Persistent sore throat/cold starting

[24cc]

I have mild bronchiectasis. For the last 4 or 5 months I've felt like I am about to start a cold - sore throat, chest feeling sore, a few sneezes sometimes - but I never get beyond this. I feel like this probably 60% of the time. At my last hospital visit I mentioned this and he took yet more bloods to check but I never heard anything. I'm back there again in a few weeks so will mention it again. Should I expect to feel like I'm always fighting something, and have a sore chest? I have signs on my CT scan of an NTM but was told that I don't have sufficient symptoms to justify treatment last week. I get more breatheless now than I was Any thoughts would be welcome! Thanks.

[Ergendl]

Hi, 24cc. I haven't experienced this myself. If you're on medication, check the information leaflets to see if you're suffering from some low level side effects.

[24cc in reply to Ergendl]

Thanks for the suggestion.

[falconcottage1]

I would think that having any evidence of NTM would warrant treatment especially if this is going to impact on your, even if the NTM was mild or am i missing something?

[24cc in reply to falconcottage1]

NTM treatment takes a long time, and there are plenty of side effects, and my Infectious Diseases consultant feels that I'm not exhibiting enough symptoms. He said he's happy to see me at short notice if necessary. I'll discuss this with the respiratory team next week. Ironically I was actually feeling a bit rough at my ID appointment and wasn't up to pushing things!

[falconcottage1 in reply to 24cc]

hope things improve for you

[Hidden]

I saw somewhere the current "best practice" for NTM treatment in the UK but now, annoyingly, I can't find it. It was something like having successive positive sputum samples coupled with increasing symptoms and deterioration, significant CT evidence &/or positive bronchoscopy result. I've got fairly severe bronchiectasis and have been deteriorating for 18 months. I've tested positive for NTM but they're holding off on treatment at present & treating just about everything else they can think of! They want to be sure it's NTM causing problems, as the treatment for it is fairly toxic. In many people it's another problem which is causing them to feel ill, rather than the NTM. Definitely mention this again because if you're not getting any better he may decide to treat it, or at least do more investigations.

Here's a link to a good NTM website. It's a US one so not everything applies to the UK but I think it's a great guide which answers lots of questions ntminfo.org/

[24cc in reply to Hidden]

Thanks for that. They can't isolate what bug I've got but they can see it on the CT. I'll have to push things at my Respiratory appointment. Maybe it's something completely unrelated, as you suggest. The NTM treatment sounds pretty awful.

[Hidden in reply to 24cc]

Surely your sputum shows the particular type of NTM? Mine is mycobacterium avium complex (MAC) which is the most common. If your sputum samples are negative you need a bronchoscopy with lavage to swoosh out lung cells for analysis. I think most people tolerate the treatment pretty well but a minority have quite bad side effects. I’m pretty keen for them to treat mine as I’m just getting worse.

[Hidden]

I think that your respiratory team should be dealing with the NTM rather than an infectious diseases consultant. The infectious diseases consultant is interested in the condition as it affects the population and is spread within it. Similar to tuberculosis. Also he is not a respiratory expert and so not particularly interested in the damage that it can do to already damaged lungs.

. The respiratory team are familiar with different bacteria which get into damaged lungs and colonise them. One of the others is pseudomonas. They usually find it by testing the sputum thoroughly which should give them the strain. Then they decide to treat or not. In my experience of talking to people with NTM colonisation they usually do as they need to ensure that it doesn’t bring about further damage to the lungs. As you are also not feeling well I think that you need to see your respiratory consultant asap.

[24cc in reply to Hidden]

Thanks for that. It all seems a bit of an uphill struggle! I've had about 18 months of tests and appointments, and the novelty has now worn off. I do find this site very helpful and reassuring.

[Hidden in reply to 24cc]

At least on here you find out that you are not alone with your uphill struggle and sadly, how little the medical profession know about our conditions. With bronchiectasis, even if it is mild, you really do need a bronch specialist. General respiratory consultants do not have the training, experience or expertise to manage what is a very complex condition. Unfortunately they will often not admit it. Have a look to check if your consultant is a bronch specialist. If not, look on the internet for one in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer. These are your lungs not theirs and it is your ongoing health which is at stake. I’m afraid that I do have to say over and over again that we need to be viciferous in our own interests and determined in sourcing the right care and management. Good luck.