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  • Writer's pictureRemi


Illustration @mehdi_ange_r (INSTAGRAM)

Today I have decided to share with you part of my medical journey since I became HIV positive.

First of all, you should know that when I was diagnosed with HIV, I was in the process of seroconversion.

What is seroconversion? I'm not going to explain all this to you as if I were a doctor, because I'm not, but rather in my own words.

Seroconversion is the stage where the virus is gently settling in your body. In fact, at the very beginning of the infection, I was very sick with all the symptoms that mononucleosis can give. I had an HIV test at that time which was negative because it was too early to detect it.

To come back to my story, my case was taken over by a new doctor, the one that the testing centre had advised me to have. At the same time, I also had to be referred to an infectious diseases specialist at the Bichat hospital in Paris.

As I had been diagnosed very early in the development of the virus, at the height of the PRIMO INFECTION, the professor who was following me invited me to join a research study group to which I am still attached today. Indeed, I told myself, even at the time, that even if I was infected, I might as well help science to progress. A doctor takes care of me specifically for this research group in addition to the professor. So I have two privileged interlocutors.

I don't have the same relationship with these two doctors: one decides on my treatment (the infectious disease specialist), the other is more involved in personal matters and my lifestyle. I obviously have a very different relationship with this doctor, more intimate in the end.

By the way, for the anecdote, this doctor told me during my last appointment that I would not be dealing with her anymore because she was going to have a baby and I didn’t react very well at first. I'm lucky enough to be supervised by very competent staff with whom, after ten years, I have a relationship of trust, so yes, I admit that the news made me a little anxious. But I still had a positive hope after the announcement... I think...

I met the infectious diseases professor first. For this first appointment, my whole family (whom I had informed in the meantime, but I'll come back to this episode later) had accompanied me to the hospital. I went into the office alone. She explained to me in detail what I had, what was going to happen and, to summarise, that I would start treatment immediately, even though my tests were good. I must admit I was surprised as my GP had told me that treatment was often not started for years.

I wasn't ready for this at all, but did I have any choice but to trust the Professor? Not really.

Why treatment? There are two factors to control when you have HIV.

The viral load, which is a unit of value to quantify the virus in our cells. The aim is to make it undetectable. Once you are undetectable, and have been for long enough, you are said to be unable to transmit the virus because it is "controlled". I'll come back to the concept of undetectability later in another story because it's much more complex than it sounds.

The second important point is to check whether there are enough CD4 cells in the body. CD4s allow the immune system to defend itself and therefore to avoid contracting so-called "opportunistic" diseases.

To recap: the lower the viral load and the higher the CD4 count, the better.

There is obviously a lot of other data that is verified, but I am not a doctor.

For the choice of treatment, the doctor decides according to you. For me, I started with Atripla. One capsule a day to be taken at a fixed time. It sounds a bit crazy but yes, my treatment is no more restrictive than for a woman taking the pill for example.

Psychologically for me it was around this time that I really understood that I was "sick" (I put it in inverted commas on purpose, because the treatment makes the infection real).

This was followed by two/three months of very unpleasant side effects: jaundice, nausea, diarrhoea, very restless nights and completely psychedelic dreams (that was pretty fun), intolerance to alcohol (but the problem has since been resolved, fortunately for my social life), etc. In the long term some side effects remain, notably on my body fat distribution which is completely different and weight gain. I'll probably come back to this subject later as well, as it's dense enough to be a separate story.

One of the consequences of taking the treatment was also depression. It took me a few years to get out of this state, but today it is far behind me and that is the most important thing. I will probably also talk about my suicide attempt in the future, but I think I have a thousand things to tell you first.

I have changed treatments twice since the Atripla. I was briefly on Stribild, and at the moment I'm on Genvoya. I had quite a few side effects when I started the latter, much to the surprise of my doctor as the molecule was the same as the previous treatment.

After two months, the effects disappeared. And today I tolerate it perfectly.

For ten years, my viral load has always been undetectable. My CD4 count is constantly increasing (slowly, but it's still increasing).

There’s a chance that I’m a special case but I don't think so. I'm not talking about people who live in countries where access to care is more complicated, I know I'm very lucky. I can assure you that most of the people around me who have just learned through the very existence of this blog that I am HIV positive were very surprised.

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