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Old 12-11-2008, 05:41 PM   #1
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jacke22 HB User
Could Interstitial Cystitis be an infection?

Has anyone had any luck curing their IC with antibiotics or naturally such as with herbs? If so, which? how? any recurrent flares?

I just don't buy that there is no cure, that the cause is unknown, or that it's a genetic autoimmune disease. That just sounds like laziness, and someone who couldn't care any less to look into the problem any farther.

I'll be seeing a urologist that believes in the existence of the lesser acknowledged UTI-causing bacteria such as Mycoplasma, Ureaplasma, Strept D, Enterococcus, Micrococcus. Doc said over the phone that he will treat me and my hubby with meds even if labs come back negative, because my symptoms are typical for mycoplasma or ureaplasma, and these bacteria are fastidious (very hard to find with common labs). Frustratingly, my first appointment isn't till new year's eve 2008. I'll be posting updates on my progress.

My symptoms are: whenever I drink coffee, orange juice, tomatoes, anything containing vinegar, citric acid, cranberry, I feel a burning zapping sensation in my bladder. When I pee it stings, but it goes away. What helps: foods that help alkalize the urine such as lemon water, dark greens, bread, milk, meats.

I think I have a good chance of recovery because I have acted quick and I haven't accepted "incurable" or "IC" as an answer to something that feels A LOT like an infection. All my cultures have come back negative, I never have a temp when I am seen, wbc are always up but they say that it could mean anything. So everyone has given up on me. This must be something I made up. It's all in my head. I've been sent home empty handed when I am symptomaticly in pain.

I am on the IC diet, avoiding anything that acidifies my urine. I am taking uva ursi leaf powder in hot water. seems to be helping in keeping the pins and needles sensation down, (when I take more than a quarter tsp I get nausea and headaches) in essence it's buying me time till I see my urologist in about THREE WEEKS!!!

If you have had success in completely curing your IC please let me know how you made it happen.

Thanks so much

Last edited by moderator2; 12-11-2008 at 07:49 PM. Reason: posted contact info

 
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Old 12-12-2008, 09:52 AM   #2
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Re: Could Interstitial Cystitis be an infection?

i am a 26 year old woman who has been living with the constant feeling of having to urinate. i've been dealing with it for a little less than 4 months. i have been losing my mind! but i seem to have finally found a cure! i have done A LOT of research online. my whole problem started with an actual UTI that was detectable in my urine on Aug 25th. after 1 week of antibiotics i still had mild symptoms, so i went back to the doctor for another urinalysis. this one came back negative for infection. ever since then i have been to multiple doctors and have had every test imaginable done, but they could find nothing wrong with me except for microscopic amounts of blood in my urine. anyway, i have found articles online that say my symptoms could be due to an infection of the paraurethral glands, or a bladder infection in which the bacteria have gone inside the bladder lining, and cannot be detected in a urine sample. the cure for either of these infections is a LONG course of tissue-penetrating antibiotics (as long as 8-12 weeks). so i tried bactrim and after 8 days, my bladder-symptoms were completely gone. unfortunately, that same day i also had an allergic reaction this the antibiotic which caused a rash all over my body & made me the itchiest i've ever been in my life. so i stopped taking that obviously, and i am now on doxycycline. this is the 3rd day i've been on it, and i am feeling almost completely better. i think if i can just stay on this antibiotic for a long time without having an allergic reaction, i will be cured. so my advice is to at least try a long course of bactrim, doxycycline, cipro, or some other tissue-penetrating antibiotic before trying anything else--even if there is no infection detectable in your urine. i have had doctors diagnose me with interstitial cystitis, tell me it's all in my head, etc. they are all morons. try a long course of antibiotics! it just may make the problem go away! goodluck.

 
Old 12-26-2008, 05:26 PM   #3
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aleet7 HB Useraleet7 HB Useraleet7 HB Useraleet7 HB User
Re: Could Interstitial Cystitis be an infection?

