Seeking Specialist advice for Bronchiectasis

[gardeninglady]

I manage my Bronchiectasis mostly by various methods to keep my immune system boosted. As a result I have not had any diagnosed chest infections in the last year. I have heard about and would like to try nebulising with glutathione. Does anyone know of any Specialist doctors who could advise me about the use of this procedure please?

[Fionafish]

Hi gardeninglady, sorry I can't help you with your question but I was wondering what you do to remain infection free. I have bronchiectasis and, following three chest infections this summer that would not clear up, have just been put on clarythromycin for the next four months. I gave up work earlier this year, exercise and do my best to stay fit but seemingly not enough. Thanks

[Hidden in reply to Fionafish]

Do you have a bronch specialist? Not a general respiratory consultant, they aren’t trained in bronch, neither are GPs. It sounds as though you have not been on the right antibiotic for long enough at a high enough dose. It might be better for you to have an inhaled antibiotic as a prophylactic on a permanent basis. Only the specialist can decide. I hope that the clarithromycin does the trick and - remember to empty those lungs of the lovely warm liquid that bugs like to grow in, every day.

[gardeninglady in reply to Hidden]

How do I find a Bronch specialist?

[Hidden in reply to gardeninglady]

They are usually based at big teaching hospitals. Look on the internet for one near to you and take the name to your GP. Insist on a referral and don’t take no for an answer. I presume that you were diagnosed by a consultant and ct scan? Bronch can only be diagnosed by ct scan. As you are managing to stay well I would suggest that now is the time to form a relationship with a bronch specialist. They can advise your GP what to give you when you do get an exacerbation and if you get into trouble you know where to go. Good luck

[Fionafish in reply to Hidden]

Every four months I see a consultant at Southmead Hospital in Bristol who is a specialist in bronch. I was doing okay until this year. I think you are right about the ABs but not sure if long term clarithromycin is working as still not back to my normal. I usually exercise up to 120/130 heart beats but consultant told me I need to work harder (getting my heart beat up to 160 as I am 60) so I am doing that for an hour a day. Also take carbocisteine, have a flutter device and do active breathing but only sporadically. Trouble is I am still clearing my throat at night and can't sleep so what else do you do that might help please? Thanks for your response

[Hidden in reply to Fionafish]

To be honest, bits stuck in the airways or making their way up to your throat during the night is par for the course with bronch, however hard we try. Maybe doing a session of active breathing, using your device or whatever shifts it best for you and a really hefty clear out before you go to bed may help to get rid of it for longer. Heartbeat up at 160 seems very scary to me. I am supposed to keep mine under 90 but I do have dilated cardiomyopathy now. It’s not really how much or how strenuous you exercise that is important but the time and effort that you give to getting the mucus out. Probably several sessions each day to suit your routine. I have never had clarithromycin because it does nothing against pseudomonas which I live with in my lungs. I nebulise ceftazidime. I guess that your specialist will be looking at what bug is in there and may decide to change the ab. Unfortunately, for many of us, the production of mucus happens whether or not we are poorly with an exacerbation. It does not necessarily mean that the ab is not doing its job. The problems come when the mucus is thicker and darker than normal and most importantly, you feel poorly. I hope that helped a bit.

[Fionafish in reply to Hidden]

That was really useful littlepom, thank you. I agree with you about the heartbeat and have today kept between 130 and 140 (think that will be my limit for a while). I was told by one doctor that the longer the better so have always exercised for 45 minutes and from a month ago have added 15 minutes on a rower. Maybe I will split the two up or at least do the rowing separately. Plus seem to spend most of the evening either doing active breathing or using the flutter device but still up a lot in the night clearing my throat - it is pretty continuous. Did try having a mad dance session for ten minutes just before bed one night and that shifted quite a bit so that is always an option. My exacerbations are usually diagnosed from quite a violent cough and a doctor or health practitioner listening to my chest - I rarely feel poorly (which would be useful in some ways as then I would know for sure but of course would rather feel well!) Sorry to hear you have dilated cardiomyopathy and hope you are keeping well.

[gardeninglady in reply to Fionafish]

Hi Fionafish I put a lot of effort and money into trying to stay well in various ways so to be honest it is hard to know what is helping what isn't. But I would rather do that than be ill and be on anti-biotics. I have had a couple of times this year when I have been coughing more than usual, but no other symptoms, and the sputum samples came back negative. The doctor said it could be just a virus. If the virus has not then created a chest infection I am happy with that. In the past as soon as I caught a cold it would then be a chest infection the next day. I think my chest infections reduced from the time I started juicing mostly vegetables. I am on a high plant diet. I take various nutritional and herbal supplements some of which are designed to boost the immune system. I have boosted my amino acid intake. I exercise in the gym and go to a class for people with health conditions. This is only twice a week as I don't enjoy it that much. I dance twice a week and maintain a garden.

