TB in covid times

[airborne]

Carol how's the invalid himself doing?

What does TB actually do to you?

 

[Carol35]

Carol how's the invalid himself doing?

What does TB actually do to you?

Haha thanks so much for asking, this week he has definitely turned a page, I swear to god the difference from last week to this week has been significant. He almost looks human again and is returning to work on Monday. If you passed him in the street, you would never in a million years suspect he has a deadly disease. His attitude has generally been happy and positive this week after a very bad weekend - sadly the stigma is still too much for him so he has only told a handful of people. ( I feel this is disgusting he doesn’t want to tell people but I have to respect him- it’s his illness)

I’m only going to post this so that anyone out there who may be experiencing the same symptoms should get checked out..naturally this is OUR experience. Hopefully this thread even pops up in a TB google search.

What TB does: Hides really well for many many months while you happily spread it around and makes you feel like shyte.

1) About 6 months ago, weight loss started - he just started a new job so we put it down to stress, bear in mind it’s very gradual… like not even noticeable at first especially if you see the person every day.

2) A smokers cough. Need I say more. A nagging cough that you put down to all the crap smokes you smoke during lockdown but the cough is not bad enough to render you useless.

3) Then the severe fatigue started, we put it down to stress - new job, working long hours, as point 1 above. Sleeping at 7 pm.

4) Anout 3 months ago, he started to feel “wierd“ . No explanation, just not feeling right, like something was wrong, head tingling, dizzy spells things like that. I told him to make an appointment with doc but he kept delaying because very busy with work etc, lots of excuses. All above symptoms still present.

5) Night sweats started, he put it down to winter and sleeping in multiple layer clothes and blankets.

6) Coughs up blood about 6 months into symptoms, his phlegm looks like strawberry jam. Tests positive the next week for TB - Sputum test is 3+ for tuberculosis.

Its very gradual, you don’t even know it’s happening until you get your results. He is over 6ft tall and at first weigh in at TB clinic he was 61kg … he has always been a skinny guy but we just didn’t see how much weight he had lost. I only saw something was seriously wrong when he had to take his shirt off for the chest X-ray..then I was like WTF - how did I miss this?

I just want to point out that my boy has not been on deaths door - it’s was just nagging wierd symptoms over a prolonged period of time and then eventually the blood cough that forced the situation - otherwise we would still be sitting here with a 3+ TB infectious person and not even know it. It’s only when he started on the hectic medications that he has shown true illness and felt completely invalid..first week on meds he really looked like he could die.

I really hope this helps someone out there! And thanks to all the individuals that have inboxed me such great support and advice.

 

[airborne]

Good to hear he's doing better!

I'm a skinny dude and over 6ft but if I go under 70kg that's entering the danger zone, at 61kg I'd be near skeletal. Shame to get that skinny he must have had a pretty rough ride

Have you delved into his substance use, certain drug users are a known vector for TB. That may explain him catching it despite it being very rare within his demographic. Or it could have just been pure chance/poor luck.

But getting back to TB, I had a look now and it's actually a bacteria that infests your lungs and can spread to other organs. It makes your body it's new home. It can also be dormant and then only become apparent years later when the bacteria wakes up and becomes active. Which further blurs the lines of when he may have caught it.

"TB disease can be treated by taking several drugs for 6 to 12 months. It is very important that people who have TB disease finish the medicine, and take the drugs exactly as prescribed. If they stop taking the drugs too soon, they can become sick again; if they do not take the drugs correctly, the germs that are still alive may become resistant to those drugs. TB that is resistant to drugs is harder and more expensive to treat."

 

[Carol35]

Good to hear he's doing better!

I'm a skinny dude and over 6ft but if I go under 70kg that's entering the danger zone, at 61kg I'd be near skeletal. Shame to get that skinny he must have had a pretty rough ride

Have you delved into his substance use, certain drug users are a known vector for TB. That may explain him catching it despite it being very rare within his demographic. Or it could have just been pure chance/poor luck.

But getting back to TB, I had a look now and it's actually a bacteria that infests your lungs and can spread to other organs. It makes your body it's new home. It can also be dormant and then only become apparent years later when the bacteria wakes up and becomes active. Which further blurs the lines of when he may have caught it.

