For those that think IC is bacterial

[massagedoula]

There is yet another study that shows no sign of bacteria in IC bladders. I get frustrated when people out there think that ALL IC comes from some sort of bacteria. I think that some may, but not all. I personally have been tested for bacteria in all ways possible, and it never shows anything. (Except the broth culture, but when I then requested a cathed sample to look for Enterococcus from my uro, it came back totally negative, with not even one little colony found...) Plus all tests for occult organisms like Mycoplasma, Ureaplasma, and bladder TB all come back negative as well.
So, for me, I don't think it is caused by bacteria. Here is the article.

(Plus I have taken part in a study at my local university hospital here in WA which is doing the same exact thing...and everytime I go in I ask about it...that have not found any bacteria yet in the IC samples...)

J Urol. 2005 Jul;174(1):151-4. Related Articles, Links


Absence of bacterial and viral DNA in bladder biopsies from patients
with interstitial cystitis/chronic pelvic pain syndrome.

Al-Hadithi HN, Williams H, Hart CA, Frazer M, Adams EJ, Richmond DH,
Tincello DG.

Urogynaecology Department, Liverpool Women's Hospital, Medical
Microbiology Department, University of Liverpool, Liverpool, United
Kingdom.

PURPOSE: We examined bladder biopsies from women with interstitial
cystitis/chronic pelvic pain syndrome (IC/CPPS) for the presence of
bacterial and viral DNA sequences using polymerase chain reaction.
MATERIALS AND METHODS: Bladder biopsies were taken during cystoscopy
from patients under investigation for IC/CPPS, or controls
undergoing colposuspension for stress incontinence. Biopsies were
snap frozen to -70C. After DNA extraction, polymerase chain reaction
(PCR) using specific primers for the hypoxanthine-guanine
phosphoribosyl transferase gene confirmed the presence of human DNA.
PCR for bacterial and viral gene sequences was performed using
specific primers. Positive reactions were repeated to confirm the
signal. RESULTS: A total of 92 patients with IC/CPPS (12 who met the
National Institute of Diabetes and Digestive and Kidney Diseases
criteria and 80 who did not) and 91 controls were recruited. PCR for
hypoxanthine-guanine phosphoribosyl transferase gene was positive in
all samples. PCR for the 16S ribosomal RNA gene, as well as for
adenovirus, cytomegalovirus, herpes simplex virus types I and II,
human papillomavirus (all subtypes) and Chlamydia trachomatis were
negative in all samples. CONCLUSIONS: IC/CPPS is not associated with
persistence of viral and bacterial DNA in the bladder. A chronic
infective etiology for the condition is excluded by these findings.

PMID: 15947607 [PubMed - indexed for MEDLINE]

[ICLori]

Great article, thanks for posting this! I honestly don't know what will end up being the cause of IC...or causes....I'm just kind of on the edge of my seat waiting for what they will find...and hoping for a cure soon.

Blessings, Lori

[sleepyangel30]

I don't think IC is caused by bacterial either... If that was the case. I think we all would be cured ya know.

[tigger_gal]

Angela well said :) I agree

[Katrina]

Causes is what I think we should be looking for. If it were bacteria in all of us a cure would be a lot simpler. Thanks for sharing the article.

[MarthaF]

I am familiar with the article you cited and asked two microbiologists to read and comment. Both were highly critical. The only species of bacteria they tested for via the PCR was E. coli and the primers they used could not be found as those recommended for E. coli by one of the microbiologists who looked them up. They looked primarily for viruses which no one has found to be implicated in IC. There are many other species of UTI bacteria such as Enterococcus, Streptococcus Group A and Group B, Staphylococcus, Klebsiella, Pseudomonas, Proteus, and several others. These are not always isolated on the typical agar plate test used in labs. In order to find them via a PCR test special primers would have to be used. In other words these researchers cannot say with certainty that IC is not bacterial. All articles published in journals are not necessarily completely accurate. If you can discuss this with a microbiologist I think you would find that E. coli is not the only pathogen implicated in UTIs, but is the common one studied because it is easier to find via the agar plate and has tradtionally been considered the UTI pathogen.

