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My Experience of Tuberculosis (TB)

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Please only write here of you have had a direct experience of this condition

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      07.08.2009 14:13

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      My story of how TB affected an 18 year old student

      I was diagnosed with TB in my eye about 3 weeks ago. TB was going around my college and many students were diagnosed with latent TB and therefor the whole college was requested to have a blood test. My blood test came back positive and i had to visit the hospital for a chest x-ray which came back clear. Whilst i was going through this process i was also visiting a specialist optician about blurryness in my eye for a few weeks. After a few weeks i was diagnosed that i had TB in my eye and my immune system faught it off.

      Both the chest and eye specialist consulted each other and it was decided that i should be put on the full course of tablets for active TB. Now i have to take 7 tablets a day for 2 months and then 2 tablets a day for a further 4 months. The tablets have not affected me that badly however i always feel really tired and never want to get up in a morning. This has really affected my lifestyle as i represent female rugby at a high level and have training sessions 4 times a week. Due to the doseage of the tablets i am not able to participate in all these sessions.

      Furthermore, a side effect of the tablets is it could cause problems with your sight meaning i have to drive a 50 mile round trip to the hospital near my college every two weeks, rather than going to my local hospital 5 minutes down the road.

      As you can't drink with the tablets it means no alcohol for me for the next 6 months. Missing drinking at freshers week when i go to uni in September. In addition to this i have to come home every 2 weeks for a check up involving a 5 minute eye test.

      Although the TB nurses reassured me that my form of TB was not infectious and no one could catch it, my girlfriend has caught the germ and has not been in contact with anyone else from the college.

      Finally, the original case was found in October and only a few students were tested it took them until June to test the rest of the college resulting in 300 students testing positive from being in contact with the germ. All of this could have been prevented if everyone was offered a blood test in the first or second round of screenings rather than the fourth round.
      The TB couldn't have come at a worse time in my life.

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      06.08.2001 04:22
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      You can imagine how shocked I was when I was diagnosed with TB. I had the BCG when I was at school and still have the scar to prove it so I'd always thought that I was basically immune. Christmas 1999 was a strange one for me, my family were recovering from the death of my mother and to start feeling ill just before the holidays was the last thing any of us needed. Anyway, I went for some routine blood tests and a TB test to discover why I had been so tired and couldn't shift a nagging tickle in the back of my throat. The TB test was a simple injection into my left forearm which had to be 'read' or examined by the physician in two days. At first nothing seemed out of the ordinary but towards the end of the first evening i developed a large, itchy rash where they had injected me. When I went back to the doctors they were extremely surprised with my results which were positive and the rash measured about 3cms across, quite large apparently. The specialist I had to see was extremely nice and gave me tons of paperwork to explain TB and the medication I had to take. The paperwork they gave me explained that TB is an airborne virus that is extremely contagious and can be passed on by someone coughing or sneezing near you so you'll never know who is or isn't infected. There are two stages to TB, the first is not infectious and easily treated if caught early enough. The second stage is when the infection has advanced to the serious stage and starts to break down the tissue, it can also lead to death in rare cases although it's not that long ago that many people actually did die (my grandmother died from TB in 1955). The medication I was given was called INH, they never actually told me what it stood for! This may sound drastic but I swear its true, the INH was actually a poison because the only way to get rid of the TB bacteria was to poison it slowly! I was allowed to start my treatment on January 1 2000 so that I
      could enjoy the New Year with my family because with this medication you are not allowed to have any alcohol. Why? Alcohol reacts badly with the medication making the outcome at best seem like a super mega hangover! The reason being that because the medication is a poison and your bodies way of dealing with toxins is to pass them through the liver, it can overload it. The side effects listed for this kind of treatment were quite alarming. They included orange colored urine, chalky stools, yellow eyes and hepatitis. Because of these I had to go to the specialist every month and was only issued one months supply at a time. If I missed more than one day I was told I had to start the treatment all over again - I forgot to mention that it's a 6 month course! Each month I had to fill in a questionaire and have blood and urine tests aswell a complete physical. I was one of the lucky ones and didn't have any side effects. I completed the course successfully and, so far, I have had no more symptoms although I can never have the standard TB test because it will always come back positive. A blood test is the only way I can be tested now and, hopefully, I'll never have to go through that again! One final note, although I've completed the course and have been declared free of TB, it is possible that I may develop full-blown TB in later years so I've been told to watch out for unexplained weight-loss, a nasty cough that won't go away, severe tiredness and coughing up blood (if I ignore the above symptoms).

