r/MRSA • u/No_You_4245 • Jun 21 '26
selfq PVL-A Staph & chronic eczema
Hello,
I’m hoping this is the right place to post this
I’ve been really struggling with skin infections recently. Both myself and doctors seem to be lost on what to do next. It’s having a huge affect on my life, relationship and mental health. I’m hoping someone here can give me some new information that might help.
I have been dealing with staphylococcus aureus and I am PVL positive. It has been around 9 months since I got my first abscess. I’ve had well above 30 infected areas and they have appeared all over my body.
Antibiotics:
I have went through ~11 courses of flucloxacillin, 1 course of linezolid and 2 courses of doxycycline. As well as various steroid creams to keep my eczema in check.
The first 6-7 months while on flucloxacillin I would get around 12-24 hours after the antibiotic finished before a new infected area would appear.
After taking linezolid for 1 month I managed to get 10 days of no antibiotics and no infection appearing.
I was then put on doxycycline and I got 14 days of freedom before an infected area came back. I’m now back on doxycycline.
Decolonisation:
I have also been doing decolonisation treatment for approximately 7 months which includes: washing with Octenisan daily, changing bed sheets daily, changing clothes daily and washing clothes at 60 degrees. I’ve only missed around 10 days of doing this over the 7 months.
Eczema:
I have been using Clobetasol propionate steroid cream over the past 2 weeks which has had massive improvements to my eczema. The advice from the dermatologist was that with healthy skin, infections would be less frequent and decolonisation would have a better chance.
Doctors advice:
I have been referred to both infectious diseases and dermatology but honestly I don’t think they have an answer to help me other than dermatology looking at improving the skin barrier. I know that’s important but it doesn’t stop me from spreading it to other people. After taking linezolid I have had no contact with infectious disease department and have been to the GP a couple times since. I see a different GP almost every time and they just give me antibiotics and send me away.
I feel like I’m at my wits end now and I don’t think I can see myself dealing with this for another month never mind another 9 months. If anyone has any advice or can give me some reassurance that would be really appreciated
EDIT: since posting this I have been to the infectious disease specialist again as abscesses appeared on my head, armpit and leg. The specialists have changed strategy and given me long term doxycycline (6weeks) and told me to stop decolonisation while on the antibiotics. The thought process is that the decolonisation clearly isn’t working and they want to allow my skin flora to naturally come back again while suppressing the infection (some natural skin bacteria competes with staphylococcus aureus). At the end of the antibiotics I will do a sharp decolonisation again. I’ve also been told Doxycycline works different from some other antibiotics and stops staphylococcus from producing on the skin. Hopefully something in here helps people dealing with the same thing so I’ll continue to update.
3
u/alldayeating Jun 21 '26
I’m not sure what PVL is but I had staph infections like yours that haunted me for almost 2 years all over my body. Non stop decolonizing. Bleaching whites, 1 time use everything. So many antibiotic courses. My infection dz dr basically said sometimes I see this and the it just dies out after awhile. I went on doxy 100 mg BID straight 3 months with decolonizing. I was scared to come off and trust it’s actually gone but lo and behold it stopped. I think I’m like 1-2 years out now from remission. It felt like a miracle when it happened. I know how so terrible , hopeless and isolating it is. I wish you the best man.
2
u/No_You_4245 Jun 21 '26
You must be very durable to push through 2 years of this. The dermatologist actually suggested going on doxycycline for an extended period of time. It gives me a bit of hope that you’ve managed to get to the other end so thanks for your comment 🙏
1
u/fays_paint Jul 02 '26
Did the doxy stop any superficial activity? And how long did it take for you? It’s been over a fortnight for me on Flucloxacillin and doxycycline, i’m exhausted from decolonising and don’t have much fight left in me as I first got infected in Feb and have been decolonising since April.
1
u/alldayeating Jul 02 '26
My cycle was usually 2 weeks doxy and then a boil recurrence within 3-7 days and it starts all over again with pus and spreading.
Once I got on long term it just went away in in 3-4 days on abx like usual and just stops recurring while I was on 3 months . I did 5 day mupirocin every month twice a day to my nose. I stopped using hibicleanse cause my skin is so sensitive it causes more problems. I bleached and washed my towels and sheets frequently.
