Looks like a great resource for HSV1 and Alzheimer's

I recently came across this:

http://www.alzforum.org/res/for/journal/detail.asp?liveID=188

It interests me greatly and not just because there is a lot of detail (I've barely scratched the surface) about the link between herpes simplex and Alzheimer's (a link that was first looked at in the 1970's).  I'm also intrigued that what is clearly a reputable Alzheimer's Research site is taking the growing body of research in this area seriously.

I simply cannot understand why the comparable bodies in the UK are neglecting this research.  I think it's scandalous.

Fast-track diagnosis

There's currently a considerable amount of hype about a new state-of-the-art fast-track system for diagnosing dementia (which will of course make some entrepreneurs very rich).  We're told it is very important for people to have an early diagnosis.

I'd like to state an alternative view that I have mentioned before.

1) Even with the most sophisticated scans, it is still true that Dementias can only be properly diagnosed post mortem.

2) The fact above may not even be a fact. Read about the nun study:

http://promega.wordpress.com/2009/05...the-nun-study/

My wife was only 'diagnosed' after being investigated by a leading memory clinic for twelve years. Throughout that time she had increasing difficulties. But she also had access, at different points, to two of the much-vaunted small handful of drugs which people awaiting diagnosis and their families understandably have such high hopes for. They didn't help and had unpleasant side-effects.

During those twelve years we got married, our children got married, my wife had her first grandchild, we went on some wonderful holidays, we enjoyed our life together to the fullest extent possible.

If we had had a diagnosis earlier, how would it have helped?

Some people suggest that an early diagnosis would enable you to make the most of the time you have left. I disagree. We had all that precious extra time without an explicit death sentence hanging over us. Our Guru said: 'Live a good life'. That's all you can hope to do, with or without a diagnosis. But I reckon it's been a lot easier without.

And I'm not saying it's been easy!

Finally, because we had such a good 'pre-diagnosis' we've managed to carry on enjoying life when we can, after a fashion. As the early part of this blog details, my wife had a terrible period just after the diagnosis (there's a surprise!) but she has improved since then. (Steady now! People with dementia aren't supposed to improve. It's not allowed.)

Yet another thing that can cause a sudden decline

I've posted about this before. There are quite a few things that can bring on dementia or can produce a sudden decline in people who already have dementia:

http://adventureswithdementia.blogspot.co.uk/2012_09_01_archive.html

As I've said in this post, there are probably other things, and I've now come across carers who are reporting that the person they were caring for had low sodium levels and that when this problem was addressed there was a big improvement with regard to the dementia symptoms. They were surprised as, until blood tests pointed them in the right direction, they had no idea.

More about HSV 1 and beta amyloid

This blog post is another clear explanation of the possible (likely?) link between the Herpes virus and many cases of Alzheimer's. It also clarifies the uncertainties about whether beta amyloid is a cause of, or a reaction to, the disease.

Possible causes/contributory factors 3/ TAMOXIFEN

Tamoxifen has been in use to treat breast cancer patients for several decades. Typically, it is used, either alone or in combination with chemotherapy, to treat women following surgery and appears fairly successful in preventing a recurrence of the disease.

S has not had breast cancer, but because her mother had it, and at a fairly early age, S has had regular mammograms and was invited to participate in the IBIS study designed to test whether Tamoxifen could have a protective effect against the development of breast cancer in women who might have a genetic pre-disposition towards the disease. (Actually, her mum's cancer was treated before there were tests to determine whether a particular cancer might benefit from Tamoxifen.)

S decided to participate in the trial. She was on HRT at the time, mainly because her mum was thought to be suffering from osteoporosis (though it was later decided that she wasn't). Those running the trial were aware that she was on HRT.

During the five year trial, S started to develop memory problems. She became convinced, before we ever knew anything about a possible connection, that Tamoxifen was the culprit. Shortly before the trial was due to end, she stopped taking the tablets (which might of course have been a placebo as this was a double-blind trial). Somewhere around this time she stopped the HRT also.

As things got worse, I started looking into Tamoxifen and found a surprising number of references to a possible link between Tamoxifen and memory problems. S eventually sought to discover whether she had actually been taking Tamoxifen or a Placebo and it was confirmed that she had been taking Tamoxifen.

We mentioned all this to the Professor at the memory clinic and he certainly didn't dismiss it out-of-hand (as he was quite prepared to do with other ideas).

I tried to find out from IBIS whether they had asked people on the trial if they had noticed problems with their memory (they sent out an annual questionnaire). It turned out that they had not though, interestingly, I understand that they do ask a question about this when surveying participants in the IBIS2 follow-up study testing Anastrozole, an alternative to Tamoxifen.

Eventually we were invited to meet a Professor who was one of those leading these trials. He was a very personable guy who thought S's mum might have been one of his early patients. I raised some of the things that perplexed me about the drug and its possible effects and he, very charmingly, answered them - up to a point though the answer often amounted to 'we don't really know'.

In a follow-up post I will summarise the letter he sent us following our meeting, when I have unearthed it from my increasingly chaotic 'filing system'.

Now I must go and wake S up as, for the second day running, she has slept well past noon.

At least, one way or another, she has so far avoided breast cancer. There's always a bright side if you look hard enough.