New readers' catch-up 3

 As promised, here's a selection of more significant posts from earlier in the year:

How S has improved

Possible explanations for S's improvements

Beacons of hope

Not forgetting the first two catch-ups:

http://adventureswithdementia.blogspot.co.uk/2012/10/new-readers-start-here.html

http://adventureswithdementia.blogspot.co.uk/2012/10/new-readers-catch-up-2.html

It is of course possible to read any or all past posts by clicking the links at the bottom and right of the page. 

New readers catch-up 2: Causes/contributory factors

In my effort to try and understand the disease, I've looked so far at three possible causes/contributory factors. Unlike some of the stuff that you can find online, these have all been discussed and researched by perfectly reputable scientists, and at least two of the three were taken seriously by the memory clinic and its very highly respected head.

Just click on the links which take you to various posts on this blog:

1) Lyme disease

2) Tamoxifen  and here  mice experiments

3) Herpes and here

(There's more on Herpes and the best way to find it all is to put the word into the search box (top left) and click 'enter')

A landmark

Whilst I was away on holiday, this blog passed the 5000 page views mark. I'm pleased that so many people have found my efforts of interest, also that a fair proportion of readers have read multiple posts.

By far the most read posts are those on the possible relationship between dementia and the herpes virus. This could be because such a large proportion of the population carry the herpes virus and these people are concerned about a possible link. I think it's important to point out that there's no suggestion that being a carrier means that you will experience dementia at some point in your life. First, no-one has suggested that all dementia is linked to the virus and, secondly, it seems clear that other factors must also be involved in the case of carriers of the virus who do experience dementia.

If you want to read all that I've written about the herpes virus, the simplest way is to put the word 'herpes' into the search box at the top left of the blog main page and press return.

Incidentally, I'm using 'dementia' here rather than 'Alzheimer's' because I'm becoming increasingly suspicious of the whole business of diagnosing a disease that can only be confirmed post mortem. You have only to read people's experiences online to discover a common picture of shifting diagnoses and people allegedly having two or more different kinds of dementia. There can't be many other fields of medicine where there is so much confusion amongst the 'experts', who can't even decide whether the physical signs they see in brains are the causes of the disease or the body's attempt to fight it. It's incredibly frustrating.

Tamoxifen again

I've blogged about the possible link between Tamoxifen and memory/dementia:
here and here.

This is a link to an interesting article on this topic:
http://www.sciencedirect.com/science/article/pii/S0091305701006566.

Another interesting article  -  see the abstract at the start:
http://www.faceblind.org/social_perception/papers/zbasseda/zbasseda-Tamoxifen.pdf

Perhaps most interestingly, Tamoxifen appears to be a drug that researchers turn to when they wish, for whatever reason, to impair the memory of mice: as this link shows  -  and it's an interesting article in its own right: 'After being given tamoxifen (perhaps best known as a breastcancer drug) for eight days, an otherwise normally developing mouse had more than 80 percent fewer new neural stem cells in its hippocampus (a structure in the brain's frontal region linked to short-term memory).' And whereabouts in the brain is Alzheimer's first detected? In the hippocampus, I believe.

Beacons of hope

There will be people who come across this blog hoping to find some answers, and maybe some hope.

As anyone who cares for someone with dementia, or who has dementia will know, answers and hope are in short supply.

However, in my search, I have found some glimmers of hope  -  if not for S, then maybe for others who are just starting out on this journey. For new or irregular readers here are links to some stories and summaries which I have found interesting and, in some cases, inspiring.

Morris Friedell

Herpes       more     the research     a possible herpes vaccine
(It's worth noting that 'the research' is the most viewed post in the whole blog.)
Steve and Mary Newport

Centenarians

The nuns' study

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.

A Herpes Vaccine may help

If, as seems at least possible, the Herpes Simplex virus is either a cause of, or a contributory factor in, the development of Alzheimer's disease in people carrying a particular gene (the research is summarised here), then the vaccine against Herpes Simplex (discussed here) offers some hope for these people. 

