new to bronchiectasis and its quirks

[daveymac55]

hello, recently diagnosed with bronchiectasis (last year) had various infections, grew some strange bugs in my lungs! had various courses of antibiotics and steroids, living in far nrth Scotland having to wait 12 weeks to see consultant again, but they emailed my doctor today to have me ECG'd then 250mg Azithromycin daily for the foreseeable future, is this normal? thanks for reading

[Hidden]

Sorry to read bout ya DX

Is normal if you have had lot infections.

[tbeth]

I have bronchiectasis and have had several infections.I think it is normal. Good luck with your appointment.

[Billiejean_2]

Yes, it's totally normal for Bronchiectasis. Azithro apparently reduces inflammation in the lungs and with many people it's so successful that they hardly ever have infections.

Most people take it three times a week but like you I take it every day. I grow lots of weird bugs too, maybe that's why we have to have it every day

[CCSP-27]

Hello there I don't know where the ecg comes in ? Does anyone have associated heart problems with bronchiectasis ? Maybe it was just a bye the bye test ?

I've asthma for 48 years and Bronchi for 3 or 4. Asthma now resistant to steroids and bronchi getting worse - Zithromax Mon Wed and Frid no longer working - where do I go from here ???

Anyone have similar pattern ? Bit worrying to think we're going to be dependant on antib's for the rest of our lives!!!

Sorry if I appear negative but I've little faith in the medical profession any longer .

Their hands are tied with financial issues so they treat symptoms but don't find causes !!!!!

[Hidden in reply to CCSP-27]

The did ecg with me to make sure i had no heart problems.

I had to come of them as i started having heart propblems .. i was one unlucky one's .

But as to heart problems everyone with lung dieases will have em at some point.

[Hidden in reply to CCSP-27]

Hi there . I have a similar pattern but unfortunately i don't have answers for you. I am going to ring tomorrow to see if there is anything else I can try. I am being sent for a heart scan. I just assumed it was usual. Will let you know if I get any answers. Take care.

[CCSP-27 in reply to Hidden]

The Antib resistance is a concern - what happens when they no longer work ????

I know everyone is of a different mind set and that's ok too but if it's of any help to any of you I am determined to discover where the autoimmunity element of Bronchiectasis comes in ?

It's exhausting being your own detective but I've so many other autoimmune problems I'm convinced my lungs are right in there with all the other bits that appear to be affected.

Wouldn't it be great if there was a one stop shop where we could be tested and treated there and then and cut out all this guess work !

Do you think maybe in the future ???

I'll keep posting .....if the 'Sherlock' in me finds out any more ......I'm more than happy to share any info 😊

[Hidden in reply to CCSP-27]

I have recently been diagnosed with a few autoimmune disorders is it all connected

[CCSP-27 in reply to Hidden]

Thank you Amanda

How in earth do I go about having this diagnosed - I'm entirely convinced it's the root of quite a lot of my problems !

My GP is very inert and not at all pro active whereas I am !!!!

He and she will only treat ay prima and not consider finding the causes 😡

Susan

[Hidden in reply to CCSP-27]

Hi Susan -mac it has taken them a few years. To getting around to referring me to see an immunologist. First they thought I was to do with medication I was taking for epilepsy. Then they chanced my inhalers still no difference at the moment I am seein both rhuemytolagist and respritary consultants. I also think there is a connection but it is hard to get them to listen to me. I will keep you informed. I hope you get some answers soon take care x

[CCSP-27 in reply to Hidden]

Hi Amamda

Thank you for reply

So you have epilepsy problems too - do think that's another connection ???

My Neuro is still undecided - I've only ever had 2 grand mals (with a few months after shocks) and I'm only ever likely to have the same type again .....although with epilepsy who knows !

I'm on 3 AEDs slowly tapering down to one for maintainance (it has taken over a year so far !)

I'm very fortunate to have Med Insurance so I bypass the GP and have a Respiratory Consult.

I'll now ask for the tests you suggest and see what happens

SM

[Hidden in reply to CCSP-27]

Yes I have had epileptic fits. They started when all my electrolites were low I only had 7 fits altogether and only at night when I was asleep and I bit my toung. The resp consultant thought it was the medication I was taking and wanted me to come off them. Went to see a neurologist who said no. And changed the medication I was on. I have not had a fit for many years. Take car x

[Watfordgirl in reply to CCSP-27]

Hello susan-mac,

You've got lots of questions and no available professional, from the sounds of it, to give you answers quickly. Write them all down to take with you when you're seen. And actually twelve weeks is quite quick - denser populated areas have long waiting lists.

