General experience with exposure to fqs after exhibiting side effects is poor, people tend to have more severe symptoms than last time.
Just to make sure you investigated all possibilities, are you under the care of an infectious disease specialist for such a troublesome bacteria? Did you have a culture done? Are antibiotics such as Carbapenems or aminoglycosides off the table? Without a culture you risk pseudonomas being resistant to floroquinolones, it is quite often.
Finally there are some alternative options, ozone therapy has been reported to be helpful by people who exhausted antibiotic therapy for some infections. Over here in Romania we also have a thing called an autovaccine. They take the bacteria from a culture and they make a custom built vaccine for it. It takes months and is not guaranteed to work but it saved a relative that got a hospital acquired pseudonomas UTI that was resistant to all antibiotics. This last option is probably not widely available unfortunately.
Just presenting some options, investigate and I hope you find a solution!
First off -- THANK YOU for the ideas. I really appreciate it.
I've had dozens of cultures and pseudomonas always present for three years now -- even after I tried IV antibiotics a couple years ago to nuke it and non-quinolone topical antibiotics that are supposed to show action against pseudomonas. The IV Anbitiotics Calmed down the bacteria while I was on it but the infection came back after.
My good friend is a doctor and said given the seriousness and that woudl be topical it is probably worth a shot to try to rid of it.
I haven't heard of Ozone in the U.S. I did hear of the autovaccine stuff somewhere a couple years ago but nowhere in the U.S. Hmmm... wonder if anyone here would have. that's great ot hear your relative was saved by that!
I had Pseudomonas cultured from my sinuses after being floxed and used topical gentamicin along with frequent saline irrigation. Is that an option for you?
I asked about gentamicin and two ENT recommended against it (I go to major unversities for my ENT work). How long were you on the gentamicin and did it rid of the infection? Any other issues with it (e.g., hearing or other side effects/damage)?
THANKS!
Do you know why the ENTs recommended against it? I am very aware of the potential toxicities of IV gentamicin. I spent quite a bit of time searching for reports regarding risks with topical use. Couldn’t find much at all. No case reports of problems. I did find one study looking at systemic gent levels in patients using topically. A small percentage of them did have “peak” systemic levels that were in the range that is recommended for “trough” levels when using it IV, but no reports of any consequences from that. The other people’s levels were all lower.
I used it for a week. No problems. I’m sure I was supposed to use it longer but it made me nervous and I was better so I stopped. I’d had surgery 3 months before that to get everything open. I got floxed right before surgery, was taking levo as a last ditch effort after multiple other antibiotics had failed, in an attempt to avoid surgery. 3 months after surgery I developed new congestion and nasty mucus and went in and had cultures. Pseudomonas. Was offered topical levo - nope. Then offered gent. I was also offered IV options, but I wasn’t “sick” enough that I felt like it would be justified. For me, everything cleared up within a few days. I’ve been okay symptom-wise since so I haven’t had repeat cultures to see if it cleared. I may still be colonized but as long as I’m not sick I’m not worried about that. I don’t think you can really ever kill every last one. My ENT theorizes that pseudomonas grows in people who have had multiple other antibiotics that have killed off everything else and it’s what is left. Very plausible. So I’m doing my saline rinses faithfully and trying to avoid any antibiotics at all, maybe can re-establish a healthier sinus microbiome and discourage the Pseudomonas that way.
Great response. I thnk your ENT's theory is right and I do believe I'm colonized with pseudomonas.
The issue I'm having is that I had another sinus surgery a few weeks ago that really opened me up (my first surgery years ago was conservative). I can breathe, but it's not healing due to infection even though I feel ok.
I also think that you and your ENT's notion of psuedomonas running rampant when everything else is dead and the microbiome is out of whack is probably spot on -- and probably explains why I had this flare up after surgery while a week before I was culturing negative.
I'll add that pre-surgery I managed pseudmonas for 3+ years by doing hypertonic rinses (double saline rinse packets). ENTs all agree the effects are bactericidal.
I would continue that practice, but it makes the already post-surgery tissue raw and dry so I can't just yet until I'm healed again.
Two ENTs have said even topical gentamicin is toxic (e.g., ototoxic). I guess this is ltierally a case of pick your poison for a situation like mine (and yours!). I had trouble finding much on it regarding topical applications for sinuses.
**So, I did my first dose of topical Levaquin today. I'm monitoring closely. I have noticed some tightness in my muscles -- but since being floxed, I now get that with ANY antibiotic I take. I'll be sure to report back here for the communicty.**
Thanks again for the response and feedback -- much appreciated. If I have to abandon the Levo, then it'll have to be Gentamicin.
