I am a bronx patient. I ponder about my state of health, such as breathlessness, then attempt to ease my anxiety by reassuring myself that my condition is not necessarily fixed and can be cured by the right kind of treatment. Am I wrong or is there no cure for bronx? What are the odds against my optimism that there is a solution out there?
Bronchiectasis and random probability. - Lung Conditions C...
Bronchiectasis and random probability.
Written by
Cateran
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44 Replies
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Hi Hun, There's always Hope , Yes, it is an anxious Time for all of us with Lung Conditions. Take each day and improve on the previous day, you know you Can. Best of luck, XXX C.
Positive mental attitude Cateran, helps to keep you going. Take care xxxx
Whilst we try to unravel the coding of the human genome.perhaps in the future to commonly use that knowledge to combat disease mother nature and our bacterial opponents generally tend to be at least one step ahead of us in what appears to be some universal race to oblivion so as a betting man i would steer clear of that prediction. 
One day in the future I would hope so Terry but presently there only appears to be surgery if BE is localised and it seems management to keep the status quo is all we have once the damage has been done. Saying that the ‘fixed’ aspect can be improved eg FEVs, less frequent infections etc can vary, although the underlying BE is ever present.
You are aware, I know, of all the work James and his fellow experts are undertaking with the awakening of fact BE has long been a neglected condition, will hopefully benefit peoplewith BE in the future. Not in my lifetime I would guess but we have to stay hopeful.
Love cx
Your thinking is similar to mine Cateran. I'm aware this condition is manageable not curable, though I've had the experience of it going into total remission for over a year but then unfortunately returned with usual continual productive cough etc. That year was fantastic, doing so much more.
To condense, as already posted on here about it, I was in hospital but due to surgery cancellations was fasting for 3 days and have always wondered if this was reason for such noticeable benefit. I'm aware that sounds too simple and unbelievable, but the difference was immediate and remained with no prescribed drugs whatsover. I did have high doses of probiotics.
Dr. Michael Mosley is my guru in medical research and advocates fasting each week for general health reasons, weight loss and different medical conditions and I do mean to try again on consecutive days but though my intentions are good I keep procrastinating. I'd add that my condition is regarded as mild, though at times doesn't feel like it, but I don't suffer anywhere near what some people on here describe.
I'm also optimistic as if I 'felt free of bronchiectasis' for over a year maybe it will happen again. I try everything suggested on here, lately it was caraway seed oil, so remain positive that some kind of treatment or therapy will show improvement, as there isn't a cure currently. Hope you folks don't think I'm talking balderdash!
in reply to Titian8
Michael Mosley is a lovely guy, an excellent broadcaster and genuinely concerned for the health of the population as a whole. His mission is to re educate a mostly overweight and under active population who are addicted to sugar, to change their lifestyles, thereby avoiding the development of type 2 diabetes. Brilliant, a healthier population and less strain on the NHS.
However- he is not a medical researcher into respiratory conditions and in common with many medics has very little knowledge (if any) or interest in bronchiectasis.
To suggest that a person with bronch should fast in an attempt to improve it is unwise to say the least. Many of us struggle to maintain any weight. I have to try to cram as much food as possible into my body as I can, just to keep me going. If I were to fast I would be in deep trouble very quickly.
As we with bronch are all different and life is a matter of management, we are best to find what suits us. Basically a sensible nutricious diet and rigorous adherence to lung emptying,exercise and whichever drug regime we need as we go along.
It is great that you stayed well for so long. I hope that continues for you.
Cateran in reply to
I could not have put it better than you have done, Littlepom, about the adverse risk of weight reduction in certain bodies and physiques. As you imply it can be necessary to do the opposite, depending on your bronx condition, and desperately try to conserve weight or increase it. I say "desperately" because my weight loss is a constant source of anxiety. No matter how much I eat there is no appreciable gain, and my GP advised liquid supplements, such as Complan milk shakes which are advertised as nutritious. After a year of this intake I haven't noticed any weight gain, though.
in reply to Cateran
I have had all of those drinks and products which are supposed to put weight on. They are horrible and do nothing. I have even tried the max protein powder that athletes use. Again no difference. Medics of all types simply blame my bronch for ‘draining’ my system and also for additional breathlessness which, with 67 years of experience I know is not caused by it.
