Gaslighting in Medicine, I’m Sorry!

Gaslighting in Medicine, I’m Sorry.

 

Several years ago I was speaking with a friend of mine who is in an MD-PhD program. He told me the sad story of a friend who was in a 10 year relationship poisoned by gaslighting and the long road to recovery this friend had. I had never heard the term before so he explained it to me. Gaslighting “is a form of psychological manipulation in which a person or a group covertly sows seeds of doubt in a targeted individual or group, making them question their own memory, perception, or judgment.^[1] It may evoke changes in them such as cognitive dissonance or low self-esteem. Using denial, misdirection, contradiction, and misinformation, gaslighting involves attempts to destabilize the victim and delegitimize the victim’s beliefs.”

 

I’ve thought about this relationship many times since then and how it relates to the practice of medicine. Specifically, in the field of Chronic UTI’s, Embedded UTI, Painful Bladder Syndrome and the variety of other names and diagnoses given to these patients who suffer with this problem.

 

I used to be guilty of this. A woman would come in with frequency, urgency, and dysuria, sometimes pelvic pain or other symptoms. I would look them in the eye and say, “your urinalysis and urine culture are negative, you don’t have a UTI”.  Or a man would come in and I would teach them about non-bacterial, inflammatory prostatitis.  I would tell him why antibiotics wouldn’t work and prescribe a course of sitz baths, anti-inflammatories or whatever else I was pacifying patients with at the time. I went to UCSD medical school so I had a significant exposure to Interstitial Cystitis (IC). I might try Elmiron, Physical Therapy or intravesical instillations. A lot of patients responded and I thought I was doing the right thing.

 

Sometime in the 2014-15 time frame a patient showed up in my office with a Pathogenius report. His primary care doctor had ordered it based on the patient’s research but didn’t know what to do with it. It was the predecessor to the MicroGenDx test. He had all the symptoms of prostatitis but his urinalysis and culture were negative. His Microgen test on the other hand showed a + PCR showing bacterial presence and there was something called next gen sequencing (NGS) confirming this. My mind was racing. I’ve been taught that cultures were definitive. Sure, I knew that fungus, viruses and other microorganisms don’t grow on culture and that there are bacteria that didn’t grow out on culture (GC, chlamydia, Mycoplasma etc). But if your culture and STI test were negative you didn’t have an infection, right?

 

I began ordering this test on patients with symptoms but negative urinalysis. Over 50% were positive for infection and many responded to the correct antibiotic. I checked more patients I had diagnosed with chronic prostatitis, IC and pelvic floor dysfunction. Yes, yes and yes. The more patients I treated the more patients showed up. My eyes were being opened. A little while later I was able to meet Rick Martin, the CEO of MicroGenDx, over dinner. This was all starting to make sense.

 

 

Despite changing my mind about the pathology of chronic or recurrent UTI, pelvic pain, IC etc I was still not having success with treating every patient. Patients who didn’t respond to longer term antibiotics. I even tried putting some antibiotics directly into the bladder with intermittent success. Rick had introduced me to Ruth Kriz, a NP in Washington, DC who had been treating this problem for years. She was kind enough to give me a few ideas about treating some very difficult patients.

 

In 2018 I met a patient that I struggled treating. She had struggled with recurrent symptoms for over 40 years. During this time she never had a positive culture but would usually respond to antibiotics. At some point doctors wouldn’t give her antibiotics anymore because of negative cultures. She had cystoscopies, urethral dilations and was given multiple other treatments for her chronic pelvic pain. When I saw her, the urinalysis was negative, microscopy was negative and the culture was negative. Her MicroGenDx test show high counts of e. coli and klebsiella, 2 common uropathogens that “should have” grown out on culture. They were in high counts, millions of bacteria per milliliter! Unfortunately she had multiple resistances. That, in combination with some medical allergies led to no obvious oral or IV antibiotic alternative.

 

That’s when I tried one of Ruth’s suggestions, a combination of intravesical antibiotic and medications that help break down the biofilms associated with these multi-organism, embedded UTIs. It worked! I put her on a daily prophylactic dose and she was doing great. Later, we made the mistake of stopping this and symptoms recurred. She’s not perfect but she’s a lot better.

