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.