"TB disease can be treated by taking several drugs for 6 to 12 months. It is very important that people who have TB disease finish the medicine, and take the drugs exactly as prescribed. If they stop taking the drugs too soon, they can become sick again; if they do not take the drugs correctly, the germs that are still alive may become resistant to those drugs. TB that is resistant to drugs is harder and more expensive to treat."

Thanks for your reply, yar I know…we should have seen it but we just didn’t as I don’t see him naked or anything like that. But when he took his top off for the X-ray I almost had a heart attack…he did look skeletal.

He is not much of a smoker even so substance abuse just didn’t cross my mind, we are a family of weed smokers for the last 30 years…I know recreational coke with friends on occasion ( not admitted but I’m not an idiot) but nothing I know that would seriously question how he caught this…and he swears blind he has done same as the rest of the 90k teenagers in our area..hanging at pubs, playing pool blah. ( I stay in Flamingo Vlei, Cape Town if any other dads/moms want to know )

Sadly, his symptoms mimic HIV and that was our first thought after the visit to the doctor after his feedbak and list of possibilities… TB was right at the bottom of the list. When the doctor called me and said neg for hiv but pos for tb , I laughed so loud like an idiot as relief, he must have thought I was mad. I wish I could change that moment to just nod my head or something..anything but laugh but I think it was my coping mechanism

 

[Gordon_R]

[snip]

Sadly, his symptoms mimic HIV and that was our first thought after the visit to the doctor after his feedbak and list of possibilities… TB was right at the bottom of the list. When the doctor called me and said neg for hiv but pos for tb , I laughed so loud like an idiot as relief, he must have thought I was mad. I wish I could change that moment to just nod my head or something..anything but laugh but I think it was my coping mechanism

Sadly many doctors are 'blinded' by the demographic that they treat, and fail to consider less likely but important diagnoses. My hairs stood up at your list of symptoms, which are incredibly obvious in retrospect. I have heard of similar misdiagnosis worldwide in middle class populations, which have a low incidence of TB.

This is ironic, because the W-Cape has some of the world's highest incidence of XDR cases. I personally know two car guards who had TB (one died). Transmission is by close proximity (or sharing a stompie...)

 

[airborne]

Sadly many doctors are 'blinded' by the demographic that they treat, and fail to consider less likely but important diagnoses. My hairs stood up at your list of symptoms, which are incredibly obvious in retrospect. I have heard of similar misdiagnosis worldwide in middle class populations, which have a low incidence of TB.

This is ironic, because the W-Cape has some of the world's highest incidence of XDR cases. I personally know two car guards who had TB (one died). Transmission is by close proximity (or sharing a stompie...)

It seems that fortunately it's not particularly contagious, like Covid or the flu, why is that?

 

[Gordon_R]

It seems that fortunately it's not particularly contagious, like Covid or the flu, why is that?

The vast majority of people have high levels of immunity to TB (natural and vaccinations). Those who get infected tend to be immuno-compromised (chronic alcoholism). It is an extremely slow growing bacterium (not a virus), and actually 'prefers' to keep its host alive (unlike Ebola for example).

In the 19th century TB was extremely widespread due to nutritional deficits from poor diets. It was called 'consumption' because of its highly specific symptoms, before it was known to be an infection.

Google famous people who had TB, and spend a long time reading. One of the more recent was Nelson Mandela while in Polsmoor.

 

[Carol35]

Sadly many doctors are 'blinded' by the demographic that they treat, and fail to consider less likely but important diagnoses. My hairs stood up at your list of symptoms, which are incredibly obvious in retrospect. I have heard of similar misdiagnosis worldwide in middle class populations, which have a low incidence of TB.

This is ironic, because the W-Cape has some of the world's highest incidence of XDR cases. I personally know two car guards who had TB (one died). Transmission is by close proximity (or sharing a stompie...)

