Moraxella - Haemophilus influenzae - HIB - HELP?!

[JayRobz]

Hi everyone. I’m new here, I stumbled across this page by a fine miracle, so happy I’ve found the right group for me.

I won’t bore you all but I’ve had previous bi lateral PE’s, community based pneumonia, Covid (long covid now) all 3-5 years ago. I’m 28 now, this all started at 22. I’m part time in work and have been very poorly since.

Ever since the pneumonia I have not been right since. Even after bi lateral PE’s I was ‘okay’ on a blood thinner for life now. But the pneumonia I got I have been saying to my GP and respiratory consultant for YEARS.. “something feels, cold wet and sticky in my left lung” and nothing has been done. All my consultant is doing is ordering every asthma test under the sun and all come back clear, even though he’s sure I have asthma?

ANYWAY.. I had a breakthrough recently as everytime I exercise I get ill. Chest infection, swollen neck, sore throat, ears etc.. and managed to catch a sputum same of moraxella MCAT. I was given doxyclcine for 14 days at 100mg and felt awful but finished the course. 2 weeks later, I return to the gym (as I knew it wouldn’t clear this as I’ve been taking ABX for the last 3 years, over 12 different kinds, penecillin, amoxicillin, amox o clav, doxy) and that cold wet sensation has never left me).. so i repeated my sample and BOOM. It’s now showing HIB!!!! they’ve given me amox o clav and amoxicillin but i dont want to take it as I have previously and it HAS NOT cleared it. Why would I take this again? I need something stronger, preferably IV and something my body has never had. I’ve been living with this constant flu like feeling for 3 years, and when I slightly exert myself or exercise BOOM I’m full blown ill again. I’m constantly living on the edge. I NEED THIS THING OUT OF ME ASAP!!!

Can anyone please help??????? I am going to show this to my GP and consultant because I cannot keep blindly treating this, clearly all the other ABX have not eradicated it.

thank you so much

[LMEI]

I am sorry you are having trouble getting the right course of treatment. Sometimes the drs go with the cheaper option first but in the long run this isn't good for the poor patient. IV antibiotics would hopefully give the bug a run for it's money.

Drs never seem to listen to patients. I wish they would.

I do hope you get sorted. You can't go on as you are as you will become resistant to the drugs they keep giving you.

Let us know how you get on.

Take care and stay safe. Linda

[JayRobz in reply to LMEI]

Hi. Thank you for your reply!

My frustration is beyond nothing you’ve seen! I have attended so many appointments, took so many drugs, been to the brink of very severe mental health as I feel like I’m being made to feel crazy!

I’ve looked into so many different avenues Lyme disease, Mold, auto immune, POTS, MCAS, EBV you name it. This whole time I’ve been telling my health professionals “ever since I got pneumonia I haven’t been right.” And it’s just been ignored!!!!

Whilst I’m just getting ill everyday. I’m now at a point where I’ve taken so many ABX that I’m worried they don’t for me. The Moraxella I had I was given doxy for 15 days but 2 weeks later tests for HIB? So the doxy obviously didn’t clear that. I’ve had many rounds of amoxicillin in the past and some co amox as welll. Why would I put myself through more hardship and pain of ABX knowing at the end it’s not working?! I’ve done this countless amounts of times and it’s clearly not shifting, why can’t the health professionals see this?! IV anti biotics and a new form of ABX I’m not resistant to is surely the logical thing to do from here and then a good follow up from my respiratory consultant (or at this point a new consultant who’s more open minded). He’s done a CT 2 years ago and he says my lungs were normal but clearly not?

I’m just so frustrated living with this, it’s seriously affecting me. Thanks for your reply!

[LMEI in reply to JayRobz]

Swizzy always has good advice so do get a referral to a Specialist. Stand your ground. It's your lungs, not theirs. x

[Alberta56]

Welcome to the forum .I can't really help you except to say that Doxy and Amoxiclav seem to have cleared Haemophilus out of my system. (I felt very ill on both of them, especially Amoxi.) Everyone here who's had pneumonia agrees that it takes a long time to recover completely and that you need to be gentle with your body while doing so. Are you aware of that when you go to the gym? The other thing that comes to my mind is- are they sure it's asthma and not something else like bronchiectasis? or one of the several other rarer lung diseases which come up on this forum? I hope they can find a solution soon , so you can get on with your life. Best wishes.

