Does TB only affect the lungs? Which other parts of the body can the bacteria affect?

Tuberculosis can affect any part of body. But, it can be categorized in two broad categories: 

1. Pulmonary TB (the one which impacts lungs). This type is Infectious to others through act of coughing/sneezing and is more common.

2. Extra-Pulmonary TB or EPTB (which impacts other body parts). This type is not infectious to others and is relatively less common.

In most cases the person gets infected by simple act of breathing around a person with active disease. Once inside body it can spread through blood or lymphatic system to different organs/ body parts (e.g. Lymph node, Brain, Spine, Bone, etc). Sometimes TB can be disseminated and can involve multiple organs at same time.

What is the most common symptom to know its TB?

Some typical symptoms of pulmonary TB include: low fever for a prolonged duration (3-4 hours) and especially in the evening; weight loss; loss of appetite; prolonged cough (for more than two weeks); coughing blood; night sweats. Apart from the symptoms mentioned above, symptoms for extra-pulmonary TB (EPTB) include severe localized pain (area which may be affected by EPTB). It is advised that family members wear masks all the time.

Am I diagnosed correctly and been given the right medication?

Every condition is unique and would require a medically qualified individual to confirm the diagnosis and verify the treatment. However, if drug sensitivity testing (DST) is conducted, it would be clearer which medicines will work, and which will not. DST should be done mandatorily! Moreover, if you wish to take a second opinion for mental satisfaction, never hesitate to take one from a qualified specialist.

What tests are to be done to confirm the diagnosis?

Basic sputum tests, x-ray, and drug sensitivity tests (DST) are performed to confirm the diagnosis and treatment status. In other cases, CT, Sonography, FNAC etc. might be required.

How long will I have to take the treatment? I am already taking medicines for a year or so.

TB treatment is determined by the kind of TB you have. It can vary from a period of 6 months to 2 years or more. TB treatment should be monitored by a doctor and can only be stopped once the doctor gives approval after all the tests have been done. If one stops the treatment prior to a doctor’s approval, it can lead to complications. For treatment, caution must be exercised and all decisions must be made with the doctors’ permission.

What is the difference in types of TB? Why am I given diff meds now and diff meds before?

The TB bacteria can manifest in different forms. If the bacterium attacks the lungs it is called pulmonary TB and if it attacks other body parts (spleen, spine, stomach etc.) it is known as extra-pulmonary TB (EPTB). Both the forms of TB can also manifest as drug –resistant. The variation in the prescription of medication is dependent on the kind of TB you have, degree of drug-resistance, as well as the phase of treatment you may be in.

Are injections necessary?

Injectables are an integral part of second line TB treatment when a patient fails the first line treatment, i.e., treatment for multidrug resistant TB (MDR-TB). As one progress from one form of drug-resistance to another, the treatment changes and injectables are included to cure severe forms of drug-resistance. 

Is it completely curable or will I have to keep coming back after my treatment is done?

TB is completely curable provided- the disease is diagnosed accurately; appropriate treatment is administered and one completes the course of the treatment. One should visit the designated government centres to avail free diagnosis and treatment. Once declared TB free, one can lead a normal life coupled with a healthy, nutritious diet. 

How do I get my medicines for free? My doc is in Delhi, and I'm from Lucknow?

You will have to enrol yourself in TB program at any government hospital in Lucknow. You can get your medicines free from there. There is a government helpline as well that you can call for any queries. 

How does the spacing for meds happen? Is it different for different conditions?

Spacing between medicines is different for different conditions. It also varies depending upon the dosage and type of medicine that you are consuming.​ You doctor is best suited to advise you on it

What side effects will the medicines cause?

TB medicines and especially drug-resistant TB medicines cause a variety of side effects. These include- nausea, severe headaches and tiredness. These depend on the medication one is taking. However, these side-effects can be addressed, if you speak to the doctor about it. In more severe forms of TB, the side effects can include -, partial blindness, hearing impairment, ocular complaints as well as impact on the heart. This, however, is restricted to the most extreme cases only. In all cases, your effort should be to be vigilant and careful. You must create a log of side effects so that you can monitor these and report these to the doctor when you visit him/her.

What do I do when I suffer from side effects like vomiting and neuropathy?