A broth culture is much more sensitive but is not used because it is time-consuming and expensive for labs. The labs and the medical profession are content to use agar bcause they have been taught to look for E. coli as the cause of UTIs. Meanwhile many people are really harboring other pathogens that are not being isolated. Hopefully better molecular testing is on the way and will prove more accurate.

Even when found, however, some species of bacteria take a longer time to treat. After years they can burrow into the tissue and do damage. Several months of treatment may be required for the bacteria to be eradicated and the bladder wall to heal. Remember no one thought ulcers were caused by bacteria but now the researchers who discovered H. pylori is the cause were given the Nobel Prize. There was universal opposition to their findings for years. IC used to be called "Hunner's Ulcer" and 10 % of patients do have ulcers in their bladders. Many similarities exist between the two conditions.

Martha F

[Cheries]

O.K. Now I am totally confused!!:) This is constantly an issue isn't it? Does anyone have access to other articles?

[Martha13]

I understand it is confusing. Although we are doing research we have not completed a study so are not able to write an article for publication. However, for anyone interested in exploring this approach I recommend calling Ruth ****, NP, a former patient who is now treating IC patients. United Medical Lab in McLean, VA will do a broth culture and Ruth uses these results to determine antibiotic treatment. She also uses some natural supplements to help rebuild the bladder wall.

I recommend reading an interview with Ruth done years ago explaining her own successful treatment with antibiotics and why she thinks this is appropriate for many. The interview can be found on the IC Information Center. There are other good articles on this site.

Until the mainstream considers a bacterial cause for chronic symptoms we will have to use other providers to look for and treat IC as bacterial. But many are finding help. Ruth is licensed to practice and can prescribe.

I hope this helps with some additional information about bacteria and antibiotic treatment. The most common pathogen found by the broth culture is Enterococcus, which like E. coli is present in our intestines so it is easy for it to travel to the bladder just as coli does.

Martha F

[ICNDonna]

You can read about antibiotic therapy in the Patient Handbook at http://www.ic-network.com/handbook There are some who feel they have been helped substantially by this treatment --- others have reported disastrous results (antibiotic-resistant infections).

Hopefully one day soon the researchers will find exactly what causes IC. When a common cause is found, a cure should follow closely behind.

Donna

[massagedoula]

Just so you know my experience with United Medical,
United Medical Lab has you pay up front (159 dollars or so...I can't remember exactly) when you send your sample, and then they will bill your insurance. So I sent them the check, they billed the insurance, my insurance paid them (I got the EOB so I know that they got paid.)

And do you think I ever got any of my money back from them???? NOPE!

[ICLori]

That's a bummer :( Have you tried contacting the manager there? I'm sure you must have.

I keep an open mind. My latest doctor says "we really don't know what causes IC and we can't rule anything out yet" and I nod my head.

Blessings, Lori

[massagedoula]

Hi Lori,
I called once and left a message and no-one called me back. However, I just called again today and got someone after being on hold for a long time. She apologized and told me she will send me a check...so we will see if I get it!!!!

[massagedoula]

I also agree that some IC can be caused by one thing and some another. For example, why does Elmiron work for some and not for others? I am sure that there is a bacterial component in some rare cases, but I do not think that it is every case like some people believe. Also, there are many people out there making a lot of money from this theory....because people get desperate and will try anything. If antibiotic therapy cured all cases of IC, there would be a lot more people saying so. It has good success for some and bad success for many others.

[Katrina]

So sorry about your medical Bills and insurence problems.

[Cheries]

I tried this years ago and I got very sick from the antibiotics. They flared me worse. Dr. Fugosoto (spelling?) wanted to put me on augmenten and it gave me horrible yeast as well as flared me worse. I have since been on it and always get the same effect. The only antibiotic that does not flare me is macrobid which I only use if a culture says it is sensitive to it and I have a documented infection.

