Getting through XDR TB medication

[aivas14]

Hello everyone, I'm 24 year old, last year I was diagnosed with XDR TB.

I was really scared when I saw the survival percentages of this disease - I was sure that I was going to die. First two months I had to spend alone, isolated in the hospital, I still spent here most of my time. Thankfully, after just 1 month of treatment, sputum culture was negative, and now, after 8 months of treatment, my x-ray is completely clean.

However, I feel worse than before treatment. First two weeks of medicine was fine, but then I started to feel stomach ache, nausea, fatigue, and recently - dizziness, which is the most scary for me. Now I'm afraid to take the stairs and every time I close my eyes before sleep, it seems like everything is around is spinning and it makes me even more nauseous. The fact that I was diagnosed with GERD recently does not help swallowing 20 or more pills a day.

The worst thing is that I'm taking last available drugs - there are basically no more options left, and it's still at least 1 year of treatment that is ahead.

Since dizziness is not listed as a common adverse effect for the 4 different antibiotics that I use, I started to think that dizziness and other symptoms means that I have some other condition, that doctors have missed and I feel really scared of that. Weirdly, all blood, liver and heart tests show perfect results. I am strong enough to suffer through it if it's just an adverse effects, but the thought that it might be something else, makes me extremely anxious, which makes things even worse.

I always thought of myself as really optimistic person, but all these bad news made me expect the worst for everything...

[Soul01]

Sounds like you are having a very difficult time. I thought that some medication can cause dizziness but I could be wrong. You have come a long way and your test results indicate that you are doing well.

Can you speak to your doctors about the things that are worrying you do that they can reassure you?

Keep going! You have come a long way.

[Anoshia]

Hey aivas14,

I can understand your situation totally, I am 27 years and diagnosed with XDR-TB few months ago, the treatment is still going on. I had a week old baby when i was diagnosed. I was through really worst time in the begining. Having a week old baby in your arms and such dangerous contagious desease is the worst combo ever.

These medicines have severe side effects and i feel dizziness is one of them.

It took 6 months for me to turn the culture neagtive. But things are better now.

So stay strong and be positive! You are not alone!

[HelenC Partner TB Alert]

Hello aivas14,

I am glad that you have had some good support already from others who have been through a similar ordeal. Though your situation must be overwhelmingly difficult it does sound like you are making good, steady progress and that the battle for you currently is as much mental as physical. Perhaps you can continue your conversations with other patients directly, so that you can get more personal support? Also look to friends and family to motivate you and help you get through the difficult days.

With regards to the dizziness, this is actually quite a common symptom of all TB treatment - though it is always worth telling your doctor or nurse about any side effects you experience. They may be able to help with the gastric symptoms too - perhaps prescribing other medication to help or looking for other ways to help you take in your medication. We know from talking to other patients that regular, small meals can help - or taking in bland foods that are also calorie and protein rich. This helps line your stomach and also ensures your body can rebuild its strength.

I hope this helps and wish you well in the coming months as you recover.

Best wishes,

Helen

[askessing]

Hi, I'm so sorry you are going through so much worry. I have pulmonary tb so not the same as you. I think the stress and worry you've been through has left you with anxiety. Which is understandable. I just wanted to say that since I've been diagnosed (4 weeks ago) with TB I have continuously been worried that I have another problem that they have missed because they're focusing on the TB. Every ache and pain I have, I worry. However as the days and weeks tick by I find myself worrying a little less. I'm sure you are ok, but I think if you have an understanding doctor you should express your concerns. I'm sure you are fine - there are so many side effects that the medications can cause and you're on a lot of medication. I have read about dizziness being one of them so rest assured about that. I wonder if the doctor has any suggestions about food you could eat or something small that may make a difference? Good luck and keep us posted.

[askessing]

Also are you taking any probiotics or vitamin C? I would have thought that the doctors would have suggested that and if they haven't I would look into getting the best quality you can afford of both.

[aivas14]

Thank you very much for your answers!

I feel better this week. Doctor said that dizziness might be due to the combination of all the pills that I'm taking. I also take some heart medication, which might also add something into the mix.

askessing , I also have pulmonary TB, the problem with mine is that it's resistant to all of the first line drugs and most of the second line. Also, I think you might be right that lots of side effects are amplified by my own thoughts. I am the worrying type of person. I wish you all the best in your treatment journey!