[Fionafish in reply to gardeninglady]

I agree and do most of the things you say. I have a mainly veg diet, no processed foods, sugar or meat, occasionally eat fish, plus exercise every day. Think I better get a juicer and start with the supplements as so frustrating to keep getting infections. Thanks for the info

[Hidden in reply to gardeninglady]

Doing all the right things. Bravo

[Izb1 in reply to gardeninglady]

I used to have a juicer and do miss it, it was just the right size but couldnt replace it, but I do eat alot of fuit and vegetables and cook most things from scratch. It was really the supplements I was curious about. I am quite fit and do my garden regular along with walking, my rheumatoid stops me from doing things like decorating now but I still paint the woodwork and even a wall or two if needed, so think I get enough exercise. I just feel like I am deteriorating quickly this year. It could be down to the fact that I cant find an inhaler that helps. Glad to hear that things are working for you, and thanks for the info. Irene x

[TheDoors in reply to Fionafish]

I have bronchiecstasis fairly well contained but I wanted to share a remedy. I have been using a product that seems to help. I have no connection to the company ... I just stumbled upon the product which I purchase online. The product is made by “PANACEA Life Sciences” and is called F.A.S.T. “35 mg Hemp Oil Extract” It is made in Colorado and comes in the form of tablets. I have been experimenting with dosage and have been taking 2-3 tablets daily. I have been impressed with results. It seems to profoundly reduce the gunk in my lungs and the symptoms. CBD is legal in Colorado but I purchase the product online. I hope it helps others.

[gardeninglady in reply to TheDoors]

Hi to the Doors, Thank you very much for sharing this. As it happens I am recently taking CBD oil as I have some basal cell carcinomas and heard that it can be helpful. I have noticed no effect on my lungs however. I will look into it to see if may be yours is a higher dosage. So far nothing reduces the amount of mucus and therefore the number of times I have coughing fits a day to get it out. If I had less mucus and therefore less coughing the quality of my life would be so much better. On the positive side I have not had a chest infection for 10 months. So I think that the supplements I take, exercise etc must be helping with that. Thank you once again.

[Hidden]

Hi gardeninglady

Having done some reading on it, glutothione is more of a homeopathic treatment. There has been very little medical research done into its uses in lung conditions. In fact, only into its use in asthma, where it caused bronchoconstriction.

The only information that I can find is anecdotal from users on the websites of people who sell it.

The concept is interesting but as I nebulise ventolin, saline and ceftazidime, all of which have been subjected to rigorous research into their effects on damaged lungs, I am reluctant to add an untested substance into my lungs.Similar claims have been made for colloidal silver and peroxide, neither of which I would go near.

I shall ask my consultant what she thinks about it and as she is co chairman of the committee which recently produced the latest guidelines for bronchiectasis I shall be guided by her.

If you do try it, please let us know how you go on.

Congratulations on staying exacerbation free for a good length of time. I found that taking high dose vit D did the same thing for me (or is it just luck). After 65 years of living with the bronch boggart it is difficult to tell.

[Bella395]

Gardeninglady - why do you want to try nebulizing this substance? Being infection free for one year is good going - you are doing remarkably well by the sound of it. Can you list the medication and regime that you currently use? It would be useful as you would then get more relevant advice. Unless you have a good reason for wanting to try it, there doesn’t seem to be much point in introducing a substance into your lungs that is not necessary.

[Hidden in reply to Bella395]

Too right Bella

[gardeninglady in reply to Bella395]

It is because I have read about someone who claims to have recovered from Bronchiectasis. He did many things to aid his recovery and nebulising with glutathione was one of them. I would like my lungs to not be producing so much mucus and therefore not have to cough so many times each day.

[Hidden in reply to gardeninglady]

Sorry, bronchiectasis cannot be cured because the airways and alveoli are stretched. This allows mucus to collect in those spaces and infection breeds in the warm moisture. This is why anyone with bronch needs to empty their lungs of this mucus every day. This is best done to a routine which suits you. It is tedious and tiring but inescapable.

If the mucus changes colour and volume but more importantly if you feel unwell, then you need antibiotics. We also nebulise antibiotics to keep the numbers of bacteria down. Bronchiectasis is caused by many things. Some people have a low immune system. Mine goes like a train and always has done.

I have seen that book claiming to have cured himself of bronch. There are several of them actually. A selling exercise and a load of rubbish.

Daily management, a healthy lifestyle, activity to suit you and the abs when you need them in the best form and dose is really the way to live with it.

