My experience with a cystoscopy

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Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

My experience with a cystoscopy

Post by Cobwebby » Fri 8 Aug 2014 3:22

First of all, let me tell you that I had full view of the screen as the scope snaked its way up the urethra and into the bladder-really cool. I feel as if I have bonded with my bladder on a whole new level, even in its dysfunction.

Unfortunately, today's scope was purely for a 'look-see', with no intent to biopsy. Why bother I wondered?

I sat upright in a wingback chair, placed my feet on two footrests, and with the push of a button I was bottom up. Almost felt like an amusement park ride it went so fast, wondered where my safety belt was !

A bag of saline solution hung from an iv pole attached to a catheter which was used to inflate my bladder for better viewing purposes.

If you ask me, I thought it looked like a very angry bladder, red streaked and raw, but the doctor did not seem as concerned about that as she was about the lesion even my layman's eye could see. Pictures were taken, but I was not given a copy to bring home(and post for your edification)shucks

As relates to Lyme Disease. Prior to the exam and learning that only pictures, not biopsies, would be taken, I asked if a tissue sample could be tested for Lyme Disease since the chronic, recurring UTIs, spasms, incontinence, bleeding all developed soon after my diagnosis.

She seemed a bit taken back and said I would have to consult an Infectious Disease doc on that matter. She wouldn't have any idea how or where to send such a sample or what to do with the results-and that , even as a urogynecologist she was not aware of Lyme Disease having ill effects on the bladder.

However, and this is where it gets interesting, I can have a clean dip stick in the office and still culture a bacterial infection from a lab specimen. She confessed that this was a very rare event-which is when I jumped in and pointed out-and yet possible, as it was in my case- perhaps as rare as it may be for the bladder to harbor Lyme disease, it is still possible. Here is where she backpedaled and stated that perhaps the dipstick was faulty!

Not sure if you can still follow me here.
As far as the lesion is concerned, she referred me to a urology specialist for another procedure and whatever treatment may be necessary for it.
And for the baffling ongoing infections/dysfunction-without calling it lyme disease, I may be treated with long term antibiotics-6 months to try and knock it out .
I asked again if the specialist was doing biopsies perhaps he would send one out for lyme testing, she said that was up to him but he would probably have to check with the IDS.
I asked her if I were to do further research and send her articles about lyme disease and the bladder if she would consider reading them because I believed lyme disease could be a very important piece of the puzzle. She agreed to read them-although on a side note- she is about to have a baby in sept. so priorities may pre-empt my concerns.

Meanwhile, I'm thinking , okay, they (professionals) are willing to concede that some patients have a need for ongoing antibiotics , and yet when an explanation so obvious is presented to them, they shrug and say -NAH I don't think so, never heard of it, without further investigation.

So where would a urine specimen be sent for LD testing? CDC? Igenex? LabCorp? All of the above?- HA! Now that would be interesting.

Thanks for listening. I always like to tell a good story-especially when it is mine!
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: My experience with a cystoscopy

Post by RitaA » Fri 8 Aug 2014 6:55

Thanks for sharing, Cobwebby.

I've sent you a PM with links to some images to see if any of them resemble what you saw today during your cystoscopy. If so, feel free to share the links here. Even if the images that I've sent look similar to what you saw today, a urologist will still need to do a biopsy to be absolutely certain of the diagnosis and to figure out a treatment plan.

I just took a quick tour of the internet, and there are indeed cases where the dipstick is negative even when a culture and sensitivity test prove otherwise. I didn't realize until now that there are a variety of dipstick tests for doctors to chose from, and they don't all check for the same clues (and that's all they are) when it comes to a patient having an infection.

My husband was treated for several months with Cipro to clear a stubborn UTI that kept recurring. His family doctor just kept prescribing short courses of antibiotics until it became clear even to her that this approach wasn't working. The urologist didn't hesitate to prescribe a long course of antibiotics that did the trick. Hopefully that approach will work for you as well.

Edited to add:

Here's the source of my information regarding dipstick testing, etc.:

http://www.uspharmacist.com/continuing_ ... id/106254/

[snip]
Table 3 Select Dip-and-Read Test Strips
[snip]
Uses of Dip-and-Read Testing

Urinary Tract Infections: UTIs are characterized by an increase in the enzyme LE, nitrite, and protein levels. LE is a component of white blood cells that is normally found with bacteria, and nitrite levels rise in urinary infections since the pathogens reduce urine nitrate to nitrite.12 Most dipsticks test for at least two of these chemicals depending on the brand used.

Numerous studies, meta-analyses, and reviews have been conducted to determine the accuracy of dip-stick testing for UTIs and compare the reliability of reagent strips to culture assays, but there remains a discrepancy over the results. Yuen et al reviewed the use of leukocyte esterase dipstick testing in children and concluded that it should not be used as a replacement for microscopic examination.13 Conversely, a recent meta-analysis showed that a true negative can be concluded if both nitrites and leukocyte esterase test negative with a dipstick test.14 Moreover, Gorelick and Shaw demonstrated that the results of a dipstick analysis for both nitrite and leukocyte esterase are comparable to those of a Gram stain test and “superior to a microscopic analysis for pyuria.”15

However, in patients with a high risk of contracting a UTI, it has been shown that a negative urine dip-stick test does not rule out the possibility of an infection.16 More specifically in the long-term care setting, high rates of false-negative results for LE and nitrite with dipstick tests have been demonstrated.12 With an aim to overcoming this discrepancy, Mariani et al have proposed a protocol to determine which results of screening urine specimens that are positive on a dip-stick culture would be confirmed by a properly performed microscopic urinalysis.17

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: My experience with a cystoscopy

Post by duncan » Fri 8 Aug 2014 13:22

Cobwebby, that you had the poise and presence to even suggest a tissue sample for Lyme is extraordinary!

