Home / Episode 7

Siyayinqoba Beat It! 2005 Episode 7 –

Treating Opportunistic infections

In this episode of Siyayinqoba Beat It! the support group spoke about the more serious opportunistic infections which occur when the immune system is very weak, when the CD4 cell count is below 200. This is the stage that is called AIDS. The reality is when your CD4 cell count is low, HIV positive people get a number of opportunistic infections but the good news is that with the help of ARVs many people recover even from serious opportunistic infections and get well again.

Jason Wessenaar: Kgotsong, re ya le amohela ho Siyayinqoba Beat It! Support Group {Sesotho} [Hello and welcome to the Siyayinqoba Beat It! Support Group.] My name is Jason. In the Siyayinqoba Support Group we are all living positively with HIV. Each week we get together to discuss issues that affect our lives with HIV; from disclosure to positive living. Siyayinqoba is your guide to better living with HIV/AIDS. If you’re living with HIV or you have a partner, a friend or a family member living with HIV, this programme is for you. Today we’re talking about the more serious opportunistic infections which occur when your immune system is very weak, when your CD4 count is below 200. This is the stage that is called AIDS. The reality is when your CD4 cell count is low, you will get a number of opportunistic infections but the good news is that with the help of ARVs many people recover even from serious opportunistic infections and get well again. Godfrey Tsosoana is our youth guest today. Godfrey will be sharing his experiences with beating opportunistic infections with us. Welcome Godfrey. The Siyayinqoba team spoke to Pretty Fisher from Khayelitsha who shared her experience of beating Kaposi’s Sarcoma with us. Let’s go and meet Pretty.

Beating Kaposi’s Sarcoma with treatment

Khayelitsha, Western Cape

Pretty Fisher: Igama lam ndingu-Pretty Fisher. Ndihlala e-Harare kwa-number 33520. Ndaqala ukugula ngo-1991 kwathi ngo-1999 ndaqala ndaba nama ngqabangqabaza emilenzeni. Kwaze kwathiwa es’bhedlele ndine-Kaposi’s Sarcoma. {isiXhosa} [My name is Pretty Fisher and I stay in Harare at number 33520. I started getting sick in 1991 and in 1999 I had sores on my legs. I went to the hospital and they told me I have Kaposi’s Sarcoma.]

Dr Peter Saranchuk (Doctors Without Borders): So in 1999 you first noticed the black spots here and it started to grow.

Pretty Fisher: And it started to grow and it was all black.

Dr Peter Saranchuk: You had the bumps and the nodules here. And then I think it went all the way up here and this leg as well. Did you know it’s a cancer caused by HIV making the immune system weak. Some people only see a black spot like this, so that’s probably how it started, some people get the black or purple spots inside. Did you have this one inside? Open your mouth, so it’s better now. Kaposi’s is very serious, if we don’t treat Kaposi’s, people die. So if you didn’t start treatment, Kaposi’s means you’re in stage 4 HIV which is AIDS and that means sudden death, without treatment. So I’m glad that finally after a long time, you got the treatment. Now, it’s improving, you can put some weight on it. You can walk, you can even dance in church, you told me. That’s good.