 

How many patients have I gaslighted? I have been guilty of asking the question, “Do crazy people get IC or does IC make patients crazy?” What I should have been asking is, “Have doctors driven this patient to the brink of insanity with incorrect information and outdated science?”

 

What tests are available?

 

There are many tests that use polymerase chain reaction (PCR) but you are limited to the panel they choose. Most of these will look for resistance genes which can be helpful but 40% of the time resistance genes don’t match real world sensitivities (That’s a whole other discussion). Two tests that stand out to me for the extra information they provide are MicrogenDx and Pathnostics Guidance. Both give added information that can be helpful in treating recurrent UTI.

 

Microgen uses a limited PCR panel looking for the most common bacteria and fungi. They also check for resistance genes. Their real value is in their next gen sequencing (NGS). Here they scan the urine for all genetic information and compare it to a huge database of all known bacteria and fungi.  I hit many home runs using this test. The downside is that some people are colonized with many non-pathologic microorganisms.  A provider can get more than a dozen microorganisms that they have never heard of and then not know what to do with it. I admit when I first saw the likes of finegoldia and faklovia I was doing a Google search while talking to the patient.  The provider has to be familiar with the common pathogens and be suspicious of others.

 

Pathnostics uses a more comprehensive PCR panel. This includes not only bacteria, fungi but some viruses.  Viral UTI’s are not thought to be commonplace but there are many papers discussing the possible pathologic effect of viral UTI’s.  I think this is very helpful but the most important part of pathnostic’s guidance test is their pooled sensitivity.  Using a patented technique, they test the sensitivity of a variety of antibiotics against the entire group of microorganisms. This is extremely beneficial when you’re dealing with polymicrobrial infections (some feel this is a many as 50% of UTI’s).

 

What is the problem?

 

Reliance on outdated testing. I remember on the first day of medical school our Dean of student affairs came in and said that half of what they would teach us will someday be proven false, they just didn’t know which half.  Despite knowing this providers are very dogmatic about what they tell patients.  Estrogen: it’s good, it’s bad, it’s good, it’s bad, it’s good in some people and bad in others??? The standard urine culture that we use has been around for over 70 years.  Urine is placed on an agar and it is watched for 48 hours.  Someone that looks at it and tells us what is growing and what it is resistant to.  Some of the problems with this are: 1) if one bacteria grows faster than all the others it will overwhelm the others and you will only see one bacteria. 2)  We know most microorganisms don’t even grow on this agar. 3)  There are many fastidious, or slow growing bacteria, that take longer than 48 hours to grow. These will never show up on a standard culture.  4)  Sensitivities are much more complex, especially when dealing with polymicrobrial infections. Information can be shared and between microorganisms that may not be seen on standard sensitivity tests. 5)  Many bacteria are closely related and there are times when the appearance on standard culture differs from the genetic information. You may be given the wrong bacteria ID because of its outward appearance.

 

Lack of understanding the problem. I don’t think we have a definitive answer to this yet. Some believe that these are simple UTI microorganisms that don’t grow out on standard culture. Others believe that these are an embedded UTI, bacteria or microorganisms that have grown into the tissue which makes them more difficult to treat.   Others believe it is a biofilm problem, groups of Microorganisms that work together to protect each other.  They share information including antibiotic resistance abilities and can layer on each other to prevent effective treatment by antibiotic.  Whatever the actual mechanism is I think the real problem is providers who are too quick to dismiss patients with UTI symptoms but have negative cultures.

 

Solutions?

 

So to any patient that has had UTI symptoms and I told them they didn’t have a UTI, I apologize! (These tests were not available during my training). I’m sorry I may have contributed to gaslighting you and making you feel you were “crazy”. Luckily if you suffer from recurrent UTIs or have recurring symptoms even though your provider tells you that there is no UTI there is hope. Find a doctor willing to listen to your story and order one or both of these tests. I suggest a urologist since you want to make sure you don’t have something else going on (bladder cancer, stones, urethral diverticulum, infected Skene’s gland etc). Be patient, it has probably taken years to get where you are, it will take some time to get you feeling better.

 

For more discussion about this topic check out www.mypurology.com or listen to my podcast, The Downstairs Doctor.