Bronchiecstases, hib

Hello friends ,I am so fed up with the Haemophillus bacteria invading my bronchiectasis lungs ,and making me feel I'll, numerous pk of doxycycline . I am trying to find a consultant specialist that specialises in theses complaints ,carnt seem to find one in my part of country ,has anyone any ideas how I find one

[cofdrop-UK]

I wonder who arranged your ct scan from which you were diagnosed bronchiectasis and why you were’nt followed up. That said to answer your question you need to check out online the respiratory services at your local hospitals. Some are better than others at listing their consultants and, more importntly what there special interest is. You would be looking for someone with a special interest in cf/bronchiectasis. If you let us know of a large city you have access to there may be someone who can point you in the right direction.

Good luck

Cx

[Hidden in reply to cofdrop-UK]

Hiya cofdrop you are so kind in answering my questions ,I was diagnosed about 3 years ago through c.t scan ,I have been followed up in a fashion meaning I see my consultant about every 10 months sometimes longer as my hospital always seems to have a back log of patients, I saw my consultant late November, she put me on Azithromycin 250 three times per week this was after I had had five lots of doxycycline over a period of 2 months .The Azithromycin seemed to be working in till now when HI has hit me agian it has made me feel I'll. I live in n Wales my nearest big cities are Liverpool and Manchester ,Chester itself is nearer still ,I will check out the repertory services at my local hospital ,thank you cofdrop

[cofdrop-UK in reply to Hidden]

Five courses of Doxy within a period of 2 months seems very odd. Wondering if the courses were long enough and/or the doses not high enough.

Azithromycin 3 times a week is a good move. I am intolerant to it but for many people it helps to keep down infections - it doesn’t however guarantee you will not get an exacerbation. It has an effect on gram positive bacteria, which HI is but is very useful as it helps to calm down inflammation.

Unfortunately many clinics have a backlog - I know ours do.

The only downside to seeing someone at a hospital further away from your local one is that if you have an unplanned admission it would be to the local hospital. It’s a balance and may be worth it if you feel your bronchiectasis will be better managed and keep you on more of an even keel.

Good luck

Cx

[Hidden in reply to cofdrop-UK]

Just come across something called the willow study ,they were asking for volunteers to take new meds as trials for bronchiecstases not sure if it is only in USA, that sounds good

[cofdrop-UK in reply to Hidden]

It appears to be a phase 2 trial. Is it this one?

willowstudyportal.com/en-GB...

bronchiectasisnewstoday.com...

cx

[Hidden in reply to cofdrop-UK]

Yes this is the one cofdrop, I'm wondering when this trial started and how far they are with it

[cofdrop-UK in reply to Hidden]

clinicaltrials.gov/ct2/show...

If you are seen in within a bronchiectasis service, there should be a trials coordinator, as there is a register for NCFBE - EMBARC. Your consultant can put your name forward, with your permission, if you meet the criteria for trials if that’s what you want.

Cx

[Hidden in reply to cofdrop-UK]

Cofdrop you are Brill ,umm I don't think I would go as far as entering trials just needed to know I just needed to no are new meds being found for us bronchs I think if your feeling I'll with it as I do now you start looking for answers ,just got up now 5 30 needed to cool down from night sweats and smelly coughs ,I'm going to try and get appointment with gp this morning as I'm on my ninth at of doxycycline and don't feel any better ,and jet my sputum test said doxycycline think I've taken to many of them in the past ,if that is possible ,that's another thing it is confusing when your sputum test comes back saying doxycycline will work on the HI and it doesnt thanks once again cofdrop

[cofdrop-UK in reply to Hidden]

I’m not brill sweetheart, but thanks, just someone who has muddled through with BE for years. Thank goodness now for the internet - it allowed me the opportunity to do my bit with ERS for a while and also allows newbies to be pointed in the right direction and to know what they should expect from their resp team.

I have found cultures can be sensitive in the lab but don’t always seems to be effective in the lungs. It is evidence guide to the GP.

I hope you have a good consultation and get medication which makes you feel better soon.

Love cx