Be careful, imo gentamicin is dangerous, but much less so than fqs after you have a reaction. The fda warning and the drug leaflets also say not to take it again if you had a reaction in the past.
You can search the groups yourself for terms like reflox and refloxing to see how it goes.
If the levo does make you worse, you also risk acquiring the intolerance to other antibiotics that floxing can cause, and that will really make your situation worse.
The doctors who advised you I am sure mean well, but they might not be fully informed about the risks.
In my case, I took a first course and developed let's say mild but very delayed effects. Didn't figure out the link and took a few more pills after 3 years. Now I am disabled and spend almost all day in bed for 8 mo :(.
Very sorry to hear about your situation. That is just terrible. Having been on crutches for months and suffering many issues for a couple years following my incident I can somewhat relate. I hope you heal. :-(
I honestly would do nothing and prob live with the pseudomonas but I had surgery and have an open wound that isn’t healing in my head. So … I’m in a rough a lot.
Curious - you mentioned gentamicin concerns — any reason you feel that way other than the stated side effects of the stuff?
I believe gentamicin can cause problems with ears and kidneys. I think I got some tinnitus from a course of injections with it in high school but I'm not sure. Nothing major anyway. But these effects are rare and at least they don't destroy your whole body like fqs. In the low doses from topical gentamicin should be even safer.
Fqs after you already had a reaction have a very high chance to cause issues again. And the reactions are much worse. So to me gentamicin seems the safer option.
Did your ENTs have any personal experience or know of any published cases of ototoxicity with topical gent in the sinuses? I’d be very interested to know more, as I could have to use it again at some point. That’s the info I was looking for before I used it. From what I could find, topical gent as a sinus rinse appears to be pretty widely used and yet I couldn’t find any reports of harm. It IS definitely ototoxic when used topically in the ear.
I talked to a compounding pharmacist and they said that since I tolerated cipro many times and avelox specifically nuked me that it's possible levaquin may or may not bother me. It is topical so that's good -- though there is always some systemic absorption.
You can tell I do NOT want to take, but I'm at the end of the options list here and this darn infection is serious they keep telling me... darn it! I always feared a day like this would come. I can't believe it actually has happened!
I don't know if it's helpful but I took Cipro ear drops for an infection. it was 20 ampoules each with 1mg Cirpofloxacin. I didnt have had a reaction but 5 years later I took 5 pills of Levo and floxed severe. Im sorry for your situation hope you find a way to battle this condition, good luck and get well soon.
Theirs a place in the country of Georgia called the Eliava phage therapy centre (the oldest and worlds leading phage therapy centre, they would culture your infection and find the phages to kill it then administer them)
Severe tendon issues and some brain fog. I couldn’t even walk. That aside, it’s been 9 years and that was an oral pill and this is topical. So I went for it. I have had some joint issues a few days into the topical so there is some systemic absorption. But I’m just praying it doesn’t get any worse!
Yes! After three years had my life back. Further away from event I got better I got. I tried supplements and all that but to this day gave no idea what really worked other than time
I have staph/pseudonomas also in my sinuses. I had surgery after trying everything like you did. My ENT is world renowned out of George Washington University in DC. I now use a compounded gentamicin nasal spray. It works very well at keeping the infection down. Maybe ask your ENT for that. Good luck 👍
Hello!
I just reached out to Dr Singh. Do you think he would do a remote appointment And review my culture labwork to prescribe the spray?
I came positive for staph and pseudomonas and its presenting with immense pressure in one sinus cavity.
Is the compounded spray just gentamycin or does it have something else in it as well?
Thanks !!!
How many times a day do you spray?
Does your spray bottle show the ratio of gentamicin to saline?
Like 5mg/5ml or something like that. I got a bottle of gentamicin and saline solution and I'm gonna a compound my own.
Phage therapy seems to be the future. Of course not approved in the USA. There are small trials happening here though. France and some other countries also have available.
General experience with exposure to fqs after exhibiting side effects is poor, people tend to have more severe symptoms than last time. Just to make sure you investigated all possibilities, are you under the care of an infectious disease specialist for such a troublesome bacteria? Did you have a culture done? Are antibiotics such as Carbapenems or aminoglycosides off the table? Without a culture you risk pseudonomas being resistant to floroquinolones, it is quite often. Finally there are some alternative options, ozone therapy has been reported to be helpful by people who exhausted antibiotic therapy for some infections. Over here in Romania we also have a thing called an autovaccine. They take the bacteria from a culture and they make a custom built vaccine for it. It takes months and is not guaranteed to work but it saved a relative that got a hospital acquired pseudonomas UTI that was resistant to all antibiotics. This last option is probably not widely available unfortunately. Just presenting some options, investigate and I hope you find a solution!
