The World of Chronic UTI Sufferers – 15 Million Women and Growing

An estimated 49 million women had a UTI in the past year and over 15 million (33%) are suffering from chronic urinary tract infections (UTI’s), which means that they get 3 or more debilitating infections every year. And they are in their doctor’s office every other month with the same complaint: “Why can’t you give me something to get rid of this infection?”

1 in 3 Women suffer 3 or more UTIs In a Year

Antibiotics Are No Longer A “Silver Bullet”

For the past decade, the medical community has acknowledged that antibiotics are no longer “the silver bullets” that they used to be when one dose immediately cleared up this type of infection. Because antibiotics have been overprescribed, the E Coli bacteria causing these infections have learned how to hide, grow and emerge again once the antibiotics are no longer present, causing a recurrence.

Doctor dispensing antibiotics

Simple Infections Are Becoming Death Sentences

And for elderly patients who often have no symptoms, this vicious cycle can lead to serious kidney infection, delirium, sepsis and even death.

In 2019, over 35,000 people died from antibiotic resistant infections, which caused the CDC to declare this “antibiotics resistance” a national crisis; read more here.

No New Solutions Being Developed and Doctors Unwilling To Change

Naturally, COVID-19 has commanded the full attention of the pharmaceutical and biotech companies over the past year, but this means that no new antibiotics are being developed to fight these “superbugs”.

Couple this lack of development with doctors’ unwillingness to change what they’ve always done regarding antibiotics prescriptions for UTIs.

When asked what he sees happening in the future in view of doctors’ reliance on antibiotics, Dr. Thomas Finucane, an MD at Johns Hopkins, said:

“Glacial change. Everybody has seen a delirious patient have bacteriuria, get antibiotics, and get better. The antibiotic treatment of self-limited conditions is uniformly gratifying. It’s very deeply embedded in the psyche of the docs, and the patients, and the patients’ families. So, all of those factors add up against any radical change.”

Patients Are Taking Matters Into Their Own Hands

Frustrated with being forced to live with the unbearable symptoms of this infection, millions of women across the country have banded together into support and discussion groups, and are sharing their stories about how they were able to finally get some answers and relief. Having gone almost to the ends of the earth to find help, these women and men are significantly more enlightened about UTIs than most doctors.

As you will see, they have become very familiar with all of the language, the diagnostic tests and tools, reports, types of bacteria, differences in antibiotics, co-morbidities which may be causing their UTIs and how to manage their UTIs with a combination of traditional and alternative medicine.

For example, they can tell you whether their infection is a “relapse” or a “reinfection” and what their bacteria “colony count” is.

Five Key Takeaways From Women Who Have Been Through It All

Most of the women that we’ve listened to have been living with this condition for years. They know “what works” and “what doesn’t”. Doctors are beginning to conclude that it’s time to listen to what they have to say.

“We have to consider the probability that what patients describe may be a most valid representation of their plight and we should recognize that.” – Dr. James Malone-Lee

Following are the five insights that we have gleaned from their conversations online in various discussion and support groups.

1. IT’S TIME TO CALL THIS WHAT IT IS – A DISEASE

Woman Calling Time OutWe’ve got to stop thinking that a UTI is just a one-time infection for chronic UTI sufferers. It is a disease.

A disease is defined as any harmful deviation from the normal functional state of an organism, generally associated with certain signs and symptoms, and is not caused by injury. A diseased organism, in this case the bladder, commonly exhibits signs or symptoms indicative of its abnormal state.

Like heart disease or cancer, a urinary tract infection that does not heal continues to weaken and corrode our renal system which balances the body’s fluids and regulates blood volume and blood pressure, among other things. And yet the standard treatment protocol is a week’s course of antibiotics.

Do doctors really think that a bladder which has been invaded with live colonies of mutating bacteria can be fixed that quickly? Like any other chronic condition, this will need to be carefully monitored and treated over many months, if not years.

2. TO DEAL WITH A DISEASE, YOU NEED A DIFFERENT TYPE OF DOCTOR

Many of these women have found a new level of understanding and treatment from Integrative Medicine and Functional Medicine doctors. Doctors who will work with you until they solve the problem.

These are professionals who will evaluate your whole system (not just your urinary tract) and work to identify the underlying causes of this chronic illness. It is well-known that the causes of, and treatments for, UTIs involve several systems (vaginal, urinary and intestinal), and may also include nutritional deficiencies or more serious illness such as kidney stones or even cancer.

