Late HIV diagnoses: a virus in the blind spot
Christiane Fux studied journalism and psychology in Hamburg. The experienced medical editor has been writing magazine articles, news and factual texts on all conceivable health topics since 2001. In addition to her work for, Christiane Fux is also active in prose. Her first crime novel was published in 2012, and she also writes, designs and publishes her own crime plays.
More posts by Christiane Fux All content is checked by medical journalists.In many people, HIV is only recognized at an advanced stage. Because doctors often no longer have the disease on their radar. But that's not the only reason.
What the immune system does every day can only be felt when it loses its clout. Dormant viruses such as herpes zoster awaken from hibernation decades after suffering from chickenpox, causing painful shingles. Yeasts start to grow in the oral cavity. Or the intestine fights against bacteria, which manifests itself in constant diarrhea. And that is just the beginning.
"Such signs of a weak immune system are typical of an HIV infection if it is not treated," says Holger Wicht, press spokesman for Deutsche Aidshilfe, in an interview with Stubborn malaises in particular, which you cannot get under control, are a warning signal.
HIV is not thought of
Actually, in view of such findings, the family doctor should become suspicious. But that is often not the case. "A patient with a massive fungal infection in their mouth is sent home with a lozenge," says Wicht. He knows such cases well enough. "The problem is: Many doctors no longer have HIV on their radar - especially if the patients do not belong to a risk group."
1000 overlooked HIV-infected people
In fact, since it has been treated well, HIV seems to increasingly slip into the blind spot of perception: Although it can kill if left untreated, it can only be seen by those who are actively looking. According to the Robert Koch Institute, around 1,000 people in Germany are only diagnosed with HIV infection at a very advanced stage every year - because they were tested too late. The number of their immune cells has already dropped dramatically. Some sick people already show the full picture of AIDS.
Maik, 45 years old, was diagnosed much too late. He has known for ten years that he is infected with HIV. The disease was only recognized when it was almost too late. Because of constant diarrhea, he was very dehydrated at the time.The fungus in the mouth makes it hard for him to swallow. At a height of 1.80 meters, he weighs only 59 kilos - a picture of woe. Although he travels from doctor to doctor for years, only the symptoms are dealt with.
Still a taboo
"Doctors are very reluctant to speak to you about it," reports Maik. Despite decades of campaigns, HIV is still a taboo. The issue of HIV still surrounds a haze of gay sex, promiscuity, infirmity and death. Asking a heterosexual father about the possibility of an HIV infection is not easy - it implies that he may have sex with men. But even with Maik, who speaks openly about his homosexuality, no doctor wanted to think about AIDS for a long time.
He himself did not grasp the topic with his head either: "For years I suppressed the fact that the reason for my problems could be an HIV infection," he says. Diarrhea? Fungal infections? Weight loss? After all, something like that can affect everyone. He skipped the earlier annual HIV test appointments when his partnership broke up.
The fear of the diagnosis
“The fear of the diagnosis was huge. I believed that if I got HIV my life would be over, ”he says. Even then, HIV was no longer a death sentence. "Nevertheless, for me, an infection meant that I could no longer realize my dreams, that I would never find a partner and lose my job."
In fact, modern HIV therapeutics enable those affected to lead an almost completely normal life. With them, the viral load in the blood can be pushed down so far that no one can become infected. "Many people do not know that anything is now possible with HIV: even conceive and give birth to children naturally or enjoy sex without a condom," confirms Holger Wicht.
Act as early as possible
Even less known, when you start treatment makes a huge difference. By the time the first symptoms appear, the virus may have done some damage.
"The idea that we used to have that HIV slumbered in the body for years is not true," says Dr. Armin Schafberger from the German Aidshilfe in a NetDoctor conversation. "HIV cuts a notch in our immune system - the more time passes, the deeper it gets," says the doctor.
HIV does not slumber
Even if the patient does not notice anything himself: His immune system is constantly occupied with the infection from the start. The result is a permanent inflammatory reaction. Certain types of cancer and cardiovascular diseases are therefore more common in people infected with HIV.
If the number of immune cells continues to decrease, stubborn infections appear. In some patients, the virus manifests itself in the body in unspecific complaints such as weight loss, night sweats, and exhaustion. Especially with patients who do not belong to any risk group, HIV is only thought of last. "In the case of somewhat older women, for example, this is quickly pushed back to menopause," says Schafberger.
AIDS - the last stage before death
Finally, the patient enters the actual AIDS stage: the virus has cleared the way for so-called AIDS-defining diseases such as cytomegaly, tuberculosis, special pneumonia or toxoplasmosis. These are all dangerous germs that otherwise occur very rarely. In some patients, the nerves become inflamed as well. The consequences can be hearing loss and blindness. The HI virus can also attack the meninges in the late stages and cause encephaly, which can result in permanent disability or even death.
Test when in doubt!
“The tragedy is that such processes could be avoided if tests were carried out and treated in good time,” says Holger Wicht. “No AIDS for everyone!” Is therefore the motto of a campaign by the German Aids Aid. With a package of measures for early detection, the aim is to ensure that no HIV-infected person in Germany will reach the AIDS stage by 2020.
Even if it takes some effort: Anyone who has had risky sex should raise the issue with the doctor on their own initiative, recommends the physician Schafberger. As a rule, the HIV test is negative, then you can breathe a sigh of relief. If it turns out positive, you can stop the course. Holger Wicht also emphasizes: "What people fear - namely, that they will become seriously ill - only occurs if one does not get tested and treated."
Salvation from the near end
For Maik, the rescue comes one day in February 2008. His gastroenterologist finds pathogens in a stool sample that are typical of a very advanced HIV infection. "We should test that," he says. Shortly afterwards, Maik finally receives a diagnosis - shock and relief at the same time.
Then things go uphill rapidly: he receives immunoglobulins that restore his immune system and begins therapy against HIV. "A week later I would have been dead," he says today. Instead, the engineer is back in the office a month later. He was spared permanent damage. He tolerates his daily tablet well. Maik is certain: "If I had been better informed - I would have had a test much sooner."
You can find more information about the campaign: "No AIDS for everyone" here:
https://kein-aids-fuer-alle.de/
