NTM

[Annieosb]

Past 2 years have been a nightmare. Have had 3 bronchoscopies, 3 lung scans and I am 99% sure I had covid Marsh 2020.

I hae been diagnosed with NTM which seems to be spreading. My las brochoscopy turned up haemophilus influenzae, which has shown up before. Given 10 days doxycycline(which did nothing) Feel drained tired , least exertion desaturates me. Anyone know this condition and offer advice? Thanks

[Damon1864 Volunteer]

Hi Annieosb and welcome, I persy don't know anything about the conditions you have, but I'm sure someone on the site can help. Have you asked admin for any information that may help you. Sorry I couldn't help, please keep posting and let us know how you are doing. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Annieosb in reply to Damon1864]

Thank you.

[Patk1]

I used to get heaemophillus influenzae frequent before being immunized against it.I hope yr soon on best treatment for you.

Sounds like u need a much longer course of antibiotics x

[Annieosb in reply to Patk1]

Thank you. so there is a vaccine for Haemophilus Influenzae?

[Patk1 in reply to Annieosb]

Yes there is.i can't remember if its 1 or 2 injections. Iv found it very effective. Do ask for it.ive not had it detected since xx

[CDPO16]

All I know of NTM is that it needs prolonged, continuous antibiotics so perhaps best if you contact your GP or consultant for more treatment. Hope something helps soon.

[Annieosb in reply to CDPO16]

Thank you.

[tomhatha]

I had it in march that year and the hospital told my surgery after 4 tersts with that yello thick stick that I did not have it. I had a ct scan and it confirmed I DID have it.It took 8 weeks at home to get over it and I didn't know what I was doing ,I rang people and didn't know I had . The only way to confirm is to get a CT scan itlooks like ground glass if you DO have it or have. 1 year after I got long covid and still have it no smell, loss of balance throat cough etc. I thought the loss of balance was muscle trouble but found out that covid attacks the inner ear so that must be why I loose my balance. get a CT scan and know good luck Tom

[Annieosb in reply to tomhatha]

Thank you but have has 3 scans, 2 paid for myself, 3 bronchosciopies.....seeing consultant in February.

[jennycherrie]

Hi Annieosb. I was diagnosed with NTM (non-tuberculosis mycobacteria) infection in 2019. I grew the bacteria in four consecutive sputum tests over the next year. A ct scan then showed lesions on my lungs so my consultant decided to start me on the three antibiotics used to treat the condition. This decision was not taken lightly as the treatment is quite aggressive and the antibiotics need to be taken for eighteen months to two years. However, I am now fifteen months in and doing well. My sputum samples are now clear and a recent ct scan shows that the lesions have healed. I am no expert on NTM infections but just wanted you to know that I have been where you are and have come out the other side. Do you know what plan of action your consultant has in mind? I hope that hearing about my experience makes you feel better and please let me know if you want more information. Best wishes. Jenny 😄

[Annieosb in reply to jennycherrie]

Hi Jenny, I am seeing the consultant in february and it has been discussed about the antibiotics, again not to be taken lightly. I am so out of breath and fatigued that I hope the antibiotics will make me feel better. Do they? Thanks for this information and I will keep you posted on the plan of action. Thank you for all the information. Annie

[jennycherrie in reply to Annieosb]

Hi Annie.I’m so pleased that you’re seeing your consultant soon. You will feel better when you have the antibiotics, however, it does take a while and they have their own side-effects. My tummy took a few weeks to settle down and I found that it was better to take the azithromycin after food. I still get very tired but when I compare to a year ago, I feel much better. Take it slowly and be kind to yourself. Eat well, get lots of fresh air and exercise as well as you are able. It feels daunting when you start the treatment but the time soon goes. Good luck. Jenny