Quest versus UML and questions

[dreamy]

I just wanted to ask would the UML test be better than Quest 3021 test? Can pyridium mess up a culture? Is there any difference between the two urine tests? If I did go to a urologist and asked them for the quest 3021 cath urine test, how would I explain wanting this when they will clearly say no bacteria is showing on their regular urinalysis in the office? That is my question. I would think they wouldnt do it because they see no need based on the regular urine tests.

That is frustrating too because why are low levels of bacteria dismissed so easily yet were all suffering with a cystitis of the bladder?

And if there isnt any damage to the bladder why do we take elmiron to help heal a defective bladder lining and if there is no damage then why would someone have IC?

Wouldnt it be better to assume nothing from a regular urine test and test everything with urine broth cultures just in case? I dont see what the big deal is especially when our insurance would pay for it anyway.

I am also taking the femdophilus thank you Martha.

[MarthaF]

I can't answer all the questions but they are good ones! First of all for over 50 years the urologists have been satisfied that the typical routine 24-48 hour culture finds anything there. Dr. Fugazzotto found 20 years ago that more appeared using a broth culture and allowing it go grow for a week or more. He lectured at conferences but his style was to criticize the methods in use and they turned him off as a "quack". No one apparently bothered to try his method to see. And the large lab corporations are interested in quick turnaround and making money so had no reason to take more time with cultures. STill, if a uro orders them to, they have to let the culture grow longer and this often produces more growth.

I doubt that many doctors even know that Quest (and Labcorp) have better cultures and, even if they do, they don't see the need to order them. It is a matter of "always doing it the old way" and don't rattle the cage, in my opinion. Now that we have United, patients can send a specimen on their own and don't need a doctor's order. Most doctors will treat based on United's finding, but aren't interested in HOW/WHY they find bacteria in patients whose routine cultures are negative. My uro couldn't find bacteria but was willing to treat me with antitiotics based on Dr. Fugazzotto's report. I got better but my uro just thought I was an exception I guess. I think that is still true.

There are still many questions to be answered but until we can convince the mainstream, including our advocacy groups, to look harder for bacteria things won't change. Almost all research is financed by the NIH and they are not open to looking for a bacterial connection. The ICA does the most lobbying and they have long ago dismissed bacteria. I am convinced bacteria are involved but we don't know why it bothers some and not others. We think it becomes intracelllular which makes it hard to detect and treat. Also, we could be dealing with biofilms which are a hot topic now. All of this takes money for research financing. I have found an article showing the Japanese found enterococcal biofilms in UT patients but that has not been replicated here.

Meanwhile, I recommend a broth culture, or a more extensive culture by Quest, and treatment for any bacterial species found. There are many species that can cause symptoms, not just E. coli. Among these are Streptococcus, Enterococcus, Staphylococcus, Klebsiella, Pseudomonas, Citrobacter, and others. You are right that if our bladder linings are damaged we are more susceptible. When you see patients' pictures of their bladders you realize the damage. Bacteria are prime examples of something that could cause damage like this, including ulcers. (Stomach ulcers are caused by H. pylori we now know).

I don't think Pyridium will affect findings, but it would be better not to use it for a few days before taking the specimen.

Please PM or email me if you have any more questions.

Martha

[dbritts]

As an IC patient who has been fighting a persistent enterococcal and MRSE infection diagnosed in 2004, I agree with Martha's comments. I don't understand why the vast majority of urologists continue to use a culture that predominately isolates e.coli which is a gram-negative bacteria. Enterococcus is the 2nd cause of UTIs and it's well-documented that it's the most common cause of chronic urinary tract infections. As a patient who has been under the care of my urologist and numerous Infectious Disease drs. , I know that these bacteria are easily visible under a microscope, but will not grow on a the agar culture which picks up e.coli. If a urologist sees persistent bacteria in his patient's urine, it should not be dismissed as a contaminant--this is not a "cost issue" for the patient--this is following back on the old standards that 85% of UTIs are caused by e.coli. How well would those statistics hold up if all urinary pathogens were cultured by urologists? Based on experience, it would be quite easy to diagnose an enterococcal infection as IC with the current cultures used by urologists. Your bacteria would be dismissed as a contaminant because the agar culture would be negative. Wow, culture negative and bladder pain and frequency, sounds like IC, doesn't it. It's frightening that some urologists feel that IC can be diagnosed based on symptoms and negative cultures. Could IC be caused by bacteria--at one time I would have said no, but now I say " I have no idea". There is research that indicates that Crohn's and severe IBS may be caused by a bacteria called MAP. Clinical trials with antibiotics are underway in the US. Crohn's is successfully being treated with antibiotics in Australia. As Martha pointed out, the discovery of h.pylori changed the way that stomach ulcers are treated. I think we should keep our minds open to all possibilities at this point and our drs. should have an obligation to culture us for all bacteria that cause UTIs.

