Active Tb

[greg28a]

Hello all, I am writing to share my story. I am a doctor myself as well.

My symptoms started 6 months ago. I felt difficulty in breathing while climbing stairs. At this time I consulted a doctor, had an xray which mistakenly was thought to be normal and was started on bronchodilators for query exercise induced asthma. The doctor kept on prescribing the bronchodilator. I felt slightly better but not good. Then I decided to consult another doctor who did not examine me at all (only asked for my medical history) and said that he agrees with the other doctor. He asked me to continue the inhaler and undergo spirometry in a month time. In the meantime, I was working in a covid clinic (imagine if i had got covid as well!) and was vaccinated for covid.

I followed his advice and returned for a spirometry which was abnormal (abnormal diffusion). Following this, I was asked to take a chest CT scan which had evidence of pulmonary infiltrations and then bronchoscopy to take biopsy and sample for culture. Then I was referred to the Tb clinic. The doctor there told me that the first xray was abnormal and that i didnt have to undergo bronchoscopy for the diagnose. Also the corticosteroid in the inhalers just helped the mycobacterium spread even more.

I am 32 and diagnosed with active pulmonary tb.

Also had pericarditis at this time.

My mantoux test was positive at 17mm.

My husband even though we live together was negative.

I take my medication for 2 months now (isoniazide, rifampicin, ethbutol and pyrazinamide). My mental health is not good. I have also stopped working. I try to keep myself occupied with studying. Some days are good and some are bad. I think I have developed agoraphobia as well. Regarding the side effects, these are mild. Some gastrointestinal side effects (bloating), dysosmia (feeling that something is burning after taking pyrazinamide) and polyarthralgia. I try to stay strong and believe that everything will get better.

Please stay strong and stick to your treatment.

I hate my meds, i always ask why me? But you know what? We are humans. We breathe. As simple as that. Stay strong and take care. This shall pass.

[dino10]

Strength to you greg28a. You are a doctor so you are much not knowledgeable than me. So just wishing you to stay strong.

Also thank you so much for the replies on my threads. I literally cried to see meaningful information on what might have happened to me. Please let me know if you need any information from me or want to contact me personally. I'll be more than happy to help you

[greg28a in reply to dino10]

I am really glad I could help even a little bit. Stay strong. If you need to discuss this further you can contact me.

[dino10 in reply to greg28a]

I actually look forward to contacting you. I know I'll have a struggle even after the treatment ends. It feels good to know that there is someone who understands the pain.

[greg28a in reply to dino10]

Stay strong. You have overcome the most difficult part. Feel free to contact me

[dino10 in reply to greg28a]

Thank you so much Greg ! How can I contact you if you are not available on the forum?

[greg28a in reply to dino10]

I have texted you

[SN1987]

I pretty much went through similar stuff where they thought I had mild asthma then thought chest infection so treated me for that which felt better but cough wouldn’t go away. Then I was told it was covid… after 3 negative test they still thought it was false negative covid. I saw 3 gps within the space of 4 months and the 3rd one sent me for a X-ray and as soon as it came back and my symptoms got worse she told me to stop working. Still the diagnosis was slow waiting for results of CT and bronchoscopy… they couldn’t just start me on meds only because there is cavitation on X-ray. Needed more evidence…this meant my condition got worse and I was admitted to hospital. I have been off sick from work since mid January. Being a nurse my work is my life. Forcing my self to slow down and take a break was really difficult. I am really into fitness but can’t really workout as much as I used to. I now go for walks, gentle exercises and yoga. I also recommend breathing exercises. Having a routine is so important mentally. Your mind is your worst enemy.. I would get so down and think how did I get this and waste so much time just thinking how, why me, what if… eventually I came to terms with it and now think how can I get stronger from this. I am focusing on the future. I am 33 and I am not going to let this take control of rest of my life I will make the most of the time I have off and do the things I haven’t been able to do ( learn how to cook, read, explore nature) appreciate the little things. I have just past my 2 month treatment milestone... stopped Voractiv at 2 months and now on Rifampicin and Isoniazid.

You just have to believe that you will get stronger (and I am by the day) and keep your mind occupied. Yes you will have set backs but that is temporary. Must do everything you can to give your body the best chance to fight ie taking meds and getting enough rest. This has also got me closer to my faith…. I believe god is testing me and has given me the strength to deal with whatever comes my way to overcome it.

[greg28a in reply to SN1987]

Thank you for your reply. You really gave me courage. Stay strong. You are on the right path.

It is unbelievable how covid has come to “cover” all the other diagnoses. The fact that almost the same story as mine keeps on happening means that we need to raise awareness among people. When it comes to difficulty in breathing, it is not always asthma or covid. Tb is real and the rates probably are higher than the ones reported. We need to get diagnosed as early as possible. It is unbelievable that it takes so long to diagnose for an infection that has been well studied. Cheap and accurate tests such as mantoux need to be easy to get and first to ask.

