Herpes simplex virus type 1 (HSV1) a cause of cognitive impairment?

[Sue J]

Sue, I think the best doctors do listen to what people are telling them. Our experience of neurologists has been very unfortunate though - the ones we've met have been too interested in the brain and ignored the person.

The leading expert we had the good fortune to be seen by for about twelve years once wrote in a letter to another professional 'I am very reluctant to discount what a patient is telling me'. Perhaps all doctors shound have this on a poster to remind them.

It must be very frustrating for you, particularly in view of your background, that they won't listen.

I don't think you're alone in believing that there could be a link between some forms of arthritis and some types of cognitive impairment.

I hope you will keep telling them what you think, even when they don't appear to be listening.

I agree with you Stanley, I have had experience with many Drs in my time and, some are only interested in their careers not really about helping patients, sadly. They don't seem to realise that all the medical understanding we now have is because someone listened to and observed their patients and wrote things down. We all know when someone is listening to us or not and it greatly affects the Dr patient relationship.

I am aware (I wish I wasn't) of what is happening in my body & brain but have always said 'I need help', right now whatever the unidentified problem is it is not fixable but my situation could be changed with the right help and support. Yes, I do keep telling them what I think and thankfully I have someone now who is listening, what help they can instigate for me is too early to say. The neurologist who did express his written opinion has slowed up my getting help because subsequent Drs listened to his opinion more than listening to what I was saying leaving me, having felt I had climbed a small ladder, slipping down a long snake!

It frustrates me greatly, not just for me, but for the many patients who are unable to communicate in any way, who do not understand what is happening to them and are in the hands of people who are not helping, but hindering them.It hurts my heart

I'm sorry to read that you too have not had favourable dealing with neurologists but pleased to read of the obviously very good specialist you also had

 

[Bristolbelle]

Interesting....

I both suffer from cold sores and work in the care environment where it is not uncommon for a service user to be suffering from shingles. I will be asking my GP if there are any special precautions I should be taking or if I can have a shingles vaccination

 

[Sue J]

I need to put this down for the record in the hope that it may help others or one day they will use this site for research. Am just coming out of a bad attack, feeling my brain inflamed, needing the ice cap again to cope with the pain. Have been very volatile, loss of words, very weak unable to function much at all. And now I can feel I am about to break out in cold sores on my lips again, I don't believe it's a coincidence. I have been a bit lax in taking the Olive leaf extract which I try to take daily, because of my symptoms, I'd better take a dose. I also will try and remember to tell my GP about it when I next go and hope he's listening.

 

[stanleypj]

So sorry to hear how you're suffering Sue. But, as always, you're trying to be helpful by noting these things. As we both suspect (and we're certainly not alone), there may well be a connection between the herpes virus and problems in the brain for some people.

I do hope you'll start to feel a bit better soon. xx

 

[Grannie G]

Sue could you print out your post so you have a record of it to show the GP.

 

[Sue J]

Sue could you print out your post so you have a record of it to show the GP.

Thank you very much Sylvia and Stanley.

Yes Sylvia I will try and cut and paste it and the post from the German lady which for me is very encouraging. I am getting a little better at being able to document things albeit often in a bit of a haphazard way.

I took the OLE extract last night and this am and the tingling on my lips has gone and not developed into anything further. Bodily very weak today and have no choice but to stay put - hope my brain can settle and watch some of the CW Games.

Hope your day is Ok, sorry about your wife's fall Stanley, good to read you've got it sorted

 

[stanleypj]

I've just come across another article (relatively recent) about the link between HSV1 (the 'cold sore virus') and AD:

http://www.sciencedaily.com/releases/2011/04/110404122203.htm

 

[Sue J]

Thanks very much for this Stanley, I will try to print out before my Drs appt which I know is soon but not when I have managed to print out the posts as Sylvia suggested, just have to remember where it is and take both things together.Thanks again, Sue

 

[Not so Rosy]

Gosh, food for thought, I had no idea !

 

[stanleypj]

For the benefit of members who are reading this thread for the first time I should stress that there's no suggestion that everyone with HSV1 gets dementia, nor that all dementia is caused by HSV1.

 

[Sue J]

For the benefit of members who are reading this thread for the first time I should stress that there's no suggestion that everyone with HSV1 gets dementia, nor that all dementia is caused by HSV1.

