The new look!!

Hello BLF friends,

My Lam sister brought that back from the Cincinnati symposium for her car 🚘 . She sent me a pic!

It is quite daring in the Swiss mountains 🏔 !!

I’m coughing 🗣🗣 trying to last to next week’s big trip to Lyon hospital.

Pushed for the chest xray, had the chest xray, not nice. More or less same as the one of July 6th. I haven’t seen the report yet but it looks like another bilateral chest infection in the lower lobes. GP said at least you haven’t got pneumonia!

Still no antibiotics..but a bottle of cough syrup..I am stunned..

So yesterday I get a copy of an excellent report from the Lung Consultant I saw Monday to the LAM specialist saying I had been tested twice for Raoultella Ornithinolytica which was declared not pathogenic; then a call from the GP saying he is contacting the infectiologist again.

Well it must have set the cat among the pigeons..

So I am still waiting to see if anything gets solved..

If I didn’t have Mum with me, being treated here, I would have packed my case and gone.

Have a good day my friends.

Love 💕

Fran xx

[2greys]

It sounds like the doctors are sending themselves in circles. With no ABS I don't think that they can make up their minds whether it is viral or bacterial, but I would have thought they would play on the safe side and prescribe them. Keep warm, it is a frosty start over here and I have to do that long bus trip to an Oncology appointment in an hour.

[HungryHufflepuff in reply to 2greys]

Best wishes for your appointment 👍 Hoping everything goes well.

[Hidden in reply to 2greys]

You are right as always my dear 2greys. Sorry for the long bus trip, take a good book or good music to listen to.

Hope it is just a checkup..xx

[2greys in reply to Hidden]

Yes, just another follow up. Sat on the bus, browsing the Web.

[Hidden in reply to 2greys]

Ah that’s reassuring..

A healthy habit ^^

[HungryHufflepuff]

I hope something gets solved for you soon, 2greys is right when he says the doctors are sending themselves in circles, I’m confused just reading about it. At least you got your cough syrup, right, because that must be a big relief 🤨 Hopefully my tone of sarcasm came through there.

I really hope something gets figured out soon, a proper diagnosis with a valid treatment. A bit more than cough syrup 😠

How’s your mum doing now?

[Hidden in reply to HungryHufflepuff]

Yes the cough syrup is a mucolytic, I’m not supposed to take that with asthma but do I have asthma as well as LAM, nobody has never confirmed that either. So I didn’t take any.

Mum is in pain with the new orthopaedic shoe pressing on her operated toe..

I said take it off until they solve it.

Have a good day HHp xx

Fran

[HungryHufflepuff in reply to Hidden]

I’m really sorry to know things aren’t great for either of you. It gets wearing after a while. I do hope things start to improve for you both soon. You have a good day too, as much as you can. Bon courage 💐

[Hidden in reply to HungryHufflepuff]

Oh we’ll turn round the corner I am sure, it’s just those mountain turns are slower 😃

[HungryHufflepuff in reply to Hidden]

Well I hope you find some of that lovely Swiss cheese and chocolate in some of the twists and turns. 🍫🧀

[Hidden in reply to HungryHufflepuff]

True enough Mum had a nice portion of Swiss chocolate and cheese yesterday. I am keeping away from all that fun 😉

[HungryHufflepuff in reply to Hidden]

You need cheese and chocolate to make you feel better! And I just saw your reply to Skis, there’s probably as much science in the cheese and chocolate remedy as what you’re getting. It’s surprising because you seemed to have been getting good care until recently and I imagined Swiss health care being better than this. I am really sorry to hear you’re having such poor treatment. Hopefully your appointment on the 7th will be more beneficial 🤞

[Hidden in reply to HungryHufflepuff]

Yes I don’t know why they only want to treat me with Echinacea and Zinc all of a sudden.

The infectiologist knows it’s not a virus as we got the bacteriology. He thinks I’m weak and immunosuppressed and that antibiotics make it worse.

So that’s that. I’ve tried here. I just have to see what the big guy says on the 7th, maybe they are right, medical science evolves and I am old fashioned..