Pretty Fisher: Kuthe last year nge-12 zika-July, ndaqala ii-ARVs. Ndithi ndina-2 months ndiqale ii-ARVs ndabona umehluko, kwaqala kwawa izikhokho ezazilapha kum emlenzeni. Qho xa ndivuka, ndivuka ibhedi igcwele zizikhokho, ndamangala uba kuqhubeka ntoni, andayazi uba kuqhubeka ntoni. Ndahamba ndayobuza ugqirha ingaba yile-Chemotherapy eyenza lento? Wathi lo gqirha ayo-chemotherapy, zii-ARVs and very soon uzakuyiyekiswa i-Chemotherapy because ii-ARVs zenza lomsebenzi wenziwa yi-Chemotherapy. Nyani kuthe ngo-February this year ndayekiswa i-chemotherapy, kwathiwa mandihlale for three months ndingezi uzothatha i-Chemotherapy. Uqala kwam utya ii-ARVs, ndaqala nge-Nevirapine ne-d4T ne-3TC. Ndithi ndina-3 months ndaqala ndadumbha iminwe, ndadumbha nobuso nomlomo. Ndakhawuleza ndaya ngoba kwakuthiwe ekliniki xa ubona into baleka uze ekliniki. Ndahamba ndaya ekliniki kwangalomini, ndastotshwa i-Nevirapine ndanikwa i-d4T ne-3TC ne-Efivarenz. Since from last year oko ndabakwi-d4T ne-3TC ne-Efivarenz. Ndifila ndiphilile, ndinamandla kuna kuqala. Ndiyakwazi nohamba ngapandle kweentonga, andisekho kwi-wheelchair anymore, nee-pains andisenazo kakhulu, nomehluko ndiyawubona em’lendzeni wam, noko uyakhanya ngoku kunakuqala. Wawukade umnyama kuqala, ngoku uyakhanya, ndiyawubona umehluko. {isiXhosa} [Last year on the 12^th of July I started taking ARVs. Two months after starting ARVs I saw a difference on my legs because the skin on my leg started flaking. Every morning when I woke up my bed was full of skin flakes. I wasn’t sure what was happening so I asked my doctor if it was the chemotherapy that was causing my leg to flake. The doctor said it’s not the chemotherapy, it’s the ARVs. He told me that very soon I would be taken off the chemotherapy because the ARVs were doing the same job as the chemotherapy. In February this year I was taken off chemotherapy. They told me I wouldn’t need chemotherapy for the next three months. When I started on ARVs I was taking Nevirapine, d4T and 3TC. After three months, my fingers, face and mouth swelled. I went to the clinic immediately because I was told that if I experience any side effect I must report it immediately. I rushed to the clinic on that same day and I was taken off Nevirapine and I changed to d4T, 3TC and Efivarenz. Since last year, I’ve been on d4T, 3TC and Efivarenz, I feel healthy and more powerful than before. I can walk without using my crutches and I’m no longer sitting in a wheelchair. I don’t have anymore pains and I can see a difference on my leg. My leg is bright now because at first it was black but now it’s much brighter.]

Support Group

Jason Wessenaar: Watching that for me, scares me to see how many other people who could have died or are going through the same thing and yet they do not have treatment literacy.

Ricardo Moses: People who are not coming when it starts but when it’s worse, then they want to come forward but then it’s too late to help them. So I will put a question: “How can we provide or how can we make this treatment available, how can we educate people to come forward when it’s an early stage?”

Vuyani Jacobs: We should test for HIV at an early stage and we’ll be able to treat your opportunistic infections as they come.

Busisiwe Maqungo: Ingxaki with u-Pretty, uqalise ubane-Kaposi’s Sarcoma ngo-1999 and yayingekho i-treatment ngoko. Uzodibana nayo ngoku. Uba ngaba umntu akasazi i-status sakhe kwezintsuku siphila ngazo zeenculaza, udlala ngexesha lakhe. Abantu abaninzi bazifumanisa xa sebene-serious opportunistic infections. Ikhona i-treatment {isiXhosa} [The problem with Pretty is that when she had Kaposi’s sarcoma in 1999 and there was no treatment at that time. She only received treatment recently. But now if there are still people who don’t know their status in this era of HIV, I think they are playing with their lives. Most people find out they are HIV positive when there are serious opportunistic infections. At least now treatment is available]; it’s not available for everyone but there is something.

Lihle and Ricardo Lihle Dlamini: Kunabantu abazi i-HIV status {isiZulu} [There are people who know their HIV status] but they never check their CD4 cell count. If you go and check your CD4 cell count and you know that if your CD4 cell count is at a yam isengaka {isiZulu} [certain level] you must know the stages of HIV infections because Kaposi’s sarcoma is a stage 4 illness of HIV. If you know about opportunistic infections.