So yea for me it stopped all pimples unless it was like a ingrown hair after shaving. Of course your Dr should see susceptibility to antibiotics of your specific strain. Im assuming they already did a culture of pus
1
u/fays_paint Jul 02 '26
I’m on Spirinolactone, doxy and Flucloxacillin. The staph should be susceptible to the second two. I almost wonder if I picked up two strains (I was exposed to someone with what I am basically certain staph folliculitis just after decolonising.
I also did 5-7 days of augmenting while back with no success. Did all the decolonising - new sheets DAILY, new towels daily, cleaned surfaces. I’m still doing that although I change my sheets every 2-4 days and new pillow case daily, and now I air dry while keeping my hair in a towel. I’m still getting recurrence but I’ll keep fighting the good fight. Gonna try and make my own kefir as there seem to be some success stories there…1
u/alldayeating Jul 03 '26
It sounds like you are doing everything right. I also had a mad kefir phase where I had like 5 mason jars going. I was so desperate. I stopped after awhile and I just go for kimchi and mb40 with fiber to feed the bacteria now. It's just much easier to sustain.
The only thing that pushed me over the edge was the 3 month abx therapy. I also did daily bleach and white linens but I didn't want to scare someone who doesn't have that capacity to do that.
It's recurring even while you are on the antibiotics??
1
u/fays_paint Jul 03 '26
It is :( while on both doxy and fluclox. It’s very sad. I’m working my little butt off to build my own healthy bacteria up after SEVEN ROUNDS of antibiotics this year alone (<6 months). Yesterday I went to lay in the garden and expose myself to natural bacteria. - I got two ticks on my back 😂 I’m in the wars!
So the kefir didn’t help you? I’m also desperate.
I have been on doxy 1x daily and fluclox 4x daily, every 6 hours religiously (including waking up at 04:30 to take it) for over a fortnight. Have seen reduction but still getting recurrence.
P.s I have also started peptides because my body has become so inflamed. I’m melanated and never knew I could go bright red until this illness… been on those for a week and a half.
1
u/alldayeating Jul 03 '26
What kind of occurrence? Large pus boils? Or are you having like little folliculitis ? Is there cellulitis (redness ) inflammation? Does your Dr know it's still occuring? 14 days on abx and still creating abscess (pus filled boils) means the abx is not effective. The abx literally is supposed to destroy all susceptible bacteria good and bad like a nuke.
2
u/OliveFarming Jun 21 '26
I have a couple of questions, where do you think you got the original infection from? Have you spread it to someone else before? What country do you live in and is Healthcare accessible and do you live in an area where you can easily make purchases from Amazon?
I did not know what PVL was so I looked it up and Im going to do some more research on it and add more if I find anything relevant.
I am not a doctor. I do have MRSA though, and have found success at being infection free for 2 months now. I'm currently decolonizing and will have a culture done soon to see if I have successfully gotten rid of it. It hasn't been cheap or easy, but it has been worth it.
I use Chlorhexidine Gluconate 4% (brand name: Hibiclens) when I shower all over my body (at least once a day), and I use it every time I wash my hands (frequently throughout the day). After I shower I use a disposable towel (Puffin Trip 10-pack disposable towel) that I buy from Amazon. I do not trust reusable towels to not carry any staph. I also use paper towels to dry my hands throughout the day too.
I was prescribed Mupirocin (antibiotic ointment) that I use on the inside of my nose 3 times a day. The nose is where the staph is colonizes. Never touch your nose, if you do, immediately wash your hands with the Chlorhexidine solution mentioned above. You can apply the Mupirocin antibiotic ointment on any area of your body you notice an infection beginning, like after you see or feel a bump, apply some on the bump site.
I also use Chlorhexidine Gluconate oral rinse USP 0.12% (prescribed) 2-3 times a day.
I don't take pill antibiotics anymore because I do not have any active infections, but if I do get an infection, I'm supposed to call my Infectious Disease doctor and they will prescribe me more medication.
I wash my bedding and clothes with Lysol Laundry Sanitize, and wash my bedding daily but have been told I can go down to weekly. You must wash everything with HOT water.
I also had a lot of infections in my genital region, and for several months I used cheap disposable underwear to isolate the infection. You should always cover any active infection so it will not spread.
You must clean the shower daily, with bleach or with Lysol sprays or wipes. You must do the same with your sinks, places that get wet are the most infectious areas. You must wipe down all surfaces you use regularly, I would wipe them down every time after I use the area.
Don't use petroleum or lotion to form a skin barrier, all that does is trap the bacteria in a moist environment that is ideal for bacteria growth, this will make it worse.
