First post. Advice on a nebuliser please...

Hi all

First post but I get a mail a day and love reading your posts.

Nice to know I am not the only one who is having problems.....

Anyway. I have had Emphasyma for 4 years. Am moderate / severe.

Chest infections come throughout the year and I always end up using 2 lots of Clarythromycin.

Penicillin now does nothing and I am just about to be changed to a 1 a day one.

The infections mainly are to do with extreme sudden breathlessness and I always have backup pack of anti-biotics and Prednisolone and start taking them and the ring my doc to check to see if I am doing the right thing and it gets put on my notes.

Last Monday I woke with a headful of mucus and a horrible bronchitis cough. I have not had a hint of either since I gave up smoking 4 years ago. My disgusting hacking smokers cough disappeared within days and I haven't had any coughing or phlegm problems. It's the breathlessness that gets me and stops me leading a productive life.

The antibiotics have almost fixed the phlegm but I am still left with the breathlessness. Everytime I make a cuppa, everytime I go to the loo.Everytime I exert myself at all I collapse back onto my sofa gasping for my ventolin.(with a spacer as directed)

My doc came up yesterday and said more antibiotics and prednisolone and has organised a script so I can carry on on Friday as that's when I started as I was determined to try to ride the bronchial symptoms without going on my meds straightaway. Took Paracetamol,made honey and lemons drinks and felt awful all week and by Friday I couldn't breathe and my SATS went down to 80.

So I regretfully started my usual regime and I am on the 6th day now.

I should have started them straightaway really but as this was the first time I have ever had this cough and the phlegm I didn't think it was a chest infection.........

So. The reason for my post is to ask about a nebuliser. When I was in hospital 4 years ago we had 1 nebuliser between 2 wards and I used to patiently wait my turn and I would usually get it at 7.00 in the evening, The relief was immediate and very welcome. The breathlessness subsided. What was used in the machine I have no idea.

I asked my doc if I could have a nebulizer and she said sorry. They don't give them out anymore as folk get too reliant on them. I held my tongue but thought what a stupid reason to not give someone a nebuliser... They work, They do good. They may dispense with the need for Prednisolone which I HATE taking as eating and sleep disappear like magic. I was up 24 / 7 for 2 whole days last earlier this week. I should at least start losing weight.....

I offered to buy my own nebuliser. Be about £40 from E Bay. All I need is a script for whatever that you use with it. I rang my chemist yesterday and she reeled off Ventolin, even Saline solutionbut it has to be prescribed.

Another phone call booked for tomorrow. I want to know if I can have a script if I buy ny own nebuliser. I am not hopeful.

What a long post......

[Hidden]

Forgot to mention I have a chest infection all over Christmas,another in February,and my latest started Monday 13th April.

I worry what so many antibiotics are doing to my immune system.

I am due a spirometry which I really need as I feel my lung health is getting worse.

As you have to have 6 clear weeks of infections to have a spirometry I just can't manage it.

Before all this I had 2 a year. I have had 3 in the last 5 months.

I am feeling ill and a little worried.

Any thoughts would be gratefully received.

Pam.

[Hidden in reply to Hidden]

Pam i could go into a lot of details about my experience with my doc but my advice to you is get referred to a consultant cos i spent nearly a year on antibiotics when i didnt even need them and ended up in hospital x

[Hidden in reply to Hidden]

Mandy. I am going to have to message you about what you have gone through. If you fancy sharing I would be most interested. Pam.

[kimmy59]

Morning and welcome.

I have my own nebuliser but the salbutamol does have to be prescribed, my consultant agreed to me having one and wrote to my GP to prescribe. But I think it depends on who you see. Do you have a consultant.

Kim xx

[whit]

i got a nebuliser last year ,my doc didn`t supply it but told me to go to my local chemist who gave me one on permanent loan, the doc prescribes the ventolin nebules when required. hope you get somewhere with your doc

[sassy59]

I agree with above, you do need to get referred to a consultant and get a nebuliser loaned to you or buy your own. My hubby Pete has one from the Brompton and also has his own. We take one away with us. Your doctor needs to listen to you so you can get relief from your breathlessness. I do so wish you well and keep pushing to make yourself hear.

Good luck. xxxx

[Hidden]

Thanks for all your replies.

I have just had my booked chat by phone with a BLF nurse and she said it sounds like the antibiotics are maybe not working but the first thing to do is get a sputum test done to find out exactly what is going on and whether the correct antibiotics are being prescribed.

I have also been advised to see a consultant. I had no idea about any of this and I am feeling much happier to know that something may well be done about my recurring chest infections.

Plus the consultant may be able to organise meds for my nebuliser.

I am feeling positive for once.

Thank you all SO much.

Aren't the BLF nurses just great ??

