I discovered recently from a post on this site that there was a suggestion that PD travelled from the gut to the brain so I looked for research evidence – with pretty stunning results. Since about 2010 research into microbacteria has vastly increased the understanding of PD.
I feel that at last I have an explanation for all my symptoms and, even better, an avenue which holds out some hope for alleviating them. I wasn’t sure whether to post about it – I may have misunderstood everything - but this new approach to understanding PD deserves to be recognised so I’m spreading the word. I’ll keep it as short as possible! And I’ll post relevant links at the end.
Very briefly and massively simplified (but not I hope to the point of being meaningless) this is what I have found out.
Re populating the bowel with healthy bacteria is an extraordinarily successful new NICE approved treatment for drug-resistant C. Difficile (Very nasty food poisoning). People with PD who have received this treatment report, anecdotally, that PD symptoms improve.
A Scandinavian PD patient with severe constipation was found to have high levels of H pylori. When this was treated with very high doses of antibiotics the constipation disappeared and PD symptoms improved very significantly and permanently.
Research suggests that PwP have 'the wrong' balance of microbes in the intestine and that this will go back years. Raised levels of H. pylori are more common in PwP than in the general population. H. pylori is associated with inflammation. Other microbes are found at lower levels than normal in PwP .The imbalance of microbes cause the bowel to be less effective, hence many PwP have histories of constipation/IBS long before diagnosis Gastroparesis (sluggish digestive system, bloating) is a significant problem for PwP.
The bloating of the stomach and abdomen together with the ‘hostile’ internal environment caused by microbial imbalance damages the vagus nerve. This is a nerve that ‘travels’ all over the body taking messages to and from the brain to all the major organs and all areas. If it is damaged the messages it takes will be scrambled.
". . . Vagus nerve relays motor nerve impulses to different muscles such as those of the tongue and voice box. It also receives sensory impulses from throat, organs of abdomen and chest, as well as ear. The vagus nerve also supplies visceral nerve impulses to abdomen organs, chest organs, and glands of throat. It is among the longest of cranial nerves. The main functions of vagus nerve are breathing, sweating, speech, monitoring and regulation of heartbeat, and keeping larynx open when breathing.It also informs the brain about food that’s being ingested and the one which has been digested. Vagus nerve plays a major function in emptying food from the gastric region. When there is damage to vagus nerve, it causes gastroparesis— a condition where there is loss of muscular function in intestines and stomach.’ (Psychology Today May 2015)
Sounds familiar? ALL my ‘non-motor’ symptoms – including the massive sweats I get as I wear off (hyperhidrosis) suddenly make sense; ‘wobbly voice’, running out of breath half way through a sentence, palpitations, vertigo – all due to my vagus nerve not doing its job properly.. And the severity of the bloating is explained by a negative feedback loop – as I get more bloated more pressure is put on the vagus nerve so it’s even less able to send the right signals to the digestive system so I get even worse gastroparesis – until eventually the whole system packs up.. My two most troublesome symptoms are massive bloating which by evening makes it impossible to do anything except lie flat and two to three episodes of severe hyperhidrosis every day – necessitating a complete change of clothes each time. No doctor or nurse has ever been interested in discussing these with me and have treated them them as irrelevant to PD. Now it’s obvious what’s happening. So much is falling into place I can almost hear the ‘ker-chings’.
The research findings support the idea that 'correcting' the microbial population in the bowel improves the functioning of the digestive system and also the functioning of the vagus nerve; hence the lessening of the PD symptoms. At the very least it could prevent further damage to the vagus nerve. So far, the way that the vagus nerve actually causes the brain itself to become ‘Parkinsoned’ , to coin a phrase, is not understood.. However, if changing the microbial balance improves PD symptoms surely we don’t need to wait until we fully understand the transmission method before introducing it as a therapy.. (Nobody knows how ECT works but it can be a very useful therapy for severe depression)
If by changing the make-up of my microbe load I can alleviate my terrible bloating and constipation I would jump at the chance – and if it relieves some of the other PD symptoms I’d break into song. However, there is one thing that may put people off – the re-populating of then gut Is done by faecal transplant – not quite as disgusting as it sounds but still not something perhaps to be discussed over breakfast.
Unfortunately NICE has licensed the procedure only for C Difficile at the moment. It is I think available in the States and there seems to be one clinic in the US offering it privately as a general cure -all but I would guess there needs to be more work done on using it specifically for PD. This is an avenue I’m going to pursue. In the meantime I’m going to ask my GP to test my level of h pylori – a very simple breath test.
I really think that those of us in the UK should be shouting about this gut bacteria-vagus nerve – brain – PD relationship . It makes sense and offers so much hope and is so less invasive and potentially hazardous than the DBS/apo pump/stem cell route which is offered at the moment. At the very least I would expect Parkinsons UK to be making significant funding available to scientists to investigate and to run clinical triaIs asap. If trials are not already taking place in the UK I am prepared to make a very big noise to get things happening . And I ‘d happily be the first guinea pig!
Has anyone else heard about any UK trials or any UK hospitals or clinics using this therapy?
Below are a few links – not exhaustive. Just google ‘Parkinsons and gut bacteria’ and sit back – you’ll be flooded with information.
Useful book: Follow Your Gut . Rob Knight published by TED 2015 ted.com/books