problems after pulmonary TB

Hi,

I'm a TB survivor (I have posts on this forum). Here's what I can say: doctors have been essential to our survival but since our particular doctors haven't experienced TB, they're mostly at a loss on what to tell us after treatment is over. It's not their fault. However, what the medical journalists can do is interview people like us so our experiences are documented and used by doctors for future advice-giving. But until that happens, here is the summary of my personal experience and advice to you.

First of all, "it's not useless" because in fact, your body is recovering and regenerating the tissues destroyed by the TB.

Before treatment, the disease was destroying our tissues; that's why we were coughing, losing weight, feeling weak, and otherwse very sick. During treatment, the medication killed the TB bacteria, but guess what - our tissues that have been damaged remain damaged. The bacteria has stopped eating tissues, but we've got to do something to help the tissues heal. Meantime that that they're not healed yet, we continue feeling sick.

It's a long process. It's been 2 years since I started treatment, and today I'm about 95% feeling normal. During and after treatment, I continued feeling sick. I was doubting my wellness, but I realized that I had to take concrete steps to recuperate.

So what I did was started getting at least 8 hours' sleep, eating nutritious food, taking multi-vitamins, spending more time outdoors to get the sun's healing powers and the fresh air.

I've been doing the above for almost 2 years now. It's not an overnight process.

Remember, you are free of the TB bacteria but the reason you're still feeling sick is due to the damaged tissues in your body. You need to nurse those tissues, and your entire body, back to health.

More specifically, during the first 6-12 months after treatment, I was still hearing a "wheezing" sound (like phlegm in my throat and lungs), having low-grade fever every now and then, feeling restless because there seemed to be "something" in my lungs I couldn't expel (I'm sure that's phlegm), and didn't like doing physical activity.

I forced myself to go out and play sports under the sun. I began running 4 miles/6.4 kilometers weekly. I began sleeping at least 8 hours/night (sometimes less, sometimes more).

I had to climb the mountain every day. It's paid off. I feel very good now, although not like when I was younger and TB-free. I'm realistically hopeful that by year 3 or 4 I'll be completely symptom-free.

So again, what you're going through is NORMAL for recovering victims of this once fatal disease. It's not anymore, but we survivors need to know that recuperation after being free of the TB bacteria is just as important as the anti-biotic treatment.

You'll get there. It's a marathon, but the finish line is yours to cross. Sleep, food, sun and air, and a positive attitude are what you need to have, and complete recovery will come.

"TBFree"

@TBFree

I'm a TB Victim in Saudi Arabia. TB treatment in this country is very strict and rigid and we're confined in a maximum security facility, just like in prison until we get negative result from sputum test. I was released 3 months ago and my Chest physician told me not to do strainuous exercise and I should sleep well. The result is that I gained 10 kg even if my appetite did not return to normal. I'm still receiving medication and my feel is bloated and it hurts a lot. I hope to recover fully since it's affecting my work and life. Thanks.

Thank you very much for your help TBFree

You're welcome, Emi1982.

Promise yourself that you'll get enough sleep, eat healthy, exercise, ignore the symptoms, and have a positive attitude for as long as it takes.

One day you'll just wake up feeling as good as new.

hi TB free

I completed my 6 month treatment for TB. after a month I still felt back pains specifically the part where hazines seen on my x ray. have you felt that? is it normal and will recuperate after good sleep exercise and nutrition?
thank you

TB Free, please tell me did you suffer from headaches when taking TB treatment? My boyfriend is on the 4th month of the treatment and is taking Rifinah, he suffers with headaches and fever all the time. I am now getting worried as he has to take pain and fever medication on a daily basis and that would damage his liver. Please advise.

Corncerned1

Yes, I had headaches but not very frequent. Your boyfriend might have some hyper-sensitivity to his medication. Best to ask his doctor if there's an alternative. On the fever, he'll probably continue to have them but they'll stop completely. I'm on my 22nd month after treatment completion and I still have headaches and fever maybe once/10 days. I used to have them more often.

