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All not prehaps true

Balloo profile image
11 Replies

Ok I am not a medical doc psychiatrist . But lived & worked Africa. . With ngo S but there during aids Ebola . Worked out these countries. So you lean on job . Am in contact my doc friends . So even a bit I listened to bbc world service . Perhaps this actually not virus. As known . This what called sticky blood . Kidney stuff .apesrs. Bacterial ? I have copd & other stuff. Been kept quite well trial azithromycin . I asked this .its classed an antibiotic. Small dose messes stumuc so on nhs story. Here you need a probiotics or lots sourcrout National yog if do dairy lactose intolerant . Goat ok . I can not say anything true .but also know you don’t eat well here . I have the gov box nothing I can eat . My carers mum take to food bank. .rotten veg out date tins . Horrid .

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Balloo
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Damon1864 profile image
Damon1864Volunteer

Unfortunately all the boxes are about the same, I get these boxes and have been really greatful for them. And I certainly haven't had any rotten fruit or veg in my box. I say let's be grateful for small mercies and thank those who have given up their time and safety to deliver them. Have a good night and take care of yourself 😊 Bernadette xx xx 🌈

Oshgosh profile image
Oshgosh

I’ve been grateful for my government box.

It’s a bit repetitive,but it has kept us going and helped us stay safe. Fruit and veg have always been fresh.

It is definitely a virus, they’ve mapped the genome. The reason azithromycin has been considered is because it’s widely used in CF, not actually as an antibiotic, but as an anti-inflammatory for the lungs. They’re wondering if it would have the same properties with C19, but prt of the problem with azithromycin is that even after years of using it in this manner, we still don’t actually really understand how it works, how long it works for, and we know it doesn’t work for everyone.

Balloo profile image
Balloo in reply to

Thank u for that . Do you have more info .? Papers written . I am on a trial this .& have to say it has meant no lung infection . I had Tb child & again working in Africa . Also mallaria. Saved by the drug they not sure about ..

in reply toBalloo

If you just google ‘azithromycin as an anti-inflammatory’ there are lots of papers that come up.

I should put a caveat on my above answer and make clear that ‘Zith *is* used as a traditional antibiotic in cf where appropriate, but whilst described as prophylaxsis, the 3 times a week regimen is primarily utilised more for the anti-inflammatory effect. As with other respiratory conditions, it’s usually started when a patient isn’t keeping particularly well and experiencing a significant number of exacerbations, but it doesn’t necessarily benefit all patients. Researchers aren’t sure why that’s the case, or that remaining on it constantly for years is appropriate.

Balloo profile image
Balloo in reply to

When u say we are you a doc ?

Redrum46 profile image
Redrum46 in reply to

Iv used it for about 20 years made my mucus lighter in colour I stoped it my self about 5 years ago for a couple of months my chest went bad a lot of dark sticky mucus Doctor said never stop it again

in reply toRedrum46

For some it works brilliantly, but not everyone. I think one of the ‘issues’ is that we still don’t understand why it works or how to determine who it will work for and who it won’t, so it’s given out blanket. My daughter was on it for 5 years and I never noticed any benefit - her new team stopped it when we moved, and there’s been no change at all. One of the professors on the team said at the time that there’s an increasing view that the vast majority shouldn’t be on it endlessly for years just for the anti-inflammatory effect, particularly when you bear in mind it is actually an antibiotic, but obviously if it’s having a profound effect like with you, then there’s reason to assume it’s a necessary element of your treatment.

Redrum46 profile image
Redrum46

Had my bronctiactasis since hooping cough as a child I’m 74 hospital consultant started me on Azithromycin didn’t have a problem don’t no why thy gave it me but had the problem wen I tryd to stop it I do believe it’s a good drug wen u are older is your daughter young

in reply toRedrum46

She’s 12, but at the more severe end of the cf spectrum - her fev1 when well is mid 70s, and a CT last autumn showed diffuse small airway disease and bronchiectasis. She’s had chronic pseudomonas since she was 4 which has developed to the point where she has multiple, increasingly resistant strains and it’s showing up in sputum near enough every sample now regardless of regular IVs or antipseudomonal nebs. She just seems incapable of staying well without extensive intervention, but she’s been like that since birth, which is partly why they put her on the zith quite early in the hopes it would dampen the inflammation and stabilise things a bit. Unfortunately, it never did, but that does mean one less med to take now that we’ve stopped it - silver linings!

Redrum46 profile image
Redrum46 in reply to

Sad o so sorry to hear this as I wos a young age dude t have mutch school ing as my spelling says nothing compared to you child I will hope a pray as thire is surprisingly new research going on as in past none hope she goes to a specialist school as I did and is getting Looked after you are a good dad as mine was and that is so important I remember my dad looking after me keep in touch with this site it as helped me out I have pneumonia at present and not at all good but it helps to no people care xxx

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