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 :pray:I hope this helps you!!!!!!! :grouphug:

[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!!!!!!!!!!!!!!!!! :woohoo:
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

[ICLori]

I have no idea about the white patches either to be honest.

A couple of months ago, I would not have been so enthusiastic about the idea of trying different antibiotics, but I can't help but be influenced by my personal experience of getting better on Amoxicillin.

Between that experience and this article and a couple other things I have read, it makes me wonder if some people aren't being helped by antibiotics.

I don't know how to predict ahead of time though which people would be helped and which people wouldn't be. I think it's like just about every other remedy I've read about - you have to try it to see if it's going to work for you, no way to know ahead of time if it will or not. Then there is the hassle of trying to get a doctor to let you try the antibiotic therapy. Alot of doctors these days are very cautious and won't prescribe antibiotics unless there is an obvious infection backed up by urinalysis and even then they normally only give you 7 days worth, maybe 10 days.

But the thing is, it's probably worth the hassle of finding a doctor and risking the side effects, IF it ends up putting you into a long remission. If it doesn't, it's not worth it. But who will benefit from this? I don't know. I am waiting and seeing, and eagerly reading each post that is made about this because I am very curious and somewhat hopeful.

Boy I wish I could find a study like this with Amoxicillin, because it helped me, and I wish I knew more about why it helped me and if it would help others too. Anyone know of any studies with Amoxicillin? I have tried looking but maybe I'm just not looking in the right place?

Blessings, and wishing the best of luck and healthy to anyone who tries the Doxycycline or any other IC remedy out there,

Lori

[Dani72]

Lori,
Are doxycycline and amoxicillin the same thing? I know you said in your other posts, when that doctor was posting, that you couldn't find a doc to put you on it. Maybe if this works for me and Dawn and anyone else, you can use our success stories to back you up. I have also seen amoxicillin sold online. I know we are supposed to do what our docs tell us, but sometimes do we need to take matters into our own hands? It is frustrating because it is our bodies and we know what works best, but they won't listen. I took the 100mgs of doxy last nite and so far minimal burning, no pain, minimal urgency and frquency. I don't know if it's just a coincidence. :confused:
Danielle

[ICLori]

Hi, Danielle, you are right about things being sold on-line...I know from personal experience but I'm being kind of mum about it because I don't wish to encourage any foolhardy or dangerous behavior on the part of other IC'ers. If I want to be foolish and do dangerous things, that's okay for me. Anyone who knows me knows I am very prone to taking matters into my own hands and taking enormous risks....I'm just so desperate to get well, you understand...

Doxycycline and Amoxicillin are both antibiotics but they are in different classes and work differently. I never in a million years would have thought to ask a doctor for a trial of Amoxicillin - it was purely by accident that I discovered it made my IC symptoms go away - I was prescribed it to get a tooth out, by a dentist, and then I found out that my IC went away while I was on it.

I tried doing a search to figure out why on earth Amoxicillin is giving me a remission, and the only possible clues to this mystery I could find involve either Lyme disease or a type of bacteria that only very rarely causes UTI's in susceptible individuals - enterococcus.

If I had to make a guess, I would say that either Lyme spirochetes were in my bladder, irritating it (they are always missed during urinalysis I am told, because they never reach the high numbers required to be an "official" infection because spirochetes reproduce incredibly slowly in comparison to the more common UTI culprits like e coli.) or else this enterococcus stuff that some researchers are talking about and that they say is also hard to find on cultures.

Now let me go see if I can find that article about entero. again and Amoxicillin, I thought it was kind of interesting. It was on Remedyfind, I remember that...

Blessings, Lori

[ICLori]

Oh, here it is, I found it! It actually talks about Augmentin first, which is a combo of Amoxicillin and some other antibiotic. But you can see where below it talks about how this bug can usually be fought by Amoxicillin...

You can see by the ratings too that some people have had success with it and some haven't. That sure is typical of any remedy for IC, isn't it?

