes two weeks, I thought that's nonsense. But she told the doc to prescribe a month (not sure why)

Because I missed the flight cut off time, the only time I can send it is on Monday. But I really want another antibiotics, this diarherra side effect is really painful and annoying and uncontrollable.

Stated in the side effects to stop if diarherra gets severe, was thinking I would adjust but Sunday would be three weeks and I still have diaherra....so I don't think this side effect will go away.

Will email you more.

[ICNDonna]

One thing you might try is stopping the antibiotic for a couple of days to see if the diarrhea stops. If it doesn't stop then, I do think it would be a good idea to go for that culture.

Donna

[Vampireness]

Holly,

How have you been doing? Good as usual I hope :)

[hollipop]

I'm hanging in here. Bladder is just a little sensitive at times, but my stress level is way up, as you know. My PNE is actually getting worse, so I'm going to see a specialist about that. Otherwise, I'm doing pretty good...can't really complain. I hired a fulltime employee this week, so hopefully the stress will go down.

How are you? Antibiotics kicking in yet?

[Vampireness]

I'm really sorry about the stress and I think thats a great idea about hiring someone. I certainly would it makes you feel more relaxed.

I'm sorry about your PNE, is that what's affecting your bladder? like making it alittle sensitive?

I'm not doing well. The diarherra stopped sometime ago, I'm still on antibiotics and never stopped. I have my constipation as usual but I don't know now what to think when my ab is so swallon. It was usually urinary retention and stools being kept inside, so when I go to the restroom I feel better. So I'm not sure what's what...because I've been peeing like up to 20 times a day and 10 or so at night. So I was thinking maybe my bladder is irritated so it swelled up. But doesn't explain why it goes back down after I poop. It's all confusing and I acutally completed my one month of antibiotic so dont know what to do.

I think I'm just gonna switch to another antibiotic my urogynaecologist gave me. Her idea was to make me take two weeks of Nalidixic Acid and another two weeks of Bactrim so that resistance would be hard to develop...so I think I wanna do that.

[Vampireness]

How you doing Holli?

Hopefully good. I took another culture and I've got two new bacteria explains why I've been feeling really bad. I've got layering bacteria, one is being treated and another starts growing.

I'm on two types of antibiotics right now. Ruth said never to stop antibiotics, I had to stop when I ran out and waiting for results on what I should do next. Good thing I didn't stop when I had diarherra huh lol

My doctor said three days is too risky to stop the antibiotic so she said she will give me different doses (375mg) till she can bring in the 250mg. Hopefully no one else stops antibiotic halfway through when experiencing side effects or when someone suggests it.

Let me know how your doing Holli...*Smiles*

Oh I forgot to add that the broth culture showed the bacteria but the urine culture showed it negative.

[hollipop]

I'm doing good with the IC, but my PNE is really giving me a hard time. I have a consultation with the orthopedic surgeon on the 11th, so hopefully I can get that taken care of soon.

Glad you are getting some answers now, but ugh! More bacteria??? Can't you get a break at all? :rant:

Hope things continue to improve for you.

[PlainJane]

Hi Vampireness,

What bacteria are showing up now?

Erica