Haven’t posted here for a while, still coping with my wifes sz and hoping that one day things will get better!
For anyone in the UK, there was a BBC2 program a couple of days ago (Trust Me, I’m a Doctor : Mental Health Special) that had a small piece on a study that’s been carried out by Dr Belinda Lennox.
There’s a bit more about it on this website:
The premise is that some people may have been mis-diagnosed with sz, when it’s really a blood disorder causing the voices/halucinations/paranoia. With the right treatment, people who have been diagnosed with sz have been pretty much cured of all their symptoms and have returned to how they were before becoming ill…!
I’ve contacted the Oxford University Psychiatry team today to see if they are still carrying out this study (website is from a year ago), and to see if my wife can be tested for these antibodies.
I don’t want to raise anyones hopes, but has anyone (UK or US) heard of this/had experience of this?
The BBC program it was on is well respected, as is the University of Oxford - I can’t believe they would have let this come out if it wasn’t true.
I just watched the programme. As you said, the info about the study was from december 2016 so i was gonna ask my son to speak to his Dr about having the bllood test. I would love to hear if you get a response from the team at oxford uni.
My son is distancing himself from me and increasingly hostile. It would be nothing short if a miracle if this turns out to help anyone with this hellish condition.
Miracle is the right word! If this really is a ‘cure’ for certain people with sz, I’m amazed it hasn’t been headline & front page news considering all the mental health stories that have emerged this year.
My wife has an assessment at the Maudsley Hospital in London in just over a week, I will bring it up with them as well, they are supposed to be the at the forefront of mental health work in the UK.
I’ll update here if/when I get any response from them or Oxford uni.
Also saw that programme so interested in any results. Programme did spell out some other symptoms (fits etc) which should be helpful in diagnosis. My problem is wife age 80 plus with late onset SZ and responding ‘reasonably’ (ie control of symptoms; not cured) to low dose flupentixol injection fortnightly.
I went through hell trying to get the hospital to run the tests. I must warn you that the psychiatrists I dealt with really didn’t like the idea. This was 18 months ago… The markers in the blood which “prove” that this condition is physically based seem to fade so the sooner the tests are done the better. I wish you and yours well.
There is a book called “Welcome Silence” I believe - written by a Carol North - I believe - going from memory here. Her SZ symptoms were gone in a day or two after starting dialysis. She is now a PhD and this is her true story. Unfortunately, they say dialysis so rarely works and has it’s own drawbacks that they won’t try on everyone with SZ symptoms. I wonder if what you are writing about would be similar to this. Obviously in her case her symptoms were caused by something that could be removed from the blood.
Autoimmune encephalitis - Wikipedia. Theres a lot of literature out there, its fairly new and hasn’t been accessed by many in the profession. There are also other avenues being researched which may give links to a physical reason for this disease.
orson, that Guardian article is excellent, and dated just two weeks ago it shows that things are progressing, albeit slowly. These things take time, but it’s difficult not to get just a bit excited that finally things are moving away from the ‘sledgehammer’ approach.
As I mentioned in an earlier post, I’m taking my wife to the Maudsley in London next week, hopefully they will see enough in her to warrant inclusion in an exisiting or new trial in this research.
Anyone else on here UK based unhappy with the treatment they or their loved ones are getting for sz, I would get onto your local mental health team and start asking questions about this.
I’ve received a reply from Oxford Uni today, I mentioned I would like to post it on here, which they were happy with as long as I didn’t include the details of their researcher, who then may be inundated with emails, so here it is:
Thank you for your email, and I am so sorry for the delay in reply. We have received a lot of interest since the BBC special aired!
We are recruiting people with psychosis, aged 18-70 years for our study to test for antibodies in patients with psychosis. For participants to be eligible for the study, the current episode of psychosis should be for less than 2 years, but that can be a first episode, or a relapse. We are currently recruiting from South London and Maudsley Trust for this study. Our recruiter in SLaM is xxxxxxx and he can be contacted on: xxxxxxxxxxxx. He will be able to determine whether or not your wife is eligible to participate in the study.
If your wife does not meet study eligibility criteria, then your clinician (GP/psychiatrist) can request the antibodies blood test anyway, through clinical routes. I know this is sometimes done in SLaM.
The particular antibodies we recommend they test for are NMDAR -live assay, LGI1. The details for how clinicians can request the test, and the request card to use are here: Neuroimmunology - Immunology Laboratory
I hope this information is helpful, please feel free to get in touch if you have any further questions.
Looks like my wife won’t be eligible, but will check directly with the Maudsley next week, and then go to local GP for the test if necessary. If anyone out there manages to get on this study, or have the test done, please keep us updated.
They have requested that any enquiries go to the ppip@psych.ox.ac.uk address
Hi again, It was nearly 2 years ago when I had a similar reply. I then battled to get the tests done, my son was and is under section so I had very little control . It ended up in front of a judge at which point at least the blood test was done. By that stage the markers were not apparent. The more I read, and I have read lots the more it seems to me that there is a physical reason for this disease.