Debbie

[mom_in_ma]

You know, for a long time I sort of dismissed the antibiotic theory...likely because very little research has been done in this area and I tend to be research based. But, I can tell you what I do know...

At the time I was first diagnosed with IC five years ago, I had just been diagnosed with a low-count colony Enterococcus infection. This year, I've had my worse flare ever after a two-year remission and I was just diagnosed with....you guessed it, an Enterococcus infection. I have no idea how many months I've had it, but suspect at least a few. Although, the flare started before the infection, I'm sure due to stress and hormones.

That said, Martha, how do you explain flares and remissions with the bacteria theory. I had a two year remission that happened without antibiotics. I'm just curious? If antibiotics are the magic cure...hand them my way!

[dreamy]

Hey Martha thanks for the information. I recently had to do a Quest 3020 culture. Is that a good urine test? Is this just a regular test compared to the 3021?

[dbritts]

Mom-in-ma,

I wish someone could explain how the enterococcus fits the picture. I was officially diagnosed with IC 12 yrs. ago after a cysto/hydro with biopsy that came back IC with mast cell involvement, but was symptomatic for 6 yrs. before IC diagnosis. I thought I found my answer with Elmiron. I started it before it was approved and it turned my bladder around. I was dealing with other health problems that came after the IC began, but for the most part, the IC was on the back burner. 4 yrs. ago my dr. saw bacteria in my urine and it's like reliving the IC nightmare. I've been on Zyvox which is the strongest antibiotic on the market that will kill enterococcus and staph. I felt like a normal person for 2 wks. and the infections came back. The Infectious Disease drs. say that the bacteria has gone intracellular and the antibiotics suppress it, but won't kill it. How does the enterococcus fit in the picture? I would love to know how I ended up with enterococcus and MRSE after 14 yrs. of IC.

What treatment were you on during your 2 yrs. of remission? Have you had any type of health problems that would leave you susceptible to bacteria?

I can't explain your remission, but it seems that many of us share this low colony count enterococcus infection. I only wish antibiotics were the magic answer.

Hope you get your remission back. How does your dr. treat your infection?

Debbie

[mom_in_ma]

That's the thing....I didn't DO anything to get into remission. It just sort of happened with time. The only thing I can think of is that I started using allegra for seasonal allergies (which, hasn't worked for IC this year) and xanax by accident when I was freaking out in a flare and it made things much better with PFD.

This flare started becuase of hormones (miscarriage, perimenopause) and extreme stress...all at the same time. The infection, could heve come from anywhere, I tried instills this summer (didn't work, I retained then, I did internal PT, etc.) But fall is when I took a nosedive symptom wise and I think that's when the infection started. I'm just mad that it too THREE uros to catch it. THREE!

So, yes, if you think about it I did have health problems that could have made me susceptible to bacteria in pods. Hormones, stress, grief. It's possible, but I think it's so much more complex than that. The newest theory is that it's a central nervous system malfunction and that's not all that nutty to me either.

I'm just curious about Martha's reponse.

[OrlandoP]

I posted about this yesterday in the wrong place! Mom In Ma and I are trying to untangle this one. First, according to my urologist and gynecologist, some of these bacteria, such as ureaplasma, are normally found in the vaginal and urinary tracts. Guessing which amount causes problems in one and not another is problematic. The other thing, and this is my question, I suppose, is that it seems like these infections require long-term antibiotic therapy. Why is that? Is it that gram positive bacterias are more resistant?

I have read fairly extensively on the dangers of long-term antibiotic therapies. I'd like to hear more about folks who did the therapy, and got permanent results. That seems to be lacking in public information. Antibiotics, from what I've read, can make patients feel better because they reduce inflammation regardless.

Finally, I mentioned that while in Europe, I tested positive for ureaplasma and mycoplasma. I was dismissed by my gyno here as that being normal. That was last year. I should also add, however, that back in 1999, I had testing done at United Medical. They only did a three-day broth test, don't know if this is their standard. I tested 100% clean, and I still struggle on and off with IC now ten years later. I also had a complete remission for more than three years, and wonder, how can enterococcus, for instance, go into remission on its own?

