I'm on the Doxy

[windwalker]

Yesterday, I went to my doc, two weeks ago I was put on doxycycline for my tonsils, and the first three days, holy moly was I in pain but the last ten days on it, I was fabulous, three days later it all started up again, told him about that and the article that has been on here and on the web about the month long regimen. He was convinced enough to have me start it and hubby too for two weeks. I walked out well, more like floated out I was so excited, I am just really hoping this will help. Cross fingers, say prayers!!!!
Dawn

[Katrina]

Good luck Dawn...saying a prayer I hope this helps you!!!!!!!

[tigger_gal]

Hi Dawn,
I sure hope that this will help you out greatly.... sorry you were so sick and was in pain....
Hugs
Brat

[liznazz]

I hope this works for you!!! Let us know what happens. liz

[holles]

hope this works for you! i just finished it a few weeks ago and still feel great!

if it works, let your doc know. they love hearing positive stories!

good luck!

[windwalker]

On day three and (knock on wood) I feel better than last week Thanks for the prayers n support, keep em comming! LOL you wouldnt believe how giddy I was when I got the script for em lol. I will keep you all informed. Take care!!!
Dawn

[Dani72]

I just came on here to post about doxycycline. My uro gave me a script this morning and told me to start taking it tonite, and then one every nite. I came on to see if anyone else was taking it and what there experience was. Oh I hope I have the success you all are having. What exactly has it done? Stopped the pain? The urgency, frequency, pressure? All of the above? Please let me know. I am really excited about this. I just hope I don't get my hopes up and then it doesn't work. I will try to think positive.
Thanks
So Happy you all are doing good!!!!!!!!!!!!!!!!!
Danielle

[windwalker]

Hi Danielle, I wont claim success yet, only because I am on week three of the doxy, I have had better good days, but some bad days too. I am prayin for ya that it works, keep me updated. I started on two pills a day for two weeks then one a day for another two weeks, my hubby is taking two a day for two weeks. Reuters health had an article on it, just can't find a link right now.
Yesterday evening I had a bad night, but today, I am feeling better. Crossin my fingers! Take care,
Dawn

[ICLori]

Oh, Dawn, that's great! Yes I remember reading that article, it's here somewhere on the boards in fact, I should try to find it...

Oh I hope you have a complete remission and that it never comes back!

You know, I know it's quite controversial, and surely this theory doesn't cover all cases of IC (I truly believe IC is a bunch of different diseases all under the same label) but perhaps there truly are some cases of "mystery" bacteria UTI's that are mistakenly labelled as IC when they aren't able to figure out what the bacteria is. If that is the case, then that might explain why some patients do get better on Doxycyline or why I got better on Amoxicillin. All of this is so preliminary and experimental and controversial, so I don't know what the future holds for any of this but I sure am happy to hear stories of people getting better, from whatever means.

You know, I would have been one of those people saying, antibiotics don't work, because I didn't get better on Septra and only got slightly better when on Cipro (and then got worse again immediately when I got off it.)

It was just a lucky accident that my dentist put me on Amoxicillin for a tooth removal, and boom I got so much better. I don't know what will happen in the future - if it will come back, if it won't, what happens next - but I am glad that for now I am in remission.

It would be wonderful if this helped some IC'ers get better! I sure hope that it will help many to get better.

Blessings, Lori

[ICLori]

I found the article again in case anyone would like to see it!

Blessings, Lori

Doxycycline improves cystitis symptoms in women
Jun 29, 04
Women with interstitial cystitis know too well that the bladder condition is hard to treat, so much so that their doctors can become frustrated trying to find something that relieves the problem. Now comes word that a common antibiotic might work.

According to a report in The Journal of Urology, treatment with doxycycline improves the need to urinate urgently and frequently, as well a chronic urethral and/or pelvic pain, in more than two-thirds of women with those symptoms,


As the authors note, a diagnosis of interstitial cystitis often signals the start of a chronic, progressive, and untreatable course.

Dr. Fiona C. Burkhard and colleagues from the University of Berne in Switzerland investigated the benefits of doxycycline treatment for 103 women with urinary urgency, frequency, and pelvic pain of unknown origin. They all had the white patches on the wall of the bladder -- called trigonal leukoplakia -- that is characteristic of interstitial cystitis, but did not have any conventional urinary tract infections.