Who knows..

Bye for now!!

Fran

[sassy59]

The pictures great Fran but WHAT!!!!! No antibiotics! Crazy doctors, and I just hope that somebody with sense comes along soon.

It’s chilly here with a frost so you hang on in there and keep warm just as Pete and I plan to do.

Hope your mums doing well.

Love and hugs xx 😘💖😘💖

P.S. no I can’t say the long version of Lam. Xxxx

[Hidden in reply to sassy59]

Chilly here too. Glad Pete and you are doing well.

I am counting the days till the 7th 😃

Love 💕

Fran xx

[Hidden]

And our practice nurse can’t even say bronchiectasis!

Non pathogenic simply means that the bacteria cannot affect other bacteria and organisms. Most bacteria are non pathogenic.

This does not mean that it can’t affect you.

The bacteria you may have is a rare opportunistic organism, usually affecting immunosuppressed patients and aquired during invasive hospital based procedures. Very unusual and difficult to aquire but becoming more common.

They treat it with broad spectrum antibiotics and it does need treating!

Cough medicine doesn’t do anything except give the patient something to go away with. Honey and lemon will have just as great an effect on what is ailing you. None,

As for your GP saying that at least you don’t have pneumonia - mine let me walk around for six weeks with it in 2015 despite two xrays. That resulted in eight weeks IV because of neglect.

Please get to somebody who practices medicine not magic. I am really worried about you.xx

[Hidden in reply to Hidden]

Thank you for the info Littlepom 🌸

Don’t worry 🤗

Well I can last 5 days till the 7th I think. As I said I will drag myself there in whatever condition I am because here they are lost.

I have Mum to worry about I hope I don’t pass on anything??

Fran xx

[Hidden in reply to Hidden]

You can’t pass it on. This is a common misconception surrounding lung conditions. Please look after yourself. Trying to look after your Mum whilst debilitated by an untreated infection is not good news

[Hidden in reply to Hidden]

Good to know!! Thank you Littlepom 🤗

[sassy59 in reply to Hidden]

Very well put littlepom. Xxxxx

[Yatzy]

Morning, Fran 🌟

It sounds as though things are moving in the background at least, which might mean appropriate action soon.

At least you seem to have medics having to account to each other for their actions...,maybe the AB denial is being questioned in higher places. You’ll get there in the end.

We’ve been here before.....we know our own bodies best, and most of us don’t pop ABs unless we can feel ourselves going downhill.

Good luck, Fran, for yourself and your Mum minding. 😎👵🏻 Big love ❤️ Penny xx

(Thought this new phone might up my stock of emojis- no such luck 🧐)

[Hidden in reply to Yatzy]

Morning Penny 👋

I’ve been rushing around yesterday!

Respi physio at 8.30. Mum to the cardiologist at 12. GP at 2pm then going to the flat to check painting samples saw the floor tiles in the bathroom were all wrong, rushed back to the hospital to see the infectiologist who reiterated he wouldn’t give me antibiotics, antibiotics would weaken my immune system and would I like Zinc?

Kissed Mum good night and to bed!!

Hope your day went well xx

Fran 💕🌺

[Yatzy in reply to Hidden]

Hi Fran 👋 😀

Sounds like a very busy life to me but we have to keep on keeping on.....doesn’t always aid recovery though!

I’m counting down for you till 7th on Wednesday. Hope the journey to Lyons goes well and you get the expert opinion you’re waiting for, and effective treatment at last.

Take care, my friend, 💕love🌺 Penny xx

[skischool]

Time for you to kick arse my unhappy Happy friend. Hopefully on Nov 5 the main LAM man will take over and get you sorted. This has gone on to long!

Love ski's having a not so good day. 😊sorry confused bonfire night with 7th November. Easily done 😁

[HungryHufflepuff in reply to skischool]

What’s going on Skis? Getting over a major surgery is hard. Is there anything we can do to make it easier (probably not unless someone has magic potions for pain relief and energy) You’ve brought so many smiles to so many of my days so I’m sorry to see you having a bad time. Sending you all best wishes.

