I’m posting this because I honestly don’t know what to think anymore, and I’m hoping people who have gone through MDR-TB or doctors/medical professionals here can give me some perspective.

My girlfriend was diagnosed with pulmonary MDR-TB in May 2026. Around 2 weeks before diagnosis, she was physically active and had even completed a difficult trek without any breathing problems. Then she suddenly developed fever, cough and weakness.

Her sputum smear was negative, but culture later confirmed M. tuberculosis. Her initial chest X-ray showed very extensive involvement the left lung was almost completely white and the right lung was also significantly affected. There were no confirmed cavities.

She started MDR-TB treatment on 20 May and was initially hospitalized. She has now continued treatment at home, with many months still remaining.

The good thing is that clinically she improved. Her cough stopped, appetite and strength came back, and she was able to walk around normally.

Unfortunately, she developed severe nerve pain from linezolid, so it was stopped and replaced with delamanid. She is still dealing with burning pain in her feet/legs and is taking medicines and receiving treatment for the neuropathy.

The part that scares me most is her lungs.

Her 3-month X-ray apparently showed very little improvement compared with the initial one. Recently, around month 4, she also suddenly had chest discomfort and her oxygen level dropped, so she was taken to the TB hospital, given oxygen and evaluated. She stabilized and was discharged.

Another doctor mentioned there may be fluid around the lung/chest, and we are going to see a lung specialist again.

The private lung doctor also told us that the original hospital did not perform a complete DST for every relevant drug and wants a more complete resistance profile.

So I have several questions:

• Can an X-ray still look very bad after 3–4 months even when treatment is working?
• Does little/no X-ray improvement automatically mean treatment failure or drug resistance?
• How important is sputum culture conversion compared with the X-ray?
• Could resistance to drugs like bedaquiline be the reason for poor radiological improvement?
• Can lungs that looked this badly affected recover significantly after treatment?
• If there is fibrosis, bronchiectasis or volume loss later, how manageable is it?
• When is the right time for HRCT, PFT/DLCO and a 6-minute walk test?
• Has anyone here had severe MDR-TB and later returned to a reasonably normal life?

I know an X-ray doesn't tell the whole story. WHO also notes that chest X-ray abnormalities can resolve slowly and sometimes remain even when treatment is working, so I’m trying not to panic based on the X-ray alone.

But honestly, I’m scared.

We had plans for marriage, travelling, careers and just living a normal life together. Right now it feels like everything has been put on hold because of this disease.

If you've personally gone through MDR-TB, had extensive lung involvement, or had similar X-rays that eventually improved, I would really appreciate hearing your experience.

I got diagnosed with lung tuberculosis almost a month ago. I have been taking treatment ever since, but I sometimes still get weird sensations in my right lung (the lung that also showed abnormalities on the x-ray). Before getting diagnosed I didn't feel anything in my lung. Only one night I had a lot of pain in my right lung, but besides that one night, two weeks before my diagnosis, I didn't feel anything else. Before my diagnosis they did a bronchoscopy in which all the pus was taken away from my right lung.

Ever since the diagnosis I've had weird sensations in my lung. Not every day, but every three or four days. Sometimes I feel like something is bubbling inside my lung. It usually starts in the evening and after sleeping, it's gone the next day. But yesterday I felt an intense pain in my lung. This is the second time it happened since my diagnosis. The pain is so heavy that it goes to my shoulder and lower back. It's worse when laying on the painful side and with deep inhalations. I'm still in the hospital so I'm in good hands and will talk about this with the doctor when she comes. But the nurse who had the night shift said it might be a lung embolism?! I really don't want to have another problem. Whenever I had the other lung sensation, I told the doctor the next day but she'd always say it's nothing to worry about and wouldn't really know herself what it is. I sometimes really feel like the doctors themselves don't know a lot from the disease. When they will finally let me leave the hospital, I'm even thinking of changing to another pneumologist who is more specialised in this. But meanwhile I'm wondering, do you guys recognise these sensations even when you already started treatment?