Antibiotic Therapy: Augmentin
One theory for the cause of Interstitial Cystitis is the presence of enterococcus bacteria. First proposed by U.S. microbiologist Dr. Paul Fugazzotto, the bacterial cause of IC remains a controversial subject. Contrary to most other IC researchers who believe IC is of non-bacterial origin, Dr. Fugazzotto believes that Interstitial Cystitis is caused by gram-positive bacteria, usually enterococcus. He also believes that the agar cultures processed in labs today are not adequate in finding this pathogen. Antibiotic treatment for IC usually consists of a 3-4 month course of treatment.

Enterococcus is a common bacteria that is normally found in the bowel of healthy people. There are many types of enterococci and they are difficult to distinguish from Streptococcus. Enterococci are not aggressive bacteria and they rarely cause illness in healthy people. Two types of enterococci -- Enterococcus faecalis and Enterococcus faecium --occasionally cause human disease, most commonly urinary tract infections and wound infections. Other infections, including those of the blood stream (bacteraemia), heart valves (endocarditis) and the brain (meningitis) can occur in severely ill patients in hospitals. Enterococci also often colonize open wounds and skin ulcers.

Enterococci are usually sensitive to ampicillin (a broad range antibiotic) and vancomycin. However, in 1986 the first vancomycin-resistant enterococcus (VRE) was found and this particularly virulent strain of enterococcus has plagued hospitalized patients since that time.

Treatment of enterococcus typically involves an antibiotic in the penicillin family such ampicillin or amoxicillin. Unlike penicillin, ampicillin and amoxicillin can penetrate and prevent the growth of certain types of bacteria, called gram-negative bacteria. Augmentin (Amoxicillin / Clavulanate potassium) combines two antibiotics and is used mainly to treat infections of the middle ear, sinuses, bladder, kidney, and uncomplicated gonorrhea.


AVERAGE MEMBER RATINGS
based on 6 ratings (0 = poorest; 10 = best)

Weighted ? 5.9
Effectiveness 6.7
Lack of Side Effects 4.2
Ease of Use 8.7
Effective After Long Term Use 4.8
Cost Effectiveness 3.8



INDIVIDUAL MEMBER RATINGS




Jillian (5)
11/1/2004 8:59:13 PM 9.5
bladder infections
I use this antibiotic after intercourse to prevent a resulting bladder infection. Large doses will cause unimaginable pain in my bladder. I only take one pill after sex. I can tolerate a low dosage.


Dosage: 250 mg. tablet
Frequency: 1 dose 1 x day
Total Length: several days
Brand: (Other - not listed here)

1 members found this rating helpful. Was this rating helpful to you?


Katielaurensmith (2)
9/3/2004 4:01:57 AM 0.7
Augmentin
Several months on this drug left me worse off than before I started it


Dosage: 250 mg. tablet
Frequency: 1 dose 3 x day
Total Length: several months
Brand: Augmentin

0 members found this rating helpful. Was this rating helpful to you?


knlschiller (2)
7/20/2004 12:32:38 PM 5
no luck
I had no luck with this treatment. It was almost as if the pill was a sugar pill. Glad to have discovered the diet.


Dosage: 250 mg. tablet
Frequency: 1 dose 1 x day
Total Length: several months
Brand: (Other - not listed here)

0 members found this rating helpful. Was this rating helpful to you?


Teeger671 (11)[Denmark/WI - United States]
7/8/2004 2:41:07 PM 4.1
Antibiotics
Somewhat helpful....side effects very high and troublesome. Long term problems but not long term improvement that didn't come right a way.


Dosage: 250 mg. tablet
Frequency: 1 dose 1 x day
Total Length: several months
Brand: (Other - not listed here)

0 members found this rating helpful. Was this rating helpful to you?


Martha F (3)[Richmond, VA - United States]
7/1/2004 8:18:03 AM 8.8
Augmentin for Interstitial Cystitis
Augmentin was very effective for IC. However, after 2 months it caused symptoms from buildup in the tissues and I had to reduce the dosage. Later I switched Amoxicillin which is just as effective and easier to tolerate.


