If I hadn’t burst into tears of frustration and exhaustion when I saw the consultant 3 weeks ago I would have been fobbed-off with just a higher dose of Seretide to deal with repeated lung infections. Instead she sent me for blood and sputum tests.
This week I was so tired and breathless that I saw my Dr. She found my blood and sputum test results-unopened- and was able to confirm that after at least 8 months I still have a lung infection and that I don’t have enough antibodies to deal with the pesky H. Influenza bacteria that’s taken up residence in my system. I’m back on a maintenance dose of doxycycline.
Why hadn’t the consultant seen those results? Why is it such a relief to have my condition confirmed and to know that I haven’t been wasting the consultant’s time because that’s how I’ve been made to feel!
Ok, I appreciate that in the grand-scheme of things my condition isn’t life-threatening but it is life-changing and has impacted on my relationships, mental health, energy and ability to work.
Enough!
So, lovely people, is there anyone else out there who’s been diagnosed with low H. Influenza immunity and if so how do you cope?
E x
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Elizabethk
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Hi Elizabeth I am so fed up with this bacteria H influenza, I am so fed up with the infections I get from it ,I dont no about my immunity, I get infection from it every six weeks or so ,I am given to weeks of doxycycline at a time ,I am sure it never clears up properly although my sputum test after taking doxycycline comes back clear until the next time idont believe it has gone ,I have been given azithromycin three times a week the only thing is I carnt get a good run on the azithromycin because I have to come of them to go back on doxycycline, wish I had a answer for you on how I cope with it the sad thing is I dont good luck to you Alice x
Hi Alice, I’m sorry you’ve been laid low by this bug too! So here’s where I’ve been given different advice from you-my consultant said that azithromycin isn’t effective against H.influenza so didn’t prescribe it. Please talk to your Dr/consultant and get some proper advice and tests done.
Take care Ex
I suggest that you write directly ( and politely) to the consultant asking them why they had not seen the results and pointing out the resulting delay in your treatment and therefore your suffering unnecessarily.Keep a copy.
Do not be afraid to do this. It us your right and they have failed in their duty of care towards you. They are held to account for everything which is in writing and hopefully it will concentrate their mind.
Good luck, I hope the doxy works.
BTW your immune system is never going to fight off HI by itself. That is quite a silly thing to say to someone with damaged and therefore vulnerable lungs.I have just had a bout with my bronch and although I gave a very active immune system it took cipro to see it off.
Ciproxin. It is one of the oral drugs used against pseudomonas whichI am colonised with. At the moment my pseudo numbers are very low which gave HI a chance to have a party. Since pseudo became top dog I haven’t had a problem with HI but could definitely tell this was it. Change in taste, change in consistency and colour of mucus and very high fever. Just like it used to be. Luckily keep cipro at home and alrhough it is not the usual first base drug for HI it is very effective against it. Cleared it in 4 days but I am taking the full 14 days to make sure.
Hi, several years ago I had the same problem, repeated chest infections most commonly caused by haemophilus influenza. My GP referred me to an immunologist who after several blood tests gave me a course of 2-3 immunisations against this bacteria. I have never cultured this organism since in my sputum, however I have grown other bacteria instead!
Similar experience - my OH has had HI in the past. Last year he was found to to have immune deficiency. They gave him a number of challenge immunisations to test response. At least one was HI. Luckily, he responded well to this particular vaccine and to tetanus but not to pneumococcal vaccinations. Your GP was really on the ball to send you for immunity tests. From what I read on here it is possibly a rare thing, even at consultant level.
Just the same ,horrible H I bug ,been off work for 2 weeks due to high fever breathlessness and joint pain ,started on doxy but it didn’t clear ,then in ciproflaxin which caused problems with Achilles and shoulder pain ,taken off that and now on 14 days of amoxiclav! This bug has been cultured in my Sputum for over 9 months ,got half yearly appointment with respiratory team at Aintree hospital in 2 weeks so going to ask on how to resolve this .Bronchiectasis is a b****r !
And so frustrating when it takes ages to see anyone helpful! I think you’re being very polite about Bronch but this is a public forum so we have to be civil...
