Judging Risk with Fluoroquinolones

[nikolayv]

Hi, first post!

Brief background: I've had some pain of 16 years, mild at first and then severe since 6 years ago.

I've tried just about everything, but somehow my first urologists (in the San Francisco Bay Area of all places) did not test my prostatic fluid.

Just a single-cup urine test IIRC, some standard cultures I imagine (didn't keep note yet back then), which was all clear. They did give me Cipro twice for ~10 days each (again presumably the standard regimen). Which made no difference and had no [immediate?] side effects

Fast-forward 5 years of failing to improve with any treatment even a bit (first was 5 months of PFPT at the Stephanie Prendergast's center — by then it was Rachel Gelman): I get tested in Bulgaria (where I'm from) and they find a bunch of leukocytes, as well as E. coli (“moderate” amount) and Enterococcus faecalis (rare).

The docs here want to give me IV levofloxacin or imipenem (when I suggested I has concerns about fluoroquinolones).

One guy (infectious disease one specializing in Lyme and such) says imipenem is really heavy, “for those facing death”. But completely dismisses any floxing concerns.

Meanwhile, during my search, I did get an hEDS diagnosis since I also have hand pain and a bunch of other tissue findings that together were judged by an expert (Dr. Henderson — a surgeon) to constitute a positive diagnosis.

So at this point my quandary is:
- Do I take yet another risk and do 10 days of IV levo 2x a day?
- Do I try alternatives like Bactrim first? Is it worth delaying months to try phages first?

In conjunction, they want me to do shockwave with the goal of shaking up a calcification they claim to see in my prostate with ultrasound, that in theory may be harboring more E. coli or maybe something else.

[nikolayv]

Update: This guy is apparently big on imipenem. Says he’s confident from clinical experience that it penetrates the prostate better and is more effective in that application than levofloxacin.

Acknowledges the baseline stuff I expect a urologist to acknowledge: It’s a tough condition, and the longer it’s left untreated, the more difficult it gets to treat due to sensitization.

Unfortunately claims there’s not published stuff on prostate penetration. But in reality it’s easy to find just about any claim in published literature. Bactrim was allegedly the drug of choice according to an article I read from the ‘80s. Then I read in more recent ones that most studies are done with dog prostates, which are more or less acidic than human ones (I forget which), and that even across humans acidity of the prostatic fluid is pretty variable, and it is the main factor that affects permeability.

[webslave]

Leukocytes mean nothing. Plain inflammation can produce them in copious amounts. And your cultures are unremarkable.

Chronic bacterial prostatitis looks nothing like the pain syndrome you are showing.

How many uros have you seen? And how many have diagnosed a chronic infection? And who is the guy seeing you now, who wants you to take this heavy-duty IV antibiotic used for rare infections?

[nikolayv]

Plain inflammation can produce them in copious amounts.”

So what would this inflammation be caused by? I’ve had years’ worth of bloodwork and MRIs, and nothing anywhere has indicated inflammation besides my prostate secretion. Urethral secretion and sperm didn’t have many, but in the prostate, they’re concentrated.

I’ve seen 3 urologists in the US, one early on who said this was prostatitis and gave me the oral Cipro, and then him and everyone else just said, “go do pelvic floor PT and try other stuff”. In Bulgaria I’ve seen 2 urologists and one infectious disease doc. They would all do antibiotics. One is of the Guercini et al. school and wants to do prostate injections and some pretty insane stuff like a hard metal catheter to shine red light lasers onto the prostate.

I saw another in Russia, who doesn’t think that microflora is relevant either. He does this intense massage based on a different theory, and I didn’t think he judged my individual case too much.

I did some research into how they treat in Germany and it appears to me they’d recommend the same.

Honestly, I’m aware of the various studies that indicate that infectious origin is rare, but a. I’ve failed every single thing under the sun except for neuropathic medicine, and b. these are, after all, microorganisms that are often found in people when it’s more obviously an infection driving the symptoms. My own mother had pain with a burning urethra that was diagnosed and quickly treated here in Bulgaria as E. coli. I believe with levofloxacin.

So I personally would love to see these leukocytes and E. coli go away before I try e.g. PFPT yet again.

And your cultures are unremarkable.

Are E. coli and Enterococcus considered part of the regular microbiome there now? How substantial is the evidence to ignore them entirely? I see that Dr. Shoskes in 2021 still thought that “if there is anything there, I certainly think it should be addressed”.

[webslave]

Firstly, if you truly do have Hypermobile EDS, then you should know that one of the major symptoms is chronic muscle pain. So there's the pain factor, your chief concern.

Moreover pelvic nerves can cause inflammation in the prostate. Have you read this?
https://ucpps.men/viewtopic.php?t=9341

Take your time, read it slowly.

You are seeing 3rd rate doctors. Stop. Take a break. You need to do more thinking about this, more learning, and less medicating.

Regarding E. coli, it is part of the normal microflora, but it's all about numbers. What did the test say, 10^x where x is what?

[nikolayv]

Unfortunately I think there’s also a ton of wishful diagnosing going on with EDS too.

I have muscle pain but my joint hypermobility is fairly limited and is not where the pain is. Certainly the pudendal part doesn’t add up.

Yes, docs here are working with older/divergent algorithms, but I’ve been a patient at UCSF, Stanford, and HSS for many years now with abysmal results. Mayo was useless.

I just signed up for Cleveland Clinic hoping that whoever replaced Dr. Shoskes will have half the experience.

The hEDS route has been a dead end and a poorer fit.

That’s getting ahead of myself though. I’m going to post separately with more info on my findings so far to seek advice on my general strategy.

What did the test say, 10x where x is what?

