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Old 03-12-2010, 06:30 PM   #16
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Re: Can a UTI cause interstitial cystitis?

Interesting... I know colostrum has antibodies in it. How is it supposed to help and where do you get it? My symptoms don't respond to food. even a margarita didn't make me feel worse

 
Old 03-12-2010, 07:01 PM   #17
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Re: Can a UTI cause interstitial cystitis?

Bromelain is a plant enzyme right? I took those during pregnancy and it REALLY seemed to help some mild indigestion issues I was having. Thats a good idea! Let me know if upping the quercetin works! I'm taking some right now too.

My symptoms change all the time too, like you. sometimes the bladder area does hurt or feel full all the time like you mentioned, but the urgency/frequency/burning definitely overshadow it. I pretty much always feel burning and I feel shooting pains and a weird raw feeling in my urethra after I pee. Horrible! Some days I am really, really upset about this. I really want to know the cause.

You said you were pretty darn sure you dont have an infection. I'm still not so sure about me. I just had a bad e. coli one, I was pregnant, tired, and had a miscarriage days before this all started. I didn't even have a D&C so I think wearing the pads and a couple of long car rides couldn't have helped anything. < edited >

this is the first time I've heard someone give a sound, logical, scientific explanation as to why it could be bacteria-- and why typically prescribed antibiotics dont do the job--, so I'm interested. If it really is just a "randomly dysfuntional bladder wall" or whatever, I'm banking on the cystoprotek to help me out. I also am making an appointment with a friend who knows chinese medicine. other than that... sleep and sometimes cardio exercise help a little. and thats it. food seems to have no bearing. I dont think I experience "flares" like most people do. you probably know what mean... lol. good luck to you too!!! Thanks for the info!!!

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Old 03-13-2010, 12:08 PM   #18
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Re: Can a UTI cause interstitial cystitis?

Amber... I have found that my symptoms get much worse when it seems like my hormones are out of whack. So you could be onto something with the low DHEA. I'm currently on symplex-f to balance my hormone levels & it has helped tremendously with the hair loss, mood swings, and irregular menstrual cycles I was experiencing after stopping birth control pills.

Laura... You can buy colostrum online. I have a bottle of it, but I haven't been taking it. I tried it for a few days back when this whole problem began for me & I felt much worse. I only tried it for 3 days though, and feeling worse could have had absolutely nothing to do with the colostrum.

Yes, bromelain is a plant enzyme. It aids in digestion, and it's supposed to help the quercetin to be absorbed. I've only been on the double dose of quercetin for a few days now. But I have been feeling pretty darn good. Too soon to tell if it's from the quercetin, but I'll let you know if I continue to feel good.

I get the same "raw" feeling in my urethra too. And I know how upsetting this mystery disease is! Not knowing what's wrong is the worst part of it. I'd be willing to do anything to fix this problem, but without knowing what's wrong, it's impossible to know how to fix it. Only thing to do is to keep trying different thngs & hope to get lucky & find something that helps. Some days I've been so sad and depressed about it that I don't even want to get out of bed. But then on the opposite end of things, when I'm having a good day & feeling fantastic, I'm so happy & I just want to live life to the fullest. The ups and downs of my symptoms are completely tied to my mental state.

Yes, I am pretty sure I don't have an infection. I took 12 weeks of doxycycline antibiotic with no luck. Thanks for sharing that article. I looked up doxycycline after reading that. It says it's effective against several strains of both gram negative and gram positive bacteria, including streptococcus pneumoniae. I couldn't find anything about its effectiveness against other stroptococcus species though. So it seems possible that this could still be an infection that doxycycline was not effective against. I'll be very anxious to hear what your broth culture shows, what antibiotic the doc suggests you try, & if it helps you at all. Please keep me updated. This whole problem did start with an E coli UTI for me, so it's conceivable that an infection of some other bacteria occurred at the same time.

I'm so sorry to hear that you had a miscarriage right before this all happened. I can't imagine how tough all of this has been on you. I've had to deal with some stressful things lately, but nothing like that.