[Hidden in reply to Hidden]

The instructions given to me by my consultant is the day you start your emergency antib send in a sputum sample

its annoying because your doc should have already done a sensitivity test on you to see which antibiotics work best....and in my case he was giving me them when i didnt need them so definitely push to see a consultant unfortunately not all docs know what the heck they are doing if i had seen one sooner i wouldnt have got so ill

[Bevvy]

Luckily I have a sensible GP who recommended to me that I get a nebuliser and he would prescribe meds.

He suggested this after I had a horrible a&e experience as a way of ME being more in control of situation.

[Hidden in reply to Bevvy]

When I was first diagnosed when it came to light that a lot of family members had died from Emphasyma over the years. My Dad,his brother.my sister June died at 52 in 2003 and my partner Mick also died in 2003 aged 49.

All had Emphasyma, none gave up smoking. June had Anti Alpha 1 triptolin defiency, (something like that....)

I was tested and it came back positive so I spent a few days finding out about it and rang as instructed a few days later to discuss my results and find out which type I had.

"I am wanting to discuss my recent diagnososis of Anti Alpha 1 please".

A few minutes passed and the doc said "Your test results were normal".

*Speechless*.........

I said "How can someone not get the results right ??"

"Very sorry......."

"SACK THE F*&K*$G LUNG NURSE. SHE SHOULDN'T BE GIVING OUT WRONG RESULTS....."

I left that practice and never went back. If I had seen the practice manager I would have got an apology,... But would still have the incompetent lung nurse so I registered at my new practice. The only complaint being so far is I have constantly been prescribed antibiotics for chest infections that won't shift.

But as from today,with your answers I will sort all this out and get my sputum test done and get some real help. And hopefully a nebuliser script.

I find it quite strange that I haven't been flagged over this as I have been having big problems since Christmas and have taken a lot of antibiotics.

I have felt worse this past 11 days than at anytime in the last 4 years.

Thanks for all your very interesting replies.

[moodygirl]

Hi I've had very good results nebulising with garlic liquid. I bought a small nebuliser off the Internet (about £40), and I buy the garlic liquid from the makers of AllicinMax. They make the garlic capsules which I also take daily.

When you take antibiotics they kill off the good bacteria as well as the bad, so you need to take a good probiotic. I would recommend Raw Reserve - not cheap- but it contains 25 billion probiotics.

Hope this helps

[Hidden in reply to moodygirl]

Wow. That's interesting.....

The main reason I am unhappy at the moment is the antibiotics aren't working aswell anymore. I hate what I am doing to my immune system. I feel like I have to do as I am told and take what I am given antib wise.

I shall now start researching probiotics and antiobiotics and try to do this naturally.

Thanks.

[moodygirl]

Please don't stop taking antibiotics while you still have an infection, but they do weaken your immune system so leaving you vulnerable to more infections. You need to build up your immune system.

I also take oregano oil (an antimicrobial), vitamin C, omega 3 for inflammation, and I've cut out sugar completely. That was hard and I lost lots of weight but it's now stabilised.

I think all of these things have helped but I'd say the garlic has helped the most.

Good luck

[doublecee]

Hi, I can empathize with your problems. I recently had an exacerbation and after leaving hospital I bought a nebuliser. Got an appointment with my GP and he prescribed Ventolin Nebules.

If you have problems getting the Nebules tell your GP you want to see a Consultant.

Hopefully that will sort your problem.

However you may need to buy your own Nebuliser.

I bought a portable one from Amazon for coppers over £21. 00.

Bets of luck.

[Hidden in reply to doublecee]

I am on the case right now. I can't get a nebuliser but am prepared to buy one. I have asked for a consultant but for some reason my docs immediately ordered a sputum sample so at least that is being done.

[clematis5932]

Whilst in hospital in December I was put onto a nebuliser 4 times a day. When I came home into the care of the home respiratory nurses I was loaned a machine and continued with that for another 6 weeks, I was gradually weaned off it and the machine returned, it can be requested again from the nurses should I need it. It was explained to me by my consultant that she would prefer me to use the nebuliser only when the usual inhaled Ventolin is not working. She explained that the nebulised dose is 30 times higher than the inhaled dose and they do not want me to rely on that dose daily.

[conanoz1]

I was looking for an article on nebulized garlic for lung and found your 3 year old post. Im not sure if you will ever get this, but worth a try. Your story sounds like mine. After suffering for years and multiple rounds of steroids and antibiotics, I found I had hidden mold in my home. It was making me and my family sick but in different ways.

The lung issues which you describe can be caused by many different environmental toxins, but Mold is very undiagnosed and is in many homes, schools and work places. Long term exposure has effected my health outside the lung also. I have been working with an environmental physician to use cholestryamine ( name in the the USA) to clear the mold from my body and antiinfalmitory agents ( herbals) to reduce the autoimmune the exposure triggered as well as other issues.

I have been off oral steroids and antibiorics for over a year, but still take inhaled ones. Hoep this helps..