Infections?

[Princeasg]

Has anyone heard of stenotrophomonas maltophillia infection? I have been diagnosed with this about a week ago after suffering with numerous infections back to back over the past year. Struggling with daily living due to numerous chronic diseases i.e sarcoidosis, bronchechtiasis, fibromyalgia,arthritis,etc,etc. The list is endless. God forbid no one ever suffers in pain as much as I do on a daily basis and it is one rotten disease which cannot be seen or measured and only the person going through it knows the unbearable sufferings.sometimes I feel it is better to be dead rather than living in unbearable pain 24/7 from some illnesses.Apologies I have never written on this (or any other) site ever before,but have been reading most Posts from some lovely people and can relate to most of them and sometimes it feels like some is reading writing what I am going through. My kind regards to you all.

[Corin1950]

Sorry to read this but it’s really good that you’ve posted and maybe someone will have had this infection. There’s also lots of info online

This is a snippet from gov.uk

Stenotrophomonas maltophilia is a Gram-negative bacterium found in a variety of environments including soil, water, and plants. It also occurs in the hospital environment and may cause bloodstream infections, respiratory infections, urinary infections and surgical-site infections.

Clinically-significant infections usually only occur in those with significantly impaired immune defences, such as severely immuno-compromised patients. Infections in previously healthy patients are unusual.

Risk factors pre-disposing a hospitalised patient towards infection include prior exposure to antimicrobials (especially broad-spectrum antibiotics), mechanical ventilation, and prolonged hospitalisation. It may also affect the lungs of patients with cystic fibrosis.

Although it’s very resistant to antibiotics there are treatments for it.

It’s very difficult when the immune system is compromised because you seem to pick up every bug going.

Hoping you feel better soon and keep posting .

Take care

Corin

[sassy59]

Welcome to you Princeasg, you’re certainly going through a lot at the moment.

Thanks to Corin1950 I now have some understanding of the nasty infection you have. I’m carer for my husband Pete who has sarcoidosis and COPD. Last year he was hospitalised with severe sepsis and cellulitis. Luckily he pulled through but it was a scary time.

I hope things improve for you and wish you well. Xxxxxxx

[Bella395]

Princeasg - if you use the search box (top right) you will find some previous threads on this subject that might be helpful.

[Spacecat1]

You are going through the wars. Talk all you want with us about what you are going through.Sometimes it is good to offload your problems. Hopefully we will hear from you again soon. Need to go and shout hubby to get up another hospital appointment. More physio. Dont know why I booked a morning appointment my chest not at it's best in the mornings, but had no choice. At least going out for breakfast.and coffee.

[Damon1864 Volunteer]

Hi and welcome, so sorry to hear you are in constant pain, but please try to stay positive. I know it can be so hard at times but we will support you for as long as you need us, you still have soi much to live for. You have a lovely day and take care of yourself 😊 Bernadette xx

[Oshgosh]

My husband and I have a saying” it’s gone from cr*p to double cra*

Currently waiting for 1/some improvement from Myclophenate( 2 nd week

2/awaiting letter from consultant regarding Going on Oromorph,whilst pain around lungs and in chest settles down.

Have had scans investigations, heart OK BP OK. I think my hearts the best part of me at present.have got the letters in my bag to prove those bits ok

[Hidden]

My daughter has cultured steno 3 times in the last 12 months - it used to be considered quite rare but there’s been a large increase within the CF population over the last 15 years or so. It‘s now seen in about 30% of patients, quite often in those known to have chronic pseudomonas (sometimes concurrently, meaning the sample is positive for both) although the relationship between the two bacteria is poorly understood and the studies to date have polar opposite conclusions. It’s also not conclusive as to whether it’s always pathological in nature, but the current consensus amongst those managing CF is that you always treat it if the patient has symptoms. It is a nasty bacteria generally, though, particularly in those who are immunocompromised and the main suspect in the ongoing investigations into illness and deaths at a children’s hospital in Scotland where it was subsequently found in the water supply.

Although it’s generally known to have high levels of resistance, there are a number of antibiotics that work against it depending on the lab profile, the main oral option a lot of the time being septrin. IV ceftazidime is also quite effective if the profile supports it, but the important thing is that once you’re on the right treatment it should clear up relatively well. Whilst opinion is still split as to whether it’s a bacteria of true concern in respiratory diseases, it can definitely make some people quite ill and it certainly played a significant part in a really bad spell of chest health my daughter had with green sputum, daily haemoptysis and an fev1 in the 40s when it was left untreated earlier this year. We can’t use cef as she’s allergic, but thankfully septrin has worked for us on all 3 occasions and is now the choice of secondary antibiotic if she’s symptomatic but we don’t have any microbiology to guide us.

Hope that helps.