Last reply 7 months ago
EB virus-specific T cell therapy

Dear all,

I have been recently diagnosed with PPMS and during the past months I have been trying to get used to the worsening symptoms, trying to learn how to live with the disease. I have also been looking for some information on possible future treatments, on stem cell therapies in particular. I ran into a recent article on a treatment that have been used to treat some cancers induced by Epstein Barr virus. The treatment is called Epstein-Barr virus-specific T cell therapy: https://insight.jci.org/articles/view/124714
According to the article, the treatment might be able to significantly slow down the progress of PPMS, at least in some cases, and it appears to be rather safe as well.

I would therefore like to know if anyone on this forum has experience on this treatment. Did it work? Are there private clinics in USA or elsewhere that would offer this treatment?

Many thanks in advance for advice and comments!

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stumbler
7 months ago

Hi @nevergup and welcome.

This trial was reviewed by some respected researchers in London. Here is their view :-

https://multiple-sclerosis-research.org/2018/11/ebv-immunotherapy-works-in-ms/

It’s still early days for this treatment…………


nevergup
7 months ago

Hi stumbler, many thanks for your comment and for the link! It is still an open question whether this will really help ms-patients, but I think the treatment has been used for some time to treat cancer. I found an article from 1998 referring to it. This is why I’m hopeful that it might be possible to try it somwhere. If it’s affordable is another matter. I’m also interested of this treatment for a change in my symptoms a couple of weeks ago. The disease had been affecting my left arm and right leg, causing pain and weakening them (with some cognitive problems as well). I had a lot of stress for couple of days and after this short period I have had very little trouble with these parts of my body. Instead, I have had pain in my ear, nose, throat and neck, problems swallowing and stomach ache. The stomach does not work normally. My left art is still healing, no problems there, but now I’m also having pain both in my left and my right leg. This sudden change has been really weird and frightening because EB virus causes cancers in these parts, e.g. gastric carcinoma. My blood was checked and everything was ok. Yet, the stomach is getting worse and I’m really frightened that these problems will develop into some serious disease. Have you stumbler or anyone on the forum experienced this kind of issues or heard about similar cases?


dominics
7 months ago

@nevergup

‘The results from this initial trial indicate that the EBV-specific adoptive T cell therapy is well tolerated and support further investigation of this approach in efficacy trials.’

This very small, open label (everyone know who is getting what) exploratory trial.

The message is that it is definitely worth exploring. I’d be looking to contact the authors and/or the hospital/University to offer myself up to take part in larger trials.

What I wouldn’t do is pay anyone for anything at this stage. It would be complete charlatans trading on your desire (perfectly normal) to affect the outcome of this rotten condition.

Presently: interesting but completely unproven.


stumbler
7 months ago

@nevergup , are you sure the stomach issues are MS-related? As you mentioned, we can contract other ailments, so has a “Family Doctor” been consulted about this?

Otherwise, it’s pointless worrying about other conditions. Everyone is vulnerable to these conditions. So, don’t spend your life worrying about things that may never happen, If it were to happen, you’d be going through it twice! 😉


nevergup
7 months ago

Thank you dominics and stumbler for your comments. It’s true, of course, that it has not been proven yet whether the adoptive T cell therapy will work or not in slowing down progressive ms. Yet, I would already consider it worth trying because if it gives a period free of progress my nervous system, I suppose, would still be able to recover, partly at least, as happened to some of the persons treated with these cells. It seems difficult, however, to find a private clinic offering this treatment. The other conditions are worrying and I have consulted a Doctor who did some tests which were all ok. At the moment it seems to be ok and I hope it stays this way:)

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