[Mydoggnasher]

Hi jayrobx....and welcome....I can't help with what you're suffering with,....but just want to wish you well and hope you get this sorted for your own peace of mind ....There are many wonderful people ❤️ on here who I'm sure will reply with similar health issues..and help you.

Good luck...put your foot down and tell doctors..this just isn't good enough.

Hope you get it resolved ASAP .

(Lesley)

Gnasher the dog 🐕 ♥️

[Patk1]

Hello + welcome to the forum. I've had hib numerous times + it can be hard to clear.it sounds like you've not cleared infections and may need longer course of antibiotics.you should take what u have been given asap - the path lab send results with best antibiotic to clear it.if 2-3 days before course finishes, yr not right, do speak to Dr and get more antibiotics. If u feel mucous, take a look at aluk website at lung clearance techniques eg huffing + perhaps do for 10-15 mins morn + night.if mucous stays there, it will keep getting infected, so you need to get it up. Drink plenty of fluids and rest up

[JayRobz in reply to Patk1]

Im worried about taking the prescribed ones as ive taken them in the past and no result. it came back!

its also only a short 5-7 day course which again, i dont understand. I have a saline nebuisler that I use daily but the infection is all in my ears, neck as well as my chest.

[Patk1 in reply to JayRobz]

Do u do lung clearance sessions 2x day?if u have mucous, u have to be very proactive in getting it up, especially after saline nebuliser or it will keep clogging lungs+ airways& get reinfected. Also do u carry + use antibacterial gel when I go to the gym? If u get ill ea time, yr prob picking infections up there.also in addition, do u wear a mask or use viral blockers eg vicks 1st defence nose spray & coldyme throat spray? Bacterial infections often follow viral infections in susceptible lungs. I also take hi dose vit C, D& Omega 3 capsules to support immunity.

[Swizzy]

Your GP and your asthma consultant are both way out of their depth with this and too arrogant to say so. Meantime your health is deteriorating.You need a proper diagnosis. The pneumonia and many infections points to bronchiectasis having developed from the assaults on your lungs. GPs and general respiratory consultants know virtually nothing about this. I cannot diagnose you because I am just an experienced patient but you need a bronchiectasis specialist to diagnose and treat you. They would do a ct scan which is the only way to diagnose bronchiectasis. They can then treat it properly and help you to manage it. Bronch specialists also diagnose other conditions.

Look at the website of your nearest teaching hospital for a bronchiectasis specialist. Take the name to your GP and INSIST on a referral. Don't take no for an answer.

One thing is for certain. These two have been floundering around for far too long and it is time that you become pro active in support of your health.

[JayRobz in reply to Swizzy]

Hi. Thank you for your reply!

My frustration is beyond nothing you’ve seen! I have attended so many appointments, took so many drugs, been to the brink of very severe mental health as I feel like I’m being made to feel crazy!

I’ve looked into so many different avenues Lyme disease, Mold, auto immune, POTS, MCAS, EBV you name it. This whole time I’ve been telling my health professionals “ever since I got pneumonia I haven’t been right.” And it’s just been ignored!!!!

Whilst I’m just getting ill everyday. I’m now at a point where I’ve taken so many ABX that I’m worried they don’t for me. The Moraxella I had I was given doxy for 15 days but 2 weeks later tests for HIB? So the doxy obviously didn’t clear that. I’ve had many rounds of amoxicillin in the past and some co amox as welll. Why would I put myself through more hardship and pain of ABX knowing at the end it’s not working?! I’ve done this countless amounts of times and it’s clearly not shifting, why can’t the health professionals see this?! IV anti biotics and a new form of ABX I’m not resistant to is surely the logical thing to do from here and then a good follow up from my respiratory consultant (or at this point a new consultant who’s more open minded). He’s done a CT 2 years ago and he says my lungs were normal but clearly not? So I would consider bronc but then my CT would show it right? This is now affecting all my jaw, ears, throat, neck even feel like pressure in my brain, it’s awful!!

I’m just so frustrated living with this, it’s seriously affecting me. Thanks for your reply!

[Patk1 in reply to JayRobz]

U really should request a ct scan if it's been 2 years since last one. U could ring 111 or go a&e x

[Lfcpremier]

I know it hasnt worked before but if its sensitive to it from your sputum sample it should work!A 2week dose of 625 strength, Co amoxiclav. I had given up with amoxycillin so stopped that for yrs. However, given it again at Xmas & it did clear pneumoniae for me.

You need to find a good consultant with specific interest in your condition. Press for referral! Good luck!

[JayRobz in reply to Lfcpremier]

Thanks for the reply!