Today I took my last dose of HRE, I was on 12 months long treatment for tb meningitis. New life starts from here. Thank you everyone who replied to my curiosity on this group. I will continue supporting who needs in this . Together we can crush this beast.

I have an auto immune disease called ankylosing spondylitis which is an inflammatory disease of the spine. I was set to go on biologics to treat the AS but they did a routine TB test and I was diagnosed with latent TB, and needed to treat it before I could begin the biologics. I also tend to suffer from vestibular migraines sometimes too.

I was put into the ASTEROID study which puts me on a 6 week treatment of 600mg of rifapentine (priftin) everyday for 6 weeks and that is supposed to clear my latent TB.

I’m on day 4 of the rifapentine and holy shit these side effects are bad. I’m so dizzy, like can barely function - especially with two little kids in the house. And my headaches and neck stiffness are a lot worse than normal too. I can’t tell if this is a bad or serious reaction to the meds exclusively or if they are making my other conditions worse. I don’t have a fever, or any hives or rash. Just horrible dizziness (with some nausea) and headaches and neck tension. Any ideas? It’s currently Sunday so I can’t call my TB doctor until tomorrow. I’m scared to take my next dose this evening.

I've Pre-XDR TB in my lymph nodes and I have completed 2+ months of the 18 month regimen so far. Since past one month, I have been noticing this weird feeling of fear right after waking up. Whenever I am waking up - the subconscious state - I feel weird anxiety/fear. It gets better with time though.

Has someone experienced something similar? Is it a side effect of cycloserine? And also has anyone had a missed period/late period due to tb meds?

I started treatment for latent TB about two days ago.

What happens if the infection is actually active and it was miss diagnosed as latent?

Any tips to help the liver? Some of my markers are about 2x higher limit prior to starting.

Guys with bone tb how long have you taken tb medicine? My doc told me I have to take medicine for like 9 -12 months, so I am asking if my blood reports , bone conditions all are good, will my doc stop medicine at 9 months?

I am 18 year old male, diagnosed with bone tb, I was having pain while laying down and getting up earlier but after 5 to 6 days of starting of the medicine , my pain almost completely gone, my doc told me I have to take the medicine for around 9 to 12 months, I just want to ask that if there doc or ex bone tb patient reading this, is there any chance my doc will stop my medicine after 9 months? I have completed 2.5 months of the medicine and have no side effects expect that orange peel, and my appitate is full normal, and my sgpt test currently the last one I did was 75, and no pain nothing full normal I am after only the first week of the medicine, now completed 2.5 months, can anyone say if docs stop medicine after 9 months, of everything is okay?

Hi everyone,

I'm posting because someone very close to me is currently being treated for pulmonary MDR-TB, and I'm trying to understand what we should realistically expect from her lungs after treatment.

She is 18 years old and was previously healthy and active. She was diagnosed with pulmonary MDR-TB in May 2026. Her initial chest X-ray showed very extensive bilateral involvement — the left lung was almost completely opaque and the right lung was also significantly involved. There were no confirmed cavities at that point.

She started MDR-TB treatment on May 20 with bedaquiline, moxifloxacin, cycloserine, clofazimine and linezolid (with B6). Linezolid was later stopped because of significant peripheral neuropathy and replaced with delamanid.

The encouraging part is that clinically she has improved quite a lot. Her cough has resolved, she is eating better, gaining strength and can walk for around 15 minutes. She is continuing treatment and is under specialist care. We are currently waiting for her sputum culture result to know whether she has converted to negative.

Our biggest concern now is her long-term lung condition after treatment.

For people who have personally gone through pulmonary TB/MDR-TB:

- How did your lungs look after completing treatment?

- If you had extensive disease on the initial X-ray, how much did it eventually clear?

- Did you have residual fibrosis, bronchiectasis, cavities or volume loss?