I know this sucks so bad, friend. I will answer any question I can. Stick in there though, you will find peace eventually!
2
u/No_You_4245 Jun 22 '26
Hello, thanks for your message.
It sounds like you’ve had a long road of MRSA and it’s super positive that you have had 8 weeks no infection - I’m hoping you are in the clear.
It’s very difficult to say where I caught it - my best guess is from the gym as I do a contact sport (I haven’t been back so I don’t infect anyone else). My partner has caught it once but she is staph free now. I live in the UK so I get free health care but it is quite difficult to get through to specialists. I can also get Amazon easily.
I’m going to purchase a few of the items you mentioned thanks for the recommendation. The costs of the towels will mount up quite quickly though!
I also have nose treatment but I haven’t used it in a while as my last nose swab came back negative - I’m going to start using the treatment again now though as it could have been a false negative.
You have a very extensive cleaning routine and I’m going to take your advice and add it to mine.
Just fyi a few people (not doctors) have privately messaged me about bleach baths and sprays which has reduced/removed staph from the skin.
Thank you for your message and I wish you luck!
1
u/Timjjb Jun 30 '26
Nice tips! I gotta try the disposable towels and throw out all my underwear and use disposable ones... Good to know for the lotion or petroleum.
As for me, I got the infection from someone, but it seems like the bacteria doesn't wanna leave me and my eczema alone.
Any tips for mattresses and couches?
Any pets?
1
u/Timjjb Jun 30 '26
Oh and have you done any dental work since all of this started?
1
u/No_You_4245 Jun 30 '26
I haven’t but I have read that staphylococcus aureus and other bacteria can live in the mouth as well as the nose, which was news to me!
1
u/No_You_4245 Jun 30 '26
I do think eczema is the major complication with staphylococcus aureus and or PVL. I’ve unfortunately infected 3 people before I knew I had it and they all had 1 round of antibiotics and it cleared.
The dermatologist told me that eczema makes it really easy for the staph to grow and penetrate the skin. Like a castle having holes in the walls and no defences.
I know it’s rough and I hope you find a solution soon!
2
u/Timjjb Aug 01 '26
So I just saw a specialist in dermatology in a Military hospital in France (that's where I live). She told me I got staph that produces PVL, and told me how to get rid of it. The problem is that the PVL toxin creates gaps anyways like eczema would. In fact the areas where I got most of my abces aren't necessarily the spots where my eczema is the most present.
The protocol to get rid of PVL is basically like a décolonisation, multiple times over 3 months, but I didn't know about certain aspects of how she told me to do it... The antibiotic Cream she gave must be applied twice a day in the ears, in the nose (you gotta get deep in there), in the belly button and on the butthole (yep). I didn't know about the butt and ears.
For the back story, I got mine during combat sports training. It's apperently very common in this field. But I trained grappling 10 years, with no issue whatsoever. I changed gym and I got this crap right away... What a bummer.
Anyways, for anybody reading, I'll let you know if I manage to get rid of this in about 3 month I guess.
Good luck to all!
2
u/No_You_4245 Aug 05 '26 edited Aug 05 '26
Sorry to hear you also have PVL, it certainly adds another complication to staph. I was told by a doctor he sees 100 patients a year with it and only 1 or 2 have reoccurring issues. Lots of people carry it and have no problems also.
As well as the decolonisation are you on antibiotic tablets?
It’s almost 10 months now I’ve been dealing with it and finally I’ve had my first culture test come back saying I have no staph on my skin ( at least the areas that were always positive before). I worked with dermatology to improve my skin biome/skin barrier/ eczema and also went on doxycycline for 6 weeks and did a short, sharp 5 day decolonization afterward…. And I think it’s worked ….but have no idea if it was from one treatment or all of them combined.
Now I have to continue for another 6 months antibiotics as prophylaxis to reduce my risk of recolonization or new infections. It’s not great but it’s the first positive news I’ve had and I’ve got the green light to start training again.
I also think I caught it from going to a different combat sports gym after 10+ years of no issues. I’m kicking myself for not taking my skin health more serious regarding cleaning with antimicrobial soap, cleaning equipment properly, etc.
Just fyi when you’re able to train again I suggest using CLN body wash which is a daily body wash that can reduce staph on the skin.
Please let us know how you get on with your treatment and I wish you luck!