Martha, you are the expert! Thoughts?

[OrlandoP]

Sorry, can't seem to edit my last post.

Wanted to add:
If you read the research on prostatis, IC's male counterpart probably, there is no research showing consistent positive results in enterococcus or other gram-positive bacterias. If you read elsewhere, ureaplasma can cause urethritis. On the other hand, up to 80% of people have this bacteria, and most people don't get urethritis. Complicated.

[MarthaF]

There are lots of questions being posted and I can only take a stab at some. I really don't know anything about ureaplasma so will have to confine my comments to culturing and Enterococcus, both of which I have been researching for years.

I don't know about Quest's test #3020 but will try to research it. Let us know if it shows anything when you get the results. Some of us are mentioning Quest testing since up till now we have only known about United Medical Lab's extensive broth culture and keep hoping the bigger lab corporations will offer better testing, too, so that maybe more patients would take advantage of it. While I have complete confidence in United it is inconvenient to send a specimen through the mail (although for years I sent mine to Dr. Fugazzotto in SD and was glad I at least had someplace to get positive results).

As to remissions that is a tough question. I had a 20 year remission and can't explain it. Since we don't know for sure what causes the symptoms/infections in the first place it is hard to know. As I have said before I think is must have to do with hormones, genetics, trauma, our immune system, stress, etc. I think bacteria are in and out of our bladders all the time; due to the female anatomy most of the bacteria comes from the intestines and out of the anal opening, to the vagina and into the urethra - all close together. The bacteria should wash out with urination but some seem to find a happy home and invade or form a biofilm to protect themselves from the body's defenses or antibiotics - survival of the fittest. I think the approach used by Dr. Gregor Reid, who invented FemDophilus, makes the most sense. He and a colleague tested strains of lactobacillus to find two that offered the most protection in the vagina. They were two that prevented pathogens and yeast from adhering to the vaginal wall and then moving to the urethra. The two strains are able to establish colonies in the vagina that help protect the body from BV, yeast infections and UTIs. Once an infection is established it usually takes antibiotics to get rid of it. If the bacteria are in the bladder wall or in a biofilm they can re-emerge to cause new infections so it takes time to completely eradicate all the bacteria, and time for the bladder wall to heal and be able to fight off bacteria. I am well now but continue to take FemDophilus as a preventative.

I can't comment much about prostatitis. Dr. Fugazzotto believed it was caused by Staphylococcus. Staph epidermus is on our skin and harmless, but once inside the bladder or prostate can cause symptoms. It is commonly found via a broth culture (second most common only to Enterococcus) and responds to antibiotics when in the bladder. My understanding is that the prostate is harder to treat, but I have successfully been treated for a Staph infection in the bladder. If we do have biofilms in the bladder (and only the Japanese have found these) they are often polymicrobial (many species of bacteria are inside) and I, for one, have had many different types of bacteria isolated during my treatment. Many do not take long to treat but may require a different antibiotic than the main culprit, Enterococcus, does. That is why a sensitivity test is important during the culturing.

I sponsored research showing that Enterococcus is the main pathogen in most symptomatic patients. The results were presented at both the meetings of the Canadian Society of Microbiologists and the American Society of Microbiologists: There is one abstract online:
http://www.csm-scm.org/english/abstracts/public/view_abs.asp?id=1712

The researcher, Dr. Jana Jass, is hoping to publish the whole article detailing the project in a scientific journal. The testing involved using the PCR, based on DNA, so is quite reliable and did not depend on colony counts.

Much more research needs to be done since one research project cannot answer all of the questions, but research requires a huge commitment of time and money and interested researchers. Meanwhile, we are fortunate to have at least one lab that will do extensive culturing and a few practioners/MDs who will treat any bacteria isolated with antibiotics. It has been found that this treatment will take several months. And since antibiotics are not benign it is very important to take probiotics to replace the good bacteria the antibiotics kill in the intestines. The probiotic should be taken 1-2 hours after the antibiotic. And a yeast control diet is important, too.

Guess my best advice is to have the most extensive culture available. I hope some will try Quest and post their results. Most doctors probably do not even know Quest (and LabCorp) have better cultures and if they won't order them then send a specimen to United Medical Lab (unitedmedicallab.com) on your own. They are a certified lab and a doctor should honor their results. The sensitivity test will list the best antibiotics and the number of colonies are not important. If you have bacteria AND symptoms the chances are bacteria are a problem.

Martha

[OrlandoP]

Martha, this is quite fascinating, and I thank you for your time and effort in answering our questions. I hope you won't mind another one.

