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Another surprising visit

48 Replies

Hi everyone,

Went to the respiratory specialist in Lausanne. Had my pfts done he said I lost a little of my volume capacity, thought it was because of my cough.

He heard wheezing and crackling. I thought that’s it, someone is going to believe, give me antibiotics, make me feel better, well no.

I had a prescription of Echinacea to boost my immunity and bronchovaxom I get every year which is immunotherapy for respiratory problems.

And another appointment for Dec 14th in case I don’t overcome it by myself.

I am so looking forward to go to see the LAM specialist on Nov 7th. I hope he won’t me let down.

Have a good day xx

Fran

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48 Replies
sassy59 profile image
sassy59

Morning Fran, why isn’t your doctor doing more? I know antibiotics are often overused but not in your case that’s for sure.

I do hope things go well on the 7th November. 🤩

Thinking of you. Enjoy your day. Xx 😘

in reply to sassy59

Morning Carole

I don’t know 🤷🏻‍♀️ honestly I give up! Chloe my physio said they don’t know LAM really they don’t want to take responsibility! I thought great..

Yes I hope it’s ok on the 7th. I will drag myself there, temperature or not, pleurisy or not 😃..

Love,

Fran xx

sassy59 profile image
sassy59 in reply to

Take care....xxx 🤞🏼😃😘💖😘

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..

Anyway...thank you 🍏🍎

in reply to

Sure is. Good luck ❤

Hacienda profile image
Hacienda in reply to

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

in reply to Hacienda

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.

I kicked up a fuss here we’ll see what happens.

Love 💕

Fran xx

Hacienda profile image
Hacienda in reply to

Good Luck Fran. xxxx

in reply to Hacienda

Muchas Gracias Carolina 😘

HungryHufflepuff profile image
HungryHufflepuff

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. 🤞

in reply to HungryHufflepuff

You are thinking of my GP, no he referred me to the respiratory unit in Lausanne. He wants them to get at the bottom of it all.

I have been sick since Sept 7th, I can wait a little longer 😃

Yes keeping my fingers crossed too, thank you 😊

HungryHufflepuff profile image
HungryHufflepuff

I meant to say I love the snowy picture. It feels like winter has suddenly arrived everywhere. ⛄️☃️❄️

in reply to HungryHufflepuff

Nice to wake up to fresh snow ❄️

Yatzy profile image
Yatzy

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 📸 📽 📲 👏

Love 👀 xx Penny

in reply to Yatzy

Hello my dear Penny,

No I’m getting quite subdued 🤣

Truly! I am lost for words!

Mum had quite a shock when she woke up 😃 but I said you can enjoy the view from inside where it is nice and warm.

It melted through out the day but I could still see it on the peaks.

Looking forward to your pictures.

Love,

Fran xx

Yatzy profile image
Yatzy in reply to

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! 🙃

in reply to Yatzy

Just saw your comment Penny. Thank you for your kind advice my dear friend 🌹xx

Fran

Carnival567 profile image
Carnival567

I hope you get more sense on November 7th. Abandoning abs altogether does not seem sensible. Good luck xx

in reply to Carnival567

Thank you it’s weird, they make me feel guilty to make a fuss..xx

Damon1864 profile image
Damon1864Volunteer

Hi Fran I love the photo, and pleased you are doing well. Take care and keep warm. How's your mam doing? well I hope..

😊 Love Bernadette xx

in reply to Damon1864

Hello Bernadette

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.

She is eating well. I find her transformed!

Take care too xx

Corin1950 profile image
Corin1950

Hi Fran

Sorry to hear of your disappointment,

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.

Take good care of yourself

Corin

in reply to Corin1950

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!!

in reply to Corin1950

Hello Corin ❄️

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

in reply to

Thank you Majt 🤗

skischool profile image
skischool

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.

Love Ski's and Scruff's xx

in reply to skischool

Hi Skis

No stash my dear friend.

I need a special abs for the super bird! 🐦 which lives in an aquatic environment??

Could be the shower head?? See 2greys.

Not going anywhere today xx

Fran

Kitten-kat23 profile image
Kitten-kat23

Thinking of you. I hope you get some relief soon.

in reply to Kitten-kat23

Thanks 🐱xx

Shancock profile image
Shancock

Oh dear, well next appt insist!

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

in reply to Shancock

I’ll try Shancock! Keep warm too xx

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.

Shirleyj profile image
Shirleyj

I can't believe they're leaving you without antibiotics, hope your appointment on the 7th goes better.

Love the picture x take care x x

in reply to Shirleyj

Nor can I Shirley..I had the xray and I can see the pictures are the same as back in early July when I had the last xray..

So even then they didn’t give me the relevant antibiotics. I am sending everything to the LAM consultant.

Spent a long time lifting Mum’s spirits today as she got her orthopaedic shoe and her first physio!

To bed!! 💤💤

Nighty night 😊

Fran xx

Dedalus profile image
Dedalus

Hope your LAM specialist will help on 7th, but do go back to GP if your condition worsens beforehand xx

in reply to Dedalus

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.

Love

Fran xx

Dedalus profile image
Dedalus

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

in reply to Dedalus

No I don’t have those, they have to be specific. I compared with the last xray done on 6th July. Not much progress.

in reply to Dedalus

Thank you for caring 🌸

Hi happy london i have question you can ask them that said probiotics are dangerious if immuno comp.

Did you no a populer cancer drig that stops cancer spreading IS a germ pill

Cant rember name of bacteria but is first thing perscribe cancer patients

in reply to

Yes you are right that ‘s immunotherapy I expect.

in reply to

Must be over counter one as can pic it up in any good chemist

in reply to

Found one without lactose. Thanks Jeff

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