Hey everyone!

I thought that it might be useful to draw up a list of consultations and examinations to be preferred in the event of suspected pericarditis, or even confirmed pericarditis. All this, as always, according to my own experience and my journey to cure my pericarditis. I am not a doctor and I have no medical training. But here is a list that may be able to tell you what leads can be followed to obtain the diagnosis(es) necessary for better management of your pericarditis.

0/ PREAMBLE

I start from the principle, and I don't think I'm wrong, that each specialist we consult will examine the patient from the angle of his specialty and only from that angle.

For my part, I started from the idea, or rather from the erroneous belief (but undoubtedly very widespread), that any doctor was going to examine me while asking himself questions, and if necessary, refer me to another doctor capable of complete my diagnosis or treat me. Even, that these doctors were going to meet and discuss my complex case to try to determine precisely what is wrong, why I am sick (exams to be done) and what would be the best possible therapy.

It is not so! Rarely do doctors refer to another specialist. They won't bother to report or even help you.

This should be the role of the family doctor, who is often looked down upon by his colleagues and is certainly not familiar with the most complex cases.

In short, we sometimes find ourselves like a pawn in the middle of a game of egos.

So might as well know it and take the lead.

Take control of your medical records. It's about your body and your life. And besides, you have no choice! So sorry about that!

1/ CARDIOLOGY

The pericardium is the envelope that surrounds and protects the heart. More precisely, it is located between the heart and the lungs, so these can also be affected (see point 2).

Nevertheless, cardiologists are specialists in the heart and not in the pericardium. There are no "pericardiologists", and that's a shame because the pericardium obviously does not interest our dear cardiologists very much. I have lost count of the number of cardiologists who have told me that they have never seen pericarditis (even after 20 or 30 years of practice). Hence my fears that many patients remain undiagnosed because it is not that rare. But even when you are diagnosed, you are not sure of being properly taken care of, given the lack of knowledge and the lack of practice and useful experience of these cardiologists.

If possible, therefore, try to find a cardiologist who specializes in pericarditis. There are, indeed, sub-specialties within medical specialties and, you are rarely told, but you have to find the right specialist for your pathology. The medical secretaries who make the appointments are often better informed than the doctors themselves about who does what.

Tests for pericarditis:

• Electrocardiogram (ECG): test to record the electrical activity of the heart, it can be normal even in the presence of pericarditis because it only measures abnormalities on an already significant effusion.

• 48-hour Holter ECG: records cardiac activity for 48 hours, in particular makes it possible to detect extrasystoles and other anomalies that do not necessarily appear during a classic ECG.

• Echocardiography: allows to see an effusion if it already has a certain importance, but not a dry pericarditis.

• Cardiac MRI: certainly the most important test for detecting pericarditis. In general, a contrast solution such as gadolinium, is injected and this makes it possible to measure the thickness of the pericardium and to check that there is nothing else (such as myocarditis which affects the heart).

• Scanner: allows to see pericardial calcification when pericarditis has been chronic for a long time.

As always, it is better to have a radiologist and a specialist able to read these test results, because the diagnosis depends on a correct reading. It is not uncommon to see diagnostic errors that are later revealed by another practitioner.

In addition, the most necessary and expensive examinations (such as cardiac MRI) should be done for dry pericarditis or pericarditis that appears more minimal because it does not appear on ECG or ultrasound, then that they are no less serious when they become chronic.

2/ PNEUMOLOGY

One of the possible symptoms of pericarditis is a dry cough and difficulty breathing because the pericardium is close to the lungs. In addition, an infection in the lungs could coexist. It is not uncommon for a patient with pericarditis to be sent to a pulmonologist for a chest X-ray, or a CT scan of the lungs, or even respiratory examinations. It is always prudent to check, especially in the presence of a virus or coronavirus, for example.

3/ INFECTIOLOGY

When pericarditis becomes chronic (beyond 3 to 6 uninterrupted months, or in the event of recurrences), it is useful to seek the cause of the pericarditis. Often there is another underlying disease that is causing the pericarditis to persist. Treating this disease could then make it possible to treat pericarditis. The infectiologist will prescribe a complete immune assessment, namely a long list of blood tests including viruses, bacteria (such as Lyme), autoimmune or rheumatological diseases (lupus, rheumatoid arthritis, Mediterranean family disease), etc. This is a very important assessment if you want to know more about the underlying cause of pericarditis and be directed to the right specialist.

4/ RHEUMATOLOGY

Another way to see if there is an autoimmune or rheumatological cause is to see a rheumatologist directly. Each doctor having his specialty, he can only prescribe certain examinations and even certain medications. For example, Anakinra/Kineret is a drug initially prescribed for rheumatological conditions, so it must be prescribed by a rheumatologist (not a cardiologist) for pericarditis in some countries. This is a new therapy for pericarditis and I don't know the situation, but I hope it can evolve quickly.

5/ LYME

Lyme disease is a complex and highly controversial case. There are specialized doctors who do a very good job without being fully recognized. I also see more and more people going abroad, especially to Germany. It may be useful to contact a patient association in your country for a list of doctors specializing in Lyme and its co-infections.

BONUS: WHY GET ALL THESE DIAGNOSTICS?

• Medical reasons: without diagnosis, no adequate treatment, no valid support. The sooner we have a good knowledge of the cause(s) of the disease, the more likely we are to be able to cure it. It can take years even with the right treatment.

• Statistical reasons: without diagnosis, there are no statistics and therefore no medical research on the illness or illnesses from which one suffers. This may seem anecdotal. However, I think that the crux of the problem of the quality of medical care that we receive today is at this level. It takes a lot of money to launch a research program and if the statistics are not sufficient, it will remain a “rare” and “unrecognized” (and badly treated) disease.

• Professional and/or administrative reasons: Everything depends on the evidence that you can bring to the authorities concerning your state of health. Without these famous medical reports to add to your administrative file, you have no proof of anything. And therefore, no right to aid or support from the said authorities.

In conclusion, we definitely live in a ruthless universe. And when we talk about "warriors", this title is really not usurped.

BE MASTER OF YOUR MEDICAL RECORD. THIS IS YOUR BODY AND YOUR LIFE.

Pericordially yours,

Vali