The idea of trying Chinese medicine interests me. I've thought of trying acupuncture, but it's so expensive. My health insurance of course wouldn't pay for it, just like they don't pay for the naturopathic doctor I've been going to. Just like you, sleep and cardio exercise seem to help me too. My symptoms are very mild or non-existent while I'm sleeping. And if I go for a run or something like that, my symptoms seem to disappear temporarily too. But usually when the run is over, they come right back. So strange. Food makes no difference though, and I don't feel like I have "flares" either. For me, it's more like I have good days & bad days.

Anyway, hang in there. And keep me updated.

Last edited by hb-mod; 03-14-2010 at 03:52 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 03-17-2010, 11:59 AM   #19
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Re: Can a UTI cause interstitial cystitis?

Hi Laura. I'm really thinking about having a urine broth culture done now. I researched it a lot after you mentioned it, and for $129 it seems like it would be something to try, just to see if they find anything. If they do, I'll have to decide which doctor I want to work with for the antibiotic therapy. I could see my current naturopathic doctor (but she's awfully expensive), or I could see if I could find a doctor covered by my new Kaiser Permanente insurance that would work with me on this. Or a 3rd option would be to work with Ruth Kriz over the phone. I was wondering if you know how much Ruth charges? Are you still thinking of having the urine broth culture and working with Ruth too? Thanks.

 
Old 03-17-2010, 10:26 PM   #20
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Re: Can a UTI cause interstitial cystitis?

Krystin,

I have now been on glucosamine, msm, prelief, bladder q and bovine colostrum - i am getting better and better I follow the diet fairly well but with the prelief have been able to eat certain things i shouldn't! had marmalade today! still take prelief even if eating right....i have found that the "wrong" drinks are a killer no matter what i do but food not so much for me... i did high doses of antibiotics and still wound up very unwell.... for me it just makes sense to work with the body and rebuild... i am going to get some chondroitin - can get with glucosamine and msm in tablets also - but have been having msm powder. Oh, am taking DHEA homeopathically also - since using the msm my energy levels have gone thru the roof! I am more active, even exercising! Cleaning the house and able to focus on my life again. I still get pain after urinating but it is gone pretty quickly.

I read on one of the other posts that a lady who has lived with this for years made the decision not to let it ruin her life - now that i'm feeling a lot better i feel this too... we are organic beings and it makes sense to repair and heal... for me the antibiotics just feel like they are causing more probs than they are worth...

i also alkalinise my body once every 2 or 3 days and take a probiotic every day... there are so many people that have gone into remission - positive thinking is a very important part of this - i am a hypnotherapist and can truly tell you that how you think about something is so very crucial Believe me, it would be nice to have this gone but i'm feeling like i can manage my life and i also believe that this will heal completely, and there will be a time when it was all just a bad dream!

I have over come many illness thru natural means and there is so much research on how condroitin and msm can help the bladder to heal... why not try it??? might even be less than the $129 and if it doesn't give you relief (make sure you are eating and drinking right for your bladder too) then go down the path of the meds...i can't tell you how many postings i have read of people taking drug after drug and still no relief! yet there are many that choose a natural approach and get incredible results! If a drug like Elmiron can help then why not use the natural means and do the same thing???

I'm waiting for my Pregnenolone to arrive from the States, i live in Australia, and then i will be able to produce the correct hormone levels - will get blood test in a month to see if any difference - all i know now is that i feel like there is a wonderful life worth living - even sex is good again! Still have around 10-20% symptoms but i can manage that and has only been a week or so on my regime

Amber xox

 
Old 03-17-2010, 10:31 PM   #21
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Re: Can a UTI cause interstitial cystitis?

hey guys,

just wanted to mention that i haven't been diagnosed as having ic.... i just know from all the research i have done for vulvodynia, urethra probs and bladder and ic symptoms that what i'm using should pretty much work for all of them I truly hope that whatever path you take works for you - this has got to be one of the worse health issues to struggle with.... but.... what has given me peace is the fact that no one wants to be "struck down" with something - so when i'm feeling sorry for myself i try to have acceptance and understand that those with MS or Parkinsons didn't ask for their disease either.... and i might actually be able to heal mine....as far as i know, they can't