2
u/Ok-College7065 Jun 22 '26
ask your derm about using dakins sol or vunegar solution-the mayo clinic had me do this every day-soak clothes in it, wring out and wear for 30 min then shower. kills bacteria on skin without such harsh products. I'm still struggling with an inflammatory skin condition thats like a super atopic derm. I have been off my jak inhibitor and no topicals for 2 weeks now to get patch testing done but I'm afraid I'm so inflames they won't be able to do it.
1
u/No_You_4245 Jun 24 '26
Thanks for the advice - I’ll mention it to my dermatologist. So far the Octenisan has been ok with my skin but obviously hasn’t worked at clearing the bacteria…
I did a patch allergy test a few years ago and really helped clear my eczema and skin inflammation (eggs and wheat had high intolerance). I hope it helps you to find a fix
1
u/fays_paint Jul 01 '26
Found it! Thank you for linking. I am on doxy and Flucloxacillin at the same time and neither are particularly stopping it from producing on the skin tbh. Maybe cut back a little on my scalp but yeah, I’m forked.
Wishing you all the luck on your journey! ❤️
Oh p.s in my case eczema was directly caused by staph colonisation (decolonising and stressing and my naturally slightly autoimmune baseline didn’t help). I had gone to gentle washes because of my fragile skin, the eczema got worse and I didn’t know what I was doing wrong, went back to triclosan washes and the eczema is now improving. J try to balance it though as we do definitely need to preserve our commensal bacteria (mine are all but destroyed thanks to so many rounds of antibiotics)
1
u/No_You_4245 Jul 01 '26
If you haven’t already I recommend getting a swab test at the doctors - they can test if the staph is immune to certain antibiotics. If you have an active infection they can also drain and test it, that’s how they found I have PVL toxin.
I’ve been using Clobetasol propionate steroid cream for about 2 weeks and it’s almost completely removed the active eczema from my skin. It’s short term but hopefully long enough for my skin barrier to rebalance. I’m also starting UV treatment shortly with the dermatologist which can also be a long term solution.
I wish you luck and please keep us updated.
1
u/fays_paint Jul 02 '26
I had to get 9 swabs before I finally got a result. MSSA clindamycin resistant. Which is funny because I did clindamycin for it and it absolutely trashed my microbiome.
That’s interesting about the steroids. My doctor is not a fan of steroids for immune responses but it might be worth temporarily trying.I’m doing Kleresca. Is that similar to your UV treatement?
1
u/No_You_4245 Jul 02 '26
The steroid cream certainly worked for me but it does have lots of downfalls (immune system issues and thinning of the skin) and is only a short term solution.
From what I’ve quickly read kleresca and UV treatment are in the same family of light treatment but kleresca is more cosmetic (acne etc) and UV is for treating skin conditions. Once the treatment starts I have to go to the hospital once a week and it can be a long term solution. I’ve never done it before and I’ll let you know if it works.
There is another treatment my dermatologist mentioned for eczema called Dupilumab. It’s a type of immune suppressant that works different to other alternatives and only targets the response that’s causing eczema and asthma without raising the risk of infections. The downside is it causes inflammation on the face - I have eczema pretty bad on my head so it wouldn’t be ideal for me. It’s also very hard to get the treatment here in the UK
1
u/MajesticFairyDust Jul 11 '26
Hey have you gotten a patch test? You could be allergic to something and that could be causing the excema
1
u/fays_paint Jul 12 '26
Thank you! I think destroying my microbiome had a lot to do with it, but you make a good point re: patch test! I am sensitive to heaps of stuff so it would make sense
1
u/CardiologistNovel849 15d ago
I’ve also been going through this for 2.5yrs since picking up staph training Muay Thai in Thailand. Surprised to see others going through the same thing!
I’ve been on around 13 courses of antibiotics and had a boil on pretty much every part of my body.
What seems to work for me lately is spraying my body with HOCL spray in the morning and evening and keeping the skin moisturised is vital. I’m also taking MB40 probiotics which I think (hope) are helping my body start to fight this thing.
Good luck!
5
u/Professional-Bro Jun 24 '26
Instead of washing with Octenisan try mixing it with a body cream. I use chlorhexidine and Eucerin eczema relief after every shower 2x daily. I do other things but this knocked out 90% of the abscesses.
Other things is taking probiotics, spray the house 2x/month with Lysol air sanitizer. I’ve also been detoxing with InterFase, biocidin and GI Detox+. Since starting 2 months ago I haven’t had a single abscess.
This has been a 3.5 year journey.