I have been convinced for several years that I am iron deficient and vit B12 deficient. All tests looked at and pronounced ‘within normal limits’. B12 deficiency can be hidden by taking folic acid which I have been doing since 2016. Nobody listened to me. 4 weeks ago my heart consultant looked at blood results from last June and was horrified that I had been left with no iron supplement. He wrote to my GP explaining how 3 of those results add up to iron deficiency, that it is now known that heart failure causes iron deficiency and put me on a trial of supplement.
I also started using high dose vit B12 patches. In those four weeks I have put on nearly five pounds along with feeling better in other ways.
Today I am seeing the head of my practice to discuss the way forward and the official complaint that I have raised against the surgery for dereliction of duty. Wish me luck!
zube-UK in reply to
Good luck pom, it's about time they listened to us with bronch, isnt it a shame that the only way to be heard is through an official complaint.
In the meantime pom, try cooking food in a cast iron pan - runnersconnect.net/cast-iro...
in reply to zube-UK
My daughter has been nagging me to do that 🤣 unfortunately I couldn't lift it.
zube-UK in reply to
Hiya pom, this is not like you, when you put your brill mind to something - it gets done!. . ask your daughter to put it on the cooker and also clean it after. In India these cast iron pans provide a valuable source of iron in woman's vegetable diets, ha you will get a weight lifting workout at the same time 🏋 🙂
in reply to zube-UK
I live on my own so have to deal with things as I can. I am sure that you are right about the pan because I have read about it. My doc has just agreed to keep me on iron supplements.
zube-UK in reply to
Ah, can I ask, are these iron supplements any better than the ones of previous years ? they used to cause awful constipation.
in reply to zube-UK
They are the bog standard ones. I take a large teaspoon of Regucol from Holland and Barrett in my yogurt and fruit mix in the morning and that seems to be sorting it.
Cateran in reply to
Yes Littlepom, good luck. What do you define as Dereliction of Duty? Sounds like a legalistic cop out. Be ready for when they start to dance on the head of a pin. Is the meeting a tribunal or a Star Chamber confrontation?
in reply to Cateran
Dereliction of duty is a term you have to use yo concentrate their minds on the fact that they have failed in their duty of care towards uou. ( that's another one). I have been with them for 20 years and know the lead GP and Practice Manager very well so hope that they will now take my concerns seriously so that I don't have to take the complaint further.
zube-UK in reply to
Yes pom, go for it, treatment of bronch is getting better now though. My surgery in the forest here is wonderful, I have only to ask and they are on it. Even so, they can never know your body like you do, this is why I am so interested in long known natural solutions that I am finding very beneficial.
in reply to zube-UK
My surgery have always been very cooperative with my bronch specialist. Unfortunately for all of us, it is the other maladies which these long term conditions throw up that most have no interest in. I believe that if something works for a person alongside the big guns, which 67 years of managing my bronch has taught me are needed, then why not go for it. I am a big believer in the power of nebulised saline to keep pseudo in its place until something like a virus comes along. Many raised eyebrows but finally there are a couple of studies going on.
zube-UK in reply to
I completely agree, I also use nebulised saline to keep pseudo and haemophilus down, and steam with eucalyptus or origano to prize it from its limpets hold with my RC Cornet and lung flute. It's good to hear there are nebulised saline studies now, anything to improve the pitiful lack of interest there has been in bronchiectasis.
BionicLady in reply to
Wow Littlepom, reading this is shocking, it just goes to show that we really do know when something isn't right.
Good for you for persevering and fighting this, although it is the last thing you want to do when you are already not feeling 100%.
I hope your breathing is improving and your energy levels are on the up and that your meeting went well with the surgery!
Take care🌈
in reply to BionicLady
Thanks so much. Yes he read the letter from the heart con about anaemia and heart failure, said it was very informative, agreed to keep me on iron then couldn't resist saying ' you are only a little bit anaemic you know' 🤣bless him!
BionicLady in reply to
He probably had to eat humble pie hey 😉
Titian8 in reply to
I was primarily responding to Cateran about optimism and my reply was about my own personal experience as wouldn't dream of suggesting fasting was a panacea for bronch, because doing something so simple sounds implausable and quite ridiculous. I was just relating what happened to me and pondering why it was so.