Thanks so much for your info..your feedback has been invaluable….you are right as our doctor initially sent us on a wild goose chase to get treatment, wasting time and money in getting treatment started ASAP. I don’t blame him as he was very pro active and called me consistently with feedback and info but didn’t appear to know where to send us in the correct direction to get treatment started right away in our area.

so far so good with the medications and I had to google your XDR cases, I’m hoping my boy doesn’t land up falling into that category but I imagine he could if he stops taking the meds or “misses” days when he starts to feel healthy again which as of now, he has. He says side effects of the meds have definitely alleviated and even his chest starting to feel better.

Sadly, stigma still strong, he got a note from his doctor that he can return to work already this week but they asked him to stay away for another week because everyone was nervous and scared…I told him to tell his work that he is the one who should be nervous at this point, people shouldn’t stay away from him because he has TB, he needs people to stay away from him because he cannot, under any circumstances catch covid.

Lastly, I’m still stunned there is no support for this disease, same as my last posts, Nothing has changed in the last week despite my best efforts , the only info and first hand feedback has been from this forum and private messages sent to me. I’ve learnt more here on this forum than any google search I have done online. I find this absolutely beyond my comprehension in this day and age when there is support for every little thing online..FB groups for knitting and investigating murders, nothing for people in SA that suffer Tuberculosis. just wow.

 

[Gordon_R]

Thanks so much for your info..your feedback has been invaluable….you are right as our doctor initially sent us on a wild goose chase to get treatment, wasting time and money in getting treatment started ASAP. I don’t blame him as he was very pro active and called me consistently with feedback and info but didn’t appear to know where to send us in the correct direction to get treatment started right away in our area.

so far so good with the medications and I had to google your XDR cases, I’m hoping my boy doesn’t land up falling into that category but I imagine he could if he stops taking the meds or “misses” days when he starts to feel healthy again which as of now, he has. He says side effects of the meds have definitely alleviated and even his chest starting to feel better.

Sadly, stigma still strong, he got a note from his doctor that he can return to work already this week but they asked him to stay away for another week because everyone was nervous and scared…I told him to tell his work that he is the one who should be nervous at this point, people shouldn’t stay away from him because he has TB, he needs people to stay away from him because he cannot, under any circumstances catch covid.

Lastly, I’m still stunned there is no support for this disease, same as my last posts, Nothing has changed in the last week despite my best efforts , the only info and first hand feedback has been from this forum and private messages sent to me. I’ve learnt more here on this forum than any google search I have done online. I find this absolutely beyond my comprehension in this day and age when there is support for every little thing online..FB groups for knitting and investigating murders, nothing for people in SA that suffer Tuberculosis. just wow.

I'm not an expert, but glad that I could help in a small (and belated) way. Nutrition and adherence to treatment protocols are key (same with HIV). The prognosis is good for those with no other risk factors.

I had no idea of the overlap between Covid and TB, something not mentioned in any thread on this forum, and certainly a risk factor for 'excess deaths' during the pandemic:

New Data Shows 'global Impact Of COVID-19 On TB Epidemic Is Worse Than Expected'

Over a million additional cases of tuberculosis (TB) went undiagnosed and untreated in the last year due to the impact of COVID-19-related lockdowns.

health-e.org.za

 

[Carol35]

The vast majority of people have high levels of immunity to TB (natural and vaccinations). Those who get infected tend to be immuno-compromised (chronic alcoholism). It is an extremely slow growing bacterium (not a virus), and actually 'prefers' to keep its host alive (unlike Ebola for example).

I just want to thank you for this post as I did see it earlier this week, our housemate who has been living with us for about 13 years is a functioning alcoholic- has a persistent smokers cough and I forced him to go for a sputum test this week…was just about to blame him for my boys TB but his test result today was negative haha - least we know now. I know for a fact that over the lock down period, my boy has shared joints with him as well as alcohol..but thankfully, it’s only currently isolated to my boy. I guess my housemate can be thankful he didn’t get it from my boy at this point.

