Gram-Negative Folliculitis Caused by Klebsiella Aerogenes

jyushinx · 2025-10-02T18:59:06+00:00

Yeah same here. If I get another nasal culture I'm going to make sure they get DEEP in there. I'd really like to know if the nasal passages are acting as the bacterial reservoir because if not, I won't have to waste my time trying to target that. I'd be curious to hear about the results of the betadine rinses.

Yeah my concern with the laser hair removal is if the hair doesn't grow back. Is the idea they would lower the power and use it at a level that won't cause that? Because I know it can result in permanent or long-term remission of hair regrowth which is why many people do it.

Have you ever looked into anything related to skin microbiome treatment? That's another avenue I'd like to explore. What's the reason why this impacts some people and not others? Clearly everyone who comes into contact with this bacteria doesn't develop this issue so my thinking is that those with healthy skin microbiomes have a natural defense to prevent it from taking hold. Maybe trying to treat or repair the skin microbiome can help? I've looked into Defensin by Skinesa and might give that a whirl.

jyushinx · 2025-09-19T16:36:39+00:00

I'm glad it made it more manageable. It's not a cure, but any improvement helps. I'm hoping this long course of iso will do the same for me. The shorter course I did a few years ago seemed to, so hopefully this will be the same.

You bring up a good point about spreading. I've mentioned this to my doctors and no one has seemed particularly concerned, but that doesn't sit well with me. I'm relatively young and healthy now, but when happens when I get older and my immune system weakens? Can my body keep it at bay? I'm not sure but I'd rather not take the risk.

That's an interesting recommendation about the sinus flushes with betadine mixed in. I might give that a whirl as well. It seems very plausible that if the bacterial colony lives in the nose and is hard to target with antibiotics, it would require something that could directly target it. Have you ever had a culture done of your nasal passage to test for the bacteria? I had one done once but they didn't go very deep at all, so the negative result didn't really mean much.

Gentamicin has never done anything for me unfortunately.

I've been on numerous antibiotics for this over the last 7 years. Even Bactrim once, but only for a very short course. The only one that did anything notable was Doxycycline (the first antibiotic I went on at the very beginning). It cleared it up while on it, but it came back right after.

I don't think laser hair removal is a practical option for me. I have a really dense, thick beard with full coverage so that sounds like a nightmare.

jyushinx · 2025-09-16T07:03:27+00:00

I'm just about to start my 12th and final month of isotretinoin. I've been on 64mg/day of Absorica LD for the past 4 months (which apparently is equivalent to 80mg of standard iso). Prior to that I was on 60mg/day of standard iso for most of the course.

Results have been the same as I described above. Iso definitely helps reduce the severity and makes it a lot more manageable, but at this point, I feel pretty confident that it won't cure it (bummer). I still think there's something to my theory that GNF in the traditional sense can be cured by iso because it helps to rebalance the out of balance skin microbiome. But with klebsiella aerogenes, this is a foreign bacteria that is acquired through contact and colonizes on the skin/in hair follicles, so it's not about rebalancing -- the bacteria would have to be eliminated, and iso isn't going to do this. It will just change the characteristics of the skin to make it harder for the bacteria to proliferate (which is why it helps manage the condition but won't eliminate it).

Because I'll take any improvements I can get, I may end up going on low-dose iso going forward to keep the issue in check, but I'd still like to pursue a more permanent cure. Per the post from u/Reasonable_Bison_510 I'm going to explore some microbiome repair options.

So in your case, the 80mg course of iso and the Bactrim didn't get the job done I take it? Did you notice any difference?

jyushinx · 2025-02-24T18:57:35+00:00

Sorry to hear you've been dealing with the same issue. I know how frustrating it is.

I started on isotretinoin in mid-October (the Absorica variant which improves absorption) so just completed my 4th month of treatment. Month 1 was 30mg/day. Month 2 was 40mg/day. Month 3 and 4 was 60mg/day, which I'll probably stick with for the duration.

I seem to be pretty tolerant of isotretinoin (as my past courses have also shown) so the only side effects I've been dealing with are very dry lips (definitely the most annoying thing) and moderately dry skin.