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        25.04.2001 18:37
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        I had the dreaded injection as a teenager. So how could I have Tuberculosis? I had a car crash last October. At the time we thought no-one had been injured: my daughter didn't even drop the chocolate biscuit she had been holding. I was thrown forward against my seatbelt, but didn't appear to have been injured at all. Three days later I started to get pains in my right breast. Being a little dozy, I didn't immediately connect this with the crash - after all I had taken my daughter to the Doctor's the day after the accident, and we had both seemed fine. When the pains were still there a couple of days later, I even did a pregnancy test, remembering that breast pain was the first symptom I had when pregnant with my daughter. Another week and another test, negative again, and I eventually connected the impact of the seatbelt with the pain - bruising, surely. After two weeks of increasing pains and the appearance of lumps in my right breast, together with redness and swelling, I went to the Doctor, who diagnosed bruising from the crash, and explained that typically bruising to the breast will not become apparent for 3 or 4 days. She also diagnosed an infection in the breast, and prescribed some antibiotics. She was a little concerned about the lumps though, and booked me an appointment at the Breast Clinic at the local hospital the following week. My first visit to the breast clinic was inconclusive, and I was prescribed more antibiotics, and given another appointment. The next appointment was also inconclusive, and was followed by many more, and by Christmas my poor knocker was a weird square shape, a third as big as usual, full of lumps and very painful. I had also been prescribed a bewildering variety of antibiotics, and got my knockers out for complete strangers more times than the average lap dancer. Just before Christmas I was diagnosed as having several abscesses in my r
        ight breast, and subjected to the delights of aspiration. Aspiration involves the doctor sticking a large needle attached to a syringe into the abscess, a draining out the fluid. They do this because removing the icky stuff helps the antibiotics to work. It was incredibly painful, and I had to have it done twice a week for several weeks - even on Christmas Eve! The doctors at the Breast Clinic still didn't know what was going on really, and the antibiotics continued. By the middle of January I felt like I had flu, and was so tired I couldn't do anything - even putting the kettle on for a cuppa - without feeling completely drained. One fateful day in the middle of January I visited the Breast clinic, having been taken off the antibiotics the week before, presumably to see what happened. I was flushed and had a headache. My temperature was raised and my knocker was twice as red as usual. The only time I have ever felt as tired as that was when I had just had my baby, and even going to the toilet was a huge energy draining undertaking. They decided an operation was the only answer, and I was admitted that night. I would have been scared if I hadn't felt so ill. That night I had a drip attached to my hand and they started to pump heavy-duty antibiotics into me. The next morning they operated to drain two of the abscesses, and I stayed in hospital for a couple of days so that they could continue with intravenous antibiotics. The next day, and every day for weeks afterwards, I was visited by the district nurse, my knocker now wearing a rather fetching bandage that made it twice its swollen size. On my next visit to the breast clinic, I was informed that I probably had Tuberculosis! During the operation a sample of fluid was taken, and Mycobacteria had been found in it. Tuberculosis is caused by infection with a type of Mycobacteria called Mycobacteria Tuberculosis, so unti
        l proven otherwaise it is assumed that I have TB. After 3 months they will be able to tell me which Mycobacteria I have been infected with, so until then I am being treated with antibiotics to get rid of the TB. It is important to treat Tuberculosis promptly, and to make sure that you take all your medication because unfortunately a strain of TB has developed that is drug resistant. If you do not take your medication you run the risk that eventaully it will becaome drug resistant and you will not be able to get it treated at all. I am now under the care of the Chest Clinic, and have found out that although I had had the vaccination against TB as a teenager, this hasn't given me protection against the disease. At some point in the past, I had been infected with Tuberculosis, probably by someone coughing near me who had TB in their lungs, but the infection had been partially beaten by my immune system. Who knows - maybe the BCG (anti-TB vaccination) I had as a teenager had stopped me developing full-blown TB at the time of the infection. I don't know much, because as we all know, the patient seems to be the last person to know anything. There has been some speculation that the blow to my breast during the accident caused a surge of lymph fluid through the body (a response of the immume system to injury), resulting in the TB infection appearing in my breast, but no-one seems to know why this has happened. As of the middle of January I have been taking medication for the TB - at first 6 tablets a day, and now only 2. The treatment will take 6 months altogether, and has side-effects. It makes me feel pretty tired all the time, and I have very poor concentration as a result, which is why I haven't written many opinions on dooyoo for the last few months, and IT MAKES YOUR WEE ORANGE! Yes - I am now peeing a liquid that bears a strong resemblance to Tizer and Irn-Bru, whi
