My first encounter with TB, cervical lymphaditis tuberculosis....PART ONE

[pratyaya_23]

We must accept finite disappointment, but never lose infinite hope.

NOTE: THIS IS ENTIRELY MY PERSONAL EXPERIENCE AND LEARNING FROM MY ENCOUNTER WITH TB. THE SOLUTIONS I MENTIONED CAN’T BE TAKEN AS MEDICALLY APPROVED.

I’m writing with only one honest intention, that anyone struggling with TB may get emotional support, strength and motivation that one can fight with it.

Last year, It was those last few months of year, when world is in festive mood, celebrating different festivals. But in all this festivities, I was busy in finding out the medical reason behind swollen lymph node in my neck, first it was suspected to be cancer, leukemia but biopsy done and it over ruled the possibilty of cancer, I got relieved a bit.

Then next diagnosis came up is TB (Tuberculosis cervical lymphaditis). I wasn’t at all prepared for this news. I only heard that during TB you cough a lot, but I wasnt coughing and thats why was in complete denial of this diagnosis. Moreover, I was fully convinced or say my mind was pre-conditioned enough to believe that doctor was suspecting TB, just because of me being Asian ( as its common in Asia). Anyways, it doesnt matter what I think, reality was that I had been detected with TB and its not lungs related infact with lymphatic nodes. TB is being confirmed through blood tests and biopsy. After being confirmed, the medication course started. I started my medicines for it but didn’t accept my diagnosis .

I have other pre-existing medical conditions, but unfortunately doctors didn’t go through them before starting medicine. I was being told about possible side effects( only the common side effects) and unfortunately most of the common side effects mentioned to me , I already have ( thanx to my existing chronic medical conditions), which means possibility of flaring up of existing medical issues.

I was being told, I might start experiencing side effects after around month of medication but in my case just after 2 doses, my body start showing side effects but as per doctors, it is not possible or rare possibility but my reality was I started experiencing side effects and doctors have no answer for it. But as patient, I always believe that if something is rare, it doesnt mean it don’t exist, so I cant buy this idea of doctors.

Anyways, now the real struggle starts. Some of side effects I experienced were : excessive sweating, like I fully get drenched, my clothes got wet, breathlessness, so very tired, weak, fatigued that can’t stand even for 5 minutes. I started losing weight at rocket speed. I lost my appetite, there were many food items which I start hating, my taste buds were extremely bad, a severely heavy metallic taste always in my mouth. Its so bad that I was struggling to tolerate it. As I have generalised panic disorder, and with the TB medication it worsened. My anxiety was making things more difficult for me.

Whenever I discussed these symptoms with my doctor ,he dont have answers for it. This drama goes for almost a month, there was no help at all.

So one day, I said to myself lets accept it and instead of denying it I must try to manage as much as possible of side effects. Remember: ACCEPTANCE is the first step in dealing with any disease. I decided to control my anxiety first, so here my regular GP and my psychologist came on board on my this journey /fight against TB, with their help increased dose of medicine for anxiety and regular sessions with psychologist , I started managing my anxiety issue.

I started reading about TB , joined few online groups of people having TB to get emotional support and to know their experiences and how they deal with it. After anxiety, I chose to manage metallic taste so that I can have atleast one meal with taste( my appetite reduced to one meal a day only).

I started using plastic as much as I can, like I started using plastic plates, bowls, spoon, glass, water-bottles. I ate 2-3 seeds of black pepper before eating food or peppermint, it helps taste buds to work.I started using plain toothpaste ( I generally use maxfresh or mint taste pastes). Though slowly but it helps me in managing metallic taste.

Secondly, I make sure that whenever I eat food it must be freshly made, nothing reheated leftover food from refrigerator, no spices in food or pickles. I dont eat fast foods like pizza, burgers, chips etc. I eat mindfully and start avoiding food items which cause nausea and vomiting. Dairy products caused problem to me so I stopped using them.

I increased the intake of fluids, juices and coconut water ( I couldn’t drink a glass in one go, so instead I keep on sipping whole day). Tea and coffee made me nauseated and uneasy so I stopped its intake completely. It took me almost 2 months to get rid of metallic taste to great extent.

Next thing, I noticed that after having dose of TB medication I started feeling nausea and vomiting so I started eating any biscuit or chunk of banana bread with medicine with juice instead of water, it helps me in managing nausea and vomiting most of the days.

The other side effect is IBS ( irritable bowel syndrome) and because I already have this issue so it get little more worse. For acute gastritis, I used to take 1-2 teaspoons of apple cider vinegar mixed with water, it gives me immediate relief from gastritis but later on it causes nausea and vomiting, but I found it better than acute gastritis.

The other problem I faced is that all my pre-existing medical conditions flared up, it caused tingling and numbness in hands and feet, joint pains. I got disturbed periods.

Almost 4 months were very very tough for me, last 2 months were not easy but better than first 4 months. I completed 6 months medication course and I’m now fully recovered from TB.

On lighter note, I must admit there was one positive side effect of this disease for me was, I enjoyed almost 12kgs weightloss, fit into my old clothes 😬☺️😉😉… I feel its sometimes helpful to find out something positivity from otherwise overall negative scenario…. humour should be intact😁😂😂👍👍.....pratyaya singh #tuberculosis #cervical lymphaditis #disease #fighting disease #Acceptance #being strong #lifelessons #life experiences

...... contd

[HelenC Partner TB Alert]

Thanks for sharing your experiences. Like so many I have heard, it sounds like this has been a very difficult time for you. You have shared some great insights on tips to support your appetite and counter nausea though. Hopefully these will help others too.

[Premika]

thankyou for this, i also recently got diagnosed with this! Just the fact that the doctor mentioned biopsy was enough for me to get scared.

My family has been so supportive there are times where i feel like i don’t deserve them. The side effects have been tough but the thing is i can’t lose hope. For my sake and the sake of my family. Can’t imagine who will annoy them if not me. This is what i keep on reminding myself whenever i feel down or don’t feel like taking medication or after multiple episodes of nausea. This is tough and i have to push through this.