How many times have members (particularly those with bronchiectasis)written that they feel ill, have purulent sputum and lots of it and yet have been told that their sputum test has come back ‘clear’ and so have been left with no or insufficient antibiotic treatment to battle on, knowing full well that they are in the midst of an exacerbation which is being denied the type, strength and course of antibiotics which are needed.
Most of these patients are being dealt with by GPs or general respiratory consultants, who do not have the training or experience of bronch specialists and rely far too much on these tests when they should be paying attention to the patient themselves.
Well
I HAVE NEWS FOR YOU WHICH YOU CAN PASS ON TO YOUR GPs and other medics involved.
Today I had a long conversation with a member of my consultant’s OPAT team because I have been feeling that trouble was brewing, have been in contact with my bronch specialist and had sputum tests. My best friend and trouble maker is always pseudomonas.
My consultant jointly wrote the current guidelines for bronch and is as high in her field as you can get.
She is of the opinion that I go ahead with the IV
But this is where it gets interesting for everybody who has lab tests done on their mucus.
My tests all came back clear.
My consultant pointed out that pseudomonas and other bugs are VERY CLEVER
They have the ability to avoid being picked up in lab tests
BY COATING THEMSELVES IN A SHELL
BY FORMING A LIAISON WITH OTHER BUGS SO CONFUSING THE TESTS.
In the words of a famous actor ‘not many people know that’
Certainly not most GPs and many general respiratory consultants.
Therefore, , given my symptoms the psuedo is obviously having a party whilst using a disguise and needs knocking on the head.
So, the next time that you are blithely told that your sputum tests have come back clear but you know jolly well that something is going on
DO NOT TAKE NO FOR AN ANSWER!
Educate your doctor, insist that they listen to you and demand the right treatment.
We have to be very proactive in our own interests and vociferous in achieving the correct treatment.y
Written by
Swizzy
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We certainly do.theres a name for the disguise - I'm pretty sure it's phages,but cld be wrong.its not just pseudo that it happens with either.the test results missing infection is scandalous.i had test put in at GPS surgery,2days later ' clear'.as I knew it wasn't,put test into teaching,research hospital - highly infected with same strain I had requiring 1+ months treatment -I didn't see the report buy it had to go to consultant as his team hadn't seen a report like it+ didn't know how to act upon it.gp nurse - oh its clear - she had made a note on records how green+ thick it was! 10days delay in treatment has set me back weeks.no more! Proactive all the way!our life in their hands
Yes ..unfortunately.i have found that rather than giving extra quantity to specimen,I get more positive ( usually)results with just a couple of blobs from lower lungs x
Who cultured your sample? I make a habit of only ever doing at the hospital and not the GP.
The GP only orders the culture for 5 days, whereas some bugs take longer to show up. Some types of fungus need 3 weeks in the lab.
Pseudo is sneaky. Once you have it, it’s probably hiding there somewhere. Your consultant sounds awesome. You treat the symptoms for sure! So glad you have someone on your side.
This particular one was taken and studied at a large teaching hospital last week on a visit to my bronch specialist. We all know that pseudo lurks but not many people know that it can disguise itself so that a sample comes back ‘clear’. Our bronch specialists are prepared for this but unfortunately I read too often that people who know that they are having an exacerbation are refused the abs that they need because their medics see ‘clear’ and rely on that rather than listening to the patient. Too many people only have the option of taking a sample to the GP from where it goes through the standard tests at a local hospital. You are also absolutely right that too often the sample isn’t given enough time to grow pseudo or aspergilla.
I am glad they’re treating your symptoms but sorry you’re not doing so good. Fingers crossed for the IVs to dampen down the symptoms. 🤞🏼
You’re right about too many people only having GPs to manage their bronch. Also I know that too many people don’t have specialists who truly understand the nuances of managing bronchiectasis. I feel very fortunate in that my consultant listens to me and my views on my symptoms and lets me guide them. Everyone deserves that.
Thanks for this Swizzy I have struggled many times in the past with this… especially when dropping off samples at my gp surgery… however when I drop them off at consultant they seem to be put through a more rigorous testing and I end up positive with some culture or another.
You could try asking for it to be labelled with Bronchiectasis Protocol, or which ever diagnosis you have. I photocopy a form the consultant gave me and put it in with the sample, or sometimes the consultant will give me several pre filled forms so I can just drop them in to the GP to send off. Sometimes we have to be sneaky. 😊
Unfortunately in this circumstance that is of no help. When pseudo disguises itself and medics reading the lab result are not aware of it, they take it for granted that it is not there. Being sneaky isn’t such abad thing. X
Thanks for the advice. My consultant did write to the gp to ask for a broader spectrum of tests to be carried out for my sputum samples… although I’m not convinced they are following that through.
Another problem is that after so many years and so many infections I can be really ill and still have a normal temperature, which GPs often get confused by. If a sputum sample comes back clear but you're still unwell the consultant can do a blood test to find out which bug it is. I'm not sure how it works, but it was my next step when my sputum tests were coming back clear., but I was exhausted all the time. My next sputum test did grow pseudamonas so I didn't need the blood test.
Could you ask the GP for a blood test to check your infection/inflammation levels to try to help prove there's an infection? One of my GPs used to do this if I was sure there was a problem, but everything else was pointing to no problems. 😊
My gp has made me wait 10 days in the past and it proved to be pneumonia and pleurisy causing a 3 day stay in hospital with borderline sepsis, now I go via my respiratory department and take a sample there and tell my gp something is wrong and I need my rescue pack ASAP.Due to that delay I had been in hospital and out again before the gp had the result.