[Romans8:28]

I am in a difficult situation. Though I don't know if it has caused my IC, I know I have chronic infection. I believe it maybe connected to a bad surgery with unsterile instruments which gave me pseudomonas. Unfortunately I also have lots of kidney stones and nephrocalcinoisis. After doing lots of research, I've learned that the type of pseudomonas I had is a major biofilm former and that calcium in combination with it makes it 10 times more resistant. Basically my doctor has told me If it is in the calcium in my kidneys, we will never be able to wipe it out. He does feel that I have both IC and chronic infection though. Right now I am on long term antibiotics again..., I got a year out of a natural one, but without the antibioitics the kidney pain is unbearable and I begin to show infection on dipsticks! We are currently considering Dr. Toth's treatment and I am to talk to him on the 29th. I am scared I don't like antibiotics but don't see any other alternatives! I also do many IC things to keep the bladder pain undercontrol, without which I could not function daily!
On my last appointment my doctor told me if I crashed again before my next appointment he was ordering daily IV antibiotics! I haven't come on in a awhile while it all settle in my brain! I have decided that if it came to that, I just don't think I would do it! I just don't want to live the rest of my life that way!
So hopefully the Proquin XR, Cirpro or DR. Toth's treatment will work!

[Katrina]

Romans, I hope something helps you before IVs are your life. :grouphug::kiss::pray:

[poetgirl]

I tend to wonder if chronic bacterial infection is what destroys or damages the bladder wall lining, causing the inflammatory processes of IC to start up in some people. I developed IC after having recurrent UTIs for years. And even after the UTIs cleared up, I still have IC symptoms (although not quite as bad, since the Elmiron seems to have helped rebuild the GAG layer.)

My feeling is that IC is not caused by any one event we all share in common that caused a gross inflammatory response. I think that is what makes it so difficult to diagnose and treat. And what's even trickier is that many of us with IC also have other chronic inflammatory-type diseases, which suggests to me that it has less to do with the cause than the effect (how our bodies have reacted to some form of trauma.) That's my two cents for what it's worth. :)

[Martha13]

I tend to agree. There are probably many different reasons bacteria cause an active infection and cause the symptoms such as inflammation which is one of the most consistent signs. We know from a study that almost everyone has bacteria but we don't know why some have symptoms and some don't. But UTIs are a common factor for many before they are diagnosed with IC. The long-time researchers in the IC field, such as Dr. Keay and Dr. Theoharides, have long suspected bacteria but they claim they cannot find any in IC patients. The broth culture is more extensive and can ID slow-growing pathogens. Bacteria are there, no doubt. They must not be using very sensitive culturing.

Romans, if you go to see Dr. Toth in NYC it is my understanding that if he finds pathogens he will use 10 days of IV antibiotics, plus some other treatments, but that doesn't mean you will be on an IV forever. Isn't what I described your understanding of his treatment? Many are being helped by him. The good news is many are being helped by him.

Martha

[Katrina]

First off...finding bacteria isn't enough. The bacteria that is aften found in broth cultures are not usually harmful....so finding them doesn't answer enough questions.

[Romans8:28]

I appreciate all the support! :) My doctor is considering doing Dr. Toth's treatment here. I will get an answer on my next visit. Basically daily IVs are "his" next step if the Cirpo fails or a crash again! I am hopefuly about the ten day approach but understand from my doctor that it could also, as all the other antibiotic treatments provide a temporary relief! We will see what Dr.Toth says. The Lord very specifically met the cost of talking to him, so I am hopeful.
Thanks again for your encouragement!

