Haemophilus influenzae - Since June

[RobertCLL]

I have had a mild chest infection since the 20th June.  Producing mucus mainly in the morning for the first few hours.  Then clears during the rest of the day to sporadic coughing and mucus.  The history of this infection is below:

Was initially prescribed Amoxicillin 500mg capsules - 42 capsule - take one 3 times/day, with no effect.

13 Aug

Chest xray normal. Sputum test grown Haemophilus influenzae. Tetracycline 250mg tablets - 40 tablets - take one 4 times/day

3 Sept

Sputum test still have Haemophilus influenzae. Tetracycline 250mg tablets - 112 tablet - take two 4 times/day

29 Nov

High resolution CT scan of lungs, also another sputum test. Sputum test once again grew Haemophilus influenzae.  Lungs shoed a small area of infection on the left side lobe.  Prescribed Co-amxilcav 500/125 mg and Amoxicillin 500mg for 7 days.

As of today’s date I am coughing more and producing more mucus.  I am due another high resolution CT Scan on the 5th Jan and telephone appointment on the 9th Jan.

Oxygen sats, blood pressure and temperature all normal.

As this is persistent a persistent infection dating back to the 20th June and given the amount of antibiotics taken, any thoughts on my next steps.

Posting update: Still on Ibrutinib and IVIG. In general all of the AB listed above have been extended duration doses.

[Poodle2]

Hi Robert, sorry to hear about your ongoing infection. Are you still on Ibrutinib? Have you seen an immunologist? I had a similar experience, my infection started from an ordinary cold, rhiovirus. It kept on going for about 5-6 months. I had several courses of antibiotics. I don't want to scare you but I ended up in hospital with sepsis so it's really important to watch out for any signs of it but it seems you are very vigilant.

I think you might need a longer course of Co-Amoxiclav to begin with, I now always get 2 weeks at least. It might be helpful to have a longer course and then probably start prophylactic antibiotics (I have been on them since May 2022) or IVIG, depending on your immunoglobulin results. This is something that you should discuss with an immunologist.

The only thing that eventually worked for me was to start treatment. I am not sure if you are on any CLL medication and how your blood numbers are.

Definitely ask to be referred to an immunologist.

I hope you get better soon. The 5-6months of me having the ongoing infection coming and going was the worst time I have had in my entire life, I had no energy and it was awful to constantly feel "sick".

Wishing you all the best.

[RobertCLL in reply to Poodle2]

Yes still on Ibrutinib and IVIG. In general all of the AB listed above have been double duration doses. I am due for my IVIG infusion on this Saturday, this one is going to be a dose increase from 20grams to 30 grams.

I might ask about my next course of AB being prophylactic.

I am lucky that this infection is causing me no problems (apart from the cough).

[Poodle2 in reply to RobertCLL]

Have you been seen by an immunologist? Who has been prescribing your antibiotics? See if you can see an immunologist, they might find something that will work for you? All the best.

[RobertCLL in reply to Poodle2]

A doctor at the hospital with input from the immunologist has been prescribing. Hoping that a new sputum test and sensitivity will give me some help on a suitable AB.

[Thundercat2]

When I had a very severe sinus infection I tried several antibiotics for 2 weeks and nothing was working. My ENT finally put me on Levaquin. Levaquin and Cipro I have learned can have some pretty intense side effects, ( tendon tears or something like that) so I was pretty anxious about it but my ENT said it was probably the only way to get past the infection.

If you look up those two antibiotics on here there is a lot said about them. It's worth checking into though and weighing the risks.

I will also note this patient power video that I found very helpful. patientpower.info/video/chr...

It's a lot about sinuses but also respiratory infections. Note that Dr. Awan talks about Levaquin as an option. Again I'm not promoting it, just pointing it out.

Hope you feel better soon.

[RobertCLL in reply to Thundercat2]

I also read recent about Cipro, which I have had before for sinus infections. Lucky I had no adverse effects. Not had Levaquin before.

When I am at the Haematology ward tomorrow I will get some sputum pots and see if I can get a sputum and sensitivity test done before my review on the 9th Jan.

[SofiaDeo in reply to RobertCLL]

IDK who the appropriate specialist in the UK orders "sensitivities with MIC" when ordering Culture & Sensitivity, but please try to get this done if you can. Possibly an Infectious Disease one?

The problem with modern Culture & Sensitivity reports (at least in the US) is that the results come back a simple "sensitive" or "resistant". But it's actually a bit more complicated with stubborn infections. The test historically measured how much of the drug (concentration) affects pathogen growth in a circle around it, on an agar plate. People developed correlations to measure the Minimum amount of drug needed to Inhibit the bug; that is, the Minimum Inhibitory Concentration (MIC).

