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Fully Recovered After 5 Years: My TB Story

Hello Everyone,

I thought it would be good for everyone to know, from the very beginning, what the road is like to complete recovery. I have another thread (TB Survivor Report: 3.5 Years...) from which I've drawn feedback and added comments on with this new thread.

So, here goes, a review by phases and how my health stands today.

Year 1:

~I had mild flu-like symptoms that would come and go, and developed a hoarse voice (as if my throat was coated with thin phlegm) that wouldn't go away. My doctor said "you look healthy, it's just probably a minor infection." He prescribed regular antibiotics that would clear 90% of the symptoms but only for a few days.
~I then began to have a fever-like sensation most afternoons, and started coughing with phlegm but no blood streaks. There seemed to be always phlegm in my lungs and I couldn't expel everything. My thinking started to become affected, as I was feeling anxious about my strange condition.
~Thinking that maybe eating and sleeping more can reverse my condition, I started doing this. No changes happened.
~I began coughing very hard and expelling blood-streaked phlegm. I thought it was becoming serious, and at times I felt extremely weak. No weight loss yet.
~Finally, I asked my doctor to prescribe more tests; they consisted of a breath volume analysis and finally a bronchoscopy (I think they flushed my lungs/upper respiratory area with fluid and recovered the specimen-rich fluid). The bronchoscopy revealed that I had active TB.
~I was immediately sent to the local Dept. of Health clinic, which required me to report daily for my medication intake. Determined to survive, I didn't miss a dosage.
~The Dept. of Health in the US, where I live, told me that they'll check everyone at my place of work for any signs of TB infection by me. I knew that my co-workers would eventually know it's me, and so I called for a meeting and announced that I had active TB. Everyone was sympathetic and no negative reaction was ever observed. However some told me that they were worried about infecting their family members if they were carriers. Final results: I didn't infect anyone.
~During my 6-month medication, I felt very little improvement but I was told by my nurse that as early as the 2nd month, the TB bacteria had been eliminated. I concluded that what I was experiencing was the effect of tissues injured by the bacteria, and that with a healthy lifestyle change and patience, I'll probably return to normal.
~On the 4th or 5th month of medication, I decided to start walking for exercise (I was running and biking before having active TB). Doing physical exercise and being under the sun was wonderful - I didn't feel the TB symptoms. But at rest, they were there almost all the time. Realizing this, I tried hard to exercise as often as I could.
~The rest of the 1st year saw little improvement. I was still having afternoon "fever," and was constantly clearing my throat.

Year 2-3:

~Continuing with exercise and sun exposure, and very few late nights from work or social events, I was feeling slow improvement. I still had many symptoms of the first year 50-70% or more of the time: afternoon "fever," clearing of the throat, and feeling of stubborn phlegm in the lungs. However, by the end of year 3, I felt real improvement beginning.

Year 4:

~Halfway between the 3rd and 4th year, I felt confident enough to declare being "98%" free of TB symptoms and so created my first thread (TB Survivor Report: 3.5 Years...). On year 4, I felt I hadn't reached a 100% state of healing. About 2 times a month I'll still have a very mild afternoon fever-like sensation lasting around 1 hour.

Year 5:

~I stopped having the afternoon "fevers." I still clear my throat every now and then, but this I consider normal based on my pre-TB condition. I've continued regular exercise (running mostly), having at least 7 hours of sleep/night, and a nutritious but healthy (low fat, etc.) diet. Physically I feel very good. The biggest gift of my TB experience is that fear of physical death has left me. It's been replaced by a stronger belief in the afterlife. I actually feel released of many anxieties and fears after facing death and conquering it.

I hope somehow the thoughts in this new thread provide comfort and hope for those of you who think they have active TB and for those actually going through or have completed treatment.

The key thoughts I'd like to offer are as follows:

1) TB medication kills the TB bacteria but you will continue to have TB symptoms for a long time because of the tissue damage caused by the bacteria.
2) The job is to heal the damaged tissues (lungs and rest of the body deprived of full oxygenation due to affected lungs).
3) In my case, the healing process consisted of exercise, sun exposure, adequate sleep and rest, and a healthy diet
4) Imagine a day 5 years from the onset of TB; that day when you are again healthy, strong, and normal. Keep that image in your mind. Remind yourself of that day when you feel bad. Even if it's slow, you are in fact recovering!

TBFree
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First Helper TBFree
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replied April 24th, 2014
Thank you TBfree
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replied June 3rd, 2014
Thank you Tbfree so much. How long did you have your cough? How many months, do you remember any back and chest pains? I know you mentioned about headaches and feverish like symptoms. But did you have sweating during the course of the treatment? Coughing? Mucus coming while coughing. When did this whole think stop. When did you start breathing without any difficulty and any pain? Please this will really help me. And also, where u at any point sensitive to smells: such us perfume abs smoke?
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replied June 29th, 2014
Experienced User
Hello Horom,

You're welcome - I'm glad to be sharing my experiences in the hope that it helps alleviate some worry and anxiety.