Dosage: 250 mg. tablet
Frequency: 1 dose 3 x day
Total Length: several months
Brand: Augmentin

1 members found this rating helpful. Was this rating helpful to you?


rlmc (5)Rating Updated!
6/29/2004 11:29:52 PM 7.2
Augmentin really helped cure my IC
Followed protocol set forth by Cystitis Research Center, pursuaded my doctor to give me the augmentin, and he finally gave in. I was completely cured, and so was a friend I recommended to the program. Augmentin really worked for both of us and abou...
[Read More]

[Dani72]

Lori, :smile tee
So it is for some hidden infection then, right? I remember though someone writing a post when that doctor was on and mentioning something about either doxycycline or amoxicillin's anti-inflammatory properties. My uro just said it was helpful with the burning. That is one of my symptoms. I wake up in the morning in no pain and then as soon as I start urinating it burns in my urethra and then the pain spreads all around my gential area and down my legs. And of course having the fequency makes it worse, so I have a tendency to try to hold it in. So by the end of the day the pain is worse than the morning. But then I usually sleep through the night, so no urinating of course, and then in the morning before I go, no pain. So again I am confused to as why I taking this med, but I will give it a shot. I haven't had any side affects yet. Do you happen to know how long the usual regemin(can't spell) is? Thanks for all your info.
Danielle

[ICLori]

Hi, Danielle, I don't know to be honest. I just finished reading that book by Dr. C. who was on the boards, and he says that for his patients, he usually keeps them on antibiotics at least 3 months before reassessing. I guess each doc has to decide what is best for the patient. 3 months seems like a long time for those of us who are used to the 7-day routine for acute infections but he says in his book that chronic infections take a lot longer to really cure and that some patients need to be on suppressive therapy for life to feel better, antibiotics for life. I guess that isn't so bad. I know of lots of people with really bad acne who have to take antibiotics pretty much forever if they want their skin to stay clear.

Probably the smartest approach would be to get a broth culture done (United is one of the labs that does this I understand, and Dr. F. does this too) and then work with your doc to see what antibiotic is right to take when and how long. That way hopefully you would really see what organism might be causing the problem (and whether or not any bacteria is causing the problem or if it's something else) and then go from there. There's more information about this at a place called IC information center I think it is. You can do a search to find it.

As to whether Doxy is helping you because it's antiinflammatory or because it's killing bacteria - I have no idea how you would separate it out. How you would know for sure.

The article I posted in a message up the thread, seemed to insinuate that the positive action of Doxy was due to it killing bacteria...the article seemed to state that IC looked and acted like a chronic infection, and got better when given antibiotics in many cases. If their theory is correct - if some cases of IC really are due to chronic infections - then it's not surprising that an antibiotic could help.

Blessings, Lori

[windwalker]

Wow!! Surprised about all the replies here. :) Yes, my spouse is taking it in case "something" is being passed bet. us, that was part of the article and it makes sense, I cant remember which anti my doc had me on for 10 days I felt great!!! Then me and hubby, well youuu knowwwwwwwww, and the next day BOOM! Back to pain again. So I explained the whole article to my doc and he said lets give it a try n see what happens. Yea, Danielle, I have read both about anti's having anti inflammatory ('scuse the spelling if I have it wrong) properties somewhere else online, but the article sounded like it deals w/bacteria not showing on the cultures, which I believe is possible, anything's possible ;)
It was another "normal day" a little urethral burning but none of the bladder problems. I can handle that!
Thanks Lori for posting the article. Had so much going on yesterday couldn't even remember where it was, I know I have it on my puter and had a link, but it was one of those days.
Thanks Diane for the well wishes. Tomorrow starts my final week, lol almost afraid to stop after I am finished because the cpl good days in a row!!!
Take care,
Dawn :) :) :)

[Martha13]

Lori is right - some bacterial species are slow growing and do not show up on the typical 24 hour culture done by labs today. The broth culture which has been around for a long time is much more extensive and can find slower growing bacteria, especially those in the Streptococcus family. The labs do not use broth culturing because it is slower and labor intensive compared to the agar plate. They want a quick turn over and the agar plate has been used for 50 years so they think it is the "gold standard". Meanwhile, many of us are being short-changed by the labs. I read the whole Doxycycline study in the Journal of Urology and the lead doctor commented that their results indicate there is a need for more extensive culturing techniques, or something to that effect. I wrote her but did not get a reply. They did not find very many with bacteria in the volunteers in their study so had no idea what, if any, bacteria they were treating. They did not say what method of culturing they used.