Amber xox

 
Old 03-18-2010, 12:16 PM   #22
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by kristyn377 View Post
Hi Laura. I'm really thinking about having a urine broth culture done now. I researched it a lot after you mentioned it, and for $129 it seems like it would be something to try, just to see if they find anything. If they do, I'll have to decide which doctor I want to work with for the antibiotic therapy. I could see my current naturopathic doctor (but she's awfully expensive), or I could see if I could find a doctor covered by my new Kaiser Permanente insurance that would work with me on this. Or a 3rd option would be to work with Ruth Kriz over the phone. I was wondering if you know how much Ruth charges? Are you still thinking of having the urine broth culture and working with Ruth too? Thanks.
Hi Kristyn, Yes, I'm still planning on working with Ruth. I think her new patient info says she charges 275 for a 2-hour phone session, and she can give you some kind of receipt you can bill to your insurance if they cover it. Yeah, I'm still waiting to have a culture done. my phone appointment is in April so it will be a couple of weeks. They haven't sent any info on how I should go about doing the culture yet.

I also wanted to mention, I read Ruth's IC story and after having IC for awhile she developed food allergies just like you. She thinks it's because her immune system was shot from battling bacteria for so long. Interesting!! I'm going to my first chinese med appt today, and I'm going to tell her that I think this is bacteria-related because antibiotics are the only thing that helps me. I'll tell you if anything she recommends works for me at all!!!

 
Old 03-19-2010, 12:48 PM   #23
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Re: Can a UTI cause interstitial cystitis?

hi amber. i'm glad you've found a plan that is working for you! unfortunately, food and drinks have nothing to do with my symptoms. i can have tomato soup, spaghetti sauce, and wash it all down with orange juice & feel fine. or i can have something totally bland and "IC-friendly" and feel like crap.

i've also done 12 weeks on an antibiotic, and i'm still having symptoms. but i'm beginning to think it's possible that i still have a bacterial infection to which the antibiotics were not effective. that's why i'm leaning towards having the urine broth culture done, just to see if it finds anything & if so, which antibiotics would be effective.

i've done the glucosamine, chondroitin, and msm in separate supplements for several months, with no improvement. i'm currently taking osteo-biflex (and have been for over a year). this is what my urologist recommended, and it contains these things. but still it doesn't seem to be helping me at all.

i've done a whole 6 weeks of an alkalizing diet, and measured the pH of my urine everytime i went. i was consistently very alkaline, but still felt like crap. i also take 2 probiotics daily.

you're very right about the positive attitude helping. it's hard sometimes though! but it always helps to try to stay positive.

anyway, i'm thinking of just paying the $129 to get the urine broth culture done. no diets or supplements have given me any relief. there has to be something else going on. and like laura said in an earlier post, i shouldn't ignore the fact that my symptoms didn't start until i got a diagnosed UTI. so i definitely had an infection with at least E coli bacteria when this all began.

we're all different. but i hope that the solution you've found keeps helping you, and that you make a full recovery. good luck!

Last edited by hb-mod; 03-20-2010 at 12:55 AM. Reason: Removed Quote. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 03-19-2010, 01:00 PM   #24
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Re: Can a UTI cause interstitial cystitis?

hi laura. no, my kaiser permanente insurance will only cover kaiser permanente docs. it's very limited, and i hate it. $275 for a 2-hour session is a lot. i think i'll try to see if i can find a doc my insurance will cover that will help me. if not, i'm sure my naturopathic doc will help me for $75 a visit.

you can actually have the urine broth culture done all by yourself. you don't need a doctor. < edited >

that's VERY interesting that ruth's food allergies developed after having IC too. i believe my food allergies are either the result of my immune system fighting EVERYTHING it finds now, beacuse it knows something is wrong, OR it could be a side-effect of having been on so many antibiotics. my digestive system is very sensitive and antibiotics give me bad side-effects. i've been taking probiotics though, and trying to avoid the foods i know i'm allergic to. anyway, i'm a bit scared about trying antibiotic therapy if the broth culture shows anything since i seem to react badly to several antibiotics. but just having the culture done first to see if anything is there will be my first step. then i will worry about what to do next if they find anything.

good luck with the chinese medicine, and keep me updated!