If the body generally flushes out enterococcus out of the bladder, is its presence in the bladder then for sure a sign of infection? Or is the idea that some folks can tolerate this bacteria, and others can't when it has invaded the bladder? I guess then the question would be towards the patient research. How many people show enterococcus in their urine overall, vs. and how many of this group have symptoms that are IC-like?

In Dr. F's work, what was it about the presence of these bacteria that led him to believe this was the root cause of IC or prostatitis, rather than nerve damage from an infection? (I had an e-coli infection, and I've read that other gram positive bacteria can "ride" these bacteria and hang out.)

And then the best question: why would the medical community not test thoroughly for all pathogens? That simply makes no sense to me!

I'm calling my docs on Monday to find out what they did and didn't test for. All my docs use Quest, so I'll see if the complete urinalysis includes gram positive work. I'll report back.

[MarthaF]

I will try to answer your questions which are very good and legitimate.

In the research I was involved in I recruited 50 IC-diagnosed patients. They had to have a doctor's signed statement that they had been diagnosed. They submitted specimens to the medical college where the research was done. We supplied kits and paid for overnight express for the shipment. They had detailed instructions on how to obtain a specimen and had to be off of meds for 2 weeks prior. The researchers did a PCR based test especially designed to find Enterococcus since we were trying to confirm or disprove Dr. Fugazzotto's theory. We also recruited 50 asymptomatic patients and they followed the same procedures.

Result showed that 67% of the patients and 24% of the controls were positive for Enterococcus. So it is possible for people to have Enterococcus without symptoms/infection. But whose to say that eventually some of the controls would develop symptoms when something triggered their immune system: hormones, trauma, or stress,etc. to make them susceptible. We have to remember that for years stomach ulcers were considered due to stress or diet until Dr. Barry Marshall proved they are caused by H. plylori. Still many have H.pylori and don't develop an ulcer. No one knows why.

This is just one small research project. One of the investigators donated her time which made it affordable, although it still cost about $100,000. The principal investigator submitted a proposal to the NIH to do more research based on these preliminary results but was turned down. It is hard to break into the NIH group of researchers when you are the "new kid on the block". She does brain tumor research using PCR so was not known as an IC researcher. I don't know how we can spur further research into a bacterial connection. There is much resistance among the mainstream IC community but they have reached the point that they are testing an immunosuppressant, Cellcept, that is having limited success and has significant risks.

I think most uros/MDs trust that the current testing is adequate, although it has been in use for over 50 years and we know it is time for progress. I have pointed out that better testing has been touted by the medical community in a site online: http://jcm.asm.org/cgi/content/abstract/44/2/561

This was announced by UCLA several years ago at the meeting of the American Urological Association but so far has not been made available to clinics or labs for patients to use. But one researcher wrote me that they knew better urine testing was needed and they have the technology to do it.

I think we have to keep asking our doctors to make sure we get absolutely the best test available and they could easily contact Quest and LabCorp to find out what that is. The Quest lab would not talk to me since I am not a health care professional. I think even letting the routine culture grow for a week might result in better results.

As to the question about Dr. F.'s findings, I will have to think about that. He is still alive and in a retirement home. When push comes to shove we owe him so much for pursuing his findings and for years he cultured for us for a nominal fee - he charged $15 and then went up to $25 just to cover the cost of his supplies. He did this because he believed we were not being well-served by the routine cultures that usually found nothing.

Hope this helps. I have been involved in this cause for 18 years and have made it my goal to find answers and promote better research and treatment. The experts would say that the next step is to show that bacteria respond to treatment and people get well. There are many, including myself, who have posted about their good response and I know of others who do not post but know that bacteria were the cause. Some have other problems - Lyme being a big one - so we know we don't have all the answers. But a good culture is one place to start.

Martha

Martha

[OrlandoP]

Thank you, Martha, this is great information! I am disappointed that Quest will likely not speak to me about what the "complete urinalysis" they did entails, but it's worth a shot. I'm also going to make another appointment with my urologist when I get back from a trip. It's SO hard. Even this uro I actually like doesn't have the kind of bedside manner I'd appreciate! I still feel like a dork making an appointment to pursue more answers.

[OrlandoP]

Sorry, Martha, you've more than done your tour of duty today. I think I have a rhetorical question, unfortunately. Enterococcus is WIDELY accepted as a cause of bladder infections in NIH studies! It reportedly does not cause inflammation the way e-coli does.