[Katrina]

:woohoo: I hope it really helps you. Definatly sounds encouraging! :grouphug: Good luck! Keep us updated :)

[Romans8:28]

Just thought I'd let you know! I talked to Dr. Toth today. he is very thorough but he does not feel I would be helped by his treatment. He feels that I've had some infection probabaly even at birth. I did have early bladder infections. He feels the pseudomonas, in my case, is basically the straw that broke the camels back. Because the infections in my body are deep rooted, they will not show up on cultures and along with the calcium in my kidneys impossible to eliminate. :toilet:
He says to stay on as little antibiotic as I can and function, indefinately. The only hope being that after the change my body MAY respond differently to bacteria! Thankfully the new Cipro I had compounded is working for now, along with some stronger natural antibiotics!
I know God is still in control and without Him, I just don't know what I'd do!
Shelly

[Katrina]

I am so sorry Shelly, I so hope that Cipro continues to work for you. Thanks for letting us know...I wish things had turned out better. :grouphug:

[copyeditor]

the most reliable and classic symptom of UTI for me has always been low-grade fever & malaise. the day all this started, over a year ago, i began running the fever, had bacteria in urine, took antibiotics. urinary symptoms went away, but fever did not. i've seen over 10 doctors, including 3 urologists, 3 gynecologists, an infectious disease specialist who practically laughed at me when i told him my fever was 99, an immunologists, my GP, a few weekend clinic docs ... none of them want to claim it. they all say it is "something else," from my thyroid (which is being treated and has NEVER caused me to run a fever) to some "strange unknown virus."

it's so frustrating, because the answer seems obvious to me. at one point enterococcus was cultured. i believe the antibiotics i took did not work because the infection is so embedded.

what is dr. toth all about? who is martha? because what she is saying makes A LOT of sense to me!

[Katrina]

Dr Toth does broth cultures.
2.
Dr. John Toth of Concord, CA is now doing broth cultures and can treat patients. You can reach his office at this number: 925-687-9447. (He is authorized by Dr. Fugazzotto)

http://www.remedyfind.com/newsletter_archives/Dec_05_InterstitialCystitis.html

[Romans8:28]

Ok, ..., many of you know I talked to Dr. Toth for an imbedded bacteria and he can not help me. I learned about him from here and he is very nice but I have to admit I have some real concerns! My doctor was actually considering doing his treatment for me. Both he and I have had e-mail correspondence with him. He told me only by a phone consult could he answer any medical question, ($250)! He is VERY expensive and also admitted to my doctor there no information no reserach only antidotal success from those who it has worked. And that's great but he also said there are many failures, too! To have his treatment it sounded like it runs about $10,000 and he will only do it if he treats husband and wife! I am gald for those he has helped so please don't get me wrong but I think there also needs to be some caution here. It is a pretty intense treatment!
My doctor does long term antibiotics for those with chronic infection,and before he will diagnosis IC, slowly tappering most off. If you could find someone to try this first. I think the lady named Ruth does this too, It might be of a good benefit for you!
And truthfully I would recommend anyone trying Silverbiotics first. This is natural heals the bladder and has been tested against imbedded bacteria. My situation is VERY complex but it gave me a year without antibiotics which is amazing! It is also being used to treat radiation burns in cancer patients and I believe it could help heal the baldder. Since it is an FDA approved disinfectant I even instill it, with permisssion form the VP of the company and my doctor! It comes in 10ppm and 22ppm and is available at through some healthfood stores. If you are interested you can PM me and I will give you the numbers!

[Martha13]

Romans is right about Dr. Toth's treatment - it is expensive, aggressive and no one should go into it lightly. But he is helping others with treatment of urogenital infections never found by their former labs. His specialty was always infertility which he feels is usually due to undiagnosed infections. By chance some patients with IC found out about him and since oral antibiotics did not completely get rid of their infections they have begun to see him. He has only been treating IC patients, specifically, this year but more and more are hearing about him and trying his treatment. He will dicuss your case by phone before determining whether he thinks he can treat you.

As Romans said there are some who are not well after seeing him but it takes time to tell after the treatment and followup culturing may be necessary. As we know there are no IC treatments that can guarantee 100% success. Much more research needs to be done on IC as an infection, but the mainstream medical/scientific community denies that it is bacterial so currently there is little or no research being done on this approach. As many of us have found the traditional lab culturing does not find bacteria in most cases but there are methods like the broth culture that can find slow growing species, and very meticulous labs like Dr. Toth's allow some cultures to grow for two or more weeks before finding a possible pathogen.