My Bronch is a little added bonus to asthma which makes me come out with some satisfying and unprintable expletives🤬
Hi Elizabeth, sorry it has taken do long for someone to help diagnose you. I too have what they call a mycobacteria that lies waiting in my lungs for thr opportunity to give me another lung infection. Ive had too many to count including respiratory failure twice because eventually the body has very little immunity after constantly working to clear the infection and secondary problems caused by the bacteria. My pulmonologist told me the next time I get sick just stop by his office so he csn go into my lung and capture the type of mycobacterium so he can treat it and get rid of it. I got tired after 10 years of them trying to figure out my problem and decided to stop letting it control my life, anf I got in charge of the health problems. First working on my bodies immune system, then the many other problems that were ignored because my lungs always trumped any other issues. I was told I had COPD. Then told it was severe asthma that Ive had my whole life, and again COPD and after several near death years. My worst enemy is a cold. My doctor trusts my medical knowledge and has always made sure I have Doxycycline on hand if needed. Ive used it at least 25 rounds in the last 10 years and it has always worked. Thats all fine except I still needed better control so I wasn't always sick and sucking air thru an oxygen canula suffering. I had to change mu way of thinking, and change my lifestyle. Soooo, 15 months ago I moved to a lower elevation as I was at 8400 ft altitude. Got out of a stressful relationship, ate clean nutrient dense foods that help the immune system, exercised by swimming as much as I could. I have not had to take any antibiotics in 15 months. I did get a cold last Nov and it sucked but.... my immune system fought and won. I dont know if this helps at all but I know the change in my attitude about taking charge of my disease so it couldnt control me anymore was the first step. Its been alot of work. I had bad depression which I had never had so bad and jyst kept moving my body and learning everything I could about strengthening my immune system. It took time but I am off oxygen totally, and going to the gym 4 days a week now. After 10 years of hell, Im so grateful I was able to beat the odds. My doctors are astonished as they didnt thunk Id live too much longer. Mind over matter is hard when the lungs cannot breathe and life looks grim. I hope you can find a way to get your life better. I know my disease had alot to do with my 12 year relationship ending, but it was the first big step I had to make, or die. He would not move and I loved him so I stayed in a very unhealthy toxic relationship cuz I couldnt imagine being alone. If your man does not support you in getting well and does not help you achieve wellness its very difficult to be well and happy. Getting the high stress out of my life allowed my mind to work on me and I am well, happy and loving my life. I would have never believed I could feel like this even 6 months ago so I have alot to be thankful for. My mountains, wilderbess, my dog for 17 years, and just recently a real man that cares so much and loves me in a way I thought would never happen. If you would like to talk about anything, let me know. I dont usually get on this forum but they sent me an email saying maybe my experience can help. By the way I havent shared all of this with anyone yet and it has helped me to see just how far Ive come. You can overcome too. Keep at it and love yourself. My medical knowledge comes from many years of research, medical school, being a paramedic, and lots of reading. Your immune system is #1 until you feel in control. The doctors can help but only you know your body. Research all you can about getting your immune system strong, exercise even if its on your bed. I did and that was a start, and now theres nothing stopping you. Sorry this is so long!! Lisa
One more long thing because I got a little off track... Doxycycline did get rid of the lung infections most of the time, but the mycobacterium is still in my lungs as far as I know. Ive been hospitalized dozens of times for weeks at a time for 13 years due to lung infections. Doxy didn't kill the bacteria just kept it at bay. When I was on life support and nothing was working they used 3 antibiotics at once because I was dying. They used levaquin, and it finally worked. Its heavy duty and was only available intravenously back in 2008. Its now in pill form as well. The key to my getting well was to become somewhat of a germ freak. I didnt go to friends homes where there was a sick person, always had hand sanitizer, isolated myself during my "job" of controlling my health so my immune system could have a chance to strengthen. It was diffucult to say the least but I know for me, it was the only way. I was 44 the first respiratory failure which caused a heart attack, 45 the second time and had a tracheostomy because they could not get my airway. I know my condition was much more serious than you have described but I wanted you to know that my experiences gave me alot of information to draw upon. Theres no excuse for your health care person not to have had your lung problem resolved by now. Im in the USA and I dont believe the doctors here are any better or worse. I