And, just as important, you need a doctor who believes in using both traditional and alternative methods to facilitate the body’s innate healing response. Unlike MD’s, these providers are quite willing to recommend natural supplements as alternatives to antibiotics for UTI treatment.

Many of the discussion group participants are now also referring women to specific doctors and/or nurses who specialize in chronic UTIs. The names that come up most often are:

  • James Malone-Lee, an MD who is based in the UK and is the author of the book “Cystitis Unmasked”, a research guide for doctors
  • Ruth Kriz, MSN, APRN, Washington DC
  • Stewart Bundrick, Bossier City, Louisiana
  • Michael Hsieh, Washington DC

3. MOST UTI TESTING METHODS ARE INACCURATE OR INCONCLUSIVE

Urine testing methods used confirm a UTI have been found to be unreliable. That includes the dipstick test done in the office and the urine cultures sent out to labs for analysis. Both of these tests rely only on visible inspection to identify the presence and type of bacteria. So, many patients are often mis-diagnosed, given the wrong treatment and continue to suffer.

Interstitial Cystitis Is A Great Example of Poor Testing

A classic example of the limitations of testing is the mis-classification of patients who have all the symptoms of a UTI (urinary pressure and urgency, pelvic pain, etc.), but do not have any apparent bacteria in their urine. They are relegated to a condition called Interstitial Cystitis (IC) for which there is supposedly “no known cause or cure”. Dr. Malone-Lee, author of the book “Cystitis Unmasked” debunks this theory. His research over several years has been focused only on patients with IC, and he has proven that that this condition is just another form of a UTI and can be treated effectively. However, he is using unique testing methods not used by others in the medical field, including: confocal immunofluorescent microscopy; urinary cell cytology; and morphology.

The Latest Testing Sounds Great, But Does Not Help With Treatments

Many of the chronic UTI patients talk about the latest testing from MicroGenDX which uses “next generation sequencing” (NGS) and the patient’s DNA to report on details such as bacterial load, fungus which may be present, and genes which may be causing resistance to antibiotics. The limitation of this testing is that that while it provides very detailed information, most doctors don’t have the clinical evidence on how to treat many of the organisms and anomalies that are discovered.

4. EMBEDDED BACTERIA ARE THE ROOT CAUSE OF RECURRING INFECTIONS

Floating E Coli BacteriaEmbedded bacteria are causing this cycle of continuous UTIs, yet the medical community does not know how to detect them or eradicate them.

What is an embedded UTI? When the E Coli bacteria first enter the urinary tract and bladder, they are described as “planktonic” or what we call “floaters”. They are present in your urine, and if you drink enough water or take some of the newer natural supplements, you may be able to flush them out of your system without antibiotics. But if the symptoms persist after a few days, you will likely get an antibiotic to kill these “floaters” – and that should be the end of the infection.

In Most Cases, The Bacteria Are Not Gone After a Course of Antibiotics – They’re Hiding

But for 8 out of 10 women it is not; according to a publication by the National Institutes of Health, more than 80% of all chronic infections involve biofilms. In these cases, some of the “floaters” have burrowed into the lining of the bladder where they become “nesters” or embedded UTIs.

The process that the “nesters” use to protect themselves and communicate with other bacteria on ways to evade medical treatment is a bizarre sci-fi story worthy of another entire blog.

In summary the bacteria take two approaches to dis-arming the effects of the antibiotics:

  1. Biofilms: they surround themselves with slimy “sacs” after burrowing into the lining of the bladder which they use to prevent the antibiotics from penetrating; and
  2. ESBL’s: they produce enzymes called extended-spectrum beta-lactamases (ESBLs) that break down and destroy some commonly used antibiotics.

Embedded UTIs Are Incredibly Difficult To Diagnose – Work Is in The Infancy Stages On This

But because they are so hard to detect and disrupt, only the most sophisticated laboratory equipment and testing is able to show their presence and how they work to continuously destroy the uroepithelial cells in the bladder.

This level of exploratory lab work is discussed in detail in Dr. Malone-Lee’s book “Cystitis Unmasked”. There are very detailed micrographs and illustrations which show how these germs stealthily go about their destructive work. You can actually see the white cells attacking these parasitic microbes, while some bacteria are seen to be escaping and coating themselves in protective cell membranes!

So yes, the biofilm hypothesis is real, and the ability of these bacteria to cause other problems such as “cystitis cystica”, abscesses and even hemorrhages within the bladder is now understood.