Ricardo Moses: Jy kry mense daar buitekant wat hulle CD4 counts weet en dan hulle nog altyd met die probleem dis ’n minor OI waar meer hy sit. En dan kry jy ook mense wat nie, hulle weet die protocol, dat government protocol sê jou CD4 count moet jy elke ses maande vir die dokters vra nie en dit is waar die mense dit nou ook het nou en op die ou ende van die dag is dit ernstig. {Afrikaans} [There are people out there who know their CD4 cell counts, but they still believe they have a minor opportunistic infection. And you also get people who don’t know that the government protocol says you must ask your doctor for your CD4 cell count every six months. People ignore this and the problem becomes more serious.]

Jason Wessenaar: After this short break we talk more about beating opportunistic infections. Stay with us.

Jason Wessenaar: Mmuhi re ya ho amohela hape mona ho Siyayinqoba Beat It! Support Group {Sesotho} Welcome back to the Siyayinqoba Support Group, the programme for everyone infected and affected by HIV. We are talking about serious AIDS defining opportunistic infections. I want to find out from Godfrey what your experiences have been with opportunistic infections.

Godfrey Tsosoana: Ngiye nga-experience izinto esifana nokuthi mangilala ebusuku ngi-sweat, ngikhohlela kabuhlungu igazi, ngi-lose i-appetite. Ngabona ukuthi ngihlale akuzungisiza, ngcono ngivele ngihambe ngiye ekliniki. Ngihambile ngaya ekliniki, kwatholwa ukuthi ngine-TB i-PCP. After six months ngiphinde ngibuye ngizo-check ukuthi ngise-positive. Bangitshela ukuthi uzonginika i-Rifampicin, i-INH, i-PZA ne-Ethambutol. After all that ngazizwa ukuthi manje sengingcono sengi-right nje. So ngo-January ngahamba ngayokwenza i-HIV test kwatholwa ukuthi ngi-HIV positive, I was so scared that time benginikeza ama-results, ngethukile ngingazi ukuthi ngizothini. {isiZulu} [I experienced night sweats when I was sleeping. I was coughing blood and I also lost my appetite. I realised that if I stayed at home I wouldn’t be able to get help. I decided to go to the clinic and I found out that I had TB and PCP pneumonia. After six months I had to come back to check if the TB is still there. The doctor said he was going to give me Rifampin, INH, PZA and Ethambutol. After that I felt better and I wasn’t getting tired anymore. In January I went to do a HIV test. I found out that I’m HIV positive. I was very scared when I got my results because I didn’t know what to do. After all that I told myself that being HIV doesn’t meant it’s the end of my life.]

Busisiwe Maqungo: Uyaqond’ba uteste wena emveni koba kwenzeka ezizinto une-TB ne-PCP pneumonia and all those things and according to my understanding i-PCP seyingu-stage four. Asivele sitsibele ku-stage four mos xa si-HIV positive, sisazi singazi. Siqala sibenazo ezinye ii-OIs. Zange unotise nto, zange zibekhona ii-warning signs mhlawumbi ezazikhe zakhona? {isiXhosa} [Do you realise that you tested after you had opportunistic infections like TB and PCP pneumonia? According to my understanding PCP pneumonia is stage four. We don’t just get to stage four when we are HIV positive. We experience minor opportunistic infections first. Did you experience warning signs of HIV?]

Godfrey Tsosoana: Hayi mina angizange {isiZulu} [I never experienced] any opportunistic infections except TB. I was very surprised when they told me I had PCP pneumonia.

Lihle Dlamini: Kunabantu who also uthola ukuthi akabinawo ama-opportunistic infections and yet uma ngaba eyotshekha i-CD4 cell count yakhe athole ukuthi una-17. ama-immune systems wabantu awafani. {isiZulu} [There are people who don’t experience opportunistic infections. And you may find that when they check their CD4 cell count it’s 17. People have different immune systems.]

