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teaky-19 profile image
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its a long time since i have been on here i was given 6 months to live on 31/10 /2013 ihave copd and also pulmonary fibrosis.my consultant is surprised i am still speaking i am on 24 hrs oxygen 3litres iam still able to go out for a bar lunch on a saturday im totally out of breath cant go to toilet without oxygen.the only thing is my mouth i am on permanent nystatin for thrush have sore mouth anybody know anything better for thrush.

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teaky-19
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teaky-19 profile image
teaky-19

sorry forget to say i have also got pseudomonas infection which they wont be able to clear up as it is resistant to antibiotics.i am to go into hospital to learn how to take antibiotics into lungs by some kind of inhaler.anyone know about this thanks

in reply to teaky-19

Hi teaky-19 Nice to see ya again .. am pretty shocked to hear that the can't treat pseudomonas infection.

Ad few run in's myself with antibiotic resistance DON't think doc's take it as serious as it warrants ... Only thing I know delivers antibiotics is nebuliser not heard of inhaler one IT don't mean this not av just not heard of it

As to thrush sore throat yes I have that to all time ... Some times it clears up on its on but most time it's there.

Doctor give my some stuff but not got it from chemist yet ... Think our infection states don't help that much

Sorry can't offer out tangible but is nice to see ya ;)

weeneenee profile image
weeneenee in reply to teaky-19

Hi teaky,I also have pseudomonus from time to time and they give me a nebulising antibiotic called colomycin which you use twice a day it a bit of a nuisance but really works, I take it for six months and then take a break for three and then if it returns I go back on it again.

casper99 profile image
casper99

I can't answer your thrush question Teaky, but I just wanted to say it's good to hear from you again and I hope you are back for good. xx

katieoxo60 profile image
katieoxo60

Hi Teaky thank you for joining us again, sorry can't help on the thrush problem but I am sure someone else will come to your rescue. Well done for managing to get out still, my mum used to say "where there's a will there's a way"more to the point do you enjoy your trip out for a meal ? You are a true example of determination to adapt. Thank you for up dating us best wishes xx

newlands profile image
newlands

Sooooooo pleased to hear from you it's great you are able to go out for short periods

You take care

Dorothy xx

Bevvy profile image
Bevvy

Lovely to hear from you and so pleased you are doing well.

I have had bouts of bad oral thrush and never found nystatin that helpful. My GP recommended trying to rinse my mouth with very salty water! I have found it to be an excellent remedy and it really helps. I swirl the liquid around my mouth for a few seconds before spitting it out. I try not to have a drink for some time afterwards so salt continues to do good in the mouth.

I never use nystatin now!!

Hope this is as successful for you.

VoodooChile profile image
VoodooChile

Hi

I agree with Bevvy rinsing thoroughly with salty water is helpful to prevent oral thrush. My Pharmicist recommended Dakatarin cream which worked for me to get rid of an existing infection.

Regards

Andy

Worth a read teaky-19 ;)

cysticfibrosisnewstoday.com...

Defo to names to ask doc about

Offcut profile image
Offcut

Well done on the PMA and fighting on. The sites below might give you some ideas I hope?

nhs.uk/Conditions/Oral-thru...

vkool.com/home-remedies-for...

Be Well

FarmerD profile image
FarmerD

Hi Teaky,great to hear you,re beating the odds.My only suggestion for thrush would be to try some honey made local to where you were born.I,m Scottish and find Scottish Heather honey has many health benefits although I don,t suffer from thrush so far.Regards D.

sassy59 profile image
sassy59

I cannot answer any of your questions teaky but just wanted to say how nice it is to see you on here again. Continue to defy and confound and we will see you for a lot longer. I am sure others can help but I just could not ignore you. Take care. xxxx

peege profile image
peege

Wonderful that you're still with us, good for you and welcome back!

Four of us went to a talk at the RSM last summer and were told that the latest advancement was to be inhaled antibiotics and that it would be available soon.

It sounds as though this is it. The antiB was beginning with C, sorry I cannot think of the whole name.

Good luck Teaky. P x

peege profile image
peege in reply to peege

Forgot the thrush....... Get some probiotic capsules (don't bother with those drinks, you'd need gallons to get enough good bacteria into your system). Buy online, lots of reviews to read too.

Also get some plain live yogurt. Yeo Valley is a good one and comes in big pots. There's a 0% fat one if you prefer. Let it linger in your mouth when you eat it several times a day. Also avoid all sugar as this feeds the fungals.

P

Dragonmum profile image
Dragonmum

Salt water with a dash of bicarb has always worked for me - agree with all peege has said above. Expensive drinks don't work - capsules or tablets are relatively cheap and much more effective as is plain live yogurt.

peege profile image
peege in reply to Dragonmum

ooo, I'll try that Dragonmum, I often get a bit in my throat and actually attempt to gargle with a tablespoon of the live yogurt!

onamission profile image
onamission

Well done you have done so well you continue to enjoy your weekly lunch out, sorry I can't help you with the thrush but just wanted to say well done

hufferpuffer profile image
hufferpuffer

Hello Teaky, my Mum used to get terrible thrush in her mouth, it's blooming nasty and I've read it can be caused by the inhalers , so a spacer is advised and rinsing out your mouth every time you use your inhalers.

Hope you stay as well as possible, love and hugs huff xxx

teaky-19 profile image
teaky-19

thank you to everyone who replied, it is promixin if that is prescribed instead ofcolymicine you get supplied with the nebuliser you have to get admitted for one day to learn how to use it and how to clean the machine as your life relies on it.so again thanks

peege profile image
peege

Hiya, Flibberti, yes, think it might have been Ciprofloxacin.

How does one find out about these things, BLF?

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