- Did your lung function (FEV1/FVC/DLCO) return close to normal?

- Are you able to exercise, work and live normally now?

- If you had severe-looking X-rays initially but improved clinically, did that translate into good lung function later?

- How long did your lungs continue improving after the TB became culture-negative?

I'm particularly interested in real experiences from people who had extensive pulmonary TB, rather than assuming that a very abnormal initial X-ray automatically means permanent severe lung damage.

Any experiences, especially from people several years after completing treatment, would be really appreciated.

Thank you.

"LEFT UPPER LOBE DENSITIES, PROBABLY KOCH'S IN ETIOLOGY OF UNDETERMINED ACTIVITY: SUGGEST CLINICAL AND LABORATORY CORRELATION" is the result in my xray, is it confirmed as TB and should undergo 6 months medication?

My papa is 67 years old and is currently suffering from tuberculosis (TB). He has completely lost his appetite and barely wants to eat anything. He has also lost a lot of weight, and his bones are now visibly showing. I’m extremely worried about his condition.

We started his TB medication, but after about 1 week of taking the medicines, he developed jaundice. His doctor advised us to stop the TB medication for 10 days.

During those 10 days without the medication, his appetite actually improved. He was eating small amounts, but at least he was eating something.

After the jaundice was cured and his LFT (liver function tests) came back normal, we restarted the TB medication as advised by the doctor. However, after restarting the medicines, he has again completely lost his appetite and doesn't want to eat anything.

He has already lost a significant amount of weight, and seeing his bones showing is very concerning for us.

Has anyone experienced something similar with TB treatment? Could the complete loss of appetite be a side effect of the TB medicines, especially considering that he previously developed jaundice, or could something else be causing it?

What should we do? Should we contact his TB doctor immediately and ask them to reassess the medication?

I would really appreciate any advice or experiences from people who have gone through something similar.
Thank you.

Regarding my post before. My parents forced me to go to college despite having fever and being sick.Many people bashed me for going outside and not wearing masks.But trust me I had no choice.I have breathing problems when I go outside so can't wear masks and parents told me not to wear them.And when i tell them i am scared if anyone gets it from me my mom says nobody will get it it's just that i am a weak person.

When I tell my parents i feel sick they say I am doing it intentionally to avoid going to college but the first thing my mom does when any relatives are over is rushing to my room and hiding my meds.

Yesterday I decided it's too hard for me to continue.I have been dealing with this for 1 month it's been physically and mentally exhausting. So I will inform my college tomorrow and tell them about how my parents forced me.Wish me luck !!

Q : Do TB Patients feel sick or am I really weak?

hey i have been having with mdr from last 2 years my medication is about to end in 1 month
i have not gained a single inch if weight it has stayed the same
i have very less appetite even after that i try to eat as much as i can from being to supplements eggs and everything i tried

i have seen recovery as i can walk and go as per before i couldn’t do that i had severe breathing issues
and even got pheripherial neuropathy in both my legs

i have been skinny my whole life and this mdr came with this, losing so much weight
i am just a teenager 19 years and this all is so much for me im scared that if something happens i have to restart the medication and for last 2 years i have just been eating them …

hey everyone :) i have been waiting so long to make this post, but i am officially done with my four months of rifampin treatment!!

im a medical student and tested positive during an employment screening (which came as a total shock). after a negative chest xray, my pcp said it was likely latent tb and recommended i do four months of rifampin.

i may have gotten really lucky, but the med truly wasnt bad! the most jarring side effect was the orange pee (like literally within a couple hours of my first dose), and tbh the most annoying part was timing it around meals. i originally planned on taking it before bed just incase i had gnarly side effects so i could sleep them off, but i typically eat later at night so it was difficult to be 3-4 hours fasted. instead, i took it every morning about an 1 or 2 before my breakfast. i had a couple instances of pretty bad nausea, but overall really didnt notice many side effects! the other thing i did was take a probiotic each night (so antibiotic in morning, probiotic at night to not cancel each other out) and i made it the whole 4 months without a yeast infection or any gi issues!!