It is the usual practice in medicine to do a culture before ordering an antibiotic. There is a lab near DC that is doing broth culturing for patients who can send a specimen on their own. The number of United Medical Lab is 703-356-4422 (Chantilly, VA). They will give instructions for mailing a specimen and are a certified lab. They will do both a routine culture and a broth culture and if any bacteria species are found they will do a sensitivity test and the report will show all antibiotics that would be effective. An MD would have to prescribe a dosage. For those of us (and there are many) who have gone this route most find they improve on the right antibiotic. It will take longer than the usual week or 10 days since it has been around for a long time in most cases and may have invaded the bladder wall. Usually after a few months the dosage can be reduced, depending on symptoms.

If anyone has questions about this approach feel free to email me at: mfmidlo@aol.com. We are doing research here after recruiting 50 IC patients and 50 controls who have sent specimens. Results should be available within a month or so. A molecular machine (PCR) test is also being done.

I think one day we will see much better culturing done (after 50 years it is time) but the patients and doctors will have to demand it since the labs are not eager to change - the agar plate is fast and cheap. You can read some success stories on icsuccessonline.com written by those who have used antibiotic therapy based on a broth culture.

Martha F

[ICLori]

Thanks, Martha! I don't see that any harm could be done by trying a broth culture.

I wish the Army labs did broth cultures because I'm really curious now if the broth cultures would turn up something in my case that the agar plates missed. I'm just perplexed as to why I'm so much better on Amoxicillin, when I don't have enough bacteria or the right kind of bacteria to have what they term a full-fledged infection.

The uro often would make comments, during times when I was feeling better, to the effect of, "your urine looks cleaner this visit." Plus I remember him saying that the cultures always showed I had Strep B but that Strep B could not cause any cystitis symptoms, that no matter how many of those germs were there, they couldn't possibly be bothering my bladder. But they were always there in big quantities. What if for some strange reason my bladder decided it didn't like strep B living in there? And mounted a UTI type defense against the Strep B? Isn't that at least theoretically possible? I mean, how do they know for certain that Strep B living in the bladder can't act as an irritant??? Even if Strep B doesn't irritate 99 out of 100 bladders, couldn't that last bladder be the exception? And you know, Strep B always showed up even after they would give me antibiotics for an e coli infection (sometimes I would get those on top of IC.) So I guess those antibiotics they gave me for e coli didn't kill the strep B I had.

And if that were the case, then maybe that would explain why I feel better on Amoxicillin, because it probably gets rid of the Strep B that they already told me is always in my bladder. But supposedly never causing symptoms.

You know I was just reading that book by Dr. Cassell, the doctor who came to visit us on these boards. I ordered his book because I was kind of interested in what he was saying and wanted to learn more. I was hoping that I could learn something that might help me or other people.

Anyway in his chapter about chronic cystitis (he seems to believe that at least some cases of IC are actually just chronic cystitis) he says that especially in cases of years of recurring UTI's, the bacteria start burrowing in to the bladder muscle instead of just hanging out on the surface.

He didn't explain why this happens that I could figure out, maybe I misread something but I wish I understood why this might happen. And I don't know how he knows this for sure, either.

Anyways he said that's why so many urinalysis cultures turn up negative for infection, because the infection is buried way deep and so you don't normally get the free bacteria and pus and what-not that you see with the typical surface infections.

I thought it was kind of an interesting theory. It would explain a lot if it were true. Maybe it is true, I don't know.

I'm glad that more attention is being paid to IC and more research is being done.

Blessings, Lori

[Dani72]

Dawn,
Glad you are still doing well. Today I have to say I almost felt normal. But maybe it's just psychological? After one pill? I guess I'll see how I feel tommorow. My doc has me on them indefinitely. He gave me a script for 30 pills and 2 refills and told me to take one very nite. So I guess he is going for the "help with burning" and not any kind of hidden bacteria. He probaly has never even heard of that theory and research, I bet. Not that he is not a good doc. Lori, I wish you could see my uro. He always asks "so what can I give you a script for today? Again, not cause he is a bad doc, just cause he is willing to let me try anything in hopes it will help. Then you could get your amoxicillin. Do you have to see Army docs? You cant go to anyone else? Well hopefully these antibiotic regimins will work for us and then you can use our success stories as backup to ask for it. Well goodnite everyone, Praying for pain free days for all of you.
Big Hugz :grouphug:
Danielle

[ICLori]

Hi, Dani, I am so glad you are feeling better!

