Tuberculosis

[conventgirl]

Anyone on site recovering from Tuberculosis?

Desperate to touch base with fellow sufferers- questions the consultants or nurses unable to answer x

[Armadillo57]

Hi I had non infectious TB which took 22 months to clear.

[conventgirl in reply to Armadillo57]

Hi - mine was infectious at onset but now 5 months into treatment and hopefully end in sight

Lost confidence in Consultant and feel like a guinea pig!

Are you well now?

[Armadillo57 in reply to conventgirl]

Hi Yes I’m ok but it’s left me with other things. I have to have immunoglobulin replacement therapy every three weeks as I’ve minimum immunity.

I think taking the three meds are the worst thing. Mine was already in my white cells so it took all that time to eradicate and there is no guarantee it won’t come back. Live in hope.

What’s the matter can I help you?

[conventgirl in reply to Armadillo57]

Hi - nice to finally be in touch with someone who understands the disease

I contacted mine through weekly volunteering at the Homeless which I did for a year until the lergy attacked.

Fighting to get fit/ normality back into my life

[Armadillo57 in reply to conventgirl]

It takes time. It leaves you knackered and lethargic. It affected my state of mind, possibly because they didn’t know how it was going to go. Then the ethambutol caused my eyes to become photosensitive and it left me with tinnitus which I still have. Don’t give in to the monkey keep going. Eventually you will come through it.

My consultant is brilliant nothing is to much trouble for him. Hope you are ok

[Armadillo57]

Hi again Been thinking did your consultant give you a telephone number to call if you have any questions or problems. I used it a couple of times and they were helpful. It was dedicated for Tb.

[conventgirl in reply to Armadillo57]

Morning- I found number for TB Alert but there were indifferent so basically I have been on a lonely mission.

I am going request a referral to a London hospital

Have a good day

[Ergendl]

My last husband Bob didn't know he'd had TB in the 1960s until he was diagnosed with COPD in the 1990s and investigations showed up TB scars on his lungs. He'd probably caught it when he was burying cow carcasses in the Foot and Mouth epidemic and was living a' very disorganised lifestyle' because he wasn't allowed to leave the farm he was working at until the job was done and he walked on to the next.

[conventgirl in reply to Ergendl]

Bless you - Bob must be tough and ‘lucky’ he didn’t contract CJD too! I really don’t know how he managed to keep going as it decimated me and I am nearly 6 months down the line

Impressed that you managed to avoid tb as worse disease imaginable and I thought I was resilient

I volunteered with Homeless for a year and that is where my journey from hell started!

Good luck x

[Ergendl in reply to conventgirl]

It was long before I met him in 1981. Sadly he died from heart failure in 2003, brought about by years of fighting COPD and not giving up smoking.

[conventgirl in reply to Ergendl]

So sorry- Life is so tough but keep your head up x

[angie26]

I was diagnosed in 2014 but not before they took me to theatre and whipped a wdge from my lung! they assumed it was a secondary cancer as I had breast cancer in 2007, turned out it was TB, could have saved that with a sputum test I'm sure!! The following 18 months was dreadful, I turned into a zombie with the meds, I don't take meds well and had to be introduced to them gradually. I am well now but can pick things up very easily. I have psedumonus, bronchiecstasis, COPD and I did have bacterium avium which on my last test disappeared! my Consultant asked me what had I been doing differently, I just changed my diet!! I was just about to be put on anothe 18 months of meds, I think I scared it away!!! but as I say I just have to be careful and stay away form illness, I learned the hard way, I went in to hospital to see a friend who had pneumonia, 2 weeks later I was in with pneumonia!! I hope you get some answers and let us know how you do X

[conventgirl in reply to angie26]

OMG so sorry to hear of your ordeal - makes me feel insignificant by comparison though diagnosed with Sarcoïdosis too last month and put on 80 mgs steroids daily but I took none - couldn’t take the stress on my body. 75 percent with Sarcoïdosis repair without meds.

How did you contact tb? Mine was volunteering with the Homeless last year.

Please stay in touch

Maz x

[angie26]

So sorry to hear you have sarcoidosis, that seems an awful lot of steroids, I wouldn't take them either!! I always think of the weight gain! I have no idea how I managed to get TB my consultant said I could have had it lurking there for many years but I don't get that. It's funny that at the same time my doctor told me that there were 3 others in my area and she'd seen none in 25 years. Of course you will never get an answer, as they keep things like that very closed. Keep well X

[conventgirl]

Morning- I put on some unacceptable weight with just a few steroids several months back that is so hard to shift

If I had taken the 16 per day, I would be like a sumo wrestler now!

Look on the bright side, at least we woke up this morning

Enjoy the weekend x

[Perce]

Weight control is a never ending process for me, every time I'm on steroids I pile on the weight and it is so hard to shift not being able to excersize.

[conventgirl]

Hi - never felt any better from steroids- in fact quite the opposite

Sickness and despair plus the weight didn’t quantify taking huge quantities prescribed recently!

[Nillaa]

Hi, I had tuberculosis (as well as pneumonia) exactly 20 years ago and received drug treatment for quite a long time, I think for over a year but am not sure exactly when my consultant stopped the treatment but it was longer than 6 months. I hated having to take all those drugs but they were very effective in stopping my TB symptoms immediately and I felt well after that for a very long time, with no issues. However, in December of 2017 I got pneumonia again, which has been caused by Pseudomonas. Apparently, I have pseudomonas now (confirmed by a bronchoscopy) , twenty years later because of the TB scar tissue, which means I keep getting infections. I have to say that I found my TB treatment much easier than what I'm dealing with right now in that I felt better immediately despite having been very sick for quite a while with TB and in that the drugs worked so fast with the symptoms. Pseudomonas, I found out, is much harder to deal with, sadly. As for the side effects of the TB drugs, I was monitored every month because I have other health issues as well.

[conventgirl]

Hi Nillaa

No cultures taken when diagnosed tb and a couple months back diagnosed as Sarcardosis!

I was very ill in February and has taken me months to try resume a normalish life

Consultant very brusque and unable to comprehend why I refuse to take 16 steroids daily- the despondency with extra weight is awful without another tranche of fat added.

Good luck

Marian x

[Nillaa]

Oh wow, some lung diseases (such as Sarcoidosis) can be misdiagnosed as TB but still makes me angry when doctors are not thorough. They should have taken cultures!

I know how sick lung diseases can make you, so hope you'll feel better and normal soon.

Any treatment always has serious side effects, especially steroids but sometimes we just have to go through with it… I have surgery option now, removal of scar tissue, which I am seriously considering so that I don't have to take antibiotics for the rest of my life.

Good luck to you too x

[Anikul]

I was diagnosed right pleural effusion.So my doctor decided to drain the extra fluids from my pleural for a culture test Then he told me I had pleural tb which is not infectious.So the doctors gave me TB medicine for 6 month.Then I started to take the medicines as directed though I wasn't feeling sick.But after taking the medicine for a month I felt shortness of breath and chest pain when inhaling and exaling deeply. Then I visited the doctor to know about my problem but they said I would get better after finishing my 6 month therapy.Then I finished my therapy but my chest pain was still there.Then I visited my doctor again and he gave me xray and ct test.Pleural thickening and a nodule was found.So I was given fnac test.There was no malignancy seen in fnac.So he told me I should be taking anti tb drugs.Now I am taking the drugs and already a year have been passed but still I feel chest, tightness and pain.