But seeing these images makes you want to cry, because you know that the ongoing destruction is causing significant pain in thousands of women who have no answers.

Most women in the discussion groups have tried just about every urinary tract diagnostic test that exists to identify these embedded bacteria to little avail, including:

  • Renal tract ultrasound scan
  • Cystoscopy
  • X-rays
  • CT Scans
  • MRIs
  • Urodynamic testing
  • Bladder biopsies
  • Blood tests

And, of course, they have also tried other types of tests to determine whether the problem might be fungal, vaginal, intestinal or even some type of autoimmune condition.

5. THERE IS SOME GOOD NEWS – SAFE AND EFFECTIVE TREATMENTS ARE NOW AVAILABLE TO FIGHT CHRONIC UTIS

Now that we know about “floaters” and “nesters”, we can understand that what’s needed is a “one-two punch” approach, that is, one treatment that gets rid of the “floaters” and another one which ensures that the “nesters” are eliminated.

There are four proven treatments which have been written up in National Institutes of Health (NIH) PubMed medical reviews.

They are:

  1. Antibiotics Plus Methenanime
  2. D-Mannose Natural Supplement
  3. Antibiotics Plus Cranberry Natural Supplement
  4. D-Mannose Plus Cranberry Natural Supplement

There are also a variety of natural alternatives which have worked for UTI sufferers, but have not yet been evaluated by the medical commmunity.

1. Antibiotics Plus Methenamine

Women are actively talking about the fact that Dr. James Malone-Lee is successfully using antibiotics followed by an anti-bacterial known as methenamine. His treatment protocol is to verify the presence of a UTI using indicators which go far beyond the typical test for bacteria, such as: cytokines, IL-6 and lactoferrin.  The treatment is also long-term (sometimes over 12 months) and systematically monitored for progress at intermittent stages using the lab testing methods he has developed.

The antibiotics used are selected from the traditional line of drugs: Cefalexin, nitrofurantoin, trimethoprim, etc. and used based on the patient’s tolerance first, then efficacy.

Methenamine, which is sold under the brand name Hiprex, contains two antibacterial elements:  methenamine and hippurate.  It is also an antibiotic and is available only with a doctor’s prescription.

Methenamine has been used by doctors for decades, but it is only prescribed after other antibiotics have been taken and is used only to prevent recurring UTIs; it is NOT used to treat an active UTI.

The way it works is to make your urine acidic.  As we have shown in other articles, when bacteria are present in urine, the pH level becomes less acidic and more alkaline.  So, by turning to formaldehyde, methenamine makes the urine less hospitable to any incoming bacteria.

Dr. Malone Lee’s practice is to gradually reduce the antibiotics and continue the methenamine for an extended period of time until all pyuria indicators have disappeared.

2. D-Mannose, A Natural Supplement

Doctor Jonathan Wright, Doctor Jonathan Wright, Medical Director of The Tahoma Clinic, a graduate of Harvard University and University of Michigan, has been using D-mannose to treat patients with urinary tract infections since for over 30 years. He says “Since the 1980s D-mannose has eliminated UTIs in 85-90 percent of all of those I’ve recommended it to.”

D-Mannose is a rare sugar, a close relative of glucose. It is a natural supplement extracted from fruits such as cranberries, blueberries, peaches, apples and oranges and converted into a white powder form. It is most effective against the E Coli bacteria which represents 80%-90% of all UTI’s.

The E Coli bacteria attach to the cells lining the bladder using “fimbriae” or hairy, finger-like projections. On the tip of these projections is a glycoprotein called a “lectin” that is programmed to bind to the first mannose sugar molecule it finds. Because mannose is naturally present on the surface of the bladder lining, these bacterial fimbriae are able to cling to the lining with a tight grip, prolonging the UTI symptoms.

When D-Mannose powder is consumed with water, its sugar molecules cause the bacteria which are attached to the bladder lining to let go, to bind themselves to the molecules, and to be flushed out with urine.

D-Mannose not only eliminates the “floaters”, but also deals with the “nesters”.

A recent article in the Antibiotics Journal in 2021 entitled “Role of D-Mannose in the Prevention of Recurrent Uncomplicated Cystitis: State of the Art and Future Perspectives” supports the efficacy of D-Mannose with the following statement: Particularly, our findings support and confirm that D-mannose reduces the incidence of rUTIs (recurrent UTIs) and determines a longer interval between UTI episodes, with a significant improvement in patients‘ quality of life, and therefore, its administration could be considered as one of the possible strategies to be used or to be investigated for the prevention of recurrent UTI in women.”