And an excellent idea.

I recently had a colonoscopy and they biopsied something like 15 polyps. I should have asked them to check for Lyme. It never entered my head. I wonder if that extra lab would have been covered by insurance, or if it's state coverage, whether it would have been approved.

The idea of whenever possible having tissue for an unrelated process checked for Bb (where it makes sense) is a pretty good idea, imo. If it's not cost prohibitive, and if I can remember, I intend to make it SOP.

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: My experience with a cystoscopy

Post by Cobwebby » Fri 8 Aug 2014 16:03

Rita- thanks for trying to find my bladder on the internet. The images you sent do not quite represent what I saw. The lining of my bladder was streaked with blood vessels, but the lesion itself looked more like a smooth white bean -or as later discussed with doctor-like a polyp.

She did not think this lesion was the cause of my symptoms, but something found incidentally during scope. Left me to wonder with all the hype about getting colonoscopies to find colon cancer early, why don't they promote routine cystoscopies?
I'm beginning to feel a bit of gratitude for my LD if it leads to early detection of other diseases.

Duncan-As a lyme patient rendered disabled by neuroborreliosis , to have regained any measure of clarity or cognitive function is remarkable. It has enabled me to be more of my own advocate. I was so weakened before, I couldn't even come to my own defense.

What astounds me is that , at least in my circle of mainstream doctors, there is still such resistance to the potential impact of LD on both physical and mental health.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: My experience with a cystoscopy

Post by Lorima » Mon 11 Aug 2014 3:04

This is interesting. I was under the impression that the bladder is frequently a site of Bb infection in mice, but of course that is an early infection, not a many-years-long one. Igenex used to (still does?) offer a test for Bb antigen in urine, but again maybe it was only useful in early infection, or in people with suspicious bladder symptoms following LD infection. (Which it sounds as if you have, Cobwebby.) Of course this is one of the tests, and labs, of which the IDSA, and all their followers like the CDC, etc., disapproves, so if your doctors are conventional, they would never order it. Even if they weren't convinced by all the propaganda that it's quackery, they'd be worried that if they ordered it, they'd be ridiculed or worse by their peers and overseers.

I doubt it would be possible to get any kind of biopsy checked for spirochetes, except under some kind of research agreement, and even then I don't know who could do it. Obviously, you wouldn't want any of the mainstream/IDSA labs doing it; they specialize in not finding, spirochetes. (I wish that were a sarcastic joke, but I suspect it is literally true. Though I think it's probably unconcious - they are so sure that they are not there, that they couldn't see them even if they were. See the story about H. pylori, below.)

I couldn't even get my doctor interested in helping me find out what kind of LDL (the good or the bad kind) account for my high LDL cholesterol, to help me decide whether to take a statin. There was no box to check on her form, so she said she didn't know how to order it, and didn't offer to find out. Apparently it's discouraged to do anything that isn't on the standard lab form - and of course it's more bother, and more expense - so why would she?

So who would have the necessary skill, experience, and willingness to help with a Bb-focused biopsy? Certainly it's not any box you can check on a form to submit to a lab, and to the vast majority of doctors this makes it out of the question, to even try. Aside from the bother, you all know how they've been indoctrinated about any test that is "unvalidated." Apparently some senators (including, incredibly, Blumenthal) are even interested in passing a law to crack down on "unvalidated" diagnostic tests. Checking a biopsy for spirochetes is the mother of all such unvalidated procedures. Yes, I know doing such a biopsy is glaringly logical, scientifically. But that's irrelevant, medically.

The best you could do is find out how to preserve the sample, get the doctors to do it and to give it to you, and beg Dr. MacDonald to section and stain it for you. You'd have to mail it yourself.

To put this non-finding of Bb in tissue specimens, by IDSA-influenced labs, in perspective, there's an excellent book called Catching Cancer by journalist Claudia Cornwall, in which she interviews the scientists who discovered bacterial or viral causes of cancer, and in each chapter she describes the push-back the scientist got from other doctors trying to save the status quo. Barry Marshall, who discovered that Helicobacter pylori was a common cause of ulcers and their associated cancers, tells about showing a respected, experienced colleague a microscopic slide showing the spiral bacteria in a biopsy sample, and the colleague simply could not see it. Marshall, an independent thinker, was astounded, it was so obvious to him. Presumably the colleague was not expecting to see it (because it went against the dogma of the day), and didn't believe he would, so he actually, physically, could not see it.
"I have to understand the world, you see."
Richard Feynman

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: My experience with a cystoscopy

Post by Lorima » Mon 11 Aug 2014 3:13

Cobwebby wrote:
"What astounds me is that , at least in my circle of mainstream doctors, there is still such resistance to the potential impact of LD on both physical and mental health."

Cobwebby, it saddens me, but it doesn't astound me. The dogma in the medical books and guidelines still says that LD is a fairly trivial disease, hard to catch and easy to cure, and that neuro and "post-treatment" symptoms are rare. And the leaders in the field keep publishing prominent articles saying that the patients and doctors who say otherwise, are deluded. So of course, the mainstream doctors all believe the "experts" rather than the patients - that's what they've been trained to do.
"I have to understand the world, you see."
Richard Feynman

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