[Hidden in reply to skischool]

How nice of you to write to me from your bed 😊 And cheeky as ever! Keeping your spirits up I see 😉

Yesterday was the last straw, when they got their heads together 🙃, GP decided to make me breathe, wheeze and crackle then the infectiologist decided on a box 📦 of Redoxon C + zinc, 7 effervescent tablets a day!!

Talking of building up stamina 😃

The nurse came in giggling with embarrassment. I said don’t worry love and put it in the draw with its prescription.

Hope your medical care is better than mine my dear Skis🎿 and that you will soon be reunited with Scruffynounette xx

Fran and bags full of alternative meds!!

[Hidden]

Hi Fran, so sorry things are still dragging on for you 😡 roll on the 7th i hope you get it sorted then. Take care 🍁 🍂 x

[Hidden in reply to Hidden]

Thank you Majt, yes I hope so too x

Fran ☀️🤞💫

[Katinka46]

Dear Fran, what a mixed bag, neglect, ignorance, and some hidden rays of hope. Love and gentle hugs,

Kate xxxx 🌈🏔🦓💕

[Hidden in reply to Katinka46]

Dear Kate,

That’s the problem when you have a rare disease I think, doctors don’t know how to handle it, some scared to do the wrong thing and choosing to do nothing, others referring to others who refer..all in all you have to wait for your two yearly consultation with the big man..It’s been a long two years!

Love 💕

Fran xx

[Corin1950]

What a saga ! Hope you can last out til 7th. I very worried about both you and your mum having read littlepom's 2 replies.

Please take care.

I like the car sticker ! Been practising trying to say it.

Corin

[Hidden in reply to Corin1950]

Hello Corin,

Thank you for writing 😊

Pariboy SX nebuliser has become my best friend, I’ll last I think 😃

Mum is an example honestly she is getting them to do everything she needs!!

Thank goodness for the weekend and no more medical appointments is all I can say.

Haha..it’s a mouthful LAM for lambs I like 🌺

Love,

Fran xx

[Gino39]

Hi Fran it's been a while! I'm really useless at keeping these things going! Stamina is in short supply! I've been checking in a little more as its my turn to be laid low with indeterminate doctorconfusional chest problems! 🙄I'm afraid I'm not as good at describing all these things as you are!😊

I wonder how many of us are lying awake at night hoping the tiredness will overtake the wheezing and let us sleep, whilst the bedside table is covered in breathing detritus that might just help to sooth!? Though I've not replied for a while I see that your own journey does not get any easier. I still think that there is a book in all that you have been through. Perhaps we could call it "A breath of fresh air"? 🌞

Anyway, just a short ramble from another BLF friend wishing you all the best with your journey....

Gino X

[Hidden in reply to Gino39]

Hi my dear Gino,

Thank you for your kind words

Sorry to hear you are going through more chest problems😢. I think when doctor’s confusion sets in it is time to move on to specialist’s confusion 😃

Well I’m being cheeky, there are some good ones out there I’m sure. Searching must be part of the game 🎃😈

I remember how you helped me out when I came on the forum even if our stamina wasn’t grand either, you had all those tips and gave me hope💫.

Best medicine ever.

Just checked my bedside table, it made laugh 🤭 from the nebuliser and its goodies to all the homeopathic remedies I have accumulated, plus the bronchovaxom and Echinacea I am supposed to take first thing, the medicine pouch and the glycerin cough sweets 🍬 !!

Books 📚 I have relegated to the bottom drawer!

Start writing ✍️ Gino..

Love,

Fran xx

[joyce74]

Hope they soon get you sorted Fran 💐🍁xx

[Hidden in reply to joyce74]

Thank you Joyce 😊 wishing you well xx

[Ergendl]

Hope they mange to solve your riddle very soon and give you the right treatment to stop your problems in their tracks.

[Hidden in reply to Ergendl]

Thanks Ergendl 🌸🤞🤞🤞

[juney_99_antique]

Love the pic!