Last edited by hb-mod; 03-20-2010 at 12:57 AM. Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!

 
Old 03-25-2010, 11:40 PM   #25
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Re: Can a UTI cause interstitial cystitis?

How is it going kristyn. I've had IC for about 8 months now. I am a 20 year old male. IC is rarely found in males and especially ones at my age. I'm not gonna lie, I'm pretty tough when it comes to pain but sometimes these pains make me feel like I'm being tortured. I definitely know what your going through and it sucks pretty bad at times. Its funny how I was diagnosed with IC though. I had been fine all my life, no problems whatsoever. But about 10 months back I began taking a body cleanser. It worked great at first until one night I couldn't stop going to the bathroom to urinate. I went to the doctor and was put on some medication for UTI but the pains kept getting worse. So I finally went to a urologist and got some test done and in that same day he coined with me IC. The cleanser that I had been taking had such a high level of potassium it ate away the lining in my bladder. God did it depress me. I've been having to change my whole life style over the past months and it's been pretty hard but... it's been well worth it. I've found that drinking water is a key way of relieving pain. STAY WAY from carbonated drinks, coffee, alcohol, etc. Follow the IC diet and it can work miracles. I have also been on the medicine Elmiron for the past 2 months and I can already tell a big change. If the pain is really annoying you at times though drink a glass of water with a teaspoon of baking soda. This can reduce the acid in your bladder. Another suggestion is try taking the a pill called UTRONA-C which numbs the bladder. One last thing is if you can't resist a food that you know will flare you up take a pill called prelief. I never liked taking pills but these can really help out. I know having to make such a big change can be overwhelming but if I can do it I know anyone else can so don't give up. Hope everything starts going better for ya. Sorry if this post is late.

 
Old 04-10-2010, 12:08 PM   #26
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Re: Can a UTI cause interstitial cystitis?

My story in brief: Last fall I thought I had a UTI. Instead of taking antibiotics, I tried natural supplements, cranberry juice, etc. I had two urine tests in about a month long period. First one, inconclusive because the sample was too small and diluted. Second one was near the end and no bacteria was found. So it was never confirmed, then it pretty much went away. EXCEPT whenever I would eat tomatoes, my frequency to urinate would increase. About two weeks ago, the symptoms came back. Mainly, just a need to urinate all the time. My urine test was normal.

I feel extremely upset thinking that if I did originally have a UTI that I let it go too long and it caused IC. I blame myself for this and I feel horrible about it. What if I just would have taken antibiotics right away and none of this would have happened.

Since I can't confirm that it was an UTI, I am only left wondering.

 
Old 04-10-2010, 12:19 PM   #27
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by Nate601 View Post
How is it going kristyn. I've had IC for about 8 months now. I am a 20 year old male. IC is rarely found in males and especially ones at my age. I'm not gonna lie, I'm pretty tough when it comes to pain but sometimes these pains make me feel like I'm being tortured. I definitely know what your going through and it sucks pretty bad at times. Its funny how I was diagnosed with IC though. I had been fine all my life, no problems whatsoever. But about 10 months back I began taking a body cleanser. It worked great at first until one night I couldn't stop going to the bathroom to urinate. I went to the doctor and was put on some medication for UTI but the pains kept getting worse. So I finally went to a urologist and got some test done and in that same day he coined with me IC. The cleanser that I had been taking had such a high level of potassium it ate away the lining in my bladder. God did it depress me. I've been having to change my whole life style over the past months and it's been pretty hard but... it's been well worth it. I've found that drinking water is a key way of relieving pain. STAY WAY from carbonated drinks, coffee, alcohol, etc. Follow the IC diet and it can work miracles. I have also been on the medicine Elmiron for the past 2 months and I can already tell a big change. If the pain is really annoying you at times though drink a glass of water with a teaspoon of baking soda. This can reduce the acid in your bladder. Another suggestion is try taking the a pill called UTRONA-C which numbs the bladder. One last thing is if you can't resist a food that you know will flare you up take a pill called prelief. I never liked taking pills but these can really help out. I know having to make such a big change can be overwhelming but if I can do it I know anyone else can so don't give up. Hope everything starts going better for ya. Sorry if this post is late.
Nate,

Your post was quite uplifting. I'm glad to see your optimism and how well you are managing your IC. I'm at the beginning of my diagnosis and things certainly seem bleak.