Busisiwe Maqungo: So the immune system ba-strong ngoku incinci {isiXhosa} [is strong even though it shows to be weak.]

Lihle Dlamini: Yes it’s strong and it’s still able to fight infections. Kube nabatu uthole ukuthi i-CD4 cell count yakhe [There are people who have a high CD4 cell count], for example 700, uthole lowomuntu ungenwa yi-TB. [but you find that they may acquire TB.] Ama-immune systems wabantu awafani. [People have different immune systems.] {isiZulu}

Godfrey Tsosoana: Ngahamba ngayotshekha i-CD4 count after ngiyenze i-HIV test. Abuya ama-result athi i-CD4 count yam ngu-409. abazange bangi-put on treatment yama-ARVs even now angikawasebenzisi ama-ARVs. {isiZulu} [I went to check my CD4 cell count after I had my HIV test. My CD4 cell count was 409, but I wasn’t put on ARV treatment and I’m still not on ARVs.]

Busisiwe Maqungo: Like Lihle said abanye abantu bayakwazi uba athi ngoku i-CD4 cell count iphezulu abenama-OIs a-severe kengoku kunyanzeleke uba mabafakwe kwi-treatment ngenxa ye-severe OIs abathe banazo noba i-CD4 cell count i-strong. Ngenxa yalonto leyo bekumeluba ukwi-ARVs. {isiXhosa} [some people have high CD4 cell counts but they experience severe opportunistic infections. Therefore they have to be put on ARV treatment because of severe opportunistic infections they may have. I think because of that you were supposed to be on ARVs].

Lihle Dlamini: I-Protocol yethu yala e-South Africaiyakusho lokho ukuthi {isiZulu} [In the South African protocol, it says that] if a person presents with opportunistic infections that are in stage 3 or 4, they must be put on ARV treatment irrespective of the CD4 cell count.

Jason Wessenaar: Stay with us, after the break we talk to Dr Trevor Majoro, he will be answering some of our questions about treating serious opportunistic infections.

Jason Wessenaar: Mmuhi re ya ho amohela hape mona mo Siyayinqoba Beat It! Support Group. {Sesotho} Welcome back to the Siyayinqoba Beat It! support group, the programme for everyone infected and affected by HIV. We’re talking about serious AIDS defining opportunistic infections. One of the conditions which occur in people with a low CD4 cell count is a CMV. The Siyayinqoba team went to Gugulethu where we met Lydia Mokoena, who has recovered from Cytomegalovirus or CMV thanks to ARVs. Let’s check this out.

Beating Cytomegalovirus with treatment

Gugulethu, Western Cape

Lydia Mokoena: Igama lam ngu-Lydia Mokoena, ndihlala e-130 e-Gugulethu apha e-room 19. Ndayotesta 2004, ndafumanisa ngo-May ukuthi ndi-HIV positive. Ndagula andakwazi ukuginya, ukutya. Ndaya e-KTC clinic, bandithumela ku-Dr Peter e-Site C. bendiphethwe yilento ilapha emqaleni, ugqirha wathi zii-ulcers. Bendipeyinelwa kakhulu, bendingakwazi ukuginya, ndithi uma ndithatha i-plate yokutya nditye ndingakwazi. Kuthi uma ndisitya kufanele ndithi, kume apha ukutya. Bendivuka ebhedini ebusuku ndine pain ethi hu hu hu, ibuhlungu i-pain leyo. I-CD4 count yam isithi 17. {isiXhosa} [My name is Lydia Mokoena. I stay at NY 130 in Gugulethu at room number 19. I tested in 2004 and I found out in May that I’m HIV positive. I was very sick and I couldn’t swallow my food. I went to KTC clinic and they referred me to Dr Peter in Site C. Dr Peter examined me with a scope. I had something in my throat and the doctors said that I had ulcers. It was very painful and I couldn’t swallow. I would take a plate of food and try to eat but I couldn’t. I had to bend forward in order to swallow. It was hard to swallow and my food would get stuck. I would wake up in the middle of the night because of the pain. It was very painful. My CD4 cell count was 17.]