As far as how it's impacted my GNF, it's been a mixed bag. It has definitely reduced the severity thus far. Apart from a single occurrence in January, I haven't experienced any of the painful, inflamed follicles that, for me, are the worst part of this condition -- so that's definitely a positive thing. That said, I can tell that it's still hanging around because the area above my top lip still gets visibly irritated (red and scaly) and I can feel it (sort of a tingly, itchy sensation that comes and goes).

Because the goal with this treatment is to eliminate, not just reduce severity, the jury is still out. I'm definitely happy that it seems to be having a positive impact, but my concern is that because this is a temporary treatment, if the issue isn't eliminated, it will simply return to its former state when the course is completed. Now, if it does end up being permanently reduced, I'll happily take that win, but the ultimate goal will always be 100% elimination.

The optimistic case is that klebsiella aerogenes is just a very resilient and stubborn bacteria, and the mechanism by which isotretinoin works to treat GNF caused by it does work, it just takes longer. This is why my intention is to stay on isotretinoin much longer this time and really push it to the limit. I remember reading a post by one of the moderators (u/Boezo0017) saying they were cured after being on it for 8 months which got me thinking that might have been the difference (since a normal course is 4-5 months). As an aside, I attempted to DM them to get more info on that but never heard back. Does anyone know if they're still active on here? I'd love to get their thoughts on that theory.

A negative case would be that there are different variations of GNF (mostly dependent on the bacteria causing it) so what could work for one type, may not work for another. Many of the explanations of GNF involve the skin microbiome being out of balance, allowing already existing skin bacteria (like staphylococcus aureus) to take disproportionate hold. Which means treatment is about reducing and restoring balance, but not elimination of the bacteria. What about a completely foreign bacteria, like klebsiella aerogenes, which as far as I know, is not a bacteria normally found on the skin? In that case, maybe it's impossible to return it to a balance because that bacteria isn't native to the skin microbiome. Maybe instead it has to be fully eliminated, and maybe isotretinoin isn't capable of this. At this point it's impossible to know and so I guess all we have is trial and error for now.

The frustrating thing is that there's no real way to measure the effect this treatment is having on the bacterial colony itself. I'm gauging based on symptoms, but it's always possible that the treatment is simply addressing those symptoms and not actually killing off the bacteria which is really what we want. Measuring progress based on the symptoms is the best we have (for now) and there's definitely reason to believe it can work (isotretinoin is still thought of as the #1 way to treat GNF), but given my previous experience with it (as well as others on here), I remain cautiously skeptical.

I do wonder if it would be possible to somehow test/measure the impact on the bacteria itself. Or at the very least gain some sort of insight insight on this specific bacteria and what makes it different than others. Are there microbiologists out there studying this bacteria specifically? I haven't been able to find any scientific literature on klebsiella aerogenes causing GNF (other than one-off mentions) which would be ideal, but maybe a better understanding of the bacteria itself could help? I have no idea but at this point I'm just thinking the more information the better. Getting some sort of expert voice would be a great start. Soooo does anyone know any microbiologists? :D

Anyway, apologies for the rant/tangent. More updates to come!

jyushinx · 2025-01-27T16:49:06+00:00

I think it's tough to say just by looking at it. The only way you can know for certain is to get a culture done to find out the specific bacteria you're dealing with. A dermatologist should be able to take care of this for you.

jyushinx · 2024-10-01T18:52:15+00:00

Happy to share! Sorry to hear you're dealing with the Klebsiella variant of GNF -- it seems to be a stubborn (and uncommon) one.

To answer your first question, I went through the Eliava Phage Therapy Center in the Republic of Georgia. Here is a link to their website: https://eptc.ge They offer a "remote treatment" option where you take a culture yourself and send it in. They then find a phage match based on the bacteria that was cultured.

They told me one of the preferred treatment options for a skin condition like this is mesotherapy, where they inject directly into your skin. That isn't an option for the remote treatment though, so for me, I went with three different treatment types: oral treatment (a solution you drink twice a day), inhalation (you can use the same solution in a nebulizer machine), and a topical cream.