[SN1987]

I am glad I can help…somehow helping others is helping me as well so thank you. What people say on here is so relatable and I normally don’t do these posts. I know what you mean it’s outrageous that diagnosis is so late and Tb is not one of the first things thought about. Don’t know what we can do about it… Keep talking and let’s give each other the strength to pull through this

[greg28a in reply to SN1987]

Sure! So glad to have met you! Feel free to contact me anytime

[Doossa]

Hello greg28a

Sorry you have been treated this way. Was diagnosed with tummy TB in May and was started on the medication you listed. Very toxic. I had my bad and good days, luckily I was able to complete my treatment in November last year

I was lucky to be shielded and this was during the height of the pandemic. Oh I forgot to say I was also undergoing treatment for coilitis and mental state was bad. I had to refer myself to IAPT and luckily I am a Band 7 nurse I was attended to quickly

You will get there and do t lose hope. Eat sleep and I even lost about 8kg in weight then

Love and lights towards you😂

[greg28a in reply to Doossa]

Thank you for your reply. I am so glad you completed your treatment and everything went well. I wish you all the best!

[bambam1234]

I feel the same...very low and not wanting to go outside to meet anyone. Although I think that with the Covid restrictions this might not be a bad thing. I’m in my third week of treatment and gag a little when taking all the tablets on an empty stomach. But I will see it through as you will, and we will feel better at the end of it! It’s hard staying positive, but essential that we do.

[Soul01]

Greg, you must feel very frustrated by the delays and unnecessary bronchoscopy. The whole mix of emotions you are feeling is normal for people with TB. However good the TB team is, it is still very much all about taking the meds. I had a rocky start due to having to change meds, deranged LFTs, etc and whilst I ended up under the care of a great team and was treated with kindness, no one ever asked about my mental health.

There is a massive gap in caring for patients‘ mental health.

Please feel to DM if it helps. 5 month delay from illness to start of treatment. Had to pay for my own tests to get the diagnosis!! VATS procedure. 14 months from start of meds to completion due to not being able to take the standard 4.

Out the other side now. Discharged last summer.

[greg28a in reply to Soul01]

Exactly! There is indeed a massive gap. Thank you so much for sharing your story. I an glad that you are over this.

[SN1987]

Hey guys.. just wondering if any of you experienced brain fog as a side effect or is this just me now after TB? If you are on the other side of the treatment can you advice if any of these side effects still remain after treatment ends? Also does your exercise tolerance get better?

[Chhichhore]

I m mdr patients and only 5 month is left to complete my treatment from 24 month. Now i have side effects in my ear, that is ringing. What should i do now. And when inhale or exhale air loudly my chest start giving some sound. Although my weight is gaining, i play, whai should i do now. Pls help me

[greg28a in reply to Chhichhore]

When inhaling - exhaling, wheezing sounds may be audible because of the inflammation/narrowing of the airways. Regarding the ear ringing, please make sure to discuss it with your doctor as it could be a transient side effect of your medication.

[Chhichhore in reply to greg28a]

I always sneeze and water comes from my nose is this serious problem

[greg28a in reply to Chhichhore]

Please make sure you get examined by a doctor as this can’t be answered through a blog.

[Chhichhore in reply to greg28a]

Yesterday i told about my inhaling exhaling problem. I was good in 20 months of treatment, 3 - 4 days i continously played cricket, now blood is coming. I afraiding that my mdr treatment might failed. Please help me, i am loosing my hope, i am taking my medicine continuously

[greg28a in reply to Chhichhore]

Do not lose your hope. This could be just because of bronchiectasis. It doesnt mean your treatment has failed. Please contact your doctor

[Hidden]

Hello Greg28a...... May I ask, are you in the UK? It seems incredible and of course unacceptable that in some parts of the UK there are very efficient and knowledgeable research units for TB and yet there are many areas in the UK where the majority of GP's and specialist doctors not involved with TB who do not have the slightest experience of TB nore do they seem to want to have any knowledge of it.The vast majority of doctors thought that TB had 'gone away' and it was only the migrators

from countries to the UK who brought the bacteria in with them.

Any one looking at the 'advice' given out regarding screening or in other words trying to diagnose TB never mention that individuals such as myself who contracted TB when I was 5 or 6 years of age are completely off the radar.

This is surprising and shows a lack of intelligence among those who we would think have more kokum. Tom Jones and Ringo Star are but a fraction of those who contracted TB after the war years when our dads and uncles brought it home.

If a person is partially resistant to tuberculosis the task of getting any doctor to listen to symptoms can be futile. One lovely lady GP agreed when I asked, is it down to experience ? She said basically it is down to experience in the individual doctor. That was 2001 and I really do hope that all doctors educate themselves in TB enough to be able to refer that patient as soon as they suspect TB. That bacteria is the most illusive one and insidious as one TB specialist calls it is absolutely correct 'labelling' for it.

It is heartening to see shorter antibiotic regimes are now in progress and are being researched .

The Leicestershire face mask sounds hopeful in detecting TB and I suspect and hope it will not be long before the Actiphage blood test soon becomes available and not just for cattle.

Best wishes and hope you get well soon.

[Thearia]

hello! I am sorry you went through this. I hope you are fine now. My husband haa active tb and my son is taking izoniazid for latent tb. I only made an x ray and the doctors do not want ro make any additional test. How did you find out thet you husband is negative? I am from Romania. Than you!