Dr Peter Saranchuk (Doctors without Borders): Lydia was having a lot of difficulty swallowing. There’s different reasons for this, sometimes it’s oesophageal thrush but in her case it wasn’t thrush, it was an infection caused by CMV. CMV causes many other infections, sometimes people with HIV get CMV infection behind the eye in the retina and that’s very serious and sometimes it makes people blind. So if a person has any change in their vision, then they must see their doctor the same day or the next day to have a look in the eye and probably see a specialist. And the same if someone has difficulty swallowing, the food gets stuck then they have to see their doctor in one or two days to find out why and get treatment. In Lydia’s case, she had an IEV treatment which made it better and now that she’s on ARVs and the immune system is stronger, she won’t have the CMV anymore, her body is strong enough to fight the virus now.

Lydia Mokoena: U-Dr Peter wathi kum ndizoqala ii-drugs. Wathi kum ndizosela i-3TC, Nevirapine ne-AZT ndaba-right ndakwazi ukuphakama. Ngoku ndiyavuya ndiphilile zii-drugs, i-ARVs. {isiXhosa} [Dr Peter told me that I will start taking the drugs. He said that I will take 3TC, Nevirapine and AZT. After two weeks I felt better and I could get up. I’m happy because I’m living as a result of these drugs, ARVs.]

Dr Peter Saranchuk: But are you happy with your ARVs?

Lydia Mokoena: I am happy doctor but I was so sick at that time.

Dr Peter Saranchuk: Your CD4 count before ARVs was?

Lydia Mokoena: 17

Dr Peter Saranchuk: 17, yes you were very sick before, you’re much improved now.

Lydia Mokoena: Abangafuni usela ii-ARVs mahambe bayosela ii-ARVs ngoba ziyaphilisa, aziyongozi. Zindiphilisile ndinyukile phantsi. {isiXhosa} [Those who don’t want to take ARVs should go and take these ARVs because they give life and they are not dangerous. They kept me alive and raised me when I was down.]

Support group

Jason Wessenaar: Lydia got better after she got on to ARVs. So I just need to know, is there any other treatment besides somebody getting on ARVs?

Godfrey and Trevor Dr Trevor Majoro (HIV/AIDS Physician): There are people who are very fortunate, who when diagnosed HIV positive and their CD4 count is below 200 and their symptoms suggest CMV and even before they are actually diagnosed with CMV, put on ARVs, they do get better even without treatment for CMV. But there are those people who you find that their CD4 count is above 200 and according to government guidelines, they’ve not qualified to receive ARVs. Should you find in them CMV, you can treat it with gangcyclovir But remember if you do find somebody with CMV, that puts them on stage 4. Any person who’s got an AIDS defining illness, irrespective of whether the CD4 count is above 200, they have AIDS.

Busisiwe Maqungo: And they need ARVs?

Dr Trevor Majoro: They need to be on ARVs.

Lihle Dlamini: There was a time when I was very sick and my vision was blurred. I could silhouette of anything. I could see the shape but not know what I’m seeing. I also had diarrhoea but I never got checked for CMV but then it went away. Is CMV curable?

Dr Trevor Majoro: In all the cases I’ve witnessed where people went blind from CMV, none of them was reversed, even after treatment with antiretrovirals. So the best thing is to catch it before you get blind. Like it was discussed earlier on, it’s good that people should test. Because when you test early, you will be able to manage any problems. And by the way, whether you test for HIV or not, the virus keeps multiplying in your body. So it’s always best to test because when you test at least you know what to do next. If you don’t test, it keeps on multiplying and the more the number of viral particles in your blood, the more the war against your CD4 count or your soldiers. The lower your CD4 count, the greater the chances of getting opportunistic infections high morbidity, high mortality; that’s not what we want.

Jason Wessenaar: Now, why do they stop someone from chemo when the person is going on to ARVs and what’s the danger of having chemo and ARVs at the same time?