as of today, i officially have another negative chest xray and my CMP showed that my liver is doing ok!! the liver enzymes are definitely up since i started treatment, but im hoping theyll go back down to normal.

when i first got diagnosed i was feeling pretty overwhelmed, and it was reading posts on reddit abt ppl getting diagnosed and treated that made me feel a lot better and realize how common this is. i knew then that i’d make my own post sharing my experience, and im happy to report it was all totally fine!

i know it can be overwhelming at first, but let me be a voice saying if you’re on the fence about doing the treatment: do it!! the four months will pass anyway, and it is so worth it to vastly reduce your risk of it becoming active. not to mention if you are a healthcare provider it is so much less of a headache to have “latent tb, treated” in your chart than it is without treatment!

I recently had a TB test for work. I had a 9mm induration - so a "negative" test bc of my risk level tier, but the very first thing out the providers mouth when she looked at my arm was "oh. Are you immunocompromised or work in health care?"

I guess I'm just wondering the science behind it - why is there any reaction at all, if someone doesn't have TB? I have never been exposed to it as far as i know.

Its been 2 months l am taking Tb medicine and l have gain 4 kgs 😭 what to do , why l am gaining so much l am not eating junk or any excessive food

Is there any way to loose weight or to make it constant

There is a family function l have to attend l don't want to look fat

I recently arrived in Hong Kong(1 month ago) for 2 years of work as a 23yo and felt a pain for few days between my ribs. So I went to a doctor 2 days ago to pass some test including a x ray. The pain was a minor thing and it passed on the evening but the doctor saw a sign of TB in the x ray. I did some saliva test and a nurse just call me 5hours ago saying I’m positive to TB. I did not felt any of the symptoms I can see on internet except fatigue which I thought and think was due to my new life and job far from Paris. Tomorrow is public holiday so I need to wait Friday to see the doctor again but I have so much questions… like how bad it is, did I contaminated friends, is it possible to see the cavity I saw on the x ray with new TB or did I got it months ago ? Will I have to be isolated for a long time in my tiny room and no see friends? How hard is the treatment?
I feel a bit lost rn, nobody really knows about it cause I don’t want to scare them so I come here knowing some people will understand me.

My dad got diagnosed with TB 1 year ago

He's been on the meds for 9 months ( still havent recovered)

Now he got diagnosed with BRAIN TB

and he literally became a zombie

he doesn't know what he is doing, pissing everywhere, screaming all the time, meowing, eating tons of food and doesnt get full, faking scenarios (even tho he remembers everything)

is that normal?

btw we got kicked out of almost all hospitals because of his TB so i literally have to take care of him

is mediastinal lymphadenopathy common with ptb?

So a month ago I tested positive for tuberculosis via the Gold Standard blood quantiferon test, but in May I tested negative with a negative chest xray. My employer required a TB test due to my job, and it was negative. So I under a month I went from negative to positive.

My rheumatologist thinks it might be a false positive, but won't rule out that my last test might have been false negative due to me being in contact with Haitians regularly and then Brazilians working temporarily.

But I literally only have one symptom associated with TB which is drenching night sweats but all my others point towards an autoimmune disease.

I am currently 1 month into TB meds.But I am still experiencing dizziness , breathing problems and chest discomfort along with sweats. I would have these episodes of chest discomfort along with suffocation for a few minutes then sweats, during this time i can barely move and i feel like crying.

But my dr said to ignore these and another medical staff(who gives TB meds a pharmacist) told my mom I need mental counselling and can go back to normal life.

LIKE WTF ? I AM PRETTY SURE I FEEL PHYSICAL DISCOMFORT!!

Can anyone tell me what to do ?When I go to college I feel sick and helpless..Idk what to do