More on Tamoxifen

I've not had time yet to find the very detailed letter referred to in the previous Tamoxifen post. However I know the main problem with trying to pin down whether Tamoxifen can have adverse effects in the brain. It definitely crosses the blood/brain barrier. But the complication is that sometimes Tamoxifen acts like Oestrogen and sometimes it acts as an anti-Oestrogen. Its anti-Oestrogen manifestation is what makes it useful in relation to breast cancer, or at least in those breast cancers where Oestrogen plays a part.

It is unclear which effect Tamoxifen might have when it reaches the brain. A further complication is that it is unclear whether Oestrogen itself is beneficial or harmful to the brain; the research gives contradictory results. Unsurprisingly, in these circumstances, the small amount of research that has been done to try and determine whether Tamoxifen is good or bad for the brain is also inconclusive.

So someone like S who, on medical advice, was simultaneously taking Oestrogen (HRT) and Tamoxifen could have been adversely affected by either or both Or presumably the effects could have cancelled each other out, or they could both have had a beneficial effect. And her condition might have nothing to do with either of them!

It interests me that American scientists wanting to degrade the memories of mice used Tamoxifen to do so. These were 'transgenic mice' that had had their genes interfered with to enable this 'unusual' response to Tamoxifen. But this surely raises the possibility that humans with a particular genetic make-up could be similarly affected by Tamoxifen?

It is amazing to me that these scientists already knew about a link between Tamoxifen and memory yet no-one researching memory problems in humans seems to have made such a connection.

I will find the link to the report and post it here.

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.

Possible causes/contributory factors 2

As I said, S has had many blood tests over the years and evidence of various different viruses has been found. Amongst these are Herpes types 1 and 2. It's common to say that type 1 affects areas above the waist and type 2 below but when you look into it they both seem able to cause problems at different places in the body, and they are implicated in lots of diseases, though this does not seem as well-known as it should be - probably because medical science, and big pharma, have very little to offer by way of eliminating them or even lessening their effects.

Some studies appear to show a link between Altzheimer's and the Herpes virus though the significance of this link is not yet clear. Presumably there could be a similar link with other kinds of dementia. Dr. Itzhaki, a British based researcher who has helped to establish the link, has concluded, "Our present data suggest that this virus is a major cause of amyloid plaques and hence probably a significant etiological factor in Alzheimer's disease. They point to the usage of antiviral agents to treat the disease and possibly of vaccination to prevent it." Sadly, it appears that further research has stalled because of lack of funding.

Possible causes/contributory factors 1

Prior to S's condition really becoming apparent, there was a decade or more when she regularly had debilitating viral infections which often kept her off work - a couple of times for long periods. During these times she had various tests when different dodgy viruses were found in her blood tests. The symptoms were sore throats, earaches, constant fatigue, headaches, muscle pain, weight gain and dizziness.

One thing she has never been tested for is Lyme disease. This is a contentious topic, it seems, but it is clear that Lyme disease - which is spread by a tick bite - can induce these kind of symptoms, sometimes many years after the initial tick bite. And the end stage of serious infection is a condition involving dementia.

At the age of 18, S spent a year doing VSO in Ethiopia where Lyme disease is endemic. During her time there she was ill with the same kind of symptoms as those mentioned above and was thought to have altitude sickness.

In the late 1980's, S spent 3 weeks in the Philipines, another area where the ticks that can cause Lyme disease are found.

We have mentioned all this to the Professor at various points during the last few years. He did not seem particularly convinced by the Lyme disease possibility but was for a long time of the view that S's problems could be the result of, or could have been exacerbated by, viral-type infection (actually, I believe that Lyme disease is caused by bacteria though the symptoms are similar to viral diseases). He actually referred us to a colleague who was supposedly investigating any possible link though this did not really get us anywhere, maybe because the guy - who seemed to have a penchant for diagnosing difficult conditions - was actually an expert in fungi, rather than viruses. He did blood tests which showed the presence of both Herpes viruses, of which more later.

So we never really got anywhere with this line of enquiry, but there remain unanswered questions about the illnesses that S kept getting, what caused them, and what the long-term effects might have been.

Interestingly, although still gets very tired at times, virtually all the other 'viral' symptoms have long since disappeared. She is seldom 'ill' now, apart from having a dodgy brain!