( I just have to add, sorry I keep saying my boy even though he is a 25 adult but he won’t feel comfortable me saying his name outright at this point despite the fact he has a very common name and I’m pretty sure I’ve mentioned it before on this forum somewhere in the last 10 years )

 

[Gordon_R]

I just want to thank you for this post as I did see it earlier this week, our housemate who has been living with us for about 13 years is a functioning alcoholic- has a persistent smokers cough and I forced him to go for a sputum test this week…was just about to blame him for my boys TB but his test result today was negative haha - least we know now. I know for a fact that over the lock down period, my boy has shared joints with him as well as alcohol..but thankfully, it’s only currently isolated to my boy. I guess my housemate can be thankful he didn’t get it from my boy at this point.

( I just have to add, sorry I keep saying my boy even though he is a 25 adult but he won’t feel comfortable me saying his name outright at this point despite the fact he has a very common name and I’m pretty sure I’ve mentioned it before on this forum somewhere in the last 10 years )

A single sputum test is not reliable (google it). IMO it is highly likely that your housemate had a chronic low-level infection at some point, as he meets all the criteria I defined. It's his problem if he is sick now, but also your problem if you get infected in future.

TB is a horrible disease (and still stigmatised like its terrible twin HIV), but I'm glad you seem to have a handle on it. In the 19th century it was literally a death-sentence...

 

[Carol35]

I'm not an expert, but glad that I could help in a small (and belated) way. Nutrition and adherence to treatment protocols are key (same with HIV). The prognosis is good for those with no other risk factors.

I had no idea of the overlap between Covid and TB, something not mentioned in any thread on this forum, and certainly a risk factor for 'excess deaths' during the pandemic:

New Data Shows 'global Impact Of COVID-19 On TB Epidemic Is Worse Than Expected'

Over a million additional cases of tuberculosis (TB) went undiagnosed and untreated in the last year due to the impact of COVID-19-related lockdowns.

health-e.org.za

Yes exactly, my son on his days to collect his meds has to WhatsApp his nurse with the time he will be there, she has everything ready for him, he literally walks in, does his weigh in, has his standard medical checks, grabs his meds and out of there as fast as possible. They don’t want him sitting there with potential covid and other TB cases. We knew all along he didn’t have covid because his baby mama made him do tests every second week to see baby. He could only see the little one with a neg covid test. That’s a story on it’s own.

 

[Gordon_R]

Yes exactly, my son on his days to collect his meds has to WhatsApp his nurse with the time he will be there, she has everything ready for him, he literally walks in, does his weigh in, has his standard medical checks, grabs his meds and out of there as fast as possible. They don’t want him sitting there with potential covid and other TB cases.

Same story with the car guard who I know survived TB. There are clinics who do this well. See DOTS: https://en.wikipedia.org/wiki/Directly_observed_treatment,_short-course

My sister is a pharmacist, and used to work at Red Cross Children's Hospital many years ago. Getting outpatients to adhere to long-term protocols is always a challenge.

 

[Carol35]

A single sputum test is not reliable (google it). IMO it is highly likely that your housemate had a chronic low-level infection at some point, as he meets all the criteria I defined. It's his problem if he is sick now, but also your problem if you get infected in future.

TB is a horrible disease (and still stigmatised like its terrible twin HIV), but I'm glad you seem to have a handle on it. In the 19th century it was literally a death-sentence...

No, he went for all the exact same tests as my boy…I was surprised at the neg result I must be honest, but he did the double sputum test, x rays as well as the bloods. He really just should stop smoking and drinking so much. And he is kind of a weak person, he is sickly but he functions as a normal person daily. And he is not a pest..he is a decent drunk, drinks, plays x box, smokes , bed. No drama. I do believe it wasnt him haha ( yes I’m still trying to point fingers at someone to blame lol )

 

[Gordon_R]

No, he went for all the exact same tests as my boy…I was surprised at the neg result I must be honest, but he did the double sputum test, x rays as well as the bloods. He really just should stop smoking and drinking so much. And he is kind of a weak person, he is sickly but he functions as a normal person daily. And he is not a pest..he is a decent drunk, drinks, plays x box, smokes , bed. No drama. I do believe it wasnt him haha ( yes I’m still trying to point fingers at someone to blame lol )

You said he got infected 6 months ago (according to your OP). The housemate could have passed on the infection, and since gone into remission (it's a tricky bacterium). Anyway, good that he got tested properly.

