May 26 - Update 10

STOP PRESS: I now have over 300 completed responses to my survey - Thank You to one and all.  I will be producing more results in July/August, they will be in a separate blog.

.......Following on from the previous

There are different cells in your body for different purposes for the immune system, two main ones seem to be relevant:

• B-Cells - they are the military intelligence, that finds issues/invading antigen
• T-Cells - these are the soldiers that actually destroy the target, also known as killer cells

Vaccinations - Do they have a part to play in this?

The simple answer is Yes and No! (Hang on I'm starting to sound like a doctor?)

OK - There have been a number of studies into viruses, the vaccinations and their affects for increasing the risk of certain diseases (including GBS).  What is a vaccine?

A vaccine is a biological preparation that improves immunity to a particular disease. A vaccine typically contains an agent that resembles a disease-causing microorganism, and is often made from weakened or killed forms of the microbe, its toxins or one of its surface proteins. The agent stimulates the body's immune system to recognize the agent as foreign, destroy it, and "remember" it, so that the immune system can more easily recognize and destroy any of these microorganisms that it later encounters. - Thanks Wikipedia

Thus it is possible to assume that as this is actually a virus/bacteria that is being deliberately introduced into your system and causes the cells above to recognise the danger and so re-act/remember, it could be responsible for causing GBS?

Well Yes and No! (see above)

In 1976 there was a vaccine developed for a swine flu like virus (in the US), that appeared to increase the risk of GBS and this vaccine was terminated.  They did prove that people who were given the vaccine did have an increased risk (roughly two to five times - depending on who's research you read).  Studies from 2000 onwards indicate there is no/minimal links between vaccinations and the rate of infection per se.  In fact the H1N1 incidence in 2009 actually happened part way through a study in Paris into GBS and causes and they found no increased risk due to taking the vaccination.  On top of this, there was a study of 50 million vaccinated people in 5 European countries in 2009 that found 104 cases of GBS, thus the researches could find no link.

So based on these fact the actual normal rate across these 5 European countries is 2.08 per million - significantly different to what was stated in my last post?

As it is the introduction of foreign bodies into your system, then (like in my case - as I had inoculations in January and 2 weeks later had flu like symptoms) there is bound to be some chance, but....... (BTW for my wife's 50th birthday we are going on a cruise to the eastern Med - as long as I am fit enough - one burning question is "Should I have the vaccinations????").  So I have a seriously vested interest in saying "YES!" they do play a part, but I can't find proof that satisfies me!

Anyway.....

Your immune system knows about internal and external cells, but in order to attack your internal ones, it must get very confused? Again there are theories and this does happen in a number of other diseases.

The one thing I do not understand is "Why me?".  What I mean is if there are 1 in 10,000 of me getting this condition from a virus/bacteria/vaccine then why was I the one?  There must be something different in me that triggered this that the other 9,999 don't have.  This is also what the doctors/professionals don't know, unfortunately.  There is research going on and I will try and comprehend where they have got to, but I am still digging.

May 12 - Update 9

GBSSG (UK) Notes - Part 2

This is starting to get complicated (for the ordinary person)!  I have been researching the findings from the meeting and am trying to understand/correlate all the information.  In my travels, on the web, I have come across some wonderful medical terms, one wins (so far):

monosialotetrahexosylganglioside

This is commonly known as GM1 (may as well be called "Bob" for all I cared!).  The relevance is that people with GBS have higher levels of anti-GM1 antibodies and this can interfere with motor neuron function, other antibodies can be relevant depending on the specific strain/type of GBS (e.g. GD3, GD1a, GQ1b - Miller-Fisher).

Please note I am using the term GBS to encompass all the different types (CIDP, AMAN...)

There are a number of interesting "facts" that have come out of my research (not just from the support meeting):

1) Now Polio has largely been eradicated; GBS is the most common neurological disease in the world (Do strokes count?)
2) About 1,500 cases of GBS occur in the UK each year
3) The worldwide rate is approx 1.3 per 100,000 people annually
4) The likelihood of women getting GBS decreases during pregnancy, but increases in the few months afterwards
5) Around 20% of patents have residual neural issues
6) Approximately 5-10% of people die, usually from respiratory complications
7) The amount of research into the "big 5" diseases is astronomical compared with GBS (no surprises there!)

How do you get GBS?

There appear to be a number of different ways of contracting GBS:

A) From bacteria in foods, the most likely source appears to be Campylobacter Jenjuni - which sort of gives you food poisoning.  Then 1 to 3 weeks later a small number of patients get GBS (between 1:1,000 to 1:10,000 roughly)

B) Flu like viruses (e.g. A/H1N1) or general influenza - again you get the virus and a few weeks later you can contract GBS (in similar ratio to above)

C) Epstien-Barr Virus (EBV - the Barr has no relation to Barre in GBS!) a member of the herpesvirus family signs are sore throats and swollen lymph glands (ditto for ratio's)

It is also possible to get GBS from HIV and other infections of this type.

According to the research I have found the numbers stack up roughly 40% from Campylobacter, 20% from Influenza like illnesses, 10% from EBV.  Again I am not a medical "expert" and all these findings are taken from journals and papers/web pages I have visited and taken information from.  You could state they are inacurate, but are my best guess on what I have found.

What seems to be similar is what happens to cause GBS, but first I had to understand the immune system, so here goes:

The body creates antibodies to attack the antigens (antibody generators) in an invading cell, these are like a lock and a key see below:

When an infection is found millions are produced (as opposed to the few "sentries" wondering around in normal times), these then attack the invading cells and neutralise it's effects.  After a time the immune system stops producing these and things return to normal.

So in order to combat the illnesses listed above, the immune system creates antibodies that match the patterns and they then attack the bacteria and wipe it out, now it appears that sometimes these bacteria can be very similar in pattern to antigens of the nervous system, so the immune systems keeps sending out antibodies to attack these as well, so the sheath and axon etc are damaged/destroyed.

Interesting fact: antibodies belong to the family of large molecules called immunoglobulins - hence the IVIG!

I am now going for a long lie down, to allow my brain to recover from this terminology overload, once again I apologise to any medical personnel who think I may have over-simplified things, but I am trying to get this down to a easily understood level and the medical journals etc use far too many long words for "normal" people. 

More later.....