I'll try to answer your questions here:

1) How long did you have your cough? How many months, do you remember any back and chest pains?
A: My cough stopped about a month after starting treatment. My chest pains (didn't have back pains) - after 2-3 months from start of treatment.

2) But did you have sweating during the course of the treatment?
A: If I remember right, yes, during the first month of treatment.

3) Mucus coming while coughing. When did this whole think stop.
A: Mucus or phlegm - this continued for maybe almost a year but in decreasing quantity. Until now, 5 years after, I still have a phlegm coming up but very little; I observe "normal people" also doing this, so it's possibly normal as if I didn't have TB.

4) When did you start breathing without any difficulty and any pain?
A: I would say after 2 years from start of treatment. Curiously, I didn't have difficulty breathing while running for exercise. It's "at rest" when I feel most the breathing and other related discomforts.

5) And also, where u at any point sensitive to smells: such us perfume abs smoke?
A: I didn't have this sensitivity; I'll venture to say that people with TB may have had the sensitivity prior to the TB condition.

Hope this helps!
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replied July 12th, 2014
Thank you so much for the reply. I have a few more questions for you:
You said your cough stopped after the first month of treatment correct? But did it completely stop? You never coughed afterwords at all? Cause you mentioned that for two years after the treatment, you still had some mucus coming our of your throat. Do you occasionally cough to take the mucus out? The reason I'm asking is that my cough have significantly decreased after three months of the treatment; however, occasionally I still cough here and there maybe once or twice per day, usually dry cough and sometimes it sounds a little wet and sometimes a small amour of mucus comes out. My voice also gets hoarse and my throat hurts sometime, feels like in getting sick but I'm not. It's a weird feeling. It's surprising that you never experienced any back pain my back pain is getting a little better, but overall, my back, my chest, my leaf and even my fingers and feet hurt. Some sort of joint/bone pain. My last ct scan still showed some scarring in progress to get better. My chest X-ray shows the scar. Does your X-ray show clean for now? Or can you still see some scarring and if there is scarring, is it big?
One more question: after recovery, have you gotten sick wit flu, bronchitis or pneumonia? Do you get infections faster now than before?
Sorry for all these questions, I'm very concerned about my health now since it has been 6months already and I still don't feel good
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replied July 12th, 2014
Thank you so much for the reply. I have a few more questions for you:
You said your cough stopped after the first month of treatment correct? But did it completely stop? You never coughed afterwords at all? Cause you mentioned that for two years after the treatment, you still had some mucus coming our of your throat. Do you occasionally cough to take the mucus out? The reason I'm asking is that my cough have significantly decreased after three months of the treatment; however, occasionally I still cough here and there maybe once or twice per day, usually dry cough and sometimes it sounds a little wet and sometimes a small amour of mucus comes out. My voice also gets hoarse and my throat hurts sometime, feels like in getting sick but I'm not. It's a weird feeling. It's surprising that you never experienced any back pain my back pain is getting a little better, but overall, my back, my chest, my leaf and even my fingers and feet hurt. Some sort of joint/bone pain. My last ct scan still showed some scarring in progress to get better. My chest X-ray shows the scar. Does your X-ray show clean for now? Or can you still see some scarring and if there is scarring, is it big?
One more question: after recovery, have you gotten sick wit flu, bronchitis or pneumonia? Do you get infections faster now than before?
Sorry for all these questions, I'm very concerned about my health now since it has been 6months already and I still don't feel good
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replied July 20th, 2014
Experienced User
You're welcome, glad to share my thoughts and experiences.

I think you might be referring to "voluntary" and "involuntary" coughing.

By "involuntary," it's coughing that I couldn't help because there was just too much phlegm/mucus in the lungs. That stopped after the first month, more or less.

The "voluntary" coughing - I didn't do much of this because I could get rid of the phlegm/mucus by clearing the throat. Coughing, I found, wasn't effective for achieving this.

About scars, I didn't have any more x-rays after the last one when the Dept. of Health cleared me. However, I know that the scars are long-term if not permanent. I imagine them to be similar to deep skin scars.

On having the flu and other pulmonary/respiratory ailments, I'm quite sure I had at least one very short flu episode (2 days) and maybe 3 colds during my 5-year recovery period.

That doesn't seem much; it probably has to do with getting more sleep, rest, and exercise after getting TB.

6 months after the start of treatment is a very short time to expect a big recovery, Horom. The improvements - although they'll come - occur extremely slowly. It took me 5 years to feel normal again.

The key is to know what to expect, and what TB has done to our bodies.

Let's note once again that TB, being a fatal condition unless treated, destroys body tissues even before we're fully conscious of it.

It's the reverse form of cancer - while cancer multiplies (albeit harmful) cells, TB destroys them.

Following that theory, recovery from TB requires as much care and patience as does cancer. The big difference is that TB treatment provides a 95%+ chance of recovery while cancer treatment guarantees much less than that.

All that said, it's CRITICAL that we TB survivors have faith that we'll be cured when we receive treatment. That belief is essential because it motivates us to do what's necessary for recovery.

Hope this helps...
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replied December 28th, 2015
Thanks for sharing it has helped me alleviate some of my anxieties
I deel better when i see sun and am out and about.
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