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Child dies of ‘herpes’ – but not herpes simplex

BBC South East reports that “Raffy Holliday, from Deal in Kent, tested positive for the HHV6 strain in hospital, and he died in March,” but this was not herpes simplex: parents don’t need to be worried about this.

The reporters don’t explain that HHV-6 – commonly called roseola – is not ‘herpes’ in the usual sense. When anyone says ‘herpes’ people think of genital herpes. The reporters didn’t check to find that there are 9 different conditions caused by 9 different herpes viruses. Other well-known herpes viruses are chickenpox (HHV-3) and glandular fever (HHV-4).

Infections with human herpesvirus 6 (HHV-6) are very common. In fact, almost 100% of us will have encountered it. There are two types of HHV-6 (A and B) and the one Raffy had will have been HHV-6B, not herpes simplex. Roseola is common childhood disease expected to resolve without treatment. The child may have high fever for a few days, and a mild skin rash may develop. Sometimes, paracetamol or ibuprofen might be given.

But Raffy had leukemia. This means his immune system was not able to function in the normal way. Parents of children (who do not have such a serious condition) do not need to worry if their children develop roseola. They will be well in a few days or so…

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Mothers having C-section – two deaths

“Mothers should not be alarmed by these tragic rare cases – a repeat is almost impossible”, says Herpes Viruses Association

For a woman to be infected with herpes simplex during a Caesarean-section is one of the rarest possible medical accidents. For it to happen twice in the same geographical area required a unique set of circumstances that are unlikely to be repeated. Lessons have been learned and treatment guidelines will be updated to prevent another similar tragedy.

The Herpes Viruses Association was shocked to hear that two women died from internal herpes simplex infections following disease transmission via C-section. We extend our condolences to the families affected.

Herpes is common – for most it is a minor skin condition

Herpes simplex (HSV) infections are common and in almost every case are caught during direct skin on skin contact. It is almost unheard of for these viruses to be caught during any kind of medical procedure and strict protocols are adopted to prevent this.

Herpes simplex is universal. More than two thirds of the world’s population carry the most common type, known as HSV-1[1] which places it close behind chickenpox as an almost universally acquired virus in humans. The other type is HSV-2.[2] Either type may be caught facially (cold sores) or genitally (genital herpes). It is also possible for either type to infect the hand or finger. This is called a herpetic whitlow and is seen less often than infection in other parts of the body.

More than half of pregnant women will have come into contact with HSV-1 before
conceiving. Their babies, from month 7 onwards, will acquire all their mothers’ antibodies which will protect them during birth and for several months.

If a herpes simplex infection is suspected in either a mother or her baby, prompt use of antiviral treatment should ensure a positive outcome.

In the tragic cases in Margate and Ashford, Kent, neither woman had a prior HSV-1 infection and therefore neither of them had herpes simplex antibodies. This made them both vulnerable to the accidental internal acquisition that turned out to be fatal.

Why was a common cold sore infection fatal in these cases?

Herpes simplex is normally a virus that infects skin and nerve cells. Typical symptoms are painful skin blisters and sores that make diagnosis straightforward. These women were infected internally, so there were no observable symptoms, and the virus was able to spread without affecting the skin.

Without the telltale blisters on the skin, herpes simplex was not suspected, and the antiviral treatment was not given.

Future improvement to guidelines

The Herpes Viruses Association is pleased to learn that the Royal College of Obstetrics and Gynaecology is going to recommend treatment with antiviral medication for any ‘mysterious’ illness in mother or baby. This is a highly safe precaution and should prevent any similar tragedy in the future.

– ENDS –

NOTES TO THE EDITOR

The Herpes Viruses Association exists to promote better mental and physical health with regard to the family of herpes viruses.  Its aims are:

  1. To provide information to the public, to medical professionals and to the media.
  2. To encourage the development of new treatments for herpes simplex.
  3. To tackle stigma and the unnecessary trauma associated with the condition.

References:

1. WHO report on herpes simplex type 1: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0140765 2.  WHO report on herpes simplex type 2: https://www.scielosp.org/article/ssm/content/raw/?resource_ssm_path=/media/assets/bwho/v86n10/a17v8610.pdf

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Does the shingles vaccine help with herpes?