I have IC also. I was taking Elmiron as suggested and it caused my hair to thin and stomach issues. I have since stopped taking it and started on a natural remedy path to getting well. I take marshmallow root drops in my water(very soothing for burning). I also take Echinachea with Goldenseal for a week then none the next week and so on. I take Azo standard for burning occasionally. I am still on the IC diet but I am feeling IC free at the time. At bedtime I take 50 mg of Benadryl because I don't sleep well and it helps with IC pain. I'm reading books on healing IC also which give a lot of info on natural remedies. I've gone to a pelvic floor therapist for 3 months which has helped trememdously because I couldn't ride or drive a car without severe bladder pain from the motion of the car engine. I now have mimimal to no pain while driving or riding. The pelvic floor therapy was very helpful.
Good Luck!
Aleet7

 
Old 12-26-2008, 07:01 PM   #4
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Silas1066 HB User
Re: Could Interstitial Cystitis be an infection?

My sister suffered from IC and was "cured" after taking the antihistamine Vistaril for a few months. She had IC BAD! Lost 30 pounds, almost went on disability, etc.

Now she doesn't even think about it.

Urinary problems run in the family--I have had problems since 2002. Prostatitis? CPPS? IC? Who knows. When I have a flare up, I quit caffeine and alcohol and wait it out. Symptoms usually subside after a month or so, although I still urinate a lot.

I suspect that the issue is autoimmune--a kind of inflammatory disorder of some kind.

 
Old 12-27-2008, 12:16 PM   #5
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kris447 HB User
Re: Could Interstitial Cystitis be an infection?

Well, unfortunately after feeling almost completely better for 10 days, my symptoms have come back. I really thought the antibiotics I was on, were working, but maybe not since I now am feeling miserable again. I had a UTI that started Aug 25th. 1 week of a herbal UTI remedy followed by 1 week of Nitrofurantoin antibiotic eliminated the signs of infection from my urine, but did not completely get rid of my symptoms. Since then I have tried more antibiotics (Cipro, Bactrim, Doxycycline), and 2 and 1/2 months of avoiding bladder-irritating foods, with no permanent relief. It will really improve for a week or 10 days. I'll think I'm finally going to be healthy again, and then my symptoms will get worse. I have had numerous tests done including: urine cultures, a bladder ultrasound, pelvic exams, a CT-scan, a cystoscopy, a MRI, a vaginal culture, and blood work. All tests have found nothing abnormal except for E Coli in my urine with the initial UTI on Aug 25th, blood in 2 of my urine samples since then, a sensitive nerve ending found during my pelvic exam, and dilated pelvic veins found by my MRI. Besides antibiotics, I have also tried detrol LA, flomax, hydroxyzine (antihistamine), and UTIRA-C (urinary antispasmodic/analgesic). Nothing helps. I have tried herbal remedies including the initial week of "bladder comfort" herbal pills, marshmallow leaf and corsilk tea, shatavari root, cod liver oil, probiotics, hyaluronic acid, chondroitin, quercetin, bromelain, and colostrum. Initially when I started some of these extra supplements, I think I took too many & they made me sick to my stomach. So I have just started taking them again yesterday but only 1 pill a day of hyaluronic acid, chondroitin, quercetin, bromelain & colostrum. I am running out of options, ideas, and hope. The urologist I have been seeing wants to put me on an antidepressant and Elmiron if i do not get better by Jan 15th. The urogynecologist I have been seeing wants to do another cystoscopy on me Jan 22nd and then possibly put me on Elmiron. I am worried that Elmiron may not help and will also make my hair fall out. I am only 26 years old, and I was perfectly healthy before I got the UTI on Aug 25th. Has anyone else had a UTI that led to interstitial cystitis? If so, what medications helped if any? Is this something I will have to live with for the rest of my life? Or is there any hope that it will go away and not come back? My symptoms are that I feel like I have to pee all the time--like my bladder is always full. And sometimes I get shooting or jabbing pains in my urethra, especially right after I pee. Anyone else have similar symptoms, or have IC develop after a UTI? I'm miserable! I want my life back!

 
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Old 01-09-2009, 08:33 AM   #6
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Re: Could Interstitial Cystitis be an infection?