 

[Carol35]

Same story with the car guard who I know survived TB. There are clinics who do this well. See DOTS: https://en.wikipedia.org/wiki/Directly_observed_treatment,_short-course

My sister is a pharmacist, and used to work at Red Cross Children's Hospital many years ago. Getting outpatients to adhere to long-term protocols is always a challenge.

Exactly, where my boy is being treated is literally, and I really mean literally on the adjacent street from where we live, 1 minute away, I’ve driven past this building with no signage for 15 years…and had no idea what it was for. It’s so small but clearly they are doing things well…they said he must message when he is feeling crap, when he wants advice..( not that he will), side effects get too bad or for his meds. For a gov facility, 3 weeks in and service has been nothing but superb despite the fact my boy says he hasn’t seen another white face yet, he is getting great treatment and his dedicated nurse really seems to care about his health. Nothing like the horror stories you hear about normal gov facilities. Getting the results that lead us towards TB has cost us over 3k privately and we still waiting on last bills, treatment since started has cost R0

 

[Carol35]

You said he got infected 6 months ago (according to your OP). The housemate could have passed on the infection, and since gone into remission (it's a tricky bacterium). Anyway, good that he got tested properly.

I’m not sure I understand remission… will look into that. But I also don’t want to make a mountain out of a molehill, my housemate has already just spent a small fortune on testing to appease me and I don’t wont to poke a fire that’s not there. He did test negative and did all testing that I asked of him. And as you would understand, my boy could have been infected last year, even the year before and as the doctor explained to me, he could have had the bacteria for god know how long, but his immune system went low and the TB kicked in only 6 months ago which coincided with start new job/baby mama drama et al. I dont think at this point I can ask my housemate to do further testing because what else could he do? As a side note, he only willingly did all the testing because he shat himself on his weak health and I forced him. At this point, I honestly believe he is a simple alcoholic and his health is effected because of that and not TB.

 

[Gordon_R]

I’m not sure I understand remission… will look into that. But I also don’t want to make a mountain out of a molehill, my housemate has already just spent a small fortune on testing to appease me and I don’t wont to poke a fire that’s not there. He did test negative and did all testing that I asked of him. And as you would understand, my boy could have been infected last year, even the year before and as the doctor explained to me, he could have had the bacteria for god know how long, but his immune system went low and the TB kicked in only 6 months ago which coincided with start new job/baby mama drama et al. I dont think at this point I can ask my housemate to do further testing because what else could he do? As a side note, he only willingly did all the testing because he shat himself on his weak health and I forced him. At this point, I honestly believe he is a simple alcoholic and his health is effected because of that and not TB.

Remission simply means that the infection is no longer active, but the bacteria can still be hiding in the body. TB can even get into the bones (ancient graves show spinal deformities). Your son may have had a latent infection for years, which only flared up under stress.

A full course of treatment is necessary for a permanent cure. Stopping prematurely can lead to temporary remission, followed by a flare-up. This is usually when the bacteria becomes drug resistant, and fatal. I'm sure you are getting good advice, just putting this out there for other forum members.

 

[Gordon_R]

On a lighter note, my internet login used to include my age 35, but that was way back in 1997...

 

[Carol35]

Remission simply means that the infection is no longer active, but the bacteria can still be hiding in the body. TB can even get into the bones (ancient graves show spinal deformities). Your son may have had a latent infection for years, which only flared up under stress.

A full course of treatment is necessary for a permanent cure. Stopping prematurely can lead to temporary remission, followed by a flare-up. This is usually when the bacteria becomes drug resistant, and fatal. I'm sure you are getting good advice, just putting this out there for other forum members.

No…the only good advice I’m getting is from this forum…unless I actively test positive myself and was allowed into the TB clinic and asked the right questions which my boy don’t do..before every check up, I give him a run down of questions to ask and he comes back with a bek full of teeth and no answers. I want to kill someone.. sooo frustrating.

That being said, we are very aware of the dangers of feeling better after treatment starts and not going through with the course…his TB card shows treatment ends on 19th January 2022. I can only hope and kak him out so much to stay on course but you can only lead a horse to water so much, he is 25 years old after all. I’m doing what I can.