Auto Immune Disease – a beginner’s guide

Back in November I was very fortunate to hear from a friend with Inclusion Body Myositis about her consultation with a very eminent heart-surgeon-turned-dietician, Dr Stephen Gundry.  Dr Gundry has a thriving practice in California where he sees many patients with a variety of health conditions, and has written two ‘diet’ books, the first being entitled Diet Evolution which was recently updated to the current Plant Paradox book.  He became interested in nutrition whilst working as a cardiologist, having met one quite extraordinary, seriously ill patient who turned his health around purely by changing his diet.  I’m not going to quote the whole book at you, because hopefully you will be interested enough to look at it for yourself, but it recounts his progression to working with patients with varying auto-immune conditions and achieving great results by modifying their diet and adding a few supplements.   Dr Gundry carried out a full spectrum of blood tests for my friend, and his opinion was that by following his diet recommendations she could improve her health and regain muscle strength.   

Now I have the greatest respect for this lady.  She is a very practical, no-nonsense sort of person, and if there’d been a hint of hokum about him, she would have been onto it like a shot.  But she felt he was genuine, and that was good enough for me.  I bought the book.  And it got me thinking about our modern-day way of eating, and it all started to fall into place. 

Up until fairly recently, people normally lived out their lives in one geographical area, which had been home to their ancestors for probably several generations.  People didn’t have the opportunity to travel, so they married someone from the same community, or one very close by.  They ate food that was produced locally depending on what they could grow in the local soil, and meat from animals that ate more-or-less the same.  There were no chemical fertilisers, they used the by-products of their livestock to feed their crops, and food was eaten fresh when in season.   Over the generations, our bodies got used to the food sources, produced the right digestive bacteria to deal with those foods, and people were, in the main, pretty healthy.   The water sources were generally clean and unpolluted, and there were no airplanes or cars polluting the atmosphere until fairly recently, and our human bodies could cope with the environment and the pace of life. 

Then suddenly, and only in the last 40 or 50 years or so, travel and transportation became widespread.  Food could be flown around the world to people who had never had the opportunity to eat it before, and people were able to relocate to a completely different part of the world, and eat the foods native to their new home.  Gut bacteria, used to dealing with familiar substances for many generations, looked at the new foods they were suddenly expected to deal with and shrugged their shoulders.  During this time, the food production industry gathered momentum, and fuelled by the supermarkets’ demand for cheap food, began to add chemicals and preservatives to our food to add to their profitability. Farmers began to increase their crop yield with chemical fertilisers and weed killers, which are absorbed by the plants we eventually eat, and remain in the soil.   Fast food became popular, and over-fatty, over-sugary food became readily available – a regular part of our diet, instead of an occasional treat.  Don’t get me wrong, I’m not criticising or pretending that my eating habits are any different.  I’m just setting the stage. 

At the same time, the pharmaceutical industry gathered momentum, offering financial incentives to our doctors to prescribe chemicals that we probably didn’t need, followed by several more chemicals to offset the side-effects of the original one.  Even the drugs that are good for us, lifesavers sometimes, like antibiotics, steroids or painkillers, destroy the natural balance of our digestive systems and we lose the good bacteria that we rely on to digest our food, along with the bad bacteria that were making us ill.   Adding to this chemical mix, none of us can avoid the increasing levels of air pollution and water pollution, so how on earth are our bodies supposed to cope?  We spent thousands of years adapting to digesting clean, locally grown food, breathing clean air and drinking clean water, and then in less than two generations we’re eating substances that our bodies have never encountered before, breathing in car fumes and drinking water doesn’t even taste like water.  Our modern lifestyles are hectic; stress, anxiety and depression are widespread; greed and discontentment are fuelled by media advertising from all directions. 

Some of us cope well with these unfamiliar substances of course, but some of us don’t.  You’ll know which of these groups you belong to.  If you’re fit and well, you’re coping.  If you’re ill, particularly with an auto-immune disease, then you’re not.   

I have a theory that some of us are born with a pre-disposition to auto-immune disorders.  Under ideal conditions, these diseases wouldn’t necessarily manifest, but nowadays who actually lives under ideal conditions?   If you have that pre-disposition,  I think it just takes a combination of a couple of trigger events to kick start an auto-immune reaction.  These triggers could be severe or prolonged stress, a virus, a bout of food poisoning, a heart attack, an injury, a bereavement, a change of location, redundancy…..  All these, and many other things, put our bodies under tremendous pressure, and sometimes the medications we are given to help us deal with them become a factor too. 

