Chronic infections Haemophilus

[jpd]

Hi!
Ten years ago I was diagnosed with CVID,bronchiectasis and chronic sinusitis. I am a 34 year old mother of two boys.My main problems at present are :daily green discharge in my eyes and nose,headaches, green sputum from my lungs,progressing breathlessness and EXTREME fatigue! Nearly every month my sputum sample comes positive for Haemophilus influanzae .Does anybody of you struggle with chronic colonization by Haemophilus as well? I can't get rid of this bug despite being on Antibiotic prophylaxy and frequent courses of other Abx. I've tried sinusrinse,herbs, physiotherapy,I exercise regularly on my better days but what I see is gradual deterioration year after year.I would be grateful for any answers.Thank you for reading.
DPJ

[slf]

Hi
I am sorry you do seem to be having a bad time,do i understand right that you are on prophylax antibiotic does that mean you are not receiving IG? This seems very surprising in view of your diagnosis,have the doctors spoken to you about this,and also do you see an immunologist. I would have expected a bit more action,possibly IV antibiotics would not seem out of the question. Their may well be good reasons for all this but I would be fascinated to know.
Please take care
Steve

[gilliem]

Welcome to the forum DPJ. You must've been diagnosed at just about the same time as I was, but I was considerably older than you! I tick all the same boxes as you with CVID, bronchiectasis and chronic sinusitis. I was put straight on to Ig infusions and have continued ever since, but still need prophylactic antibiotics on a six-weekly rotating basis. If you really aren't having infusions, I think you should find out why not straight away. Having a young family is exhausting on its own without a PID as well!
Best wishes,
Gillie.

[jpd]

Hi all!
I have been on immunoglobulin therapy since I was diagnosed.At the moment I am on Subcuvia weekly.I was on iv antibiotics as well but still my infections are not well controlled.It seems like I have chest or sinus infection once a month or once every two months.Maybe the reason for this is that I have been receiving proper doses of immunoglobulins only for last four years.Previously my treatment was not exactly according to standarts due to financial issues in my country.My airways seem to be very devastated by repeated infections.Thank you all for your replies!

[slf]

Hi again
After 4 years of IG treatment I think I would have hoped for better health by now,I wonder if perhaps your work could be laying you open to infection,since I was forced to stop working my health has improved greatly.
Maybe you could examine these things where you can have influence without relying on doctors,thought hat does sound a little silly,in view of the exercise and all the physio etc.
I hope your doctors are'nt prepared to sit back while you clearly suffer,really not fair when you're bringing up a young family and need good health.
My thoughts are really with you there
Steve

[crocker]

Hi dpl,
My son tests haemophilia all the time he has green discharge from his eyes and nose.He has had all sorts done been tried on all sorts of antibiotics and nothing worked.The only thing did was having a I've antibiotic drip for 7days .The we're strong ones can't remember the name and it cleared for about 4 months but they won't do that all the time

[liz2mac]

Hi dpl,
I too have had problems with this nasty bug in the past. Sometimes what happens with us is that we contract another bug, called pseudomonas, which has to be looked for specifically. What this does is to leave us open to getting repetive bouts of other infections that are difficult to clear. I suggest that you ask for your sputum to be checked for this. If you have it you will need a high does and long course of specific antibiotics. You will probably also need I.V. antibiotics. If you don't havr this, then you may need to have a two week course of iv antibiotics that are specific for haemophilus, followed by oral antibiotics for a while as well. You may also need to nebulise antibiotics, which I found to be a really effective treatment. Good luck, its rotten having this but your Drs SHOULD be able to knock it on its head. Let us know how you get on?
Liz