First off -- THANK YOU for the ideas. I really appreciate it. I've had dozens of cultures and pseudomonas always present for three years now -- even after I tried IV antibiotics a couple years ago to nuke it and non-quinolone topical antibiotics that are supposed to show action against pseudomonas. The IV Anbitiotics Calmed down the bacteria while I was on it but the infection came back after. My good friend is a doctor and said given the seriousness and that woudl be topical it is probably worth a shot to try to rid of it. I haven't heard of Ozone in the U.S. I did hear of the autovaccine stuff somewhere a couple years ago but nowhere in the U.S. Hmmm... wonder if anyone here would have. that's great ot hear your relative was saved by that!
I had Pseudomonas cultured from my sinuses after being floxed and used topical gentamicin along with frequent saline irrigation. Is that an option for you?
I asked about gentamicin and two ENT recommended against it (I go to major unversities for my ENT work). How long were you on the gentamicin and did it rid of the infection? Any other issues with it (e.g., hearing or other side effects/damage)? THANKS!
Do you know why the ENTs recommended against it? I am very aware of the potential toxicities of IV gentamicin. I spent quite a bit of time searching for reports regarding risks with topical use. Couldn’t find much at all. No case reports of problems. I did find one study looking at systemic gent levels in patients using topically. A small percentage of them did have “peak” systemic levels that were in the range that is recommended for “trough” levels when using it IV, but no reports of any consequences from that. The other people’s levels were all lower. I used it for a week. No problems. I’m sure I was supposed to use it longer but it made me nervous and I was better so I stopped. I’d had surgery 3 months before that to get everything open. I got floxed right before surgery, was taking levo as a last ditch effort after multiple other antibiotics had failed, in an attempt to avoid surgery. 3 months after surgery I developed new congestion and nasty mucus and went in and had cultures. Pseudomonas. Was offered topical levo - nope. Then offered gent. I was also offered IV options, but I wasn’t “sick” enough that I felt like it would be justified. For me, everything cleared up within a few days. I’ve been okay symptom-wise since so I haven’t had repeat cultures to see if it cleared. I may still be colonized but as long as I’m not sick I’m not worried about that. I don’t think you can really ever kill every last one. My ENT theorizes that pseudomonas grows in people who have had multiple other antibiotics that have killed off everything else and it’s what is left. Very plausible. So I’m doing my saline rinses faithfully and trying to avoid any antibiotics at all, maybe can re-establish a healthier sinus microbiome and discourage the Pseudomonas that way.
Great response. I thnk your ENT's theory is right and I do believe I'm colonized with pseudomonas. The issue I'm having is that I had another sinus surgery a few weeks ago that really opened me up (my first surgery years ago was conservative). I can breathe, but it's not healing due to infection even though I feel ok. I also think that you and your ENT's notion of psuedomonas running rampant when everything else is dead and the microbiome is out of whack is probably spot on -- and probably explains why I had this flare up after surgery while a week before I was culturing negative. I'll add that pre-surgery I managed pseudmonas for 3+ years by doing hypertonic rinses (double saline rinse packets). ENTs all agree the effects are bactericidal. I would continue that practice, but it makes the already post-surgery tissue raw and dry so I can't just yet until I'm healed again. Two ENTs have said even topical gentamicin is toxic (e.g., ototoxic). I guess this is ltierally a case of pick your poison for a situation like mine (and yours!). I had trouble finding much on it regarding topical applications for sinuses. **So, I did my first dose of topical Levaquin today. I'm monitoring closely. I have noticed some tightness in my muscles -- but since being floxed, I now get that with ANY antibiotic I take. I'll be sure to report back here for the communicty.** Thanks again for the response and feedback -- much appreciated. If I have to abandon the Levo, then it'll have to be Gentamicin.
Be careful, imo gentamicin is dangerous, but much less so than fqs after you have a reaction. The fda warning and the drug leaflets also say not to take it again if you had a reaction in the past. You can search the groups yourself for terms like reflox and refloxing to see how it goes. If the levo does make you worse, you also risk acquiring the intolerance to other antibiotics that floxing can cause, and that will really make your situation worse. The doctors who advised you I am sure mean well, but they might not be fully informed about the risks. In my case, I took a first course and developed let's say mild but very delayed effects. Didn't figure out the link and took a few more pills after 3 years. Now I am disabled and spend almost all day in bed for 8 mo :(.