I posted on here, at the time, as had done nothing different, no prescribed drugs etc but finding I could walk a 6 mile coastal path, jumping over rocks when before going uphill would leave me puffing and panting and taking breaks, coughing totally stopped as did all the mucous, symptoms just disappeared and, of course, I couldn't think of any change in my life except the fasting. I'm also about a stone overweight so if lost a few pounds that's a bonus for me, but know that isn't the case for those who struggle with being underweight. I mentioned Dr. M.M. as he is the one who promoted the 5:2 to the UK and aware he is a medical journalist with no knowledge of brochiectasis, however fascinating his programmes are on a range of conditions.
I did say that my bronch is mild so perhaps that had something to do with my symptom free year. However, it has returned, horrible as ever so it unfortunately wasn't permanent but am hoping it can happen again and therefore I remain positive.
Someone lately posted about the excellent results he had with caraway seed oil so I tried it but it did absolutely nothing for me, So we are all different in what works for us.
To reiterate please know it was never my intention to recommend or suggest to others with bronch, and agree that would be very unwise, I was simply relating my own story with both hope and optimism for the future.
I've read many of your posts and others and can't begin to imagine what it's like on a daily basis with severe bronch. With best wishes. Fliss.
Fliss, I have also done short green juice fasts with good results even though I was slightly underweight at the time. And I had a colonic irrigation with the help of a herbalist, It was several years ago and I can honestly say I felt extremely well after the fasts. Then I found myself full time nursing my late dear husband so that has taken its tole from me.
Susi
I've never done a green juice fast ever Susi: so sounds like something to add to my 'to do' list. I eat loads of fruit and vegetables anyway, therefore this would appeal. I'll Google some recipes.
Losing a precious loved one is truly sad and I hope you feel stronger and better soon. Fliss
Thanks Fliss, loads of fruit and veg must be good, you may not need juices. I stated with Jason Vale's recipes, he does juice fasts, books and utube. I use more veg, kale, celery etc., now. Fliss I love your enthusiasm and open minded search for improvements for us all.
Stay strong,
Susi 🌿
in reply to Titian8
Although there is no cure for bronch, managing it Effectively on an individual basis is crucial to living with it in the best way possible. Carrying extra weight puts a strain on the lungs and the body in general and makes it difficult to take the amount of exercise needed to keep them working and to prevent a build up of the mucus which provides the breeding ground for the nasty bugs that give us so much trouble.
What you have done for yourself is fantastic and just goes to show that you have a good understanding pf your condition as it applies to you and are determined to ‘keep it in its place’. MMs plan obvioysly works for you.
Like you, I don’t find any benefit from supplements such as carraway oil, but for those who do, that’s great. Vitamin D 1800 per day changed my life and since I started taking it on GP prescription in 2016 my life changed. I have only had 2 shortlived head colds in all of that time and about 2 chest viruses per year which have developed into exacerbations which I knocked on the head with cipro.
Keep up the good work.
Titian8 in reply to
You have just mentioned something I never thought about before.
I'm on another forum on HU and it's suggested to wear a weighted vest, which is quite heavy, (similar to body builders) to increase bone density for osteoporosis. Yikes I might be doing a good thing for bones but bad for lungs so I must look into this further. Thank you.
in reply to Titian8
Oo I'm not sure. We have enough trouble opening our chests to breathe without squashing them with a weight on our chest. I think that some weight bearing exercise is a good thing but think that maybe T'ai Chi or sessions in the gym would be more helpful than dragging a weight on your body about. I have done lots of Yoga, pilates, and now I am tackling the juggling act that is Tai Chi and I think they help. Let me know how you go on.
Thank you for this thoughtful reply to my post Titian. No, I for one do not think that you are speaking balderdash. There could be something in the fasting suggestion, although in my case I am actually underweight because of my bronx and childhood deprivation, as well as tuberculosis in my youth. As you felt free of bronchiectasis for a year then that has to be a cause for optimism, so I wish you well that fasting works for you, provided that you reduce your diet under supervision, Do be careful Titian.
I also had TB as a toddler, I was told, though cannot remember it, or even being unwell, although was probably passed via my mum who had it too.
The doctors always said she had chronic bronchitis, and that was accepted without question. However, I now think it was actually bronch when thinking about her symptoms.
I'd definitely not be fasting if underweight but I'm about a stone overweight so losing a few pounds would be great in my case. Perhaps fasting did have something to do with such a noticeable improvement for me or perhaps not, who knows for sure - but am definitely not suggesting it to others. Though If it did play a part it's something I'm definitely going to try again, just to see if I get the same result.
