Discussions By Condition: I cannot get a diagnosis.

Recurrent Pnuemonia Infections

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: jboyuklad
  • December 13, 2008
  • 02:02 AM


I'm new to this site, so please bear with me!

For the last 6 years since 2001 I have been coming down with pnuemonia infections. At some points I was getting pnuemonia every 6-9 months.

Each time I have caught pnuemonia it has got worse in its severity. At first I would only require 3-4 days in hospital on IV anitbiotics and I would be fine. Nowadays I always end up on the High Dependancy Unit (HDU) and on CPAP. Usual stay in hospital now is about 3 weeks 2 weeks on HDU and 1 week on a medical ward.

My last pnuemonia was the worst by far. This time round I ended up on the Intensive Care Unit (ICU). I also have several blood clots on my lungs. Eventually I went into respitory arrest and had to be ventilated and later I was given a tracheostomy. I spent 3 weeks on the ventilator and in ICU after that I spent one week on a medical ward before being allowed home.

I have now been under investigation for about 4 years due to the regularity of these infections.

At first I was seen by a chest doctor who looked to see if I had a congenital malformation of my lungs, organising pnuemonia causeing bacteria as well as other lung disorders. The doctor told me he could not find anything that would be cauing the frequent recurring pnuemonia.

On nearly all my admissions they have suspected HIV and everytime I have tested negative for this disease. However during one of these tests my CD4 count was done and it was only 195. Now I was told that this was severly low infact HIV + people at this stage would be descibed as having AIDS. I was also told that it is normal for your CD4 count to drop during an infection however it shouldn't drop this low.

At this point was referred to immunology. They have tested for everything under the sun from CVID, Complement deficiency to IRAK 4 Defect. All these tests have come back negative.

It was discovered however that I had no pnuemoacoccus antibodies and I was quickly given a pnuemonia vaccine despite only being vaccinated about 3 years ago. A blood test taken about 3 months later showed sufficient pnuemonia antibodies yet I am still catching pnuemonia and each episode is worse that the one before.

I have had Atypical Pnuemonia, Community Aquired Pnuemonia as well as a pnuemonia caused by the bug Mycoplasm.

I am on constant Amoxicillian antibiotics with Eurythromycin as a back up for any break through infections, however I seem to be building a resistance to this regime and I am still catching the pnuemonia.

There doesn't appear to be any answer as to why I am catching pnuemonia so much and all my doctors are now sat in seats there scratching their heaeds, telling me what a medical mystery I am.

My question is, is there anyone out there who has had or is having a similar experience or know of someone who is? If so I am eager to talk to you to find out as much as I can. Please note that its only chest infections I am suffering with and nothing else other that Asthma and Type 1 Diabetes.

I feel like I am at last chance saloon and desperate to find out answers.

Thanks for reading and thanks for you help.


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  • Hi Jason, My name is Heather and i have a four year old son who has had pnuemonia 8 times now at first they thought it might be an immune system deficiancy but tests were fine then they questioned asthma so treated for that for around 4 weeks with no improvement so they then did a sweat test for cystic fibrosis but thankfully that was negative. my son has a constant cough which goes with it aswell and vomits quite a lot because of the strain on his stomach. at the moment he is on a steroid inhaler twice a day 2 lots of physiotherapy on his chest and lungs and 5 mg of co-amoxiclav 3 times a day for 6 weeks we then have to go and see the respiritory consultants at the john radcliffe hospital in oxford to have another x-ray to see if the physio has shifted any of the phlem pockets in his lungs. we are at a loss as to what is wrong with our beautiful boy and its so hard to see him this way... sorry for rabbiting on just thought id let you know there are others out there like yourself and i understand completely how you are feeling... hope you get some answers soon. take care best wishes heather
    Anonymous 42789 Replies Flag this Response
  • Hi Heather,Please accept my apologies for not responding sooner, I was on holiday at the time you sent your email.Thank you for getting in touch and telling me your story with your son. I sincerely hope that they get to the bottom of your son's problems as soon as possible. It can't be easy for you as parents to see him suffer like this and my thoughts are with you.I have had a break though with my condition. I was admitted to hospital again on the 2nd April 2009 struggling to breath. This time was different from my previous pneumonia's. However I did have a mild pneumonia in my upper quadrant of my right lung.After some X-rays it was spotted that my trachea had an abnormality. I was then referred back to ENT who looked down my trachea through a camera and also noted that it was severely inflamed and narrowed and misshaped. This then lead them to contact a respiratory specialist who ordered a special CT Scan. It was called an Expiratory CT Scan. Whereas normally they ask you to breath in and hold your breath for a chest CT. This time they asked me to exhale and hold my breath. They also increase the intensity and do it in 3D as well.Anyway this showed that I have a condition called Tracheobronchimalacia (TBM). Basically the cartilage supporting both the Trachea and Bronchi is no longer able to provide the support required for normal respiration and therefore severely narrows if not complete collapses during breathing.This is likely to have caused all my previous pneumonia infections as I am unable to clear the mucus and phlegm from my lungs.I was then sent to the North West Lung Centre so that they could see what they could do. unfortunately at the moment there isn't a lot they can do. Some doctors will try stenting but others won't due to the side effects and possible complications. In my case they have decided to leave me with a CPAP machine and hopefully in a few years time I will be able to have reconstructive surgery to put the damage right.While I was at the lung centre my chest doctor there wasn't too happy at leaving it there. He wasn't convinced that this was just TBM because people of my age don't just develop this condition for no reason. This condition is normally found in premature babies and its just a case of the Trachea wasn't developed enough at the time of birth. Therefore they will grow out of it normally within 36 months. Or its found in elderly people as just a side effect of old age for the want of a better phrase their cartilage has just worn out.He then noticed that my ears were regularly going hot and extremely red. I never realised this was a symptom and I had never thought anything of it!This lead him to do an ear biopsy where they found inflammation cells mainly Eosinophils in my cartilage from my ear. You shouldn't find these cells here and especially not when you have been on steroids for such a long time as I have been.So now my full diagnosis is Tracheobronchimalacia secondary to Relapsing Polychondritis (RP). It was the RP that has attacked the cartilage in my Trachea and made it soft and misshaped, which has caused all my breathing problems and chest infections.Even more apologies for the ever so long reply!Jason
    jboyuklad 1 Replies
    • August 26, 2009
    • 01:28 PM
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