Vomiting is a very common effect and causes a lot of weakness. Adequate hydration along with a balanced diet is essential to keep your body stable. Not just that, but small things like sitting straight after meals, shorter meals every 2 hours and using antacid or ENO after taking your doctor’s permission might also prove helpful.

Neuropathy is a side effect that needs to be reported to the doctor immediately to take necessary steps. Loss of sensation, reduced vision, difficulty in hearing etc should be reported at the earliest to the doctor. In all cases, your effort should be to be vigilant and careful. You must create a log of side effects so that you can monitor these and report these to the doctor when you go and see her.

Can't keep medicines down because of vomiting, so should I take the dose again?

If vomiting happens after the medicine is taken, it might not be necessary. But if it happens during intake, or if the medicine comes out with the vomiting, most likely it would have to be consumed again. It is best to check with the doctor for this, and also consider asking if tablets can be crushed and consumed if needed.

How do I know if the side effects have started, any tests to be done from time to time?

Most side effects are minor and transient in nature and need no change. But, sometimes major side effects like recurrent vomiting, vision/hearing problem, neuropathy, severe drug allergies, etc can occur. It needs to be reported to the doctor and correctional measures should be taken.

Ideally routine investigations like CBC, Liver function test, Kidney function test, Blood sugar, Thyroid levels, etc should be done and repeated monthly or on doctor's order. In some cases specialized tests like Audiometry, Vision test, Retina check, etc is needed to be done too.

Repeating such investigations regularly can detect most adverse effects at early stages and it enables your doctor to take necessary correctional measures.

When will the vomiting and dizziness go away?

This may vary by body type and is dependent on the time taken by the body to get attuned to the medicines. However, it’s important to be patient and recognize that these side-effects do eventually disappear. Do keep your doctor updated on the side-effects such that remedial action can be taken, if required.

How did you cope up with side effects? Specially of reduced hearing and partial blindness? How did you know it was starting?

A positive outlook towards life helped me immensely. I assured myself that side effects will go away soon and I just have to bear it for a few days. .Actually I was out of options- I knew that I had to get well, I will have to battle the effects. However, I did tell my doctor about it and saw specialist too to mitigate any doubts. 

Can any of the TB medicines cause depression? If so, how to deal with it?

Depression is a common side-effect of TB medication. One must be prepared for it. This is only possible through counseling which entails preparing the patient for the side effects of the medicines as well as providing support all through the treatment. Additionally, the patient must cooperate with the counselor and keep him/her up bridged of all side-effects. This will put in place a clear communication channel between the counselor and the patient which is key to effective therapy and in turn TB treatment. If your doctor is unable to provide counseling please contact us with your questions and queries.

Will the buzzing/ringing sound in my ear continue for life?

Spot the lack of hearing in time/ get tested for it every 2-3 months depending on your doctor’s advice. Be aware such that any reduction in hearing should be brought to the doctor’s notice immediately.

Most women ask if they would be able to conceive after the completion of treatment?

Conception is dependent on a variety of factors including hormonal balance and health of uterus, amongst others. The most suitable and conclusive advice for this can come from your medical practitioner after tests and adequate check ups. In some cases there is a possibility that one may not be able to conceive after TB (especially if TB affects the uterus), however, with technology advancing in leaps and bounds, a number of methods have surfaced which can help in conceiving. 

Should I maintain a high-protein diet even AFTER completion of treatment?

Yes, you should maintain a balanced, protein enriched diet and healthy lifestyle even after your treatment ends.

Since pulmonary TB is communicable, what precautions should my family members take?

The family members must wear masks at all times. Cross ventilation and sunlight must be ensured to cut down on transmission. Everyone including the patient must consume a healthy diet to maintain immunity. This way the patient can recover faster and the family can avoid getting infected.

Should we wear a mask in order to not infect anyone?

If your doctor has declared you to be non-infectious, there is no need to wear a mask. However since, TB takes a deep toll on the immune system, even if you are non-infectious, continue to wear masks as a way to protect yourself. Many believe masks lead to loss of self-confidence and of course stigma. Needless to say that if you are still being treated and are infectious, wear masks at all times in order to not infect others.

