A Most Frustrating Infection

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Trying to get whooping cough diagnosed can be a nightmare

I am a retired GP with an interest in whooping cough and I have a website that has been helping people to get diagnosed for 20 years.

I continue to get emails that say the same thing. “I am sure I have whooping cough, but my GP says I can’t have, and won’t do a test.”

I have enormous sympathy with GPs, being one myself. We are expected to have an answer for every question and encyclopaedic knowledge. We have just 10 minutes to deal with complex issues that are still swirling round in our head when the next cheery patient walks in looking a picture of health.

I had another of those emails this week. It was from Suzanne (not her real name). She is in her late thirties and she has a daughter of 11 and lives in the UK. Suzanne had been in close contact with a niece several weeks ago who had not been immunised against whooping cough and who was in the throes of a month-long cough that had all the characteristics of whooping cough (violent attacks of coughing, retching and inability to catch breath several times a day and normal between attacks). Her GP had thought it was a viral infection but took a swab for the lab. 

I don’t expect GPs to be aware of all the testing details for whooping cough. It is infrequently done, and the methods keep changing, but whooping cough is a notifiable disease and you might think they could get a member of staff to ring the lab or the local Health Protection Team to find out. If they had done that, they would have been sent a kit for oral fluid antibody testing. Or they might have been asked to send a throat swab in a dry tube, if it was within 3 weeks of the start of symptoms for PCR testing. In this particular case it seems the opportunity for confirmation then had been lost, but there is still plenty of time for the oral fluid test even now.

Suzanne says, “I had close contact with my niece and experienced a whole textbook case of whooping cough. I felt this cough was like nothing else I’d ever experienced before. However…in-between bouts of terrifying coughing I would actually, apart from feeling exhausted, feel okay…although I coughed during the day occasionally in a very intense way the cough till you’re sick and can’t breathe, usually happened in the evening/night. I also embarrassingly was incontinent with this cough. It was a cough like no other I’ve ever had with flu etc. I went to the doctor who listened to my chest and felt that there was nothing on my chest and that I was too well to have whooping cough. She said ‘If you had whooping cough it wouldn’t just stop during the day time I’d expect to see you experiencing it right now really in front of me, it’s a persistent cough’.”

Quoting again from the email, “I showed her a quick YouTube clip of an adult with a whooping cough whose breathing and whooping sounded a lot like mine who was also throwing up at the end and burping and belching another things I was doing at the end of each spasm. She scarcely looked and was very irritated with me although I was polite and probably too calm in describing to her in detail how horrendous and different and terrifying and awful this cough was during a spasm but that I would have spells in-between when I was feeling well. My primary concern was identifying what I had especially as my sister in law had a days old baby and I did not want my own daughter to catch it. She said my daughter’s vaccinations would cover her.”

None of what Suzanne’s doctor said was true, but a blood test was arranged to look for a raised white cell count. When it came back normal she was told that meant it wasn’t whooping cough. Again, all quite untrue, but no doubt based on the doctor’s beliefs about the nature of whooping cough which was probably what was taught or read about in medical school or experienced via sick babies, who are the ones who get it really badly and can die.

I want to say again that this GP said the same as the great majority of GPs would say in the same circumstances, yet it was completely wrong. GPs simply do not have the ability to keep up to date with the management of relatively rare diseases that do not seriously harm their patients. I have no doubt I have often said equally mistaken things. The reality of life is that it is often better to appear in control than admit ignorance when trying to be an effective doctor.

Three quarters of whooping cough cases are in teens and adults. It causes bouts of  violent choking coughing with retching, on average about 10 times a day, often worse at night-time. Between attacks everything is fairly normal. It is not associated with malaise or fever, but many have a general tiredness. It lasts from 3 weeks to 3 months (‘The 100-day cough’), but the average is 6 to 7 weeks.

The above figures relate to clinically recognisable cases. Many cases are mild and go unrecognised. Such cases are numerically probably greater. Although they are harbouring the bacteria, it is not known how much of a risk to others these subclinical cases are. 

Research has shown that possibly 7% of all acute prolonged coughs are associated with Bordetella pertussis, the bacterium that causes whooping cough. Some surveys have found an even higher proportion.

Unlike most microorganisms that cause coughs, whooping cough does not cause inflammation, so white blood cells are not increased. It is different in babies, in whom pertussis toxin can cause a massive rise in white cells, which clog their lungs and deprive their brains of oxygen.