The women took 100 milligrams of doxycycline twice daily for two weeks, then once daily for another 2 weeks. Their sexual partners were also treated with a 2-week course of doxycycline.

After an average of three months following treatment, 30 percent of women considered themselves cured and 41 percent reported improvement, the report indicates. Twenty-eight percent of women reported no change and 1 percent described a worsening of symptoms.

Among 31 women who consented to follow-up bladder examination, trigonal leukoplakia had resolved completely in 8 and decreased in extent in 12, the researchers note. The degree of leukoplakia was unchanged in 10 women and increased in one.

"We think that trigonal leukoplakia is associated with chronic infection and this supports us," Burkhard told Reuters Health. She said that, even without a bladder exam, her group treats women who have typical symptoms of interstitial cystitis.

"Before stigmatizing patients with the diagnosis of a potentially incurable disease, a trial run with doxycycline is feasible," Burkhard said.

She added that it is also important to treat the woman's partner, as symptoms often commence "after the beginning of a new relationship."

SOURCE: Journal of Urology, July 2004.

[ICLori]

You know what else is going around in my head? Well, I remember a doctor once giving me antibiotics even though my bacteria count was kind of high but not quite reaching the cutoff for official infection. She said she did that because she found that some patients have ultra-sensitive bladders to bacteria - sort of like a UTI reaction to even low levels - and they got better on antibiotics.

As it happens, I did get better, but in a few months it came back, or I was reinfected maybe, I don't know.

I think that is one of the theories floating around there, isn't it, that maybe fairly normal levels of various bacteria in the bladder, can cause something like an overreaction? And that if you get rid of the bacteria, the overreaction stops...?

Of course maybe it would also work to just get rid of the overreaction, I don't know. Like with Cyclosporin or something.

And, again, this theory probably only applies to some IC patients, if any at all. There probably are a hundred different causes of IC, a hundred different diseases all huddled under the IC umbrella.

Blessings, Lori

[Dani72]

Dawn,
Praying for you too. What is the reason for your husband to take it? I am confused. I heard that it helps the inflammation? I'm not trying to be nosy, just a little confused. Please keep me posted too on your progress!!!!! Hopefully this will be our way back to a normal life.
Big Hugz,
Danielle

[ICLori]

Hi, Danielle, not Dawn, but I thought I could answer your questions. It is true that some antibiotics (don't know which ones) have anti-inflammatory qualities, but in this study, the antibiotics are being used for their ability to kill bacteria, not for anti-inflammatory reasons.

The researchers in this article felt that the IC bladders they looked at displayed signs of being infected, although they could not figure out what the bacteria was that caused the signs. So they tried Doxycycline, believing that it would wipe out most gram positive bacteria.

Their results were somewhat promising, with a good portion of the patients getting better and some of them going into complete remission.

The researchers believed that the positive results were from bacteria being eliminated.

If in fact some bacteria are involved with this disease in some cases, then it is important, once you achieve remission, to also treat any sexual partners you have because possibly the disease can be passed back and forth between partners. I figure that is probably the reason for husbands being treated as well.

I have heard anecdotal stories of cases where men end up marrying one wife, who develops IC, then she dies of something unrelated, then he marries someone else, and she ends up developing IC too. The assumption is that there is some bug that can be passed between partners.

Now, there are plenty of people, including scientists and doctors, who do not believe in the idea that some cases of IC might actually be hidden infections. So this theory is really a very controversial one, but I think a very interesting one.

Even if this theory proves to be true, it won't account for all cases of IC - this disease just has too many different root causes for one thing to ever be the cure-all.

Blessings, hope this explanation helped a bit,
Lori

[donutgirl]

Windwalker.....BEST OF LUCK!! I sure hope it works for you.

The article above states..."They all had the white patches on the wall of the bladder -- called trigonal leukoplakia -- that is characteristic of interstitial cystitis, but did not have any conventional urinary tract infections".

I may be wrong, but I don't think I had any white patches on the wall of my bladder. Is anyone else here aware of that? Wouldn't the dr. see it during the cysto/hydro?

DIANE

[Dani72]

I know that is why I am confused, should I bother trying this? I don't rememebr any white patches either.
Danielle