What is their problem with antibiotics? You have a proved bacteria and a condition which means that untreated infection can lead to further lung damage. ( hence the reduced lung volume capacity ?) I hope your LAM specialist does something sensible. Otherwise I suggest that you get yourself to Britain to see someone who knows what they are taliking about. With a condition like yours echinacea is nothing more than snake oil. Thinking about you.
• in reply to
Exactly Littlepom!! Are there new instructions out there? Are they being lectured? Yes if I don’t get answers on the 7th I’ll make the journey to the LAM Unit in Nottingham. It’s the only one in the country..It will be quite a journey as I can’t fly anymore. I may find out about appointments.
But you know what the problem is afterwards it’s the follow-up..
Hola Fran, Is this Lam Hospital near me, we have two Great Hospitals, "Nottingham City Teaching Hospital " & QMC. Always in the News, for good Reasons. Hope your Nov.7th Appointment can sort it out for you with AB's, I'm on Preds at the Moment, Feel Good & Bad, each day Different. Besitos Carino. xxxx
Yes..Queen’s Medical Centre.. but Lyons in France is the same..they are all good just so busy, you can’t pop in as you know so it’s wait and see until the 7th.
Well that’s disappointing and puzzling 😕 Was that your usually very good doctor? Thankfully the 7th is only a week away (though sometimes a week can feel like a long time) I hope that appointment goes better for you. 🤞
Oh dear Fran 🤒. It sounds as though they’re taking the wait and see over using the ABs a bit far to me. Did you tell respiratory chap how worried you feel with none?? I can’t imagine you letting him have the last word!! Fingers firmly crossed for 7 Nov 🤞🤞🤞 Hope you stay as well as he thinks you will.
Gorgeous snowy photo though, thankful you travelled before it arrived ❄️ My whizz bang new phone arrives today.....🎊 I’ll be able to take photos again 📸 📽 📲 👏
Subdued!!! We don’t want any of that nonsense, Fran 😂🤣😂
Seriously though, you’re still out of your own home and all its comforts......sorry to remind you.....and you’ve had eye ops and illness to contend with, as well as big changes to organise for your Mum. It must be hard to put your very best foot forward just now.
However, remind yourself, thinking of all your life events over the past year, and how well you’ve weathered the storm, proves your great mental strength.
Try not to worry about no ABs, and I will too. You’ll have a third opinion on 7 Nov, but if things deteriorate meanwhile, get back to that GP, maybe still suntanned from his hols, and DEMAND treatment!! That’s my advice!!
Meanwhile, have a hug 🤗💕🤗!
Big love (as my trendy niece always says)
Penny x🌸x
Ps This is from new phone 📱 but I’m a bit frightened of it yet....it keeps throwing up bossy messages that I don’t always understand! 🙃
Mum is doing better thank you. They are changing her bandage every two days and making her walk. She is going to have B12 injections once a week from tomorrow. She has to have vitamin C she was also low on.
Just been looking up Brinchovaxom because I've never heard of it. Is the doctor giving you this as an alternative to antibiotics? It sounds too good to be true as it covers such a wide range of viral and bacterial infections etc etc.
Hope it's effective in your case til you can see the LAM specialist.
Your photo reminded me of the train journey I've made a few times from Geneva to Zurich that passes through Lausanne. It always looks so beautiful in summer and in winter.
I looked at bronchovaxom too. It seems to be anecdotally effective in protecting against bacterial airways infections in copd by raising the immune response. There is only one study into it’s usefulness in bronchiectasis ( which I have) and that is in China using 250 patients. No results as yet. Immunotherapy is very interesting. Sadly my immune system is going like a train all the time looking for the bugs in my lungs which has led to other problems, alopecia, pemphigord etc. So I still wait to see if anything will eventually replace antibiotics.
• in reply to
Haha..you made me laugh with your study!! 😃
Protection is one thing but my chest infection is well settled and makes me short of breath so I find the whole thing ridiculous.
My little star 💫 must be protecting me as well as 2greys study on quadrupling your inhalers!!
It is all prevention. The idea is to boost my immune system so it can fight back. I get Bronchovaxom every year, it is for the first 10 days of the month for 3 months. Last time the French LAM specialist made a joke about it, telling me it was good placebo. Anyway I take everything they give me. Started the EchinaceaMed forte from A.Vogel yesterday one tablet twice a day for 3 months.
Who knows..My immune system has never fought back..well for years I think..nowadays they seem to think we can fight back acute bronchitis..well in my case it usually gets worse. Not that I am wishing it of course. I have the 7 homeopathic medicines, now those 2, the physio, the essential oils..I don’t pay for anything at least!
Yes lovely sceneries..
Love,
Fran xx
Love the photo Fran wishing you better luck on Nov 7th. Hope your Mum is ok take care. 🌹 x
7 days may seem like an eternity my Happy friend Fran but i am sure your LAM specialist will set you on the road to recovery.in the meantime careful self administration of secretly stashed a.b's? may help whist your immune system is in danger of being compromised.
good luck and wrap up warm as that picture indicates.
It looks jolly cold from that picture. Where we are it's been about 7degrees and cloudy and I'm in winter coat, scarf, hat and gloves already! When it hits freezing I'll have thermals too
Hi happy London I thought SME LAM .... Was Virltuly same as lupus
Was reading Intresting artical about guts immunity and upper airway infections given lam sme n lupus.
• in reply to
Thanks Jeff yes good flora is important for healthy lungs. I have neither 😃
Actually would you believe I wanted to renew my probiotics and because I am immunosuppressed with steroids, the pharmacist refused! She said it was live bacteria and dangerous. There had been a warning about probiotics and steroids!
• in reply to
I use to take live germ pills when i was immune comp ... you can tell when got bit excited as your ass explodes with over colanisation.
I too had read about risk of live bacteria but this good bacteria and this bad.
This a bacteria lives in our mouth that helps prevent lung disease SO how do we know when we brush our teeth we are sweeping it away.
This lots talked about but not much in way of follow up research.
Thank you for your advice Dedalus. I did today actually I insisted on an xray. I think I did well. It’s a definite lung infection I will take it with me on the 7th.
Sounds as though they didn't give you anything for the lung infection. Hope you have emergency ABs you can start if things get worse before your appointment on 7th. Good luck xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Getting really down and worried terrible breathlessness, help!
Another newbie to the site!
pulmonologist visit
update on hospital visit