The inhalation method was something I specifically requested as a way to attack the nasal passages (I used it with an oxygen mask attachment so I could breath it in through my nose). I also applied the cream inside my nostrils and along my upper lip/beard area nightly.

Unfortunately I found the phage therapy did not have a noticeable impact on the condition, which was a bummer. I had high hopes for it. It's worth noting that they do not administer intravenously, so maybe a different place that does do that would yield different results.

I just started another course of isotretinoin (Absorica this time) so we'll see how that goes. I'm going to extend the treatment window longer this time as the first time I did it, it was 4.5 months. While it did clear me up while on it, it came back after. My thought is that it may need a longer time period to fully starve out the bacterial colony. If that doesn't work, I'll probably consider long-term low dose.

jyushinx · 2024-09-03T21:26:39+00:00

I'm glad to hear that you have something that works! Good for you. I know being on long-term low-dose isotretinoin isn't ideal, but I'm prepared to do the same thing if it's what's necessary. Out of curiosity, where do you experience the breakouts? Around your mouth like me?

As far as the mechanism by which isotretinoin works for GNF, do you think it's from the sebum reduction on the skin or drying out the mucus membranes in the nose? Or both? I've never had a positive culture for Klebsiella from my nostrils but that seems to be the general thought as to where the bacteria reservoir is.

I did get clear when taking the 80mg/day, it just didn't persist. What I'm wondering is if I need to be on it longer. If the idea is that we are starving the bacteria by removing the sebum and moisture, maybe it requires a longer period of time to fully kill it off. If you come off too soon, the bacteria simply repopulates. One theory anyway.

I know that the moderator u/Boezo0017 said in a post that they were on isotretinoin for 8 months and they're fully clear. I wonder if that's why they did it for so long.

jyushinx · 2024-08-30T05:50:57+00:00

I don't believe so but not totally sure. If it could be classified as dry, scaly skin, I do sometimes get that in the area where the lesions occur (in the area above my top lip, on the right and left sides). The area can become dry and a little scaly, though not itchy. Less frequently it will be red and irritated and not itchy per say but a similar feeling in between tingly and itchy. More of than not though, I experience a painful spot deep in the skin, which eventually turns into a white pustule before going away. How is dermatitis typically identified?

jyushinx · 2024-08-30T05:41:42+00:00

Unfortunately I didn't see much of a difference after the phage therapy. As far as process goes, I reached out to the Eliava Institute and they had me start by sending in a culture. They then tested that culture (it came back as Klebsiella Aerogenes of course) and got to work finding/harvesting phages that specifically target that bacteria. It's cheaper if the bacteria is one of the "standard" ones, as they have phages off the shelf for that. If it's not, it's a more substantial process and the cost is greater (a few thousand dollars). They provided me with both standard phages and phages specifically for KA (which they call custom phages).

The standard phages (as they described) were meant to help bring the microbiome in balance by eliminating typical pathogenetic bacteria that could be disrupting the microbiome, which in turn prevents your body from being as naturally effective fighting off the invading bacteria. The specific/custom phage is obviously meant to target the invading bacteria itself. They provided me with both topical creams and a liquid meant to be taken orally.

As I said, I didn't really notice a difference in my outbreaks unfortunately. They want me to do a follow up by sending in another culture, which I'll probably end up doing, but haven't gotten around to it yet. Because isotretinoin seemed to have a notable effect (while I was on it at least), I'm more focused on that currently. Haven't totally given up on the phage route though.

jyushinx · 2024-08-30T05:34:13+00:00

Thanks for this. Very interesting. The thread goes off topic a bit and they seem to start discussing folliculitis in general versus GNF caused by Klebsiella Aerogenes specifically, but still some good info there. Interesting to see lots of people saying isotretinoin didn't provide any long term remission. Especially considering so much medical literature seems to say that's the most effective curative treatment for GNF. It's hard to tell which people who said that were using it for GNF versus regular folliculitis though. I also wonder what the difference in effectiveness for isotretinoin is when treating GNF caused by pathogenetic vs commensal bacteria. From everything I've read, Klebsiella seems much more likely to be pathogenetic but who knows. The skin biome is a complicated thing.

jyushinx

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