The question “does the shingles vaccine help with herpes simplex” is perhaps relevant. Herpes zoster is the medical name for shingles, or it can be called humanherpes virus ‘type 3’. It is enough like herpes simplex, that it is treated with aciclovir or other antiviral drug. If you do think you may have shingles, it is important to get the drug for shingles very quickly, within 3 days. Only prompt treatment will help control the duration of symptoms.

Shingles is the name for a recurrence of chickenpox (herpes varicella). Following infection, chickenpox virus remains in the body, hiding in neural ganglions. Shingles can happen when you are run down, ill, stressed, or following a physical or emotional trauma (a fall or the loss of a loved on). Although chickenpox affected the whole body, luckily shingles just appears in one small area, usually the back or chest. See more on our Shingles Support Society website.

A vaccine for shingles, Zostavax, is been provided to people in their 70s for the last ten years. This is because in older people the is a greater risk that nerve pain will continue after the shingles blisters have cleared up. So plenty of people who get repeated herpes simplex symptoms will have benefitted from Zostavax. If it does help control herpes simplex virus, these people will have noticed that their recurrences have stopped.

Some people have found it helps

And we have indeed had people tell us that following the shingles vaccine, their herpes simplex symptoms are noticeably less frequent (or have stopped). Now, that could just be coincidence. We know that over time, recurrences are expected to become less frequent. But it is nice to think that the shingles (herpes zoster) vaccine is helpful against herpes simplex.

Let us know (at [email protected]) if you notice that you are having more outbreaks since Zostavax, or fewer…

In any case, if you are offered the shingles vaccine – take it! Covid vaccines

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Herpes helpliners’ talk at conference

Herpes helpliners were invited to talk to the doctors at the annual conference of the British Association of Sexual Health and HIV in Sheffield in 2022.

Our topic was “How to help your patients: you need to de-Google them.” The talk was presented as a chat between two helpliners. You can see the text we prepared to train ourselves – and the slides we used at the same time on the attached page.

Naturally, on the day, we didn’t read from this script. But because we had rehearsed several times, the talk followed this flow…

Helpliners talk to doctors about herpes
Helpliners talk to doctors about herpes at their conference in 2022.
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Eyesight: getting a ‘gritty feeling’ could be a ‘serious’ eye condition – do not ignore

A story in the Daily Express on 2nd August 2022 described how a facial infection can reactivate in the eye. This ocular herpes needs to be treated.

“Ocular herpes usually occurs when a previous infection with the virus reactivates and spreads to the eye. Most people will catch the herpes simplex virus as children, but will not notice it as there are often no symptoms.”

Continue reading Eyesight: getting a ‘gritty feeling’ could be a ‘serious’ eye condition – do not ignore
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How herpes got its stigma

“It is easier to fool people than to convince them that they have been fooled.” – Mark Twain

You can download a PDF of this article.

An article by Nigel Scott

For anyone in the twenty first century it is hard to believe that there was a time when ‘herpes’ was not a stigmatised and feared condition. But this is true. Less than forty years ago genital herpes was largely ignored. Newly diagnosed patients were not made to feel that a common skin condition had just ended their chance of having future relationships.  Doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately. In the early 1980s things changed. How and why did this happen?  

Continue reading How herpes got its stigma
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Trial volunteers [TRIAL NOW CLOSED]

Last year, our trial volunteers took part in a scientifically run placebo-controlled, double-blind trial to see if the ‘EBDT powders’ from Vimuneco would improve their immune response so that they stopped getting outbreaks. The trial showed it had a minor effect, but the powders were very hard to use: they had to be absorbed under the tongue.

New trial

The company has reformulated the treatment as a liquid and there are still some places still available on the trial, so you can take part. You won’t know if you are using the placebo or the ‘real thing’ during the trial. But you won’t miss out as afterwards you will be offered the ‘real thing.’Vimuneco's tree

Send an email to [email protected] if you would like to take part.

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Cold Sore Paradox Exposes Absurdity of Herpes Stigma – by Anne (guest blogger)

The drop in the number of people who have caught a cold sore in childhood has led to an increase in genital herpes type 1 (and an increase in symptomatic – noticeable – cases of type 2 as well). Yet while few would view a cold sore on the lips as a problem, the exact same sore on the genitals is perceived as distressing by some. This inconsistency makes no sense. And it shines a spotlight on how ridiculous it is to spend even a moment’s thought on herpes simplex, wherever it may be.

