Haemophilus Influenzae Bacteria

[Teach66]

Does anyone else have experience of having Haemophilus Influenzae bacteria in their lungs please? I would be interested to hear how you have been treated. Thanks

[Pipsqueak77]

Hi

I get it regularly…. It’s just a regular course of antibiotics.

👍

[Teach66 in reply to Pipsqueak77]

I'm on my 4th course of doxycycline again this year. And usually prescribed for a two week stretch. It doesn't seem to be kicking it into touch. Within two weeks of completing the antibiotics, the bacteria raises its ugly head again, and I'm back to feeling awful again. 😔

[Pipsqueak77 in reply to Teach66]

Hi

Do they isolate the bacteria or just guess and give you another course of doxy?

I used to alternate between septrin and doxy when really bad… maybe you just need a different antibiotic?

👍😊

[Teach66 in reply to Pipsqueak77]

Hi Pipsqueak77,

Yes, I usually provide a sputum sample. When I'm coughing up lots of green phlegm, it has shown up as HI. I've also provided other phlegm samples (generally after I've finished a course of antibiotics and steroids) which have been normal. But I feel the bacteria sits quiet waiting for some germs to come along, and then bang, the HI rears up again.

I'm at my wits end with it all. I feel so ill when the bacteria comes back.

I'm also guessing that with the amount of steroids and antibiotics I have had, it's probably not helping my immune system or damaging it even! Hence the vicious circle. 😔

My consultant suggested a different course of action - a low, long-term antibiotic. But he wouldn't do that until I've had another 2 sputum samples that show the HI bacteria. I've had one positive since seeing him last. I need another positive one. And I think I can provide that today. 😔 I'm speaking with a GP later over the telephone and I'm going to ask to do this.

The problem is, my consultant is being very illusive. I have emailed him via his secretary but he is not responding to any of my messages 😒.

[Pipsqueak77 in reply to Teach66]

Hi

Yes I take Azith and have done constantly for many years. Every day apart from Sun… however this is mainly to control my asthma as at these levels it acts more as an anti- inflammatory rather than an antibiotic. Even if prescribed you may find it doesn’t always help with HI and you still need other antibiotics on top…

Good Luck😊

[27Cleopatra in reply to Pipsqueak77]

What was your outcome of your last appointment

[May47 in reply to Teach66]

Hello Teach66. I have had haemophilus Influenza for a long time. I keep giving sputum samples and then start a two week course of doxycyclin which keeps it quiet for about two weeks and then it starts again. I have had multiple courses of doxycycline this year.

My consultant has given me Azythromycin to be taken three times a week for 12 weeks. It seems to be working at the moment but I am only on week 2. I hardly dare hope.

The GP said it is a very hard bug to treat. I am so fed up with feeling so ill and sleeping all the time when it flares up.

Try to persevere with your consultant especially as he has suggested azythromycin.

[Teach66 in reply to May47]

Hi May47,

We sound identical.

I intend to keep 'fighting' to get the right treatment.

Fingers crossed that the azithromycin works for you. I have heard some good things about it.

Please keep me posted with how you get on long term. Take care.

Thanks.

[May47 in reply to Teach66]

Hello Teach66.

I think long term azythromycin is not easily given. I was told at the hospital that there are strict guidelines for long term azythromycin. It can only be prescribed by a respiratory consultant. GPs can't prescribe it. It is obviously quite strong stuff!

This would probably explain your consultant's apparent reluctance.

Could you get the two sputum samples in as soon as possible? I know I would find that to be not too hard!

I do hope you can feel better soon and can get the long term azythromycin . The consultant seems to want you to have it. I am definitely feeling better but I don't want to speak too soon.

Take care.

[Teach66 in reply to May47]

Hi May47,

Thank you again for your reply.

I will keep you posted with regards to the outcome of my next consultation which is on 16th January. 🙂

[May47 in reply to May47]

I really hope all goes well on 16th January. Take care.

[Teach66 in reply to May47]

Thank you 😊

[27Cleopatra in reply to May47]

Has your symptoms been resolved or do you still have the bacteria?

[May47 in reply to 27Cleopatra]

Hello 27Cleopatra. I completed a three month course of azithromycin at the beginning of the year. It was taken three times a week on Mondays,Wednesdays aand Fridays. Miraculously it seems to have cleared the haemophilus. I am feeling so much better after years of haemophilus and doxycycline. I can hardly believe it. It was prescribed by my respiratory consultant.

[27Cleopatra in reply to May47]

Thank you for your reply but according to my understanding it would be resistant to that antibiotics see my test results

Results

[May47 in reply to 27Cleopatra]

Hello 27Cleopatra. I have tried so many medications to try and get rid of haemophilus. Nothing seemed to work. One gp even thought I wasn't taking the medication! How stupid! I would have done anything to start feeling well again. The only thing that has worked has been the three month course of azithromycin. I have been clear now for over four months and I am so thankful. I have an action plan from the consultant for if (when!) it rears its ugly head again.

I really hope you feel better soon.