There is a blood test for immunity. If it's low they can then check your ability to make antibodies, by immunising you and doing a blood test 4 weeks later. I'm not making them and get nose-to tail-infections, and am being referred back to an immunology consultant.

I've been told that this isn't an autoimmune problem, but that could be just me!

I do hope you find some answers soon and feel happier with your treatment. And I hope you feel better! Sue x

[CCSP-27 in reply to Watfordgirl]

Thank you Sue

I can't tell you how many lists I've made and how many consultations I've had ......sadly all with no conclusive results !

You're maybe mixing me up with someone else - I'm not "waiting 12 weeks" ....for appointments ! My problem is knowing where to go to get help !!!

In this area 12 weeks would be a complete miracle !!!

I'll check all my blood reports - I always ask for copies - and see what was done but I think the immunity one came back ok .....'within range' 😡

This within range thing is a nonsense !

Onwards ....and I'll report back if only that info might be of help to someone else

S

[daveymac55 in reply to CCSP-27]

yes it was my original post that mentioned a 12 week wait to see the consultant again, but it has developed into a fascinating discussion, probiotics were mentioned somewhere, I take Yakult, Actimel, and Acidopholus every day. much to my amazement my Bronchiectasis troubles were caused by a hiatus hernia, acid reflux at night being inhaled into my lungs

[CCSP-27 in reply to daveymac55]

Good Grief !

What next !

I'm impressed that was even discovered - what were the chances !!!

I'm glad you got diagnosed properly and it just goes to show how complex these causes are !

Thank you for sharing this Davey

SM

[Watfordgirl in reply to CCSP-27]

Sorry, I thought you were the daveymac55 who posted the questions. I'm rapidly backing off!!

The 'within range' simply means it doesn't require treatment.

Hope you find the help you're looking for,

Sue

[clematis5932]

I am also on the same drug started last April take one every day. I also had to have an ecg before I started the drug in fact before the prescription was given to me at the hospital, I am to stay on it for twelve months I have only had one infection since being on it.

[Hidden]

I have recently been told I have a small amount of bronch as I was getting infection after infection I hav not not been given the tablets you have mentioned I am being referred to an immunologist because of my low immune system can any one explain this

[Hidden in reply to Hidden]

I to have low immunty IGM antibodies.

Guess you might have ibs gut trouble.

I found almond milk with added vitamins as help me with infections immunty issues gut trouble

[Hidden in reply to Hidden]

Thank you.

[Hidden in reply to Hidden]

As helped me but just make sure you not got nut allergy.

Our guts is where our antibiides are made.

I tried allsort and that was best thing i have found that helps me a lot and absorbs quick given my own gut trobble antibody issues.

Befour i was taking that i was having to rotate my antibiitics every few weeks becouse of antbiotic resistance.

[Hidden in reply to Hidden]

I will try it thank you for your help

[CCSP-27]

Ah Jeffjaxsmith - interesting about the Almond milk ! I've switched to this (from Soya) I don't know if there's any difference for me .....yet ?

Interesting too that the antibodies in the gut ....I'm on the detective trail again .....if today brings me energy !!!!

Thank you so much everyone for all your info.

susan-mac

[Hidden in reply to CCSP-27]

Hi Susan-Mac took me lot research too .. Wondered why I felt great after I had contrast ct scan.

Anyway found out our guts is where nutrients are absorbed into or system SO if you have IBS gut inflammation is hard for body cells to get nutrients we need for our cells antibodies.

Like a said almond milk with added vitamins as helped restore my gut germs ... and I have not had to rota my antibiotics Which I was doing every few weeks.

Because it absorbs quick EFFECT is not lost in ... Inflammation also CAUSE almonds contain tad of iodine is good for throyide function to.

[CCSP-27 in reply to Hidden]

That you Jeff

I guess there's nothing else for it - you've got to find things out for yourself ......or on here 👍

I'd no idea about the inflammatory gut thing !

I don't have IBS or anything but I do have 3 gallstones nestling away in there ready to pounce !

Unbelievable the almond milk made the antib's rotation lesser and better !

I totally believe you .....but does your GP ?

Brick walls a lot of the way 🙄

Keep well

S

[nancye]

Susan-Mac, have a look at the National Jewish Health website. You might find useful new information. They are world experts on bronchiectasis and the infections that often go along with it, and the treatments available. I have been treated there for nearly four years. Had a 22 month course of 3 drugs for MAC infection and 5 months for fungal pneumonia. These infections are very hard to clear. For the bronchiectasis itself they really emphasize airway clearance - I use inhalers, nebulize, and use a vibrating vest to percuss the chest, and my spirometry results are now in the normal range, from a low of 64%. It gets discouraging, and all this treatment takes so much time, but it does seem to help. I hope you find a regimen that helps you.

Nancy