3. Antibiotics Plus Cranberry Natural Supplement

Another recent approach is to use antibiotics to kill the “floaters”, followed by a very strong dose of cranberry natural supplement to attack the “nesters”.

Cranberry, really? For years, many women have said that cranberry helped them recover from a UTI. But this natural supplement received mixed reviews regarding its efficacy in the medical and scientific studies for decades.

Then, in 2018, a scientific review of non-antibiotic options for treating UTIs entitled “Non-Antibiotic Prevention and Management of Recurring Urinary Tract Infections” produced two very positive facts about cranberries:

1) The key ingredient in cranberry that works to clear UTIs is called proanthocyanidins, or PACs.

Originally it was thought that because cranberries are acidic, they helped to bring down the pH level in the urine which was made too alkaline due to the presence of E Coli bacteria.

It was then discovered that it was the PACs in cranberries which were inhibiting the motility of E Coli bacteria, as well as preventing the bacteria from attaching to the urothelium lining of the bladder. The fructose in cranberries inhibits the adherence of type 1 fimbriae (similar to D- Mannose) and the PACs affect adherence of P-fimbriae which are more virulent.

2) At a certain strength, PACs can be as effective as antibiotics

According to an article in Nutritional Outlook, a Cochrane review showed that 36 milligrams of proanthocyanidins per day is required to be as effective as a low-dose antibiotic for UTI prevention.

But not all forms of cranberry will contain sufficient amounts of PACS to be effective against UTI bacteria. According to an article in HuffPost, only 1 out of 7 cranberry supplements had the required daily amount of PACs in a test conducted by a urology team at Weill Cornell Medical College in NY. So, it’s important to check the concentration of PACs.

4. D-Mannose Plus Cranberry Natural Supplement

D-Mannose prevents the adhesion of “type 1 fimbriae” which are associated with infections which are limited to the bladder. Cranberry PACs are most effective with “P-fimbriae” which are seen in cases of the more serious ascending urinary tract infections or pyelonephritis. Thus, it would seem that having both natural supplements working together to fight UTIs instead of taking antibiotics would be the optimal solution.

A PubMed article last year reached the following conclusion about the combination of D-Mannose and cranberry extract: “the association of D‑mannose with cranberry extract showed a promising adjuvant effect on empirically‑treated uncomplicated UTI episodes. The cure rate in patients with resistance to the antibiotic of choice was significant when the study medication was associated.”

In addition, in an article which compared the combination of D-mannose and PACs to a cranberry supplement with PACs alone, the finding was that the combination was superior, as follows:

“D-mannose with PAC worked significantly better in comparison with PAC alone, without differences in side effects in the two groups of patients examined. Therefore, considering the last two RCTs (clinical trials), we can affirm that D-mannose should be preferred to PAC for a nonantimicrobial prophylaxis of women with recurring UTIs.”

Other Natural Alternatives That Have Worked For Chronic UTI Patients

And last, but not least, there are anecdotal examples from women in the discussion groups about natural alternatives that they have tried which have provided relief.

The sad fact is that there have not been any significant clinical trials here in the US which have documented the safety and efficacy of natural alternatives to antibiotics; most of this work is occurring in the UK and Europe. Without clinical trials, the FDA will not approve natural supplements as remedies for UTIs and so medical doctors will not recommend them.

Therefore chronic UTI patients are left no choice but to try and find what they can on their own. The list below is not meant to be a comprehensive representation of all of the options that we’ve heard mentioned.

We plan to research several of these options and provide more information in a subsequent blog.

  • Apple cider vinegar
  • NAC, N-acetylcysteine
  • Tumeric with curcumin
  • Colloidal silver
  • Monolaurin (helps with non-E Coli infections)

It’s Time For The Medical Community To Pay Attention To These Women

In summary, the medical and scientific community should be listening to the thousands of chronic UTI sufferers who are deeply knowledgeable about their condition and treatments.

Instead of limited clinical trials of short duration and insufficient human sample, why not create a longitudinal quantitative tracking system with these women as panel members to guide the development of new treatments for UTIs?

In a world in which almost all of the research to data on this topic has been conducted “in vitro” (in petri dishes or test tubes), these women represent an incredibly large “in vivo” (living human organism) intelligence system.

Billions of dollars are being spent every year treating the same patients over and over again, both on an outpatient basis and in hospitals. Something needs to change.