 
Old 04-10-2010, 03:44 PM   #28
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Re: Can a UTI cause interstitial cystitis?

I have fibromyalgia, and one of the problems with this condition is occasional bouts of IC. It is a miserable condition that makes me want to bang my head against a wall. The flares last 4-6 months and then mysteriously leave until the next flare (yuck!). Are you avoiding all acidic-type foods (cranberries, orange juice, cola, coffee, tomatoes, tobacco, etc)? Have you tried taking a half teaspoon of baking soda in six ounces of water three times a day to neutralize acid in urine? Have you tried taking "Prelief"?

Has your doctor explored the possibility of urine crystals which are irritating the lower end of your bladder and uretha? The crystals act like sandpaper and irritate the bottom of your bladder where they rest until urination, then they do a double duty of irritating the uretha as you void. This is what happens in my case.

Peace,
Kirstee

 
Old 04-11-2010, 10:33 AM   #29
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Re: Can a UTI cause interstitial cystitis?

Hey guys. Sorry for my late reply, but life has been crazy.

It seems quite a few of us got into this mess when we began taking natural UTI remedies or cleansers of some type (greenredhead & Nate). I've always wondered if any of this would have happened to me if I had just taken antibiotics on day 1 of my UTI instead of trying the natural cure. Maybe the infection would have gone away immediately, and I wouldn't have these lingering symptoms. But blaming ourselves isn't going to do us any good.

And anyway, it's too late for that. It's been 20 months now since my infection. I'm happy to say that lately my symptoms have been pretty mild most of the time. Maybe it's the larger dose of quercetin I've been taking lately (2000mg/day, along with bromelain)? I don't really know for sure. But I just managed to go on an 8-day vacation to Mexico and really enjoy my vacation with extremely mild to almost non-existent urinary symptoms the entire time. It was fantastic.

Yes, I have tried the "IC diet", UTIRA-C, baking soda in water, and prelief to alleviate or prevent symptoms. All of these things did absolutely nothing for me. I'm happy to hear that they have helped some of you, but for me, diet and these other things make no difference in my symptoms. Mine seem to be more hormonally-related. It's strange. And I'm not even sure if my bladder is the actual problem anymore, as it seems to be lower than that... like it's my urethra or the glands down there.

I know I don't have urine crystals or anything like that. They did find crystals in my urine 1 time, but it was when I was on an antibiotic that caused urine crystals to form.

Anyway, I hope all of you are finding some relief. I will keep you updated with my progress.

 
Old 04-13-2010, 08:57 PM   #30
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Re: Can a UTI cause interstitial cystitis?

Hey guys,

I just learned I might have Lyme or co-Lyme disease. I still need to get test results back, but I have certainly been bitten by ticks a few times. Two of them were embedded in my skin when I was in Arkansas. Apparently nymph ticks which are very tiny can pass the diseases as well, without you knowing you've been bitten. I have been an avid hiker/camper for my whole life. There are several other diseases that can accompany Lyme, so it may take me awhile to figure out what's going on and how to treat it.

The miscarriage could have weakened my immune system enough to allow the Lyme to manifest itself, if that's what is going on. I began to get more cold/canker sores about 2 weeks before my IC symptoms started, which definitely suggests immune system strain. More importantly this Lyme explanation fits why cipro antibiotics helped me so much: they kill off bartonella!!! I still have a lot more to learn.

Krystin- that's so awesome you had a great vacation! SO glad you aren't suffering.

Kristee- from what my doctor said, Lyme or co-Lyme can cause bouts of fibromyalgia, too. Maybe you have Lyme?

Nate- it's great that you have figured out what causes and what helps your IC. You might want to try the Cystoprotek supplement. It seems great for people with wounded bladders. Have you heard of it?

Still haven't gotten my broth culture results yet, but any day now.

 
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