Lack of info and shared experiences for those on TB treatment

Does anyone who is living with TB and it's vile chemotherapy treatmentnet feel that there is a lack of support and chat forums to share experiences? I have gone through five months of treatment and experienced an array of side effects and symptoms that I wasn't really warned about. I still have 3 months to go... There is very little empathy for the psychological and social effects that TB plays in our lives and wonder if others have experienced the same and how you may have dealt with it.

I am a health professional myself and am seeing things from the other side of the fence!

12 Replies

oldestnewest
  • I had ileo-caecal TB when I was 27 - and spent 22 weeks in hospital having several operations as well. Had the complication of a TB abscess draining from the bowel through laperotomy wound. They also found Crohns in the ascending colon when they finally did a hemi-colectomy.

    I am now 66 and I can say I am at last feeling well. I remember with horror how I felt with the chemo - and mine was for over a year. I had two young children of 3 and 5 and a husband who was a sports fanatic who played at a high level and just did NOT do unwellness !! After 25 years he became my ex !!

    I had absolutely no support from anyone - just kept taking the ghastly tablets. The only advice I can give is that from the age of 27 onwards I always felt tired and under-par and I blamed everything on having had TB. Just did not know what it was like to be brimming with energy.

    When I retired here to Crete in 2004 it was discovered I had Hashimotos - Auto-Immune Disease of the Thyroid. It has been a long journey but I think I am better than ever. So do not do what I did and blame everything on the TB of the past - follow your instnicts - and chase everything. I could have done with feeling this well earlier in my life.

    Some chemo unbalances the body - and thyroid testing in most countries is in adequate. Just testing the TSH is not enough. Check out the Thyroid forum on Health Unlocked.

    Check out your vitamin levels - especially VitD as there is a link with low D and TB. Again there is loads of information on the web with videos on You Tube. B12 and VitD need to be HIGH in the range. the only treatment in the old days was to wheel TB patients outside so they could benefit from the VitD from the sun ! Also check out your Iron Folates and Ferritin. Should help you to feel better. VitC too !

    If you need more thoughts do be in touch.....take good care and have lots of rest....and keep looking to the future when you will feel better. I didn't know about the importance of supplements in my 20's - thought good diet was enough.

  • Hi Marz,

    Thank you for sharing your story about the TB you experienced in your twenties and for the support and advice you offer to people currently affected by TB. Your experience sounds dreadful and I'm sorry that you had such long-lasting health impacts. I was unsure from your story whether you have been told that the TB treatment - which is sometimes referred to as chemotherapy - was behind you later thyroid problems, or it you received chemotherapy for something else?

    I work for TB Alert, we are always looking for people's TB stories so that we cn use them to help raise awareness among others - perhaps through the media, on our website or through other channels. If you would be interested in sharing your story, please drop me an email: helen.clegg@tbalert.org

    best wishes,

    Helen

  • Thanks for your advice Marz- i have as good a diet as I can at the moment and am using nutritional supplement drinks with extra vitamins and minerals and am on pyridoxine B6. Vit D was high in the summer so should see me through.

    Sounds like you had an awful time and probably made worse because of lack of social support. I had to get my dad to look after me as he was retired he was the only one who was able- I lost my independence- couldn't leave the house without being pushed in a wheelchair for first two months. I am improving now and wouldn't have made the recovery i have had it not been for family and friends and my partner. But I never expected to feel so ill. Was basically told take these drugs and you'll feel better and be back at work in a few weeks. What a joke!

    I am glad life is better for you and that your health has finally been put right. Not a bad place to be with better health- I love Crete.

  • Mel73,

    Thank you for sharing your story about your current TB treatment, and the lack of support that you are receiving. The charity I work for, TB Alert, that set up this site, is aware that treatment support is one of the most important aspects of TB care. We know that TB treatment is long and often arduous, and we understand the importance of treatment completion. One of our key areas of work is to provide information and support for people at risk of TB and people affected by TB: we do this through this site, through our TB Action Group (TBAG) and through our range of clinical information leaflets: tbalert.org/resources/clini... You might be particularly interested in TBAG. TBAG is a UK based network of people that have been affected by TB. Members provide peer support for others undergoing the TB journey, and also share their stories to advocate for improved TB services. If you would like to be put in touch with a TBAG member, for advice and support, please write to me at: helen.clegg@tbalert.org. In time, perhaps you would also like to share your story to raise awareness among others?