When my first boyfriend’s cold sore on his lips was passed onto my genitals, it was definitely not the way I had imagined my first month of sexual activity to turn out. Nevertheless, I soon decided it didn’t make any sense to care about this. Even the shocking amount of disinformation and unhelpful pieces of advice I found on the internet did not change my mind. Amid all the nonsense, I also found some important bits of information that helped me dismiss the idea that I should think about this in any other way thank the way that my boyfriend thinks about the type 1 herpes on his face. Frankly, one wouldn’t think one would need an argument for that. However, remembering how desperate I was to find some lines on the obvious truth that this does not matter, let me explain anyway, for anyone needing confirmation of this self-evidence.

Firstly, the majority of people have herpes simplex, type 1. This means that they already have immunity against this virus and cannot get it on their genitals. If you have genital herpes type 1, there is a good chance your partner is immune to catching it.

Secondly, even if your partner does not yet have type 1, it makes no sense fretting over the site of your type 1. The majority of people could give someone genital herpes. If anything, they are even more likely to do so. Herpes type 1 does not like the genital region and is less likely to recur there, than when it is on the lips. Asymptomatic shedding is also lower than when on the lips, and is rare after the first year. Assuming that people have oral as well as vaginal sex, people with cold sores are more likely to give someone genital herpes type 1 than the people who know they have it on their genitals.

Knowing this, I have never felt the need to share the fact I have this wildly common virus with anyone. Doing so would have been absurd. No one ‘discloses’ that they get facial cold sores. It has not affected my relationships, or my sex life. That is not to say that you shouldn’t talk about it with a significant other if you feel like it  – but it is nonsensical to feel like you should.

As you can see, worrying about HSV-1 transmission is senseless. Beyond that, it begs the question why some people are so focused on whether or not a virus will be caught on one site rather than the other. The obsession with not getting cold sores on your genitals while being fine with them on your face is strange. Cold sores are a minor skin irritation, and I’m not sure why anyone would prefer them in one place rather than the other. The herpes stigma is ridiculous. It’s time to debunk it.

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Pointless to ask about Love Islanders’ herpes

Most people don’t know that they have genital herpes. [1]

So, asking Love Island contestants about their herpes status is pointless. Herpes is common – for most it is a minor, undiagnosed skin condition.

You can see the full page of information here.

As I was creating the media release, I found myself thinking: are the doctors advising Love Island producers so ignorant about herpes that they don’t know that most people with it are unaware of it? (We know that for people with a bad primary infection, or frequent recurrences, that this is a surprise – but it is a fact that: most don’t have anything noticeable.) If we accept that the doctors do know, then perhaps the questions they ask contestants are to protect the producers and not really to find out who has/has not got herpes:

25. Do you currently have a cold sore or genital ulcer?

26. Have you ever had cold sores or genital ulcers or been diagnosed with genital herpes?

27. Have you ever taken medication for cold sores or genital ulcers?

By asking these questions, they are performing ‘due diligence.’ The questions will pick up one person in three who has the virus, and who has been diagnosed. But it won’t pick up the two out of three with the virus who get symptoms, but these are too mild to have been diagnosed. So it will not prevent transmission from the people who don’t realise the ‘little thing’ they have on their skin is herpes.

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Herpes medication and the COVID vaccines

We are getting a lot of calls about herpes medication and the COVID vaccines. (And see lower down for the Covid vaccine and a herpes simplex outbreak.)

Even if have a herpes outbreak, can I have the vaccine?

Short answer: Yes you can.

Longer answer… A herpes simplex outbreak (a ‘cold sore’) is minor problem for the body to deal with. It can certainly manage to control the outbreak and deal with the new ‘flu vaccine’ that is the Covid vaccine.

It is generally said that being unwell is meant to be a trigger factor for an outbreak. This is where the names cold sores or fever blisters come from – people noticed they pop out when a person is unwell. Most interestingly we know of people who get a lot of outbreaks but no colds or flu, while people around them are getting these ‘normal’ illnesses.