It might not be just psychological. When I read Dr. C's, book, he talked about giving low doses of antibiotics for a long time (sometimes indefinately if the person had a real problem with chronic cystitis and couldn't get better without antibiotic help). He said that sometimes this was just enough to help the body fight the bacteria enough so that the bacteria no longer bothered the bladder or didn't bother it as much. Kind of gave a fighting edge to the body so to speak. He said that sort of thing works very well when the cystitis isn't acute - not a real bladder infection - but sort of a low-level, not quite a real infection but enough bacteria to still irritate the bladder, kind of thing.

Not sure if his theory is right or anything, just thought I'd mention it because I was reading about it yesterday and thought it was interesting.

Anyway, if it seems to keep helping you, and your doc doesn't see any reason for you not to keep taking it, then it seems like it's a good idea to just keep taking it!

I am so glad you are feeling better today and I hope the improvement continues and that you feel better and better!

Blessings, Lori
P.S. I could go to a civilian doctor but I'd have to pay entirely out of pocket - probably hundreds of dollars I am assuming for a couple of visits, maybe more money than that - and that's hard to afford on our budget.

[ICLori]

P.P.S. You know it's interesting that your doctor gave you three month's worth of antibiotics to try, because that's what Dr. C. says in his book, he gives three month's worth to see if it helps or not! I thought that was an interesting coincidence.

Blessings, Lori

[sylvieCT]

I have always felt, for me, that there was some connection between my husband and the relpases. I even joked and told him that he was giving me something!! Although, we were checked for everthing and came up clear. Still, it has been nagging me. It is certainly worth looking into. Thanks for sharing.

[holles]

just another tip here. my doc had me do the treatment (his wife is a uro, so he let me read the whole 4-page article---- boring to me lol), but there was a part where they said they gave the women vaginal antimicrobials also. they felt the vagina could harbor bacteria as well. so i used gynezole while on the treatment.

i didn't start to notice much difference until the last week. and then when i had my period, i had no bladder problems at all. that proved to me it worked.

good luck! it's amazing how this easy treatment can change your life if it works.

btw, i never saw pics of my cystoscopies, but my gyn showed me pics in the urology journal of some of the patients before and after doxy. he said mine looked like the before pic in addition to being very "angry-looking." so the white patches are there, but i think a trained eye would notice them better than we would. i certainly don't know what a healthy bladder is supposed to look like. i thought the after-pic was the bad one. lol. :loco:

[Dani72]

Hi guys,
Just wanted to let you know how I am doing on the doxy. Today I have had no pain, no urgency and no frequency. :woohoo: No burning up until now, and even that is minimal. Dawn, how are you doing? Please let me know. Lori I am writing this for you too, to take to your doctor, to sway him to put you on the amoxicillin. I know how desperatly you want to go back on it. When is the next time you see him? Hope you all are having pain free days!!!
Big Hugz,
Danielle
P.S. Only thing I am noticing is I think I am starting to get a yeast infection. :rolleyes:

[windwalker]

Hi Danielle and all, I had a bad cpl days, I know why tho. Friday nite went to a friends house, she has two dogs and two cats, mind you her house is spotless but I am allergic to cats, so I started this horrible hacking spell, felt asmatic but never been told I have asthma, anyways, I was coughing VERY hard, my abs were hurting so I believe all that force caused my bladder yesterday to give me the frequency/urgency, then from 6:30 till ohhh, 20 min ago, I had the burning. I am hoping the doxy is doing something even though I felt this, I felt fine most of the day, just this evening. I have noticed last week, my burning and frequency was going down considerably until the coughing spell from hades. I am ok now tho. Just sitting on my icepack watching Extreme Makeover Home Edition, and typing here, quite the multitasker lol ;) . Its good to have a "feel good" show on!!! Take it easy all and talk to ya later!!!!!! Danielle glad you felt better, great feeling eh?
Dawn

[ICLori]

Hi, sorry you are feeling bad right now. I find that on antibiotics (so far) I have times when I am better and times when the symptoms come back again. But for the most part, most of the time I am comfortable now which is very nice.