Now that effective whooping cough immunisation has cut cases right down in children, we realise it still occurs in teens and adults and probably always did. There are several older writings to support this. Modern investigation techniques have told us the protection obtained from the natural infection only lasts about 15 years. The current vaccines may only protect for 5 to 10 years. But what we now know is that infection can occur without symptoms and boost our immunity. It may be that phenomenon that prevents most of us from getting it.

I have described the first frustration, caused by your GP denying you have whooping cough, but even worse perhaps is the frustration of suffering it………..because there is no treatment. It is a rather circular problem. If there is no treatment and everyone gets better, it doesn’t matter whether your GP diagnoses it, one could argue. There is a lot of truth in that, but there are some useful things that can be done. 

Being able to confirm the diagnosis means the patient knows they are going to recover and that it is not the fatal disease it feels like.

If the patient is still infectious (at least the first 3 weeks), an antibiotic can clear it and allow the patient to mix. Otherwise it is waiting the 3 weeks. Antibiotics in the incubation period are believed to be preventative. In the early symptomatic phase, they may shorten the illness.

How do we tackle the out of date GP problem? It is an issue for us all, and doesn’t just relate to whooping cough. That is just my hobbyhorse. The answer is definitely not, “See a specialist”. I have found them just as bad at diagnosing whooping cough. We have to recognise we are all out of date in some way or other, it is part of modern rapidly changing life. We have to help ourselves as far as possible, be sure of our facts and gently and politely suggest what you believe the right course of action. Most doctors trained nowadays understand they can admit ignorance without being ill judged, provided they rectify it sufficient for the need of the patient. I have noticed a distinct change over the 20 years I have been helping patients to self-diagnose on my website. More and more doctors are realising the true nature of whooping cough. It only takes the experience of one confirmed case to bring about the change.

I have one big tip. If you think you have whooping cough get somebody to video a coughing spasm on your smartphone. Seeing is believing, and it is impossible to describe a paroxysm adequately in words.

There is loads of information and a self-diagnosis guide on the website, but the most up to date information for GPs was published by Public Health England in 2018, and there is a paper from an international expert panel on diagnosing pertussis associated cough.

 

Douglas Jenkinson

Registered medical practitioner in the United Kingdom since 1967. Worked in Africa in the 1970s. Spent most of career in General Practice in Keyworth near Nottingham. Was also a part-time lecturer in General Practice at Nottingham Medical School. Became engaged in post graduate education and research into asthma and whooping cough. Acknowledged expert on clinical whooping cough and awarded doctorate after many publications.

This Post Has 3 Comments

  1. I saw in the news that pertussis is spreading in Chicago because pediatricians are reluctant to diagnose. Why would that be? I had the same experience that my pediatrician never suggested it. Only urgent care thought to test

    1. I have just thought of another reason. A vaccine containing pertussis alone does not exist. It is always combined with diphtheria and tetanus. So an obvious solution to many of the questions that arise after a diagnosis of whooping cough, which would be to give contacts etcetera a shot of pertussis vaccine, cannot be done because the diphtheria and tetanus elements frequently make it too complicated and raise more problems than it solves.
      The reason there is no single pertussis vaccine is political and commercial I believe. There is no medical reason why it should not exist. It used to.

  2. Good question and it is true. I am not sure I can give a complete answer but here are some of the reasons I can think of.

    Lack of awareness of the fairly accurate and reliable PCR test that is useful in the first 3 weeks. In some countries, even the USA, there might be a lot of work involved to find a lab that does it.

    After 3 weeks a blood or oral fluid test is required and that might take a great deal of organising to find the right lab.

    In the USA local health authorities seem to have different advice for doctor from the CDC which aught to be in charge, so there is conflict and confusion. (In the UK the authorities speak with one voice and that is a lot easier).

    Doctors are supposed to notify pertussis to the relevant authority. It seems that very few do this. It suggests to me that the bureaucracy involved might be problematic. For instance, questions about tracing contacts etc.

    Most doctors know so little about the detail of whooping cough at different ages that a lot of work would have to be undertaken to swot up on all the knowledge required to inform the patient properly.

    Doctors usually give the shots to prevent it. To diagnose it means the shots were a failure and would require detailed explanation that might raise other uncomfortable questions.

    Diagnosing it causes massive confusion for schools about what to do about exclusion and quarantine. Taking action is good in theory by in practice doesn’t seem to make a noticeable difference.

    There is no useful treatment for it so no good business wise.

    There is only one way of managing pertussis and that is a high level of immunisation. I would imagine saying that it likely to lead to headache inducing conversations.

    It would be great to hear some practising doctor’s comments other than mine.

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