So I I fully understand the labs test what treat the bacteria, however I’ve had this for 3 years and within them 3 years I’ve already taken so many rounds of ABX I just cannot risk that these will work. My last moraxella infection showed doxy would kill it, however I feel no better. Also, doxy is meant to kill HIB but it clearly hasn’t as 2 weeks later I then test for HIB? So if the doxy was good enough if would of killed the HIB to?

Given the fact it’s been sat here for years on and off nothing is treating me, and it’s making me so poorly. I want an ABX I haven’t had so I know there’s no chance of resistance and ideally IV to really nuke it.

[watergazer]

hi and welcome JayRobz. I’ve had pneumonia and understand your frustrations.months after pneumonia I had to stop going to the gym because I would be okay for a week and then get ill again my pneumonia took months to clear and a CT scan showed why. Now if I get a flare up it can take me a few months to recover. As others have said you need to see a respiratory specialist to help you improve. Cx

[JayRobz in reply to watergazer]

Maybe I went at it too quick but this has been on going for 3+ years now!

I think I have taken mutiple courses of ABX and also had mutiple months off the time... 3 months, I go back same symptoms show. Take more ABX, take another 10 months off, go back, get ill. It just keeps happening. I thought I had some rare type of auto immune disorder but to me now I have a positive result for 2 strains, tells me it's just living there and not being killed.

It's driving me insane. It's all in my ears, neck, mouth (even had my tonsils removed) and they are just not listening to me!

What do you do to prevent it coming back and or how do you manage it?

[knitter]

I can sympathise , I contracted pneumonia years ago , switched on my asthma symptoms . Weirdly enough my three cats at the time caught pneumonia too , coughed and wheezed after .

I too tried many different ABs .

Has pulmonary rehab been offered to you , graded supervised exercise ?

Your appetite , is it poor ? Can you manage a diet high in fruit and veg with good protein as well ?

I take a multivitamin tablet , when I remember

I tried Acupuncture , gentle yoga classes , meditation . Often meditation concentrates on breath work , but slowly I got used to that . Yoga alternate nostril breathing . Buteyko breathing , but be careful with that , seems simple but do it wrong can aggravate .

Good hand washing , cleaning surfaces in the gym if you go , mask if needed in public places to avoid reinfection .

ALUK helpline open to UK residents during office hours , working week .

Take care and best wishes

[Moaningxcat]

Sorry you are struggling. It’s an isolating feeling when doctors do not listen to you. Anyway, maybe my experience will help you a bit. Last April, I was admitted to the hospital with head splitting pain. The diagnosis was Giant Cell Arteritis and my rheumatologist prescribed prednisone and methotrexate. I had a horrible cough, but that was disregarded. My GP ordered X-rays but stated no evidence of pneumonia. After many months, I asked my rheumatologist for a CT scan. Luckily, she agreed. CT showed bronchiectasis. I was finally referred to a pulmonologist who performed a bronchoscopy. They found HIB and non tuberculosis mycobacteria. Luckily, antibiotics are helping and I use a nebulizer with saline solution and a flutter valve. I am feeling just about back to normal. I guess, long story short, my advice would be to push for a pulmonologist referral.

Good luck to you. I hope you get the help you need to feel healthy again.

[peege]

It might work if you were given a much longer course of a decent antibiotic. I was in exactly your situation a few years ago it wasn't until I was given a 3 to 4 week course that I finally began to recover. I also took loads of vitamins minerals tonics and manuja honey to help myself recover and rebuild my immune which of course was wrecked.

If you're in the UK call the helpline on Tuesday on 0300 222 5800 office hours to see what a professional suggests.

Good luck, Peege

[JayRobz in reply to peege]

so happy you commented! I actually came across your post from years ago! Did yours go on for so long and just keep coming back? I’ve had the lingering feeling in my left lung for ages and I’ve been screaming at the top of my lungs “THERE IS SOMETHING THERE” and nobody is listening. I know because before I had pneumonia I wasnt getting all these infections and guess what, I didn’t have this feeling!!! But ever since I had community based pneumonia. The feeling has never gone and in return I keep getting infections. I think it’s always been this as the report from the pneumonia was influenza like this. I just think it’s been lingering and never fully died. Then as soon as I exercise or whatever it wipes me out, clean! I too take over 12 vitamins, mullein leaf, nebulise I do all the natural stuff but nothing has truly ridden it!

What anti biotic did you use out of curiosity? So happy you’re doing better!