I am uneder treatment for TB for past 3 months and the recovery is slow.
I have not quit working but the office that I sit has a centralised air conditioner which is freezing. It is like sitting inside the refrigerator. Is that the reason for slow recovery. Can anyone help?

i had taken 9monhts of tb treatment from oct2010 to jul2011. but getting a phlgum in green and sometimes white milky and also having snoozing in my chest please suggest me how to get rid of this..........
thanks

hello TBfree, is it okay to go to the gym while still taking the meds? My bf started working out/gym on his 5th month of medication. He told me that it gives him a good feeling when he's doing it. Thanks!

Hello Everyone,

I don't come here regularly so please forgive my late reply.

On the question of a cold environment slowing down recovery, I don't think this is a factor. However, not spending enough time outdoors for fresh air and sun will hinder recovery. Meaning to say, spend time indoors as well as outdoors.

Honnu, for as long as you were strict in taking the medication, you can be sure that the TB bacteria has been extinguished. What you're experiencing now (phlegm production, wheezing, occasional fever) are symptoms of damaged tissue that were caused by the bacteria. It will take time, proper nutrition, adequate sleep & rest, and sun and exercise to eventually repair the damaged tissues and for you to start feeling normal again.

In my case, I'll be going on my 4th year from the initial onset of TB symptoms and it's only now that I'm beginning to feel normal.

So, it will take time and care.

Jewelrybox, I've replied to you via PM.

Take care everyone.

TBFree

is it okay to go to the gym while still taking the meds? I have checked the sputum and there is no bacterias any more in my lungs its TB freeI have been taking the medication so far 2months

I would advise you to consult your doctor for exercise and other activities while you're under treatment. If you want my opinion, though, here it is: one of the dangers of strenuous activity while the bacterium is still active is its spreading to other parts of the body, as it can be carried by the bloodstream. Otherwise, it would seem safe to exercise (w/c I did as I was sure the bacteria had been extinguished).

Yeah thx for the answer , highly appreciated.

Hello i got another question.
Am TB free but still on medication ,how many litres of water i should take a day, at first i was taking 3litre but now i see it its too much for me because my stomach is getting big everyday...can i reduce to 1.5 litre ...Because i heard dat when u don't take too much water the tablets can damage your liver Asap.

i agree with TBFREE you need activities ,proper diet and a positive attitude.

i would like to share my story, i was also a victim of these disease. when i was in college i was shock to find out that i had tb. the symptom showed but i kept in mind i was young and my body can fight it off.

With understanding what the tb can do . i suddenly got weaker and weaker. lost alot weight and was coughing up blood. i went through the 6 months process on medication but sad to say i did not get cure. My tb became MDRTB (multi drug resistance tb). i thought it was the end of my life.
i was sent to lung institution where i was shock there where alot of other victims like me.
the treatment is hard. everyday for 2 years i have taken special medication and shots. you would not like the sick effects! trust me...
i followed doctor orders . eat right , get enough sleep and be positive. its been 5 years now and im happly married with 2 kids.i was able to find a job. the wheezing is still there once and while. but im happy to say i tbfree.
im planning to apply to work abroad and i hope ill pass the medical exam. every year my company has me take a annul medical exam. the scares are seen but tb is not active!

its takes time and discipline but you get there!


be happy always!

Ground Control,

Yes! Your condition is probably the most severe I've come across on this forum, certainly more than mine.

That you recovered from it is, I believe, very inspiring for those in the dark about this insidious disease.

Blessings to all,

TBFree

Hello all!

Jus recently like one week ago i was told tat i had pulmonary tb..n along with that a cavity on the top part of my right lung...im unable to understand what is it and how does it affects tb?

Good morning!!!! Just this month my doctor told me that I have problem with my lungs.... in my first chest xray,it says infiltrates in my upper right lobes and in my ALV its a suggestive of a chronic lung disease compatible with pulmonary tuberculosis, minimal disease...how long does this can be treated? do i have big possibility to have pulmonary scars too? How can I avoid it?Hope you can help me, this problem really give me a lot of stress...

There are several tests to see if you have TB or not; do not hesitate to ask your doctor.
If you have TB, you will get a treatment (different kinds of drugs) for several months - 6 at least.
I am afraid there is no way to avoid pulmonary scars: if the disease causes damages to your lungs, there is nothing to do afterwards. Make sure you take your medecine VERY seriously, eat well and sleep well.