Dr Trevor Majoro: What this chemotherapy does, in the process of destroying or stopping the Cancer cells from multiplying, it also destroys your own body cells and we know that antiretroviral treatment, in targeting the virus since the virus utilizes the metabolic process of the cell, actually eats out of the cell, it also targets the cells. Now, you’ve got double destruction on your cells, so better they give each other a chance. Fortunately, those people who’ve got Kaposi’s Sarcoma, those who’ve been through chemotherapy and the cancer looks like it’s getting better, most people do well on ARVs post chemotherapy. So it’s important that somebody who’s got Kaposi’s Sarcoma gets to consult and if somebody who’s an expert in HIV feels that they have to go for chemotherapy, they’ll refer them to an oncologist. But we have seen that highly active antiretroviral treatment does well in making sure that the Kaposi’s sarcoma doesn’t disseminate.

Godfrey Tsosoana: Ama-steps engimele ukuthi ngiwathathe? {isiZulu} [What further steps can I take?]

Dr Trevor Majoro: Are you on TB treatment or have you taken TB treatment?

Godfrey Tsosoana: I’ve taken it but I was taken off it and they gave me immune boosters as an HIV positive person and that’s all they gave me.

Dr Trevor Majoro: A management plan would be, if you’ve had TB, the TB was treated. In his case, he said his CD4 count was above 400. So TB had been treated but he had PCP, at that time the boat was slightly missed because you should have been on ARVs. But the protocol of how to manage a HIV positive person is we first confirm that he’s HIV positive, confirm that he has TB and look at the CD4 count. In a case where the CD4 count is above 200, we put them on TB treatment for six months then after that they go on ARVs. But in his case, he also had PCP meaning that he should have also gotten the treatment for PCP. Even if the TB is no more there, the PCP is no more there, he’s a high risk, he’s better off on ARVs than not being put on ARVs. So what I would have done in your case, firstly you’re finished with the TB, make sure that the PCP is well treated and thirdly, put you on prophylaxis for PCP. There’s controversy around that. There are people who say if for three months your CD4 count is above 300 after you’ve been treated for PCP and then it’s fine, you can stop prophylaxis, there are those who say: “Bactrim for life”. So personally if somebody has been on cotrimoxasole after PCP pneumonia, I put them on cotrimoxasole for as long as they can take it because I don’t want to take chances.

Jason Wessenaar: Doctor, we’ve been talking about CMV, Kaposi’s sarcoma and these are not really common cases, what are other ailments or AIDS defining opportunistic infections that people should be looking out for?

Dr Trevor Majoro: You have what is called HIV Wasting Syndrome where somebody becomes severely debilitated, they lose weight. You’ve got extra pulmonary TB and we also spoke about Cytomegalovirus especially affecting the eyes. You also have Candida or thrush of the oesophagus and then you also have multi episodes of pneumonia and then you also have classically PCP pneumonia which is the most common chest infections. And you can also get commonly in our region, we see herpes simplex virus ulcers. If you see it, it’s been there for more than a month, that tells you that it’s stage 4, somebody is confirmed HIV. And then in women you can also get Invasive carcinoma of the cervix, basically those are the conditions if somebody is tested HIV positive and you see them, they’ve got AIDS irrespective of the CD4 count.

Jason and guests Jason Wessenaar: Ok, and this can be treated without even somebody going on to ARVs or does somebody have to go on to ARVs according to the protocol?

Dr Trevor Majoro: The protocol says if somebody has got any of these conditions and their CD4 count irrespective of whether it’s less than 200 or more than 200, they qualify for treatment with ARVs.

Jason Wessenaar: You’ve been watching Siyayinqoba Beat It! Support Group, the programme for everyone infected and affected by HIV. We hope that you’ve enjoyed the show and have learnt something that will help you live positively with HIV. Join us again next week in the Siyayinqoba Beat It! Support Group. We value your questions, opinions and views so please contact us on the numbers on your screen below, till then stay healthy and stay positive.