British Lung Foundation
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Pnemonia feeling very worried

Hi all

About 6 weeks ago, I went for a CT scan as I had been having stomach issues and they found an incidental finding of widespread consolidation on LLL. I paid to see a lung specialist immediately and he informed me it was pnemonia and I was placed on antiobiotics. However, it was all very puzzling as I had no symptoms except a raised temperature, headaches and generally felt out of sorts. An X ray 3 weeks later revealed that it was still there and had not responded at all. Despite the specialist, telling me it does not look like cancer - I am still beside myself and struggling to cope. I am now on different antibiotics and I have started to cough although not badly - bringing up clear phlegm! I am concerned that I am not responding to these either as I still have a cough and nightsweats (not bad ones just hot and bothered with some sweating). I have requested a repeat CT scan on the 9th of Jan. I am 42 and a lifelong non smoker, in good health. Am I being overly concerned or has anyone had a similar experience? Would be so grateful for any words of advice.

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Sounds unlikely to be cancer in al honesty. I think maybe they do a sputum sample (ask for one) to match you up with the rights abs, they don't all work for all of us, it's trying to find the right one to help. In the meantime keep warm, stay in, rest and drink LOADS of fluids. That's the best cure.

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Thank you for taking the time to reply! I am hoping that is the case...Hope you have a good NYE and thanks once again xxx

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Ps does drink loads of fluid stretch to a cheeky glass of bubbly? 😜 for medicinal purposes of course xxx

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Prob won't do any harm. It doesn't sound too bad for you. When I had pneumonia I could barely get down the stairs for couple of weeks, I was so poorly, all I could manage was herbal tea and water. I was only 37 when I had it too, so it sounds like your coping quite well.

Make sure GP does that sputum test so you can get the right abs Clarithromycin and Azrithromycin are common ones that seem to work better in some people that amoxicillin or doxycycline.

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Thanks again! That was the problem I felt fine and the diagnosis of atypical pnemonia was at odds with how I was feeling. Glad to hear that others have had it relatively young! I have had 5 days of both Clarithro and Doxy and now on Septrin which is supposed to be better for atypical pnemonia. Hoping it works but not feeling much better to be honest! Let's hope rest and fluids do their job too! Hoping you have made a full recovery now xxx

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Hi, it is possible to have what is known as a hidden pneumonia. I believe I contracted it when I had my first chest infection, but never knew. It made me very vulnerable to getting further chest infections, but I did not have the atypical pneumonia symptoms. However, a few years ago, I was very ill and the hospital insisted on admitting me. I had pneumonia and was put on IV antibiotics and given two courses of antibiotics to take at the same time. Since then, I appear to have been free from further chest infections. You maybe have the hidden pneumonia and probably need a double dose of antibiotics to clear it.

I hope you feel better soon, as this type of infection can cause scarring of the lungs.

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Thank you I really hope to be better soon! I paid to see a private lung specialist and he is being very proactive at trying to get it sorted! It is definitely not a normal type of pnemonia as I felt relatively ok when I was diagnosed. Hadn't realised the high temp and slight breathlessness very much! Worried about scarring .... i'll try to see the GP in the meantime before the next scan and see if he will prescribe a different type of antibiotic! Are you fully recovered now? Hope so and thank you for your reply really helpful

Xxx

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Hi...I was in a similar position to you..7 months down the road I have had so many antibiotics and still have patchy area on my lower right lobe and indeed my upper left...Look up boop....Its a form of pneumonia that responds only to Steroids....hope u keep going until you get results.I had to fight to get someone to listen to me.Good luck.( boop is the old name.).think its called organising pneumonia now.. but just letting you know...when pneumonia does not respond to antibiotics u need to look further..good luck.

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Thank you that is very interesting and useful! I will get googling now as I'm a teacher and desperately want to get back in the classroom but would not be well enough at the mo! How did you manage to get it diagnosed in the end? My lung specialist is pretty amazing and has pushed my GP into taking it more seriously best £190 I ever spent!!! Xxx

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Only just now, after 7 months of not feeling well and not responding to many antibiotics..had 3 ct scans and several chest xrays.I saw 2 lung specialists and both saying different things...But I kept going and searched things myself I was so desperate.(Like u I work in a school and am still off.Just one thing, it can take 6 wks to get a clear xray after having pneumonia..the red tag is if your xrays are not clearing or clearing a bit then showing patchy areas again...I would see a specialist again and ask questions....WHY AFTER SEVERAL ANTIBIOTICS IS THIS TYPE OF PNEUMONIA NOT RESPONDING...THERE IS THE CLUE...GOOD LUCK...

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Thank you I will def be persistent in pursuit of some answers! I started coughing during this latest set so no idea if they are working! Not feeling particularly optimistic as still quite breathless at times and headachey and fatigued! Has yours cleared up now? X

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Not cleared yet as only just got a proper diagnosis....but the pattern u are describing is so like the one I went through....(I was told pneumonia in may and was treated with IV antibiotics and also sent home on more for 15 days).....June...July...Aug chest xray not clear..But I wasnt feeling too bad..v tired..Then Sept began to feel like a bad flu...told I had pneumonia again( had yet another chest xray)Then wk after another chest xray and told it was clear....But I was getting more breathless...coughing more and feeling awful...Saw 2 specialists...2 ct scans....same area of lung patchy as in may....eventually I asked gp send me to a chest clinic for a valuation as I was so tired of it all and this is where I am now...sup to have a bronchoscopy( but the chest specialist noted that pneumonia that does not respond to antibiotics is called boop.....and I was put on steroids for 10 days....this made a great difference and showed an improvement on ct scan( my 3rd)..But now getting breathless again and it seems u need to be on the steroids from 1 month up to 6 months as a relaspe can happen...Im bk on the 18th to the hospital and hope now that its a clear enough picture to the doctor.....he said it looked like this boop but unfortunately did not keep me on the steroids long enough....So Im hoping it will be sorted soon....

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Hi Jo

I find a combination of antibiotics usually does the trick so testing for bacteria and five days of IVs in hospital, they gave me three different ones last time I don’t know which, then home with a fourteen day course.

I have to retest for penicillin allergy, they tell me it is the best but I have rashes so I have to go in for the tests..unfortunately for the other antibiotics you need a combination to cover the wide spectrum of bacteria.

For example doxycycline is a third class antibiotics so not so effective.

I have awful side effects and intolerances but not much I can do about that. Probiotics they say can help but nothing is proven.

Good luck with your private doctor. Take care x

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Thank you very much for your reply! I was on Doxy as also allergic to penicillin. Handed in sample so hopefully that will help to diagnose the right antibiotic. Really desperate to try to get it sorted now! Hope you are on the mend also. Xx

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