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problems after pulmonary TB (Page 1)

Hello

I am 28 and I was told in February that I had pulmonary TB.
The doctors were very surprised - until then I was healthy, sporty, had all my vaccines done in due time, etc. It seems that I had an unusual form of TB with "explosive" symptoms - very important in a short period of time.
I had to take antibiotics for 6 months. I did not stop working at the time and I accumulated a lot of fatigue.
I was able to stop the treatment 2 months ago, since I am officially cured now; my X-ray and blood tests are very good. Yet I feel very tired and somehow depressed, and I still have some pain in my back / chest. The lung specialist says I probably have intercostal pain because of the loss of weight. I'm 5ft4, 104lb. I try to have a lot of rest - I finally had to quit my job- and I try to eat well but it seems useless. I still dont't feel good.
Any advice or information about your own experience would be deeply appreciated.
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First Helper groundcontrol042910
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replied November 21st, 2010
Experienced User
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"
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replied April 16th, 2011
@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.
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replied October 11th, 2013
Hi
First of all Thanks for your help in this forum..its quite encouraging.

My condition, i was recently diagnosed with TB 5months back as i have massive haemoptysis all of a sudden before that there was only 2-3 occassions when there was few drops of blood stained clear sputum..I dont have any other symptoms like cough, Night sweats , weight loss except discomfort in chest and initially the xray came back negative..But on that fateful day i was coughing blood for 7Hrs in mouthful quantities and was put on TB treatment immediately because of cavity in lungs and the sputum tests came Negative but culture positive after 3-4 weeks.
I am on my last month of TB treatment and didn't miss tablets till date but since 1month i started observing again increased chest discomfort and occassional flecks of blood in Sputum. The TB is fully sensitive to medication as per the lab report. I am very worried and this gets me depressed often..
Any advice !! can i go to gym to feel better

Appreciate ur help.

vj
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replied November 23rd, 2010
Thank you very much for your help TBFree
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replied November 23rd, 2010
Experienced User
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.

Wink
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replied July 7th, 2011
post treatment
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
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replied February 23rd, 2011
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
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replied March 19th, 2011
Experienced User
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.
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replied April 18th, 2011
TB treatment
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?
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replied February 4th, 2012
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
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replied February 8th, 2012
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!
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replied February 10th, 2012
Experienced User
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
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replied October 12th, 2012
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
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replied October 14th, 2012
Experienced User
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).
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replied October 15th, 2012
Yeah thx for the answer , highly appreciated.
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replied October 15th, 2012
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.
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replied October 25th, 2012
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! Smile

its takes time and discipline but you get there!


be happy always!
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replied October 26th, 2012
Experienced User
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
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replied January 13th, 2013
tb cavity
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?
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replied April 30th, 2013
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...
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replied May 7th, 2013
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.
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replied July 12th, 2013
helo tb free its my 9 month of treatment im well but still not as good as before i would like to ask u that the scars on my lungs may affect my my job visa or not even if i got tb free THANKS
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replied July 12th, 2013
Experienced User
First of all, be assured that even if you're not feeling "good as before," your body is going through its healing process.

Recovering from the ill effects of TB takes a long time (5 years in my case).

If we can imagine the damage the TB bacteria caused to our system - the lung tissues, the resulting diminished oxygen supply to our organs, and their snowball effect - it's easy to conclude that we have a lot of recuperation ahead!

Medication has the job of killing the bacteria. Once that's accomplished, we're on our own to help our bodies recover through adequate sleep, rest, and nutrition.

On lung scars showing up in x-rays, as Emi1982 stated, they're there forever.

However, there's a way to address that: obtain your doctors' statement that you've undergone treatment and that the lesion has not grown over a period of time.

This means keeping your x-rays over time to support doctors' statements in case your original doctor is not reachable.

Medical professionals know about TB - they just need to be assured, especially if they'll certify fitness for visa issuance, that you're not infectious, you've undergone treatment, and your healed condition has been stable over a period of time.
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replied July 12th, 2013
thank you so much for the rep can u plz tell me what i have to do for gaining my weight again and secondly do u have lung scars if u have did u have any kind of problem during visa or applyng for a job ? im very much worried aboout all that i dont smoke i dnt eat unhealthy things but still i got this kindly tell me after treatment do i have any chance that my tb tests again positive m very much wooried about my future health ur help will be very aprreciated
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replied August 2nd, 2013
I just turned 23 and was diagnosed with TB 2 weeks ago. I have been in respiratory isolation and am very depressed. I was misdiagnosed several times and have been suffering with TB symptoms for about 9 months already. I just started treatment. I'm supposed to start working in September as I recently graduated from university. I just want to feel better and I am so sick of being sick and having fever, cough, etc. It is even more depressing to know that it takes 4-5 years for a full recovery from what I have read here. Sad
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replied August 17th, 2013
Experienced User
It's hard for healthy people to understand, but for those of us who've suffered and conquered TB, I believe it's not only me who feels that we are, in fact, stronger.

Very few people face death and live to tell about it. TB is such a disease: it's deadly, and the suffering before and during recovery is immense.

But because we have medication, we have that golden chance to live again.

As for a fully recovered TB survivor, I can say that I no longer have the fear of death. And second, I now know how to take care of myself better.

Look at it as life's greatest triathlon. Survive it, and you can survive anything.

I will add that, during recovery, because I was in survival mode, I was forced to think better too. The mind gets really sharper, not to mention that we develop a new, better perspective about life.

So, in a way, it can be a blessing.
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replied August 17th, 2013
TB medication
Hi,

My wife has TB, she takes tablet regularly but some times she misses to take on time, I mean : usually she take at 9.00 but some days she takes at 10 or 10.30. Will it be a problem?

Many thanks in advance
TB care
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replied August 17th, 2013
Experienced User
In my opinion, what's important about the medication regimen is that medication effectiveness is not allowed to diminish to a point where the bacteria wins again.

This suggests that if your wife has had adequate rest and nutrition between doses, she can go beyond a 24-hour cycle and still be ok.

Otherwise, if she lacked rest, her resistance at the 24-hour mark will have been low, and she needs the dose at that time to maintain her fight against the bacteria.

I'm not a doctor, so please look at the above as a "reasoned theory."
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