Search results

Hi, I have been treated successfully for Aspegillus with IV caspofungin and oral Posaconazole. These are very expensive unfortunately but I'm in the UK at a specialist centre, so the NHS pays. Not sure how it works with your insurance system. Intraconazole was not as effective for me and Vori...

Thanks so much for your support. Have very hoarse voice from amikacin neb now and tight but it's only day 5....

Will try my salbutamol inhaler today. Thanks!

Thank you so much Michael. I feel so much better day all since stopping Domperidone (anti sickness) anxiety gone., crazy restlessness gone, weird muscle twitching gone and I slept! I understand it works on your Dopamine levels so perhaps I was having some kind of withdrawal. What's good is it...

Its so good to hear from others, sadly I think we will hear from more and more as they get better at finding this bug, as it loves to hide down there. So I finished my 2 week IV course (Tygecycline, Meropenum and Amikacin plus oral Clarithromycin). Tygecycline is tough but The Brompton in London...

Hi, I'm hoping there may be some words of wisdom for anyone on the long term antibiotics for MAB. I have just finished the 2 week IV's of Tigercycline, Amikacin, meropenum and oral Clarithromycin. I tolerated them fine thanks to the antisicknesses Aprepitant, Ondansetron and Domperidone. During...

To add it's still early days as not many of us to study but being at the most specialist centre possible is a must.

Hi I'm in the UK and have just been diagnosed with mycobacterium abscessus. The protocol here is to hit it hard and fast. So iv tigecycline (immediately given with an amazing antisickness called emend to stop the nausea and vomiting as so important to tolerate it) iv amikacin iv meropenum oral...

Thank you will give that a try.

Yes there are no posts since July 2013 and no way of private messaging.

i507del/Del508

Thanks so much susiesmom and glenny. Good news looks like I'm now eligible for another study that may also involve open label. Fingers crossed apparently i507del v similar to f508 mind you a miss can be a mile in genetics! Hoping we all get a chance soon x

I also was misdiagnosed as ddf508 I have just found out I am actually i507del df508. So am actually heterozygous. These results came back to me the week before I was due to start the vertex combo trial, which I have been following for years. Utterly devastated. Any more info on this gene would...

i507del DF508

DF508 /i507del DF508/i507del

DF508/i507del i507del FF508 heterozygous

he he just saw your reply! Yes I do have a dog (mini wirehaired dax) and I did hug him, really helped! So an update.....after 6 months of V fend my IgG was still over 200 and I had to stop it as got horrific skin reaction to the sun. (Idon't have ABPA so IgE normal), so it didn't work! I'm...

I feel so lucky with our healthcare in the UK. I live in London an am under the Brompton. I can't believe in some countries you have to pay for medication or are denied access to certain drugs. Although we have issues with waiting times, if you have a serious condition like CF this is not the...

Hi I have Aspergillus and it has never showed up in my sputum, only my blood which show a high IgG (this shows it is present, high IgE shows you are allergic to its presence, called ABPA). I am on Voriconazole to try and eradicate it...not seen a huge difference yet but apparently it can take...

Hi I have Aspergillus and it has never showed up in my sputum, only my blood which show a high IgG (this shows it is present, high IgE shows you are allergic to its presence, called ABPA). I am on Voriconazole to try and eradicate it...not seen a huge difference yet but apparently it can take...