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.....