I accept your suggestion that labs are interested in quick turnarounds, and I believe that would be the case if money is at stake. But why would a well-established and respected urologist in NYC (mine) resist testing for gram positive bacteria if the NIH knows them to be pathogens? Is it possible that they would show up on a two-day if they were severe enough?

I'm changing my Avatar to "Confused"!

[MarthaF]

Orlando,

I would be interested to know what NIH studies you have seen showing Enterococcus is a major cause of UT infections. Maybe they are referring to UTIs in hospitalized patients. I don't why they find it in the hospital labs and not in the community.

If the growth is enough it might show on the 2-day routine culture but labs might dismiss it as a contaminant.

I think Enterococus would cause inflammation just as any other pathogen.

Martha

[OrlandoP]

Orlando,

I would be interested to know what NIH studies you have seen showing Enterococcus is a major cause of UT infections. Maybe they are referring to UTIs in hospitalized patients. I don't why they find it in the hospital labs and not in the community.

If the growth is enough it might show on the 2-day routine culture but labs might dismiss it as a contaminant.

I think Enterococus would cause inflammation just as any other pathogen.

Martha

Hi Martha,

Here's one of the studies: http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=15784592

You can see why as a layperson, I'm confused as heck. And I feel like my docs have given me a bum steer. Who knows if it showed up on my reports and they simply dismissed it as "normal". Lot of work ahead. As per usual, every good piece of information to move forward on this disease is from this board. While that's wonderful, it certainly speaks poorly of the medical community in general.

[MarthaF]

This is a good article to look at. Washington Univ has done the most research on UTIs in the past. They have looked at E. coli predominantly and were the first to come out with the finding of "pods" or intracellular bacterial communities. These could be the same as biofilms although they have not used that word. But all of their published research that I have seen has been done on mice. We still have not heard of research in which they have found these pods in humans. I attended the 2003 ICA annual meeting during which Dr. Hultgren spoke about these pods, and the finding was given national coverage in the media. But the fact remains that they were looking at mouse bladders. What about us, humans?

And the research on Enterococcus has been on hospitalized patients, or nosocomial infections, as they are called. We know that Enterococcus is found in the community-based populations, too.

I think we, patients, have a right to be disappointed that we have to do much of our own research. I have spent hours reading articles from research sites all over the world. In addition to the enterococcal biofilms found by the Japanese, the Italians have found Viable But Non-Culturable Bacteria (VBNC). These are bacteria which go into a quiescent state but can be resuscitated. In other words bacteria are smart and complicated and we have only scratched the surface in my opinion. We have to think outside of the box.

Why dismiss bacteria as being involved in symptomatic bladder problems and why not use the best tests available to look for them?

Martha

[boukie]

As an IC patient who has been fighting a persistent enterococcal and MRSE infection diagnosed in 2004, I agree with Martha's comments. I don't understand why the vast majority of urologists continue to use a culture that predominately isolates e.coli which is a gram-negative bacteria. Enterococcus is the 2nd cause of UTIs and it's well-documented that it's the most common cause of chronic urinary tract infections. As a patient who has been under the care of my urologist and numerous Infectious Disease drs. , I know that these bacteria are easily visible under a microscope, but will not grow on a the agar culture which picks up e.coli. If a urologist sees persistent bacteria in his patient's urine, it should not be dismissed as a contaminant--this is not a "cost issue" for the patient--this is following back on the old standards that 85% of UTIs are caused by e.coli. How well would those statistics hold up if all urinary pathogens were cultured by urologists? Based on experience, it would be quite easy to diagnose an enterococcal infection as IC with the current cultures used by urologists. Your bacteria would be dismissed as a contaminant because the agar culture would be negative. Wow, culture negative and bladder pain and frequency, sounds like IC, doesn't it. It's frightening that some urologists feel that IC can be diagnosed based on symptoms and negative cultures. Could IC be caused by bacteria--at one time I would have said no, but now I say " I have no idea". There is research that indicates that Crohn's and severe IBS may be caused by a bacteria called MAP. Clinical trials with antibiotics are underway in the US. Crohn's is successfully being treated with antibiotics in Australia. As Martha pointed out, the discovery of h.pylori changed the way that stomach ulcers are treated. I think we should keep our minds open to all possibilities at this point and our drs. should have an obligation to culture us for all bacteria that cause UTIs.

Debbie

My twin sister and I got our results back from the broth culture. They found e coli in both of them. I am now waiting to get my prescription for antibitotics. I think 2 wks. But is 2 wks enought time to kill the e coli? Does anyone know out there? Please let me know.