Hi, just wondering if anyone else has experienced the pseudomonas bacterium. I would love to share my situation but I’m more interested in knowing If someone can shed light on effective treatments.
Right now I am housing pseudomonas in the sinus cavity at the base of my brain.
My story is long and just want to know what can be done. So I’m actually going to try to shorten my story. Doctors here (South Africa) don’t have a clue on how to deal with it. My short story is, it has ruined my life. We only discovered in 2019 that I’m housing a super bug (my story starts in February 2016). I am now chronic asthmatic since 2016 after being misdiagnosed multiple times and trips to the ER.
In 2018 I collapsed and had 5 grandmal seizures within 90 minutes. Was unconscious through everything, spent 4 days in ICU. Woke up with amnesia, loss of mobility, slurred speech, imbalance, etc.
The Doctor on call was content to leave diagnosis as “unknown”. I didn’t even know I had a follow up until the 3rd visit as I wasn’t alert. Change of Doctors revealed that on the night in question my white blood count was super high which should have rung alarm bells. Having never experienced this before my family trusted the Doctor. That is until weeks later when I was asking questions by then I was on 1500mg of Keppra. Which also changed me a bit in terms of temperament and other side effects. Had to have navigational sinus surgery. Results showed the super bug and his relative Burkholderia. Treatment sorted out Mr Burk but Mr Pseudomonas refuses to leave. My quality of life has changed as I’m always getting ill. Chest infections and tons of antibiotics and prednisone. My body has taken a beating.
A family friend discovered bacteriophage therapy but that is out of my continent. Still I’m interested in knowing if you have tried it or know someone who has. Has anything else worked to rid pseudomonas.
p.s. I’m writing this from my hospital bed where I have been since last Wednesday 2 February 2022. I’ve been sick since November and oral meds have not helped. In fact I’ve been in hospital last year again.
I want my life back🥺
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Gosh sorry to hear all you are going through.Might be worth posting this on British Lung Foundation site. Several people on there talk about pseudomonas so may have ideas and suggestions for you.
Hello I'm foxy79 I'm in hospital bed as well it's a 2 weeks volunteer admission with iv colomycine and merabonin fluid. I'm on other medications as well I'm foxy I have serve copd broncechtisis emphysema respiratory type 2 asthma odimia and pseudomnas I'm on oxygen nebulizer and bipeb machine NIV everyday pseudomnas is a bug when you get it we have to live with it only way it is by maintaining it every day clearing your airwaves and coughing the flame treatment connects to dots like rescue pack and antibiotics pseudomnas makes your immune system weak and most of the times oral tablets won't work you will need iv for 2 weeks strong antibiotics. Perdiesoline contribute to sugar and weight soo lower the better it is but it's hard to stay off cause keeps us out of trouble. My advice would be ask your consultant about your medication go through them including your rescue pack and have a plan with a Time if it doesn't work atleast you know what to do and haveing chest infection is common with pseudomnas but try not have excesabtion which leaves scaring in your lungs daily routine like clearing your chest and bit excrise and daily diet using your medication hopefully would help you be yourself hope that helps. It has helped me for last 10 years
Hi, I’m sorry that you’re so unwell and struggling. I’m in the UK and was diagnosed with pseudomonas in my lungs last year, after being unwell for a number of months and various courses of antibiotics not working. There is only one antibiotic which works in the treatment of pseudomonas which is ciprofloxacin, and you’re usually prescribed a two week course, if you don’t improve or can’t tolerate then you have to be admitted to hospital for IV antibiotics. I was also treated with colomycin nebs for 3 months due to them being in my lungs. If they aren’t eradicated, then further treatment involves long term antibiotics to keep the numbers at a level that don’t cause us to have infections. I take a prophylactic antibiotic daily which is azithromycin which as well as keeping the numbers down also acts as an anti inflammatory. I’m currently being treated for a flare up, latest sputum sample didn’t show pseudomonas but as symptomatic and two courses of antibiotics haven’t helped my GP agreed to try ciprofloxacin again to see if it made a difference. Sputum sample could have been clear because there weren’t enough numbers present to be picked up in the lab, or because the sample wasn’t from deep enough from lungs. The BLF forum has a few people with more experience of pseudomonas and will be able to offer you a lot of advice, hope you feel better soon and get the right treatment
Dear Bevvy...I see you have been in a long battle. I was too and still am in many ways. I have an underlying bronchiectasis which left me vulnerable for many bacteria to enter my lungs...one being Mycobacterium Avium Intracellularae which is a chronic non-tubercular disease (no cure) that is hard to treat but it can be done. I had to go on a series of meds Rifampin, ethambutol and Zithromax until I showed a negative sputum for a year which I have. During the time fighting this lung disease over the years, I developed chronic sinusitis which goes hand in hand with many bacterial lung diseases and the antibiotics and prednisone taken to fight so many infections that can come your way because of the....while and lower your immune system. Sinusitis seems to go hand in hand with this and many times I have gone into the hospital with extremely high fevers and had to be put on iv antibiotics for the severe sinusitis which showed pseudomonas at times. This all weakens you and your fragile immune system which is made more fragile by Prednisone which you need in order to be able to breathe...long term Prednisone is not a good idea but sometimes it is needed to save your life so that is the cost of fighting off these illnesses. My ENT physician put me on a nasal rinse with gentimycin, budesonide (which thins the nasal mucus) and saline that I use twice a day as a nasal rinse ONLY...this does not go through my system...onlyy keeps my sinus in check. since I began that combo...have not had to have a hospitalization because of sinuses in over 5 years. I developed asthma during my many treatments for bonchectasis and NTM and the more I needed to use steroids to breathe, the more the steriods were not working for me. I developed a high eosinophilic count shown on my blood test and that would correlate with my asthma getting worse. I looked all that up on line and was convinced I needed to be treated for eosinophilic asthma...my pulmonologist at the time did not want to give me more treatment for the NTM which was showing up in positive sputum again and was not familiar with the new biologics Monoclonal antibodies that treat eosinophilic asthma...as I was so sick I could not leave my home as it was so hard to breathe outside with the slightest allergens and Prednisone not working...I went to Mayo Clinic (I live in USA) and they weaned me off Prednisone (which took two months as well as starting me on a 7 day 3 pill treatment for my NTM which had not been treated in a long time and I feel that I may have not gotten so sick if I had treated that bacterial infection way before I needed so much Prednisone. Anyway...I took that treatment for a year and a half until I had a negative sputum (tested once a month) for a year. That NTM is under control and I also take a monthly injection of Nucala (mepolizumab) that immediately made my breathing easier and after a few months and because of this monoclonal antibody biologic... I do not need steroids at all...and it has been two years now since I have had any prednisone. During that time my body was able to gain it's strength, and yes, except for the pandemic, I did get my life back but the collateral damage is that the steroids have left me with osteoporosis of spine and I find that painful at times, but it is nothing compared to having one illness after another and finding the quality of my life gone. I use a nebulizer every night with albuterol to open the lungs and saline to keep everything healthy...plus the biologic (I now have no asthma symptoms at all) as well as the nasal rinse morning and night. I hope you can find the reasons that you are not in balance...they could be different from my own or maybe similar but if I can get back on course...so can you. Best of luck...Hannah
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