        ch I will never drink again. I am also not allowed to drink alcohol whilst on this medication - the Doctor said it will make me very ill if I do, so unfortunately the sherry trifle is on hold until approximately July/August, by which time I will probably be able to get drunk merely by looking at a bottle of wine. Apart from the tiredness, which is due also to the ongoing infection, which is still not beaten yet, I still have the District nurses round to change my dressings. My knocker will never be the same again, as it now has two big scars on it, and is now getting smaller than the other one! My experience of TB has been a mixed bag really. On one hand it has meant months of tiredness and pain - the knocker still hurts a lot sometimes - an operation, and months of taking antibiotics, but on the other hand, it has made me think about how lucky I am. Visiting the Breast Clinic was never stressful for me, because I knew that whatever was wrong was not life-threatening, although I was in a lot of pain at times. Many of the women in there are not so lucky, and I often thought about how hard it was for them to attend that clinic - wondering if they had cancer, and if so, whether it was treatable or not. In the Breast Clinic, if you only have TB they are relieved. In conclusion, what tuberculosis has meant for me is months of tiredness, pain, and a big worry when I was first diagnosed - not about me but about my 4 year old daughter. Both she and my partner had to have the Montoux test, which involves a lovely nurse sticking a needle in your forearm and injecting a liquid under your skin. If you have a big reaction to this (measured a few days later) which in my case was a huge lump under the skin, then you are showing evidence of a TB infection, and must be treated with antibiotics for 6 months. If you do not develop a big lump under your skin after a few days, as was the
        case with my daughter and my partner, you are OK, and don't need any treatment. Incidentally - my daughter was far braver than my partner! Once I had taken my antibiotics for 2 weeks, I stopped being infectious. The chances of anyone being infected by me were practically zero before this anyway, because the kind of TB I have is known as closed TB - it is within the body, unlike open TB, which is usually in the lungs and thus capable of being spread when the infected person coughs. Until I stop wearing bandages on my poor knocker, however, every Tuesday a very discreet bright yellow truck with Environmental Health - Hazardous Waste written in large letters on the side calls round to collect my used dressings in a big yellow bag. TB takes a long time to treat, and is also a notifiable disease - so presumably I am down in some government records somewhere. These days the treatment is very effective, provided you make sure you take your medication properly (no food for 2 hours before and half an hour afterwards), and provided you haven't got the drug resistant form. There is a lot of information on the internet about TB, but I would not advise looking too much, because much of it is written in medical terminolgy, and as my friend jo1l says - enough hypochondria already! You can get needlessly worried by too much research on the net out of context, but it can be a very good source of information if you are not a panicky type. UPDATE At last I am off the antibiotics after 8 months. I stopped taking them on Friday a couple of weeks ago, and on the next morning incredibly bounced right out of bed! For the last 9 or 10 months I have woken up exhausted every morning. I haven't read a book at my normal rate (up to 3 a day) for a similar amount of time - it took me several weeks - because the tiredness affected my concentration. I am now making up for last
        time and my brain is positively fizzing. It seems that for at least the last couple of months it was the antibiotics that were causing the extreme tiredness. I can see where there are problems getting people to take their drugs if they make you feel this bad, but I still take a positive view on the whole experience. Although I have felt pretty dreadful for months, and the house resembles the Young Ones house due to lack of energy for housework, this illness allowed me to drop out for a while, and subsequently my stress levels are at an all time low.

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