Save Your Money

[Izb1]

Hi gardeninglady, please let us know what you have been using to be free of infection for a year would be wonderful x

[gardeninglady in reply to Izb1]

See my reply to Fionafish

[Bella395]

Gardeninglady - I haven’t read the book but as littlepom has said, bronchiectasis cannot be cured. Distortion of the airways is irreversible. The most you can hope to achieve is to prevent the condition from worsening due to infections and you seem to have nailed that. Producing mucous is not very pleasant but as long as you are getting rid of it there is less chance of infection.

All that being said, it is your choice regarding use of this substance. If you go ahead inform your doctor/s and possibly your pharmacist. They need to know in case there are any interactions with prescribed drugs or if you have any problems. With any new nebulized drug a test dose is usually given in the clinic or hospital in case of bronchospasm. The drug might be ‘natural’ but the carrier and/or preservatives have the potential for causing this, particularly if there is an asthmatic element.

[Brenda102]

Hi, I am having problems with infections too. 2 years out, I was in the hospital for a few days on IV antibiotics. I was also looking at glutathione nebulization. Dr. Whitaker site in the US has some instructions on how to do it. I have pseudomonas infection, and can't take the cipro for it.

[Annierpan]

I have read the book also. It was very interesting. I also would like to try the glutathione. I am going to add some of the supplements etc he used and try doing bits of what he did. I don't think the supplements can do any harm.

[Neville33 in reply to Annierpan]

What is the name of the book...I also have psedomonas..doing 3 weeks of cipro then colustin

[Annierpan in reply to Neville33]

The book is called Beating Bronchiectasis by Daniel Pecaut off Amazon. It would be an almost impossibility for most people to follow. But I myself have taken a few tips from it.

[Neville33]

What is it that u r using to boost your immune system...I use Tumeric(pill) gatlic(pill) vit D, 5000ml with vit k to absorb the vit D

[gardeninglady]

Some of the names would not make sense without giving you the makers/providers. Are we allowed on this site to give make names?

[moodygirl]

Hi gardening lady, a woman after my own heart. I too eat healthily and take many supplements - in fact I do all I can to avoid taking antibiotics which are sometimes an unavoidable but necessary evil. I've recently been nebulising glutathione, not prescribed but I've been impressed by what I've read about it. My consultant tut tuts when I tell him what I do because it hasn't been researched, but admits I'm doing well.

I recently had what I thought was a heavy head cold which then turned into a cough. Before I started on my emergency antibiotics I submitted a sputum sample which revealed no bacteria - a first for me.

I don't know what's working because I take so many supplements, but I'm feeling good at the moment.

😊

[gardeninglady in reply to moodygirl]

Hi Moody girl, I am not having any luck with finding where I can obtained reduced glutathione from for nebulising with for my bronchiectasis in the UK. Can you tell me where you have obtained some from please? Gardening lady

[gardeninglady]

Hi Moody girl,

Yes it sounds like we have a very similar approach. I am pleased to hear that you too have had negative sputum samples. I just want to find out if nebulising with glutathione could be harmful in any way. I know that it is an anti-oxidant but I am wondering where they obtain it from and if it is chemically processed or not. Do you know where I can find out about these facts and where I can obtain it from in UK please? I understand that it needs to come from a particular kind of pharmacy to keep it sterile.

[gardeninglady]

Hi Moody girl,

I am struggling to find where I can obtain glutathione for nebulising in UK. Are you able to tell me where I can obtain it from?

[gardeninglady]

Some of you have asked what supplements I am taking to aid in staying chest infection free. I have to re-iterate that I don't know what is helping and what isn't and I suspect that it is not one thing but probably a combination of items. I am currently taking wild oregano oil, olive leaf, Vitamin D3, a complete antioxidant mix and co-enzyme Q10. I have also been taking 2 other products for the last year both designed to boost the immune system, one of which is a nutritional supplement mix and the other a herbal mix. Am I allowed to give make names on this website? I think that there may be elements of my diet and exercise that are helping as well.

[moodygirl]

Sorry gardeninglady, I saw your message last night and on scrolling back up saw you'd requested some info a while ago.

I've just sent you a PM as I don't think we're allowed to advertise on here.

You're doing well. Keep it up!

😊

[Jools7770]

I have had a series of chest infections and so many antibiotics. I have just found out about oil of oregano and would like to know more please? Do you take capsules or oil? Maybe with honey? You can email me: [e-mail]

If that would be at all possible please? I have been so poorly lately - aching so much exercise has been impossible. I am in real need to share your knowledge, if you don’t mind?

Thanking you in anticipation

Jools7770