Unfortunately they sometimes report in this weird scale here. Leukocytes = “massive” (I think that’s the top order of magnitude), E. coli = “moderate”. I’m going to call the lab on Monday to clear that up.

Have you read this?

Starting now, thanks.

[nikolayv]

Moreover pelvic nerves can cause inflammation in the prostate. Have you read this?

Ok, read the section on urogenital inflammation a few times.

Fair enough. Though I will say that there’s no one study there that showed stressing the pelvic floor creates specifically a ton of leukocytes specifically in the prostate.

The closest I saw was redness and swelling in bladder (presumably leukocytes) in murine model.

In my case more specifically, the leukocytes aren’t anywhere but the prostate, it’s not simply mast cell activation or interleukins, and I’ve fared as poorly as one could with PFPT and self-treatment with wands and myofascial tools (under guidance during my PT).

Finally, I did have some unprotected sex the year before my symptoms went from minor to severe.

I’ve been in fact very selective with medicating and procedures over the six years of severe pain.

The EDS experts sent me away and said, “This is not exactly EDS pain. Keep looking.” So that’s what I’m doing. Vascular workup in parallel.

Dr. Shoskes says himself in his 2021 prostatitis Sufferer interview, and I’m slightly paraphrasing, “If we find something significant in the prostate, I do think it’s important to treat it.” And he’s obviously against over-treating with antibiotics.

I’ll be checking next what exactly my level of E. coli is and what’s known to be there as a rule.

By the way, I noticed the preference for keeping infections related subjects to a subforum. Feel free to move if it’s not an illustrative discussion.

[webslave]

Try to keep your case in one thread for the sake of others who like to read a case history from start to finish.

[nikolayv]

OK, noted. It’ll mainly be the other one I just started then since that was the intention there.

[nikolayv]

Regarding E. coli, it is part of the normal microflora, but it's all about numbers. What did the test say, 10x where x is what?

To close the loop on testing:

For the cultured E. coli, there's no orders of magnitude for prostate secretion at this lab. Their lab kit doesn't do it I guess. (They are able to report it in urine and ejaculate).

Does anyone reading this know what the 2022 gold standard is for this kind of test?

I actually also do have a DNA mass thing of an ejaculate sample that they do report with orders of magnitude. There they don't test for E. coli, but the Enterococcus faecalis that was in the prostate secretion in "rare" amounts is also in the ejaculate. It's reported as 10^4.1, or 40-53% of the total bacterial mass. Which is read as "moderate dysbiosis". So nothing spectacular, which makes sense given the lack of fevers and such, but technically something is there...

A separate ejaculate analysis I had done at a Russian lab found "a possible subacute inflammatory process with T. Vaginalis" and the T. Vaginalis they found were "a degenerative form". The lukocytes were not as dense as in my prostatic fluid. The lab tech said "this is an old infection", but they couldn't rule out its viability because of limitations with their culture kit. I think most likely there's a little bit of it since I've had barely any sex in years. But as it was not detected in a PCR of my prostatic fluid in Bulgaria at all, it's probably unlikely to be a concern.

[webslave]

You simply don't have the profile of an infection. Forget about it. Your case is classic UCPPS in all probability. The fact that it has persisted for years, worse post-ejaculation, worse with stress etc etc, it's all just typical.

Stop looking for causes and start looking at how to get rid of it. Lots of things to try besides pelvic PT
https://ucpps.men/viewtopic.php?t=9338

[nikolayv]

Tried just about everything on that list and have been doing the few helpful things for years. Will try the few I haven’t, obviously, though to be honest I see nothing there to make me hold me breath. Botox is a major one because it’s been suggested on occasion but a. I see a lot of people bitterly regretting it, and b. it was last determined by my pain management doctor and pelvic floor PT that I was unlikely to benefit since my muscles didn’t seem particularly tight and I never got relief from PT or baclofen. I’ll reevaluate as part of seeing other PTs since I can’t square the lack of hypertonicity against symptoms like post-ejaculatory pain and the lack of response to nerve blocks.

Unfortunately I think most likely my muscles are not super tight, but the area is so sensitized that a small amount above a pretty low tone causes a lot of pain. It’s the group in Jason Kutch’s research that gets more and more centrally sensitized over time on any of turn currently available treatments.

I’m hardly “looking for things that caused it”. My understanding is quite sophisticated, and I’m rapidly progressing in my symptoms.

On the actual original question here, for anyone following, I ran my concerns with a longtime doctor of mine in the Bay Area with a very long wait, who incidentally specializes in MCAS, tick borne diseases, and some other related stuff. Their opinion was a. they’re conflicted on fluoros because they’ve used them for decades (the older generations) and they’re generally very effective; they’ve only ever had a couple of people with the tendinitis issue. Older folks. But they’re aware of tendinitis reports and the FDA warning obviously. b. imipenem also works fine, but it’s more of a wider spectrum, hence some people have more concerns with it. c. a 10-day antibiotics course was not at all unreasonable given my history, if it’s never been done. They said E. coli and Enterococcus are fairly easy to clear in the grand scheme of things (they’re probably implicitly thinking relative to e.g. Lyme.)

But they’re my doctor and have my compete relevant history. So don’t apply to your case, or only as input to take to your own doctor.

[nikolayv]

Oh, the biggest point of concern for *that* last doctor seemed to be creating an opening for a C. Difficile colonization with any course of antibiotics over a few days. There's some strategies to prevent that that I won't go into.

[webslave]

I find it hard to believe that your "understanding is quite sophisticated" and yet you have not had a PCR test to clearly delineate the possible E. coli issue, and yet at the same time you are considering using obscure antibiotics to combat this supposed infection.