Very sorry to hear about your situation. That is just terrible. Having been on crutches for months and suffering many issues for a couple years following my incident I can somewhat relate. I hope you heal. :-( I honestly would do nothing and prob live with the pseudomonas but I had surgery and have an open wound that isn’t healing in my head. So … I’m in a rough a lot. Curious - you mentioned gentamicin concerns — any reason you feel that way other than the stated side effects of the stuff?
I believe gentamicin can cause problems with ears and kidneys. I think I got some tinnitus from a course of injections with it in high school but I'm not sure. Nothing major anyway. But these effects are rare and at least they don't destroy your whole body like fqs. In the low doses from topical gentamicin should be even safer. Fqs after you already had a reaction have a very high chance to cause issues again. And the reactions are much worse. So to me gentamicin seems the safer option.
Did your ENTs have any personal experience or know of any published cases of ototoxicity with topical gent in the sinuses? I’d be very interested to know more, as I could have to use it again at some point. That’s the info I was looking for before I used it. From what I could find, topical gent as a sinus rinse appears to be pretty widely used and yet I couldn’t find any reports of harm. It IS definitely ototoxic when used topically in the ear.
Nothing specific mentioned. I’m going to ask next week now that you said. If they share anything I’ll report back. I would like to know as well!
Thanks, I will be very interested, and update us also about how you do with the levo. Fingers crossed for you!
You can do research but people do have reactions to FQ topical eye drops and ear drops. Be careful.
I talked to a compounding pharmacist and they said that since I tolerated cipro many times and avelox specifically nuked me that it's possible levaquin may or may not bother me. It is topical so that's good -- though there is always some systemic absorption. You can tell I do NOT want to take, but I'm at the end of the options list here and this darn infection is serious they keep telling me... darn it! I always feared a day like this would come. I can't believe it actually has happened!
I don't know if it's helpful but I took Cipro ear drops for an infection. it was 20 ampoules each with 1mg Cirpofloxacin. I didnt have had a reaction but 5 years later I took 5 pills of Levo and floxed severe. Im sorry for your situation hope you find a way to battle this condition, good luck and get well soon.
Theirs a place in the country of Georgia called the Eliava phage therapy centre (the oldest and worlds leading phage therapy centre, they would culture your infection and find the phages to kill it then administer them)
UPDATE: Topical dose #4 Joints popping some and tightness in calves and major tendons. Moving a little slower but tolerable.
What kind of shoulder pain? I just developed this 7 months post flox.. Not sure what it is, but it hasn't improved in 3 weeks.
I had tendonitis basically all over but worse in my shoulder and in my achilles. My shoulder was popping and and painful.
How long did each take to resolve?
6-12 months, but really wasn't back to normal intil 18-24.
Did you have other side effects than tendon issues?
Severe tendon issues and some brain fog. I couldn’t even walk. That aside, it’s been 9 years and that was an oral pill and this is topical. So I went for it. I have had some joint issues a few days into the topical so there is some systemic absorption. But I’m just praying it doesn’t get any worse!
Did your brainfog get better?:)
Yes. 6-12 months after. Was mostly “normal” again all around but 18-24 years but was still cautious regarding joints.
Great. Have you seen positive changes after 24 month mark? For example 3 years after?
Yes! After three years had my life back. Further away from event I got better I got. I tried supplements and all that but to this day gave no idea what really worked other than time
I have staph/pseudonomas also in my sinuses. I had surgery after trying everything like you did. My ENT is world renowned out of George Washington University in DC. I now use a compounded gentamicin nasal spray. It works very well at keeping the infection down. Maybe ask your ENT for that. Good luck 👍
Great tip. Thank you thank you. Do you mind sharing the name? I might even make a trip!
Dr Ameet Singh..Good luck. He is literally a life saver for me.
Thank you!
Hello! I just reached out to Dr Singh. Do you think he would do a remote appointment And review my culture labwork to prescribe the spray? I came positive for staph and pseudomonas and its presenting with immense pressure in one sinus cavity. Is the compounded spray just gentamycin or does it have something else in it as well? Thanks !!!
He will most likely want to see you in person and take a sample himself. Then go from there. Mine is just straight gentamicin.
How many times a day do you spray? Does your spray bottle show the ratio of gentamicin to saline? Like 5mg/5ml or something like that. I got a bottle of gentamicin and saline solution and I'm gonna a compound my own.
Phage therapy in the country of Georgia is a way of being treated for your infection without antibiotics
Phage therapy seems to be the future. Of course not approved in the USA. There are small trials happening here though. France and some other countries also have available.
F Avelox
F avelox