I was diagnosed with Interstitial Cystitis about 8 years ago. All of my life I have had problems with my bladder. I took Elmiron for a long while and the only side effect taht I noticed with additional easy bruising. I also have an autoimmune disorder called Mixed Connective Tissue Disorder and I already bruise easily. I was just recently told that Interstitial Cystitis was a type of a autoimmune disorder. When I am checked for a UTI I always have blood and protein. Usually a round of antibiotics does the trick but sometimes I have to do a few rounds of them. I don't take the Elmiron anymore because it is very expensive and I don't have insurance at the present time. Your symptoms sound just like mine except that I do have periods of inactivity. A few years ago it was non-stop and it drove me crazy. Good luck and I would give the Elmiron a try, it worked for me and I was able to stop taking it and seemed to be in some type of remission. I still have flares now and again but like I said the antibiotics seem to do the trick. One thing that really helps me is peridium or peridium plus. It stops the spasms. It is better than any pain pill out there. Your uroligist should prescribe it for you. It isn't a narcotic or anything. I really don't know what it is but it is the medicine that turns your urine orange. You may have already tried it. I hope you feel better soon!!!

 
Old 01-10-2009, 03:30 AM   #7
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Re: Could Interstitial Cystitis be an infection?

IC symptoms? Been there, done that.
I had had NO IC symptoms until I came down with a UTI 7 years ago. I think I know think I may have found an answer to the cause of the IC symptoms that makes sense. I was consuming huge amounts of acidic drinks in an attempt to kill the UTI bacteria. Now, today, I believe that my bladder has been damaged and the flare ups come from eating and drinking acidic foods. Coffee is the worst.
I believe this because now when I start to have a flare up I will drink a little baking soda in water and within 15 minutes the bladder pain is gone.
Is anyone else seeing this happen?

Last edited by SnowBunny2020; 01-10-2009 at 09:30 AM. Reason: New Information

 
Old 07-17-2012, 06:40 PM   #8
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Re: Could Interstitial Cystitis be an infection?

"Update::::: By now, I feel pretty foolish with all Ive gone thru these last 4 months with this horrible IC with natural remedies that didnt work for me, when all I had to do was take antibiotics, and Id be cured.

However, I had already tried 2 rounds of Cipro, and macrobid, and then started testing negative on all urine cultures, and being sent home empty handed, in horrible, horrible, horrible, crippling pain, feeling like I still have a bladder infection.

After finishing the z pack, I was almost all better, But 2 days later, symptoms returned full force and the nitemare was starting all over again for me. However, I knew the symptoms would return, and I couldnt get an appointment with my urologist, (which was 2 and a half hours away by the way, and I dont have a car) for another month. She wouldnt precscribe me another z pack, unless I retested again for the Ureaplasma. I would have to wait a month. Get retested, and wait an additional 4 days, then get more antibiotics, and hopefully be cured, but I knew it was impossible to wait the long, and it seemed horribly cruel, when I felt so close to a cure. Id have to start all over.

From the research Ive done on Ureaplasma, you almost always have to take more than one round of strong antibiotics to cure it, and some people take low dose long term antibiotics, from months to years to eradicate it. I saw a long painful road ahead, and I decided, getting Genital Herpes would have been a better fate for me than this, as at least with herpes u get periods of respite and you can SOMETIMES have sex, if your not having an outbreak. I was ready to Die.

I got the numbers of several Urologists closer to my area, about four. NONE of them tested for Ureaplasma, or even heard of it. I asked if they would do a test, they said no. You see. Many Urologist do not believe or even acknowledge the role Ureaplasma plays in IC, since 70% of the population carries this in their genital, bladder tracts without any problems. The community is split on the issue.

Ive been doing alot of research on this little bug, Ureaplasma. Its getting more and more attention, as more and more people are having problems with vulvodynia, and IC. Like I said, its considered sexually transmitted (but not), as we arent born with it, we get it thru sex.

A good gynecologist will also test for ureaplasma if you are having problems becoming pregnant, or have a history of miscarriages, or early deliveries. There's alot of talk about it on infertility boards on the net. The test is expensive. And the cure requires the use of long term antibiotics. Many doctors are hesitant to do that, these days.

As there is more and more hype about the overuse of antibiotics. Especially long term.

So I panicked, and I took matters in my own hands. I knew I needed more antibiotics. I had a reoccuring sinus infection for months. I made an appointment with my family doctor, and explained the situation, plus I made great emphasis on my sinus infection, (which had actually gotten better) but I wanted to make myself sound really sick (hammed it up), and she gave me Augmentin. A 10 day, supply and guess what. It is the third day, and I feel 95% awesomeness.