do know they work for me and they better be doing their best or their fired. Demand answers to every question you have, get copies of every test no matter what it is because its your life and you owe it to yourself to know and have access to any info youll need in the future as well. New doctors can help you quick if you have your history with you. You wont have to wait for paperwork, unnecessary appts, something missed. I tell everyone I know that is battling health issues this. It gives you some armour to battle with and maybe even save a life. Hang in there and remember they work for you. Dont take any crap such as " thats not our policy" or " you will have to get results from your Dr". If you get an MRI, XRAYS, blood tests. Any tests... tell them you want a copy of the results now or mailed to you asap. Im 56 now, have 8 grandkids, and a full life. Yes I still have lung issues but they dont dictate my life. I love to hike qhen possible and have limped for years. Now I can have a much needed knee and foot surgeries that have been put on the back burner all these years because of my lung problems. Take care of those lungs, they can make life miserable if their not cared for, especially by a doctor. Its ok to be upset with them when they drop the ball. They need to know too, so they dont keep making the same mistakes that could have saved you lots of distress. Every day of your life matters. Reinforce that to your health care team. Best wishes to you. I hope you are feeling better soon. Whip them care givers into shape so you are all on the same page. Know your options, ask questions. Dont feel like you have to save their time when you have an appt. Take all you need. Be armed with your history,test results and expectations. Geez, sounds like Ive been put thru hell too many times. Not anymore 😊💪
Oh wow! That’s an amazing response-you have a brave heart and phenomenal amount of wisdom to share. I hoped for some advice and sharing of similar experiences and your post has exceeded my expectations!
Thank you. I can’t agree more about the harmful effects of stress and wish that there was more research done regarding the effects that menopause has on women who have an underlying respiratory disease. I’m sure that I had immunity problems in my early 40’s that were never acknowledged. I used to work in a nursery with children and constantly suffered lung infections. I no longer work with children but in a care home where there is a lower risk of my encountering the same load of infections. But for the past 4 years, as long as I’ve been peri menopausal, I have felt more stressed and anxious and can feel my lungs shut down at the merest hint of stress and it takes me longer to recover.
My partner found my state of perpetual illness difficult to understand and at times accept. He is a good man but I didn't realise what was going on so couldn’t explain and we have both been so frustrated by the lack of diagnosis. Unhappiness and stress have exacerbated my condition at times but we have been best friends for 32 years and supported each other through bereavement and difficult times. Since having some proper diagnostic tests done and results that point a way forward there is more compassion on both sides. It’s been horrible for my partner to watch me suffer and not know how to help.
Now, the NHS is not known for listening closely to the needs of their patients. A Dr’s first thought is usually “how can I avoid sending this person to see a specialist?” because it costs the Dr’s practice money to send you to see a specialist. I’ve been advised by one Dr to use Vaseline inside my nose to avoid sniffing up pathogens-I had a painful reoccurring sinus infection and she was reluctant to give me antibiotics-I asked if, in her professional opinion, it was worth using and she said that she didn’t know and that her daughter didn’t like to use it. Yep, great advice. It took me 6 months of constant lung infections to be referred to see a specialist and when I saw her she hadn’t seen my notes and declared that it was just uncontrolled asthma. They don’t take you seriously unless you weep!
I love to cycle but have found getting my breath back more difficult recently. There should be some joined-up thinking now that my Dr has seen my results and I’ll be sent to an immunologist who can help me deal with the persistent underlying infection that exacerbates my asthma. And you are right, I need to be more assertive with these professionals and let them see that I need help and answers to something that has plagued me for way too long!
Your post has been an inspiration and I’m delighted that you have found solutions, a great relationship and got in touch. Take care. E x
Hope you are on the right track and the immunologist. It sounds like it. Let me know what they do and find. I am always looking for possible connections and successes for asthma and immune system problems as I am battling both all the time. ❤️
I often feel like I have wasted the time of specialists. I’ve traveled a distance to spend 5 minutes in their presence only to be asked why are you here. It’s so depressing. I don’t choose to see them I am sent. I feel like it’s “ I don’t know what to do I’ll send her to someone else.”
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cursed Pseudomonas again
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