Studies to confirm the efficacy of a treatment take time and money and Dr. Toth has concentrated on treating patients. He has written two books, the latest of which is "Fertile and Infertile" avaliable on Amazon. This explains his theory of infections as the probable cause of most infertility. He gives case histories and explains his treatment. He has been practicing in Manhattan for many years and his patients have a website. There is also a website for those more recent patients who have begun to see him for both genital and IC symptoms on Yahoo Groups for G U Infections.

Some patients may be misdiagnosed with IC when they really have vaginal infections. Chlamydia is very hard to culture and he is finding this in many patients who see him and were told they were negative. There is a desperate need for better culturing for all urogenital infections in both females and males.

Martha F

[Romans8:28]

I know that Dr. Toth has helped many infertility couples not doubt and I know that some IC patients have also been helped. I would though be curious to see the number or % of IC patients that see significant improvement after his treatment. In the last year lets say he treated 10 how many are significantly better even after a few months?? That doesn't require a lot of money for research.

[Cheries]

What exactly is involved in his "treatment"? I went through Dr. Fugozotto years ago but could't tolerate the antibiotic I was given. I would also want some concrete evidence as I believe research on IC has been done and found NO bacterial DNA in samples. I believe that having IC makes us very prone to infections, but I don't believe this is the main cause of our symptoms. I believe the toxin is that has been isolated. I am so surprised that more people aren't talking about that major break-through. I believe most of the money should be spent on developing this theory as it is the most promising in my opinion.

[ICNJess]

I think it's somewhat ignorant to pressume that there is just one cause of IC. Some people find that their IC is better with antibiotics; others are soothed by Elmiron; others by the InterStim implant; some by alternative meds. Some people find that their IC began after a surgery. Some find after chemical cystitis, some after an infection, etc.

What does this all prove? That it's bacterial? Nerve related? Autoimmune? Look at those who find that they are hypothyroid and find relief with hypothyroid meds.

BUT, regardless of speculation, the important thing is FINDING SOMETHING THAT HELPS!!!!! If antibiotics help someone, so be it. Elmiron didn't help me, the InterStim failed me, etc. etc. but it helps many others. IC, in my opinion, is part of one big syndrome, and hopefully researches will figure something out soon. Until then, all we can do is treat it in the best way we can.

[Katrina]

Well put Jess!!! Thanks! :)

[Martha13]

Cheries, what is the "toxin" you mention that has been found? Are you referring to the APF (anti-proliferative factor found by the Dr. Susan Keay - if so there has been much publicity about that finding but they don't know what CAUSES it).

The scientific community has absolutely ruled out a bacterial cause - ask any prominant IC MD you can name. But after 100 + years of research they have not found any cause - only treatments. A bacterial species (Enterococcus) has been found via a DNA test in some patients (unpublished data). But a positive DNA test has also been found in controls with Enterococcus. The key is that many symptomatic patients do respond to the right antibiotic for this species, although some find it hard to tolerate antibiotics in any form since their bladders are sensitive. There is usually more than one antibiotic that can be used based on a sensitivity test.

Bacteria are very common in the female bladder due to anatomy - most are not identified due to inadequate culturing. But if a pathogen is found in a symptomatic person treatment can be tried. A big question still remains - why are some susceptible to bacteria and others are not? Same is true of H. pylori and stomach ulcers - many have H. pylori and do not develop an ulcer. No one knows why as yet. But still symptomatic persons are treated with antibiotics and get well. The Nobel Prize this year was awarded to the MDs who discovered this. Probably many other diseases will be found to be bacterial as more research is done.

Martha F

[Katrina]

Some patients treated with antibiotics get improvement and some get better. That is true. The treatment option is worth looking into...but I would ask my local doctor or doctors before trying someone that won't be covered by insurence. There are doctors that know the research and can do the treatment without the patient going broke.

Thanks Martha you said that well.

[copyeditor]

I think it's somewhat ignorant to pressume that there is just one cause of IC. Some people find that their IC is better with antibiotics; others are soothed by Elmiron; others by the InterStim implant; some by alternative meds. Some people find that their IC began after a surgery. Some find after chemical cystitis, some after an infection, etc.