I then made a few more calls, and found out, I can get my doctor (the one that actually believes in Ureaplasma) to fax over an order to my family doctor or lab of my choice to do the test and everything will be gravy. So Im gonna test again for it, a week after I finish the Augmentin. Its also interesting to note that after researching IC, unrelentingly, for the last 4 months, and visiting, every IC website, and healthboard on the planet, and hearing people talk, Augmentin is considered one of the successful antibiotics for IC.

Thers only 3 that work against IC, only three.

Zinthromax (z Pack)

Doxicycline

Augmentin.

From what I read, its hard, hard, hard to cure. Harder than any STD. But its not incurable. It usually takes months to eradicate it.

many women just live with the pain, and take steroids, pain killers, and ANTIDEPRESSANTS. Isnt that sad?? Thats part of the protocol for IC patients. They give you an antidressant too, to cope with your life being over!!

I know on a gut level, this was some kind of elusive, hidden bacteria, embedded deep inside my bladder. Most people develop IC after a bad bladder infection. The pain lasts for years, YEARS. and its almost impossible to get a Urologist to help or even hear you.

I prayed to God to help me.

Its a miracle, and I will never doubt his presense and his ability to heal me again. Its a miracle the first Urologist I saw helped me, and was cutting edge enough to do this test."




Yes. In my case it was most def an infection, and Ive had this for 2 years.
Its an UNDETECTABLE infection. Ureaplasma mycoplasma is very hard, and very elusive to detect, this is why it FEELS like you have a bladder infection, but they tell you, you dont cuz everything comes up negative. It requires STRONG, and Long term antibiotic treatment to cure it. Atleast 3 months. Its very hard to find a doctor that will do that for you, as they are incresingly hostile against overuse of antibiotics. But thats how this is cured, otherwise, it will come back. you have to eradicate it completely.
Ive done SOOO much research on this, and Ive come to the conclusion interstitial cystitus is caused by a small, hard to kill, undectable bacteria. Thats why 50% of IC patients get a cure as soon as they get a diagnosis and treatment of ureaplasma, and almost always takes more than one round to kill it.
Cheers

 
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Old 08-16-2012, 12:04 PM   #9
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Re: Could Interstitial Cystitis be an infection?

Lavorse,

Thank you so much for your very helpful post! I am in the same boat as you are and am wondering how you are doing and if the continued antibiotic therapy has been useful?

In November, 9 months ago, I woke up with severe UTI symptoms, however nothing showed up on a routine culture except for WBC's and Nitrites which would indicate some sort of UTI. However, because nothing would grow during the cultures, I was told it was all in my head and that perhaps I had beginning stages of IC. I just turned 22, and felt like I was too young to develop IC compared to the statistics and I have had a perfectly healthy bladder up until now. A few months ago my former urologist performed a cystoscopy with hydro to look for IC and my bladder appeared normal with a bit of inflammation but was not consistent with an IC bladder. So my uro told me I did not have IC but that I just needed to give myself more time to heal from the infection. So I wait, with continuous bladder burning, frequency and dysuria. In my heart I believed I had an infection, but not one single doctor would believe me or test me for Ureaplasma or Mycoplasma.

FINALLY I was referred to an infectious disease doctor at my local hospital, and he tested me for Ureaplasma last month via a PCR test that was sent to the may clinic. SURE ENOUGH it was positive! I didn't know whether or not to whoop for joy or cry. I finally had an answer. SO my question is, this Ureaplasma has been in my body for almost a year now...I am guessing treatment will need to be long term? The ID doc put me on one month of Doxy which has helped a small amount but not nearly enough. I have also read about resistant strains and the use of another antibiotic such as Moxifloxin or other stronger antibiotics treating resistant strains.

SO I am wondering how you are feeling? And how long you were on antibiotic therapy? This Ureaplasma infection has been life changing and completely painful...I am sure you all know how annoying and frustrating it is to have the UTI that just won't go away...and doesn't culture out any "normal" bacteria. This forum has been so helpful!

Please let me know! Also, just wanted to say, if anyone is having UTI like symptoms where NOTHING is culturing out, BEG and DEMAND that your doctors order a PCR test for Ureaplasma/Mycoplasma/Chlamydia because these infections are REAL and can cause damage and unnecessary pain and suffering!!!!

Demand to get tested, even if Doctor's say that can't be the source of your pain, trust me, it very well could be!!!

 
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