A follow-up to my own experience
What happened after sharing my story
After publishing my first article about Low Dose Naltrexone, almost two thousand people read it within a week. Many reached out, many shared their own stories, and many responded with hope, curiosity, fear, confusion, and sometimes frustration. I also read through dozens of comments in the long COVID groups I am part of. That has opened my eyes in a way I didn’t expect. LDN works incredibly well for some, like in my case, yet for others it does nothing at all or even makes things worse. That question kept circling in my mind. Why?
The reactions that made me pause
When you read hundreds of personal stories, a few patterns start to appear. Some people describe a dramatic improvement within days. Others have no response. Others crash hard. It left me wondering how the same medication could create such different outcomes. And while I am not a doctor, I do have lived experience, a background of long-term viral issues, and a system that has been through years of post-viral chaos. When I looked closely, something became very clear.
We do not all have the same “long COVID”
Long COVID is not a single illness. It is a collection of different underlying disruptions that all carry the same name. And that is where the difference lies. LDN mainly works through the endorphin and opioid receptor system. It helps the brain and immune system communicate again. That means people whose nervous system is “stuck” or whose immune system is dysregulated often respond well. But many people in the groups have underlying conditions that flare up because of viral fragments. A huge portion describe symptoms that match Epstein-Barr reactivations and other herpes-family viruses. If the root of their illness sits somewhere else, LDN may not be able to do what they hope it will do.
My own background matters too
In my case, my long COVID symptoms were closely tied to my nervous system. I could not absorb endorphins properly. That is why the moment LDN started helping, the changes were instant and profound. My sleep deepened. My anxiety disappeared. My body softened. My creativity came back. My emotions came back. But someone whose system is dominated by viral reactivation needs a different kind of support. It is not that LDN “fails.” It is that it is not targeting the right mechanism for them.
When the darkness becomes overwhelming
There is something else I cannot leave out. In these groups, I see people writing things that break my heart. People who feel so hopeless that they are thinking about ending their lives. Some have already spoken to their families about it. I know how dark that place can be because I have felt moments of it myself. If you are reading this and you recognise that feeling, I want to speak to you directly. You are not alone. You are not a burden. You are not beyond saving. Reach out. Talk to someone today. Message a friend or a family member or even someone in the community. Do not carry this alone. There is hope. There are new treatments coming. There are people who will stand next to you, even in the darkest hours. Stay. You deserve to see yourself come back.
Why access to LDN is still a challenge
Another thing I notice is how many people cannot even try LDN because their GP refuses to prescribe it. It is still considered off-label, and that creates unnecessary barriers. People are desperate for relief, yet they cannot get the medication that might help them. It is painful to watch. The truth is that we need more awareness, more education for medical professionals, and more compassion for people who have been sick for years. No one chooses this illness. No one chooses to live in survival mode.
Where this leaves all of us
What I see now is that LDN is not a miracle cure. It is a tool. A very powerful one for the right person. But we all come with different histories, different viruses, different traumas, different immune systems, and different paths through long COVID. If LDN works for you, that says something real about the cause of your symptoms. And if it does not work, it does not mean the end. It simply means your system needs another route. There is more to discover. More to heal. More to try.
We heal forward together
This is why I share my story and why I write these follow-up pieces. I want you to feel supported. I want you to feel seen. And I want everyone in this community to know that we are stronger when we speak openly and honestly. If you take one thing from this, let it be this: you are not alone. We stand together. And there is hope, even on the days you cannot feel it. Stay with us. Healing is slow, but it is real. And you deserve every piece of it.
Arjan Eikelenboom ❤️
arjan eikelenboom 