Pseudomonas and Stenotrophomonas
Posted , 9 users are following.
Hi all
I suffer with BRONCHIECTASIS but a lot of the time i am infected with PSEUDOMONAS & STENOTROPHOMONAS as well, which requires heavy duty antibiotics which sometimes clears the infection and sometimes not.
This condition is starting to have an impact on my life as i am constantly on antibiotics, which can make you feel quite poorly.
i am about to start physio which i hope may help with this condition.
patricia69948
0 likes, 12 replies
Susanne_M_UK patricia69948
Posted
I have the pseudomonas infection lurking in my lungs as well and recently had 6 weeks on Ciprofloxacin. It has some bad side effects, but there really is no other choice but to keep taking them until you're better. I already have a compromised immune system, so have an emergency pack of Clarithromycin which I must start taking at the first sign of a chest infection. it does wear you down being on antibiotics so much. in fact, I've just started a pack this morning.
pinksnugsy patricia69948
Posted
Hi
I suffered with pseudamonas for about 10 years and it showed up in every sample then 2 years ago I went on another lot of intravenous antibiotics but my consultant gave me 4g of Tazocin 3 times a day and 1g of meropenem once a day and it did the trick. I havent had pseudamonas show up in any samples in 2 years. I still have bog standard bugs which are hard to get rid of but using an aerobika device helps to keep lungs clear plus exercise as much as possible. I also take Altrient liposomal Vitamin C, turmeric and black pepper capsules and manuka honey daily. Hope this info helps. It is hard having brochiectasis as it can affects peoples lives dramatically but eat healthy, exercise and make sure you have a good doctor/consultant.
Best wishes
Rachel
patricia69948 pinksnugsy
Posted
Hi Rachel
i have had iv Tazocin then iv MEROPENEM which has worked in the past but not this time. The other bacteria i grow Stenotrophomonas is also a problem. The antibiotics may clear the pseudomonas but its cousin seems to survive. i get very worried about the amount of AB's I have. and the resistance I have to quite a few of them.
thanks for your reply.
pinksnugsy patricia69948
Posted
Hi
It's getting harder as I get older to find any antibiotics to clear the basic of bugs. I've had 6 lots of ivs since Feb and countless oral antibiotics I have an infection at the moment. I seem to have 2/3 weeks of feeling good then another infection descends. I hope you find a solution soon. Have you ever been to papworth hospital?
Rachel
patricia69948 pinksnugsy
Posted
Hi Rachel
I live in New Zealand, so no I havent been to Papworth Hospital. Poor you, I know what it is like to live on the necessary evil of antobiotics but if that is what is going to keep us alive, well so be it. i wish you the best.
sweet85322 pinksnugsy
Posted
Hello Rachel, I have Bx with very rare Burkholderia cepecia growing. Do IV antibiotic have side effects like oral? Did you do it at home? My doctor is considering a PICC line if I want to eradicate this bug.
debra_28257 patricia69948
Posted
I have Pseudomonas in my lungs and my doctor has me on Tobermyacin medication that you inhale with a breathing machine. I take it for 28 days on and then I'm off Tobramycin for 28 days. Since I have been doing Tobramycin treatment I have not had any respiratory Pseudomonas infections, and the Tobramycin medication doesn't make me feel bad because I inhale it and it goes straight to my lungs and doesn't affect my other organs like it could if I had to take it orally or interveneislly. My doctor said once Pseudomonas gets in your lungs that it will never completely go away that I will forever have to keep taking antibiotics, also I take the maximum dosage of airborne 3 x a day and eat healthy and stay very active, if my immune system stays good with Tobermyacin treatments then I can keep this Pseudomonas at bay but if I get sick and my immune system gets low then the Pseudomonas could take over suddenly and kill me. Pseudomonas in your lungs is very serious and you need a good lung doctor and keep your immune system high and hopefully you will be able to have a better quality of life. Good luck to you!!!
patricia69948 debra_28257
Posted
Thanks for the info Debra. i will ask my Specialist about your regime.
irishrob debra_28257
Posted
Hi Debra,
How are you doing ? How long have you been taking Tobi ? Same here I started on Tobramycin in Feb. this year one month on and one month off. I done 3 & half months of Tobi and stopped taking it. For me i dont think it worked well enough I found during off the months i was wheezy coughing a lot all the time not feeling great.My thinking Debra is, its all trial & error what works for some may not work for others I dont think my chest doc agrees with me !!!
I am delighted it works for you I went back to taking Azithromycin 250 Every Mon Wed Fri Im still not great I also use flutter valve twice daily for chest clearance & take exputex daily My Chest doc thinks i will have to go into hosp. 2 times a year to have strong antibiotics injected to help again hit & miss
debra_28257 patricia69948
Posted
Yes, please do and keep me posted.
retirednana patricia69948
Posted
I know how awful it's been for you- I hope this helps: ask your doctor for a round of ROCEFIN injections. You'll have to go in for 3 days straight to get it, but its the strongest most sure way to rid the infection of the lung. The great thing about it also is that since it's not an oral antibiotic, it doesn't wreak havoc on your stomach or gut
hughesclen patricia69948
Posted
It is nice to know there are effective antibiotics.
I was on Tobi and ended up with vertigo for over a year and a half which is a side effect. Anyone else experience this?