  • Hello HelenC, 

    I was wondering if you are still active on this site, as well as in TB support?  I was diagnosed about three weeks ago with TB.  I would be happy to share my story and I would be VERY happy to hear the stories of others--particularly w/ regards to side effects of the medication.  I have had adverse side effects since I started taking the 4-drug combo. And, while I don't think any of the side effects are dangerous--they can be debilitating on a day-to-day basis.  

  • Hi Helen

    thanks for your reply. I have had a look at TBAG and am awaiting approval of my membership??? for some days now. The site does not appear to have any recent activity and I may be wrong but think it has moved to Facebook. I do not use and won't use facebook.

    I feel that there is so much we can gain and learn from people's experiences like Marz's that may make our journey's smoother.

    In my experience as a health professional for other patient groups there seems to be much more interactive experience sharing forum's and not everyone wants to use Facebook!

    A lot of the patient info and resources focus on what is TB, the treatment, taking the meds and possible side effects, (and some of those are limited) BUT not on the social and psychological issues that are hard to deal with. An article by another health professional in BMJ last month summarised this well and something like that would be so beneficial available in the wider domain for everyone to read.

    Please point me in the right direction though if you feel I have missed what i am looking for...

  • Hello again Mel73,

    My colleague who facilitates TBAG has been on leave, but she is back now. I am sure she will be in contact soon. We are in the process of moving the TBAG webportal over to this HealthUnlocked platform, which is why you may not have seen much activity on the TBAG website of late.

    Thank you for your comments on the lack of resources for overcoming the social and psychological aspects of TB - this is a valuable insight and something that TBAG and TB Alert should consider under patient support work. I will dig out the BMJ article you mention and ensure this issue is raised with the appropriate staff.

    Best wishes,

    Helen

  • Hi Mel73, you posted this years ago, so I doubt you will see my post now!  I was diagnosed w/ TB about 3 weeks ago.  And yes, I am feeling that sense of loneliness--particularly w/ regards to my reaction to the medication. I cannot believe how little information and support there is out there!!  I think it's because TB is such a rare disease in many parts of the world. . . .

     I hope you are feelings better now. . . . and if you have any advice for those of us on the other side, I would be love to hear it!  Also, generally, I would love to hear about your life post-treatment. 

  • MSJS sorry to hear you're having a bad time with TB. It affects people in different ways... It knocked me off my feet & was unable to work or function on a daily basis for the duration of my treatment. I lost so much weight & became depressed which wasn't diagnosed till end of treatment. I'm still on antidepressants. I'm afraid to say my life has never been quite the same. It's nearly 4 years (3 years since finishing treatment) & initially I struggled to get back to full time work & made myself ill pushing myself. Had constant chest infections & continued to have a cough. After more than 2 years the reality hit & realised my health was more important & so sold up & left the city, my job & career & moved to the coast for fresh air & semi retirement. I'm finally starting to get my health & life back & looking forward to weaning off the antidepressants. 

    As I said everyone's experience is different & will depend on the support from your TB team, family & friends. You certainly realise who are real rocks in your life when you're going through it.

    I wish you well. The important thing is however rough you feel that you take your meds and speak to your team & GP for counselling /group support. 

  • Hi MSJS,

    I'm sorry to hear that you are ill with TB and feeling lonely and unsupported. TB can be a very isolating experience - but you are not alone! Thank you for replying Mel73, it's great that you still want to help others, even years after your own battle. 

    MSJS - if you would like to talk to someone directly, you can get advice and support from me at TB Alert, or from one of our peer supporters who have been personally affected by TB. You can reach me at helen.clegg@tbalert.org.

    Best wishes,

    Helen

  • Please reply to me. I have been on a TNF Inhibitor and am being shunned by everyone. Is noone facing up to the truth? I am alone completely. There is no support.

  • I'm sorry to hear that you are still unwell and feel that you are lacking in support, but it is good that you are receiving treatment. From the case history that you have already shared and your current treatment, it does sound like your condition is receiving medical attention, but that they do not think you have TB. Therefore it is out of the scope of our expertise to help.

    Best wishes,

    Helen

You may also like...