Very good point Stanley

 

[marionq]

It is my experience that I have inflammatory flare ups in my arthritic joints ( although not all my joints are are) when my brain symptoms are at their worst, linked to my menstrual cycle. It is my belief it is auto immune in nature. My brain is inflamed, like being on fire, is what I kept telling the Drs - one did believe me but she was up against a neurologist who didn't even know how to talk to a patient to find out anything about my symptoms and dismissed me as needing 'psychiatric care'. Most of all I needed someone to listen to me and believe me.

I have become a disabled person where I wasn't before.

I have always suffered headaches from arthritis in my neck. Eventually I pinpointed a link to my menstrual cycle and spoke to my doctor about it expecting him to pooh pooh the idea. He said this was quite likely since women carry more water during this time which could add to the inflammation. With the menopause it died down but in the last year has begun again - stress from being an AD carer? Needing to lose weight? Who knows?

By the way husband with AD regularly had cold sores when younger.

 

[Owly]

How about COCONUT OIL as a way to fight the virus? If you google it, you'll find it has anti-viral, anti-bacterial and anti-fungal properties.

Some people with dementia given coconut oil make significant improvements. People say that it forms a source of food for a brain that cannot process sugar properly any more. But it may also help by destroying this virus. Who knows? If I was prone to cold sores, I think I'd be using it for all my cooking, stirring it into soup, spreading it on toast, baking it into cakes.

 

[stanleypj]

Some recent fascinating research on the thread topic:

http://dementiacatalogue.alzheimers.org.uk/library/opac/search.do?queryTerm=herpes&mode=BASIC&operator=AND&includeNonPhysicalItems=true&title=Enter%20Book%20title%2C%20Journal%20title%20or%20words%20in%20title%20here&publicationYear=Year%20From&yearTo=Year%20To&catalogAuthors=Author%20...%20enter%20here&mainSubject=Subject%20...%20enter%20here&publisher=Publisher%20...%20enter%20here&series=Series%20...%20enter%20here&limit=All&branch=All&resourceCollection=All&modeRadio=KEYWORD&activeMenuItem=false

The second summary seems particularly interesting.

I found all this on: alzheimers.org.uk/dementiacatalogue. It's recognised scientific research not some internet scam.

 

[Sue J]

Stanley thanks for the link but it is just taking me to dementia library, fascinating! but I presume you were referring to something more specific?
Thanks
Sue

 

[Saffie]

I have always suffered headaches from arthritis in my neck. Eventually I pinpointed a link to my menstrual cycle and spoke to my doctor about it expecting him to pooh pooh the idea. He said this was quite likely since women carry more water during this time which could add to the inflammation. With the menopause it died down but in the last year has begun again - stress from being an AD carer? Needing to lose weight? Who knows?.

I thought it was generally understood that menstruation can cause migraine. I did, my daughters do too.
I have always understood that it is the balance/imbalance of hormones that causes it though.
Or perhaps it may be that it is if you are prone to migraines anyway.

I also have cervical arthritis and the GP thinks this is what causes the headaches I now have. Naturally, stress and anything that leads to tension in the shoulder and rear neck area will have an affect on the muscles and thus the nerves and bloodvessels in the head.

 

[stanleypj]

Hi Sue. Thanks for letting me know about that. When I click the link I get the word 'herpes' in the search box and then links to six relevant articles. Not sure what is happening.

Perhaps someone can figure it out. If you can find a search box, you can put the word in yourself and it should bring up the links.

 

[Sue J]

Hi Sue. Thanks for letting me know about that. When I click the link I get the word 'herpes' in the search box and then links to six relevant articles. Not sure what is happening.

Perhaps someone can figure it out. If you can find a search box, you can put the word in yourself and it should bring up the links.

I have got it OK this time but different to the first, not sure I'm up to reading it now but its a good link to have.
Thanks again

 

[stanleypj]

I came across this old thread today. I think it still makes interesting reading. I wonder if anyone is aware of more recent research in this area?

 

[Amy in the US]

Hello, @stanleypj, I am glad you bumped this thread up as I am sure I have seen a recent article about this somewhere. NPR or the BBC, most likely, but I will have a look.