Our gut is the largest organ in our immune system.  It’s a fragile structure, with a lining just one cell thick in places, and partly covered in tiny villi (little fingers) that take the nutrients out of our gut contents and transport them to where they’re needed.  Stress, illness, medications and poor food choices erode the lining of this fragile structure, and can cause the villi to die.  We might not be getting proper nourishment from our food, and the undigested mess becomes home to unfriendly bacteria that wipe out the good bacteria that we rely on to keep us healthy.  Even worse, some substances can leak out of a weakened gut and settle in places they were never meant to be, setting off a reaction in the immune system.  The immune system is confused and begins to mistake our body’s own cells for more of these invaders, and an auto immune illness is born. 

Ta Da! 

So does knowing all this make any difference to our overall health?  Unfortunately not, but it does give us the opportunity to decide whether it’s worth trying to do anything about it.  If we have a disease (or several, in some cases) that is caused by our own body attacking its own cells, then it makes sense to me to start at the beginning, to look at how we can get rid of the unfriendly bacteria that is infesting our unhealthy gut, restore a good crop of friendly bacteria, and stop eating the substances that are creeping through microscopic gaps and holes in our gut wall into places they shouldn’t be, long enough for the gut wall to heal.  If we’re sensible we will start eating foods that our bodies are able to deal with, by which I mean the foods that our ancestors ate as those are the ones our bodies are adapted to digest.  If you’re really lucky, your ancestors will have existed on McDonalds, lasagne and chocolate cake, but mine didn’t so I had to think long and hard about the sacrifices I would have to make if I decided to go down this road.  There are no half measures, you can’t have occasional ‘treats’ or days off or you’ll undo all the good work you’ve done so far.  And it will take a long time before the gut can be fully healed, none of this is an overnight cure. 

As I said at the beginning, if anybody can remember that far back, I was introduced to the Plant Paradox, but there are other similar eating plans including various Paleo diets and the AI diets which I’d been aware of before but discounted because you’re not allowed coffee.  Having read and fully digested (!) Plant Paradox I decided that was the one I believed in.  It identifies the main ‘baddies’ in our diet as lectins, it explains the science behind all its guidelines, it is backed up by videos and blog posts by Dr Gundry, and has a knowledgeable and helpful Facebook support group.  

So –  what  are these lectins, and what they do to us?

Lectins affect everyone, but if you have an auto immune disease – maybe arthritis, diabetes, IBS, a thyroid condition, heart disease, cystitis, myositis, or if you are overweight, it’s useful to be aware of them because they are a direct cause of inflammation and autoimmune reactions in your body.

Lectins are a type of protein found in almost all plants including fruit, vegetables, pulses and grains, and the animals that eat them, including their meat, eggs and dairy produce.
Plants exist to reproduce. They have no interest in being eaten by us, or even by animals or insects. They don’t have the option of running away when they are under threat, so they became experts at protecting themselves and their babies with natural pesticides and repellents designed to paralyse, poison and/or kill their unfortunate predators. As far as plants are concerned, we’re just big insects and they are perfectly happy to poison us if it keeps us from eating them, so they’ve developed toxins and nerve agents specifically to discourage us.

Some don’t want to be eaten at all – like some types of kidney beans, which contain lectins that bind to our red blood cells and make them clot together, eventually causing death. Others only want to be eaten when their seeds are mature and ready to germinate if spread – think of the stomach ache an immature apple will give you, compared to the lovely experience of eating a ripe fruit. The lectins in beans and apples, and many other plants, will cause these acute, easily recognisable reactions, but most are more subtle. If we were insect-sized, we’d notice the effects straight away, but we’re bigger so we don’t notice much until the poisons build up over time. But even before we notice, the damage is being done.

Some can damage the lining of your gut, so that proteins from your food can invade parts of your body they were never meant to get to, and activate your immune system to attack them along with your own body cells. Once these lectins get into the bloodstream, they can potentially invade any part of our bodies.