On occasion, infections are technically "sensitive" but very very close to the "resistant" line. So higher doses/extended bouts of treatment are needed to actually clear up the infection. And in the case of allergies or severe side effects, or ability to penetrate a particular tissue, occasionally a drug one was technically "resistant" to got used, with higher doses for longer. I would think you personally need something that readily gets into sputum, in addition to lung tissue/blood.

So looking at the MIC's is helpful for stubborn infections. I pay extra if I have to in order get them, and since I've had my immune globulins tank with treatment, my docs can get them approved. You've been battling this so long, I hope you should be able to get this done for your particular case.

[RobertCLL in reply to SofiaDeo]

MIC is interesting. I will try and get this added to my sputum test form. Being in the UK I hope that are familiar with this.

[SofiaDeo in reply to RobertCLL]

It's a part of the Culture and Sensitivity test, an "additional step." So instead of ordering "Culture and Sensitivity", it's "Culture and Sensitivity with MIC's". There is at least one place in the UK doing these:

bsac.org.uk/wp-content/uplo...

Here's a company in the UK offering it, with introductory explanations, it's the main company in the US also:

idexx.co.uk/files/microbiol...

[RobertCLL in reply to SofiaDeo]

Is this not done as a test at a hospital?

[SofiaDeo in reply to RobertCLL]

A hospital needs either the capability/machinery to do it, or it is sent out.

I have to take any specimen my GP does on me to a local hospital since that's the only place in town doing them. He has a Labcorp lab associated with his practice (onsite) and they say they do not offer it. So I registered at that hospital as an outpatient, and took the specimen to the lab. Larger cities here in the US often have courier services to do this, but not in the small city I am at when seeing my hem-onc.

I have no idea how your system works to get this ordered, if only a specialist (like an Infectious Disease doc) can do it or not. When I worked at one VA (Veteran's Administration) hospital, only an Infectious Disease doctor could order MIC's, they wouldn't allow docs who weren't experienced at interpreting MIC's to order them. So the NHS probably has *some sort* of system for getting these done, I just can't comment on how you can go about it.

If you were in the US, having an Infectious Disease consult would probably be the way to do it. My GP then did it because I specifically asked about it; I am certified in pharmacokinetics and could run the numbers for my own specimen. So he did it; the lab didn't care if an outside GP wanted MIC's added to the Culture & Sensitivity.

[AnneHill in reply to RobertCLL]

Hi, your symptoms are similar to mine. I have only seen the nurses at the doctors and had the basic checks. Did you have signs of a chest infection?My breathing is getting worse. I will be speaking to the consultant next Tuesday and its time I was tested. My platelets are getting lower and I may need tests but I have IVIG and I am in remission. Anne uk

[RobertCLL in reply to AnneHill]

The only sign of a chest infection was the cough and flem first thing in the morning. CT scans did show a sign of infection in the left lobe. I was lucky no adverse effects on breathing etc.

[AnneHill in reply to RobertCLL]

I started off being wheezy but its gradually got worse over the months. I have had the cough and flem and my breathing is now getting worse. Still coughing.I dont normally have a cough. I think I need a scan. The nurse listened to my chest and couldnt hear anything. Anne uk

[RobertCLL in reply to AnneHill]

They never hear anything on my chest as well. Also an Xray didn't report anything. I did have a high resolution CT scan which showed the infection.

[AnneHill in reply to RobertCLL]

Thats interesting. I thought I had been checked and the nurses didnt have a clue what was wrong. I will have blood tests on Friday and on Tuesday the consultant will ring. If my platelets have fallen again I will be having a BMB and scans. I have mentioned my breathing before but it was nothing like as bad as now. Hopefully it can be looked into.I wont be able to say my chest is clear.

[Spark_Plug]

I've been given the broad spectrum antibiotic, zithromax (sp)? If you've ever been a smoker, even quitting years later can reduce the efficacy of simpler antibiotics as was told to me after a bad case of bronchitis.

[Wishing1202]

I was also given Zithromax (also known as a Z-pack), which cleared my lungs after 9 months of on again/off again lung infections. During that 9 months, I was able to clear each infection without an antibiotic. I gave in and took the Zithromax after I had an infection just 2 weeks after clearing the previous infection. I have not had an infection since.

[RobertCLL]

I was given Zithromax some 20 years ago and had an allergic reaction to the drug. No saying that I would react again given that it was 20 years ago.

[Spark_Plug in reply to RobertCLL]

Our bodies do change. My mother never had problems with sulfa- drugs for decades, then she ended up in E/R with a reaction and it's been a no-no since.

[Billhere]

Sorry to hear. Seems like the current antibiotics are repeat and you are in a treadmill. We use Augmentin here and Cipro too. My GP escalates after one failed course. Best of luck.

[ChattahoocheeBoy]

Hi….just happened that my family doctor checked my chest yesterday & found pneumonia in lungs prescribing a course of Azithromycin……had first just gone for a sore throat….so good to be proactive! Flying off to sunshine mid-winter might help too as I tell my family in Seattle’s weather similar to G.B.😊 Be well soon!