[27Cleopatra in reply to May47]

Thank you for your message, I will definitely check with my doctor to see if I can try these different antibiotics to see if it works for me too! I know how you feel I’m sick of feeling so low after a bout of trying to get the stuff off my chest! I wish you well and hope yours never returns.

[27Cleopatra in reply to May47]

I have been taking azithromycin for a couple of weeks, and my phlegm is definitely changing colour, and it feels different consistently but harder to shift! I’m exhausted trying to cough it up and wakes me up in the night with rattling in my chest! But hopefully it will get better soon!!

[May47 in reply to 27Cleopatra]

Hello 27Cleopatra. I am so pleased the azithromycin is beginning to work for you.

Your phlegm colour is changing and that can only be good news for you.

I am still clear of haemophilus after 5 months and I am so thankful after years of feeling awful. This has been life changing for me.

I still clear phlegm daily with a flutter device because I am scared of haemophilus coming back.

I have an action plan where I can go on another 3 month course of azithromycin but it is under the strict guidance of the consultant.

I really hope you continue to improve. I am hopeful for you.

Take care.

[27Cleopatra in reply to May47]

Thank you for your support and fingers crossed we are both able to keep free of this awful HI! The flutter value is a must ! Take care yourself x

[Teach66 in reply to 27Cleopatra]

Thank you. You too x

[Shogi in reply to Teach66]

Sadly, once again, we tend to be at the mercy of others opinions!

Had my 3 Respiratory Failure within 6 months a few years ago, as, in spite of liaising with 3 sets of health professionals, telling them how much I was (obviously!) going downhill, prescribed the usual steroid regimes, and being started on my 7th consecutive course of Doxycycline, having tested positive for HI all throughout that treatment, I had to beg for, and wait another another week, to be admitted to hospital for IV antibiotics!

Was a ridiculous situation which caused more long term lung damage, and was touch and go from the pneumonia I ended up with, and the pretty brutal IV drug regimes were awful.

Any already compromised immune system does become further “impaired”, the longer you expose it to antibiotics, steroids for bacterial (or fungal) infections which do not resolve long term. HI is hard to control, as so easily Community Acquired, and by its very nature, is hard to totally eliminate from the lungs.

3 positive tests, and you should be requesting IV Antibiotic treatment. Nowadays, many hospitals, offer this as an Outpatient service, and many antibiotics can be administered by Bolus. But what response you get, is going to depend on the opinions of your GP and consultant.

You know your own body, and how recent/ current treatments of Prednisolone and Doxycycline are failing you, so please, please, please don’t be fobbed off again, as it’s only by using effective treatment to properly eradicate the HI bacteria, that you are going to start getting better, and sort out whether something like a 3 times weekly course of Azithromycin, either over winter months or all year round, might be beneficial in your case, to try to stop the HI from returning. Azithromycin has its own side effects, but your GP/ consultant would have to weigh up pros and cons for you, re your age, state of health, other medications, etc, etc. That, along with all the good hygiene practises that most of us were following long before Covid came along anyway!

Also, using a simple saline nasal spray, really does help with nasal passage hygiene, as that is one of the main entrances for HI bacteria into the body. I use Sterimar, which is just 100% pure, sterile sea water.

There are several links to websites on HI that I would have included, but find I’m unable to copy and paste them onto a reply!

I do hope you get some joy out of your GP today, and to be fair, so many respiratory consultants have had more than enough to cope with in recent years, but I find that it’s attitudes that can be the hardest thing to work through!

Good Luck, and hope you manage to get well and enjoy Christmas with family 👍

[Teach66 in reply to Shogi]

Hi Shogi,

I'm sorry to hear about your respiratory failures that you had a few years ago.

Thank you for your words of advice.

[27Cleopatra in reply to Teach66]

can I ask how you are coping with your bacterial infection now? I too had this and have had 6 lots of antibiotics just finished three months of doxycycline but still it is present in my sputum!

I’m at my wits end knowing what to do!

Thank you I hope you are coping ok

[Teach66 in reply to 27Cleopatra]

Hi 27Cleopatra,

Since posting, I was referred by my GP (upon my request) to do a 6 week pulmonary respiratory rehabilitation programme (in January). I found that the exercise really helped my respiratory problems. The respiratory nurses who led the course did not rate the consultant I was seeing privately, so I decided not go back to him and waste my money. The nurses also referred me to my local hospital respiratory clinic so that they could review my medication. I was seen by a senior specialist respiratory nurse who referred me for tests and to a consultant (via the NHS). She tried me on Spiriva Respimat, but it didnt really change anything. I had already had blood tests (via my private consultant) to test for allergies. These all came back very high. I had more blood tests done to test for lots of various things, including my eosinophil levels, etc. They all came back normal. I also had the usual respiratory tests - spirometry, etc. All these showed up as normal too. I was sent a consultant's appointment for the beginning of July. My respiratory nurse suggested that the consultant might consider me for either for the low dose antibiotic azithromycin or biologic therapy.

I was feeling so much better that I decided to try going back to the sport I once enjoyed a few years ago. I started playing badminton (doubles) and squash again. I also walked the dog everyday and even managed to climb some hills!