How will TB affect my physical intimacy with my partner if one of us has TB?

Physical intimacy is different for everyone, but it is the nature of the act as well as the nature of diagnosis to determine if it is safe for you and your partner. Kissing, for example, may lead to infection/transmission more commonly in the case of pulmonary TB. Moreover,

While sexual transmission of TB is rare, it has been noted considerably in medical literature. The chances of transmission are further reduced if the infected person is on treatment and the partner has a strong immunity. If sexual transmission occurs, the disease may affect reproductive organs and lead to reproductive problems later. Individuals with genital tuberculosis might transmit the disease through sexual contact. Before you engage in any such activity, it is best you consult a doctor and discuss your options and doubts with them thoroughly.

What diet should I follow?

A balanced diet comprising an optimum mix of protein, carbohydrates is essential to sustain TB treatment. Additionally, green leafy vegetables, eggs, bananas, vitamins and minerals help boost the immune system.  Its important to make a diet chart if you can and ask for your doctor’s inputs so that you can monitor your diet.

What diet should I follow?

A balanced diet comprising an optimum mix of protein, carbohydrates is essential to sustain TB treatment. Additionally, green leafy vegetables, eggs, bananas, vitamins and minerals help boost the immune system. It’s important to make a diet chart if you can and ask for your doctor’s inputs so that you can monitor your diet.

Will I need a surgery?

The decision of a surgery rests with the physician. Typically, surgery is considered as a last resort. 

What exercises did you do? How did it help you?

I was almost bed ridden so couldn't exercise much. But one should opt for strolls or pranayaam. The process to recovery is slow but one has to realise that exercise is critical once the recovery begins. This helps build immunity and also keeps your spirits up.

When were you able to ambulate and work?

My case was very difficult so it took years for me to return to my normal routine. However, this is something you can eventually achieve- the key lies in having a positive attitude A lot of people try and work part time and then slowly full-time to ensure that they keep up with careers. Another useful way is to continue reading and updating your skills while you cannot work. This is very important.

How do I find work? My office says I can't do anymore work from home because it’s been quite some time.

You can request your doctor to write a letter to your organisation explaining your condition. If you do not want that, then you can look for new part time employment. 

Does TB put a full stop to one’s dreams and ambitions? Is there life after TB?

TB is a perfectly curable disease. The trick lies in early, quick and accurate diagnosis coupled with uninterrupted treatment. If either of these components are not adhered to, TB can be fatal. TB affected individuals can achieve anything post treatment.

Private or govt: Which care is better?

While both entities offer TB services, it is the public sector (government) which provides free diagnosis and treatment services. The challenge with the private sector is that, it offers erratic prescription practices as well as inaccurate diagnostic services which perpetuate the transmission of drug-resistant TB. However, to its advantage, the private sector offers confidentiality, hospitality as well as proximity. The vice-versa stands true for the government services. 

How do I enroll for govt’s TB programme?

Call the govt.'s toll free helpline to ask details about enrolling in govt. TB program, or go to the nearest government dispensary to ask for the same. Alternatively, you can go and register at a local government hospital. If you would like confidentiality, please ensure that the drugs are delivered by the DOTS provider at your home.

Will the disease affect my chances of marriage?

The deep seated stigma associated with TB is a significant issue. The disease does not affect the chances of your marriage, at all. It is all in the mind of the people who interact with you. Do refer to  Deepti’s story  and witness how one can overcome these issues.

Is there a reason to panic if the menstruation cycles becomes irregular or stops?

Disruption in menstrual cycle is dependent on a lot of factors including hormonal imbalance. If the delay in periods is persistent, then one must consult the doctor before going ahead with any medication. Self-medication is strongly discouraged as drug interaction may lead to further damage. Always inform your doctor before you decide to pop that pill. 

I'm waiting for my fever to go away, when will I be able to have enough energy to walk and do my job?

It takes time for one’s body to adjust to the medicine. As soon as medicines start working the severity of symptoms reduces and one starts to feel hungry again and fever will also subside. However, one needs to give time for the treatment to show affect. One starts to feel better but treatment needs to be completed, irrespective of how one feels. It’s important to keep one busy and upbeat. Think positive, express gratitude for small joys. The road to recovery becomes less stressful.