What does this all prove? That it's bacterial? Nerve related? Autoimmune? Look at those who find that they are hypothyroid and find relief with hypothyroid meds.

BUT, regardless of speculation, the important thing is FINDING SOMETHING THAT HELPS!!!!! If antibiotics help someone, so be it. Elmiron didn't help me, the InterStim failed me, etc. etc. but it helps many others. IC, in my opinion, is part of one big syndrome, and hopefully researches will figure something out soon. Until then, all we can do is treat it in the best way we can.

i wouldn't call it "ignorant" for someone to subscribe to the theory that one cause, i.e., bacteria, can be the responsible for IC. am i saying that there is only one cause for IC? not necessarily. but i also believe it can be ignorant to assume that there could not be one cause of IC.

for me, finding the cause of IC would be much more valuable than finding what works for the symptoms.

[Katrina]

The whole point of finding a cause is so that we can have a cure and no longer have these symptoms. If we assume there is only one cause...we may miss out on finding the many causes. I think many of us would love for there to be one cause...one cause that in finding it can lead to cure for all of us. That would be great news.

[Dixiefireball]

Well put Jess. I've been on anti for real UTI I know for about two years now just this year a lone I've had six IV anti. did that help my IC in any way? NO. it did get rid of the infection but the infection come back as quickly as the go in my case. I know I'm not the avg run in the mill IC because I get real UTI. I also have many hunners on my bladder wall that grows on the inside and the outside of the walls. I honestly believe there is more then one cause for IC. Yes in some cases it could be cause of many UTI. (I'm one of those cases) but as Jess put there is so many others causes. I just don't believe there is a germ in our bladder floating around at all times if they where a Dr. or Scientist would had found it by now after all these years of research.

[copyeditor]

so. we should all "assume" that there is more than one cause of IC, and any opinions varying from that are "ignorant."

i give up. i'm going to sleep off my surgery from earlier. y'all have a great holiday.

[Romans8:28]

I too feel there are multiple causes for IC, there for it is very difficult to treat!

On the other hand the research I've been doing because of my infections, on biofilms is incredible and truthfully many bacteria can not be culture. as I mentioned before I had surgery and the instruments were not sterile! I got pseudomonas, and do to the circumstances it was not properly treated. Now we are afraid it has formed biofilms, like fortified cities in the calcium in my stone filled kidneys and it is scary! Even DR. Toth, my research and my wonderful doctor said it is so imbedded it can not be cultured! Yet, without antibiotics the flank pain is unbearable but truthfully on them my bladder hurts soo bad! :headbang: (And I also do begin to show leucocytes and blood in my urine when the infection comes back, on a clean cath urine.)
My instills are not working very long anymore either and I am starting to have to take pain meds again :rolleyes: I hate being on antibiotics:(! The new Cirpo hurts now too:(!
My doctor is awesome and the more I read the more I appreciate him, yet
SINCE WE HAVE NOW MADE THE CHRONIC INFECTION BIOFILM CONNECTION AND RESEARCH BELIEVES IC IS NOT CAUSED BY BACTERIA, HE SAID I MAY NOT HAVE IC, ONLY THE MOST SENSTIVE BLADDER AND THE MOST DIFFICULT PATIENT TO TREAT IN HIS WHOLE PRACTICE..., :toilet: HE TOLD ME MY BLADDER REACTS TO THINGS THEY NEVER WOULD HAVE EVEN THOUGHT OF!.., He had already diagnoised me with IC :hmm:
not that i want IC or chronic infection only to get well! & if it was only infection why did I still have a lot of bladder pain the year I was able to get the infection under control with my SIlverbiotics a strong natural antibiotic.
Sorry this is just a pretty heavy subject in my heart right now!
I just pray I can help my doctor to recognize that does IC has many different causes and though mine "may"(because I had some mild symptoms before the infection), be bacterial caused I STILL HAVE IC!
So, I too feel to not acknowledge multiple cause is to limit the research, and help for each patient both ways!