I just liked your optimism that perhaps one day maybe there could be a solution for this awful condition and I hope so too. Keep well. Fliss.
Cateran, I can suggest 2 things that have brought about a good improvement for me -
Our lungs are one of the four main clearing systems in the body - kidneys, liver, lungs and bowel. If one of those systems is congested, eg. bronchiectasis is lungs, so make sure that the others are clear... it's quite easy to keep the bowel clear, I'm not talking about one bowel movement a day, 2 or 3 at least, every day. This is the first thing to do.
Secondly, virus and bacteria can not thrive in a healthy alkaline body, eat more alkaline foods and drinks.
After making these changes I have enjoyed several years feeling reasonably well and managed to put on weight to normal range.
Most people dismiss these suggestions but I felt the difference, to feel well after a lifetime of bronchiectasis misery is greatly appreciated by me. 🙂
Cateran, I forgot skin, skin is the largest organ of elimination so having a sauna, or excercise enough to sweat also helps. 💦
You know I have found your suggestions very hepful in the past, not to mention your arranging for me to have a flute and your darling husband carving the drying implement but personally I would never have a sauna etc because of pseudomonas.
I hope you are feeling better sweetheart and will be in touch soon.
With love
Cx
Hiya c, yes, that's a good point, it would have to be a personal sauna to avoid cross infection, I like a hot bath. You are amazing c, you have been so unwell but still support everyone here, it's lovely, I'm not quite right yet thanks, hope you are managing? February is my least favourite month, it's the end of 6 months of no Vit d from sunlight... . not long now 🌞
Roll on spring lovely. 🙂 xxx🥳
I have known I've had bronchiectasis for just over 2 years. I was told it's to do with my RA medication. I had a bad year last year one infection after another. During this time I'm told to stop my RA medication. It eventually ended with a hospital admission and intravenous antibiotics. I now get very sob when walking up hills but been told to walk as much as I can. At least 30 minutes a day brisk walking. I'm overweight so I know it's doesn't help. Trying to lose weight but so hard to do.
Sorry to hear that bunnycaramel. Was the drug Methotrexate?
Cx
Yes probably but specialist will not stop or reduce. Says it's working well.
Hello Cateran,
We all live in hope for sure and you should never give up hope.
Having lived with this horrid thing Bronch for 21 years (I know, nothing compared with some of our friends on the forum), I can only speak for myself, but have found that it really is about daily maintenance.
Physiotherapy is one of most important parts of this, as boring as that sounds.
Having some extra weight helps, when I get infections, I lose my appetite for days and weeks so for me, it helps. I try to eat as many warming things every day, especially during the winter months which I find comforting for my chest.
I take a lot of supplements for stronger immune system and others to give me energy as I still work and have two young children, who by the way come home from nursery with colds and viruses every single week!
I find that if I am stressed, it affects my entire body, anxiousness, breathlessness, constipation, stomach aches and this is usually when the infection cycle begins so avoiding stress and worry is key which I know isn't always practical but I have had to let go of so many things (particularly at work) and not let people's comments who I don't even care about not bother me, I am much stronger for it.
I do find that work and some people in general have no idea how debilitating it can be living with any lung condition but how bronch can affect a person every single day and feel a lot more research needs to go into why people get it and how to improve their lives besides taking antibiotics and IV abx.
The breathlessness and anxiousness go hand in hand unfortunately, try and find something to do that relaxes you, watch a comedy or walk or meditate, anything that helps.
Sorry to go on.
I wish you luck in staying well 🌈
All I can say that I've had 5 years of only 1 exacerbation and no hospital stays, when previously Pseudomonas led me a merry dance. My last escapade was Pseudo + Pneumonia = Sepsis. Spent 5 days on O2 and unconscious. 🙄
Have had bronchiectasis for ten years now, I am 85 , 86 in a couple of weeks. Have felt ill last two. Weeks, and was prescribed a second seven day course of Amoxycillin to follow my rescue pack of seven days Amox. There pills made me feel nauseous and my weight has dropped from eght stone to seven and a half. Would like to put on a stone but get tired eating
Am waiting for the result of a sputum test. Do feel my surgery gves me little attention, pseudos was diagnosed but no treatment. Trouble is, no energy to complain, no car to run around, try not to bother family if can help it. Do feel I am making some recovery, albeit slow. Love Iris x
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