I think that it just takes a really long time for the bladder to heal. Or maybe we will always have oversensitive bladders, even after the bacteria are gone. I don't know...I know that so far, I am feeling better most of the time, on antibiotics...so far so good...sounds like for the most part, you are feeling better too...

Blessings, Lori

[windwalker]

Hi Lori, yea, for the most part, feeling better, I am hoping its a "healing" process that I have to go through, that it just takes time for it to heal. We shall see, glad you are doing good.
Time to rest!!! Talk to u later!!!
Dawn

[Ginny]

IC Lori,
Thank you for posting that article. I copied it and just got it into the mail to my doctor. I asked him if I could try it. Husband is willing. Keep your fingers crossed.

Ginny

[ICLori]

I hope it works really well for everyone who tries it!

Blessings, Lori

[windwalker]

Hi all, wanted to let you know I finished my doxy, knock on wood, I feel better. I still get that urethral burn, but the urgency/frequency is down. I will know for sure in a few days. Gotta give it time. Hope you all are doing good. Take care!
Dawn

[ICLori]

Hi, Dawn, glad to hear you are better! I've had a bad couple of days for some reason but I've heard from others who have been on antibiotics long-term, that ups and downs are pretty normal and you just sort of gradually get better, that it can take months before you really feel completely well again.

I'm still hoping this will help me although I'm disappointed that I'm flaring again even with the medicine.

Blessings, Lori

[holles]

glad you're doing well. :) i'm dealing with some evil UTIs right now (real ones with bacteria and everything; that's new for me). but it's still easier to bear than an IC flare. i really feel the doxy worked for me. i guess only time will tell. doc said 3 months of no symptoms is a great success. good luck.

[Katrina]

Definatly hope for full and complete success for you! Glad you are better!

[windwalker]

I know even though I finished my doxy, it can take some time so I am not going to let the following get me down, just wanted to share what is happening. I worked out Sun. night, very VERY low impact, mainly some marching in place, small kicks, side to side steps and so on. Mind you, last time I flared from working out, it took until the next morning to hit and it didnt go away for a week. This time, I felt it two hours later, wasn't too bad, but it really hit me last night, but the worst of it was only for a few hours! Knock on wood, I feel ok today. I am going to take it real easy for the rest of the week, just doing small weights, nothing to jostle the bladder and go from there, I hope everyone is having a good week. :) Holly, hope the UTI thing is going away, amazing to actually have bacteria isnt it LOL ;). Lori, hope your flaring is subsiding. Take care!
Dawn

[ICLori]

Hi, Dawn! It sounds like the Doxy has made it so you don't flare as badly. That's sure better than nothing! But it could be that you will have to extra careful as you said for awhile.

It's easy to get depressed when you don't get cured all the way right away (I get that way anyway, I hope for too much) but sometimes it's good to just say, "okay, am I better than I was?" and then if the answer is "yes" you can feel encouraged.

Blessings, Lori

[windwalker]

Hi Lori, I totally agree, if I feel better than before, then its helped and well it definately did. :) Hope everyone is doing well. Take care!
Dawn

[Dani72]

Hi guys,
Dawn glad you are feeling better and your flares are not as bad and as long. Well it's been 2 weeks now and I have to honestly say I am better. I still have some burning off and on and some urgency/frequency off and on. Oh and some leaking. But I am better though, and usually around this time I start to feel really bad because it's time for my 3 month distention. Actually I was thinking of cancelling it, but to be on the safe side I'll have it done. I'ts scheduled for December 21st. Also, then I can ask my uro if my bladder looks any better, then I'll really know the doxy is working. Keep me updated Dawn. Hope everyone is having a pain free day!!!!!!!!!!
Big Hugz,
Danielle

[windwalker]

Hi Danielle, glad to hear u feel better. :) I still get some feelings in my bladder where I just have to go, but its not everyday. (knock on wood) ;) I am just hoping it stays this way or gets better. This is much more tolerable. Fill us in on if the doc says your bladder looks better after the distention. (((HUGS)))
Dawn

[Dani72]

I SURE WILL!!!! :smile tee