It is truly disgraceful that GPs stick to slow and unreliable methods when dealing with patients who know when they need treatment. According to the bronch guidelines ( if that is what you have) you should have had a rescue pack at home to use as soon as you perceive that something is going wrong. On every level that GP is not attending to your needs. Thank goodness that you have become pro active in your own interests.
My bronch specialist advised me to take my sputum sample directly to my clinic at the hospital, it always cultured some type of bug ,no longer use the gp x
Good for you tinker. The problem with pseudo ( and many other bugs) lies in its capacity to grow a shell around itself, so that it does not show on a plate and can even evade antibiotics. It does not happen every time but when it does it can fool those who are not aware of it.
And thank goodness that so many of us have educated ourselves in our condition and how we experience it. The training of medics in this regard is still woefully behind.
May I thank you for an excellent post. My samples often come back with “no significant bacteria “ only yeast when I know I am unwell. It is incredibly hard to fight the system tho, but this gives me much needed ammunition .
I do hope that it helps you to source the right treatment when you need it. Knowledge is power and your knowing this can educate the medics who do not, not to mention gaining the respect which is so often witheld from us.
Thanks so much Swizzy for all the information. I was diagnosed with bronchiectasis a year ago and am only just beginning to get my head around this horrid condition, so your post is one I’ll definitely save x
There are quite a few members who have been sailing the choppy seas of living with bronch for many years. If you need support or info please ask and we will try to help you
This is very informative, I have had a few clear sputum tests but have known I have something so I take my rescue pack as told by hospital. Could you say if there are any signs to look out for with the pseudomonas infection that is any different from other types. I've had it once around 2 years ago and think I remember having more joint pain, I was prescribed ciprofloxacin but had side effects and had to stop. I'm concerned it is still in my system.
As we are all different it is difficult to say whether pseudomonas gives different symptoms to other bugs. One thing is for certain, once it is in there it lurks, waiting to have a party, whether the numbers are too low to be seen on a petrie dish or as we are learning, it is disguising itself.
Other bugs can mostly be eradicated for some time by antibiotic treatment.
From my own experience, strangely, when I used to get haemophilus influenzae I would feel really poorly. Temp, weak, loads and loads of nasty stuff. With pseudomonas it is far more subtle, starts slowly, how ever much I cough up it keeps coming but never as nasty as with haemophylus and I don’t feel poorly unless it gets a real hold.
I don’t know how you reacted to cipro but as it is the only truly effective oral drug against pseudo it is worth persevering rather than having to have IV. I am taking it atm as I am having grief from the opat teams at both the QE in Bham and my local hospital who are leaving a very vulnerable patient to get ill whilst they argue over who should give the IV when once the line is in I can do it myself.
Infuriating and frightening!
I hate cipro because it makes me feel horrible in lots of ways but thankfully it does seem to be working this time to give me some time to overcome the deficiencies in the teams which are supposed to be looking after me.
All of this is probably of no help to you and actually, bronch is very much a case of ‘suck it and see’ with certain abs which work in us, bugs which do or do not show up in unreliable lab tests.
The strange thing is that since the big bruiser pseudo has been around (since 1986) in me, none of the others have dared invade its patch!
The only thing which I can say is to listen to your body and if the treatment which are being given is not helping you keep going back. Bronch needs at least two weeks of a high dose ab which eventually puts it back in its box.
Oh and I do so hope that you have a genuine bronch expert for a consultant. If not, set about finding one and INSIST on a referral.
I don’t suppose you have a link to an article that I’d be able to show my team that explains this, or point me in the right direction - I’m colonised with pseudomonas but when my sputum comes back clear they’re reluctant to treat even though I’m symptomatic etc - thanks
I fear that the team treating you does not include a bronch specialist. It is such a complex condition and lab tests so unreliable that patient's symptoms should be taken into account more than lab results. Too many of these docs are only trained in copd or chest infections of the normally healthy.It seems pretty obvious that more and nasty mucus, breathlessness and feeling unwell indicate the need for a strong antibiotic in a high dose for 14 days. Usually cipro. Please look up the bronch guidelines which should contain this. I cannot do it for you as I am in bed with vertigo.Then set about finding yourself a proper bronch specialist and insist on a referral
Thank you - I’ll have a look - I don’t have a bronch specialist as part of my team treating me and there isn’t one at the hospital I’m under 🙈 Hope you’re feeling better
Well that explains all of your problems. None of the team are experienced or trained in bronch. When I acted as a patient for doctors’ exams from first year to consultant it was shocking how little they knew. Most of their training is in copd which is very different. Look at your nearest large teaching hospital. Bronch specialists are usually based there with their teams. You can even ask your GP for a name but sadly they have as little knowledge of bronch so don’t let yours send you back into the mess of standard resp teams. You may have to travel. I attend the QE in Bham and have to travel from Stratford upon Avon. I have found that once a good GP starts to get proper advice from a true bronch specialist they are pleased to go along with it. Good luck
Hi Swizzy, as usual you are the font of all knowledge about bronchiectasis. I am keeping your post in my bronch folder online, although fortunately Cliff always has a rescue pack of 14 day Doxycycline at home. He does a sputum sample, (prior to starting his abs), which I take to drs but GP happy for him to start on Doxy immediately as having bronch since a small child Cliff knows when an Haemophilus influenzae party is about to start. A couple of times the results have been clear but patients of bronch know the signs and symptoms and surely better to treat at home rather than end up in hospital. Sorry to hear about your vertigo. Hope it soon clears. xx Joy
It sounds as though you and Cliff have absorbed a great deal of knowledge about bronch also and that he deals with it very well. His knowledge will be very valuable to those who are trying to get on top of it.
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