In March, my allergies went through the roof - all the usual symptoms - itchy skin(I have excema), runny nose and itchy eyes. The GP prescribed me more steroids to calm my allergies down - I had a 4 week course of prednisolone 5mg x 2 per day. This really helped. I went back to see him after I finished the course of steroids for a review. Apart from my phlegmy cough, which has never gone away, I was fine. The result being, that the GP was happy to 'wait and see' how things went. I also asked if he would prescribe a rescue pack of steroids and antibiotics - I have never been offered this or requested this in the past. He was happy to prescribe 2 packs of prednisolone for emergencies. I was so glad about this.

I went on holiday 3 weeks ago and the week after I got home, I came down with Covid. This knocked me right back again and hit my chest straight away. I started on my rescue pack of pred as my chest was really bad. I waited for a negative result and then went to see another GP on an emergency appointment. I asked her if she would take a sputum test to see if I needed antibiotics. She point blank refused! Saying that it would be too late by the time the results came back. I told her I had started the pred, which she agreed was good. She listened to my chest and said she could only hear a little wheeze. I told her my phlegm was green and that I was not happy to leave the surgery without antibiotics (knowing my history), she reluctantly prescribed me doxycycline. I was very frustrated that I virtually had to beg. Anyway, the pred and the doxy sorted me out within a week, thankfully. My peakflow came back to my norm (which is usually around the 300 mark). At the time of having Covid it had dropped to as low as 230!

I am happy to say that apart from a phlegmy chest and cough, I am feeling so much fitter. I am hoping that when I see the consultant at the beginning of July, she will be able offer some relief for my constant phlegmy chest and my allergies. We'll have to wait and see.

[27Cleopatra in reply to Teach66]

Thank you for your details of your last few months! I was beginning to think I was on my own with this awful bacteria! I’m desperate to have a knee op but will know more after Wednesday when I speak to the anaesthetist! I am constantly coughing up the same as you and three months of doxycycline has not shifted it!! Hope you get better soon x

[Teach66 in reply to 27Cleopatra]

I am learning to live with the phlegmy cough 🤦🏼‍♀️. Unless the cough worsens or the phlegm turns green, I think you just have to carry on as best you can. That's what I'm trying to do. I hope you get your operation soon and wish you well. x

[Patk1 in reply to Teach66]

I've needed 3mths doxycycline 100mg x2 a day to cure it,in past.dont run out of antibiotics -if still signs of infection,speak to dr

[27Cleopatra in reply to Patk1]

I too have had three months of doxycycline but it is still in my sputum! I’m at a loss what to do!!

[Patk1 in reply to 27Cleopatra]

Oh dear.talk to Dr.may need a longer course or alternative treatment.ru still ill or do they think Yr colonised with it x

[Patk1]

I get v ill with it.last Yr took 12wks of doxycycline 100mg x2 a day + steroids+ additional nebulisers+ inhalers.if its coming back so quickly,you probably didn't get it cleared x

[Teach66 in reply to Patk1]

Hi Patk1,

What do you suggest I do to get the bacteria cleared please?

[Patk1 in reply to Teach66]

Talk to yr dr.put specimen in, which will show which antibiotics are effective 4u.id ask dr for an extended course

[Teach66 in reply to Patk1]

Thanks

[peege]

Hi there you could try putting the same question on the AsthmalungUK forum, I know several members on there have it treated. Kind regards, Peege

[Teach66 in reply to peege]

I will. Thanks

[Teach66 in reply to peege]

Hi Peege,Would you be able to provide the link please? I've been on the website and I can't find the forum.

Thanks

[Teach66 in reply to Teach66]

Isn't this the forum?

[peege in reply to Teach66]

This is Asthmauk or Asthma Community..

"Lung Conditions Community Forum" = healthunlocked.com/asthmalu...

[peege in reply to peege]

PS when you open it put Haemophilus Influenzae in the search bar ××

Edit: you can also put Haemophilus Influenzae in this search bar and posts from AsthmalungUK will come up too

[Teach66 in reply to peege]

Thank you. Will do.

[Mum81]

my two year old caught it 4 times in 2 months earlier this year. Each time he was given antibiotics and oral steroids. I’d second other responses that it does seem to be quite resistant to most antibiotics and, if the wrong one, it just passifies it and then it returns. He’s now received an extra pneumonia vaccine to try to support his system further and, so far, that seems to have helped

[Teach66 in reply to Mum81]

I'm sorry so to hear your son has been ill with it too. I will put this to my GP.

[Patk1 in reply to Mum81]

Was he immunised against hib?

[Patk1]

How'd u get on ayers Teach66 x

[Teach66 in reply to Patk1]

Hi Patk1,My GP has prescribed another 2 week course of doxy and 1 weeks course of pred again 🙄

[Patk1 in reply to Teach66]

Gd.if still not cleared 2-3 days b4 they finish,speak to Dr x

[Teach66]

They generally do clear it but then after a few weeks, it comes back again. I think I need a low, long-term antibiotic like azithromycin 😒

[Patk1 in reply to Teach66]

Uncan be immunised against it if Yr antibodies are low