Having read the book, I’ve now understand why potatoes make me ache, why gluten-free stuff makes me feel worse, why lentils and pumpkin seeds make me instantly violently sick (both ends) and why I always had stomach ache, and I’ve learned the difference between A1 and A2 cows and why bone broth isn’t necessarily good for you.  And I can drink coffee and eat chocolate every day!  I started following the guidelines in mid-November and learned as I went along.  I’d say I’ve been doing it properly since 1st January, when I finally managed to give up my morning shortbread biscuit.  I eat lovely food and I’ve lost 15 pounds without trying, and without being able to do any exercise.

But what about my auto-immune disease, I hear you ask.  I wouldn’t expect to see any change in my condition for a long time yet because my gut is still healing.  But I feel so much healthier, and my digestive issues and food sensitivities are a thing of the past.  The weight loss has made it much easier to move around and seems to put less strain on my knees as they are nowhere near as painful as they were.  My balance is improving and I can shuffle a few steps forwards or sideways without a walking aid, something I couldn’t do at all a few weeks ago.  Life is easier, and nicer.  But back to the point – IF I can repair my gut and stop giving my immune system anything foreign to react to, could I regain any of the muscle strength I’ve lost?  Well, my friend asked Dr Gundry that question and he said that she could, because she still produces stem cells and her body will naturally repair itself. 

I’m going to leave you with that thought, because I can’t improve on that.

BYM338 end of maintenance visit November 2015

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I’m a bit late with this blog, and I apologise for that but the first drafts looked more like London traffic reports than anything else so I thought it best to wait until I had calmed down a bit before carrying on. The visits were actually scheduled for 23rd and 24th November, a couple of weeks ago now, and although a 2 day visit with all scans and tests to be completed, it should have been fairly relaxed and easy because there was no drug infusion this time, and therefore no need to get to the hospital at the crack of dawn to get it ordered. It was half term, and experience has taught us that this makes quite a difference to the traffic so when we set off at 8 o’clock on the Monday morning, we were hoping to make the journey in no more than about 2 hours. Ha! Everything was fine until the last 3 or 4 miles, at which point traffic came to a virtual standstill and we crawled the rest of the way, finally arriving just after 11 o’clock. It didn’t really matter, because the only fixed appointment that day was for my echo-cardiogram at 4.10 pm, but I was fasting and getting a little bit hungry by the time we got there!

Luckily, the nurse hit a vein first time and managed to fill all 12 test tubes straight away. We felt triumphant, and really that set the tone for the day – everything went smoothly and we got everything done except the strength tests before we were picked up by Michael, our usual ambulance driver, to take us round to the big hospital for the echo scan. Traffic was still horrendous, and Michael told us that many of the roads were closed for installation of cycle lanes, and others had been made one-way while the work was going on and that was why things were chaotic. The lovely Mayor of London, Boris Johnson, has invested an awful lot of money in making the city centre a safer place for cyclists, and he has made 3000 bikes available to the public in ‘bike-ranks’ where you put your money in to release a bike (a bit like Morrisons’ shopping trollies), ride it to wherever you want to go and then park it in a bike rank at that end, where you get your money back. They call them Boris Bikes, and it seems a very popular scheme. It makes sense to keep as much traffic out of the city centre as possible I suppose, because although they do impose a congestion charge as a deterrent to motorists (disabled Blue Badge holders are exempt from charges), the roads are still permanently busy with normal traffic fighting their way along one lane while the Bus Lane remains largely empty….
Anyway, the heart scan was completed by 4.30pm, the ambulance took us back to Queen Square and we set off back to Banbury with instructions to be back on Tuesday morning by 10.00am so that we could get the strength tests done before heading off to the big hospital for my DEXA scan at 10.45am. Knowing that the traffic would be heavy, we decided to leave home at 6.30am thinking that would give us plenty of time. Ha! The M40 was stop-start all the way down, the A40 was chock-a-block, and the Marylebone Road eventually ground to a standstill. We sat patiently (not really, Colin was fuming) in traffic from 9 o’clock, just inching our way along until finally we could see the road that we needed to turn right into to take us up to the hospital. The traffic lights turned from red to green, and back to red again, and nobody moved. More worryingly perhaps, there was a bus that appeared to be turning into ‘our’ road, but that didn’t move either. We sat like that for about 45 minutes, then the traffic in front of us in our lane started pulling into the other lane and that held things up as well! Finally, at just after 11 o’clock, we made it to the road junction, and a van driver yelled across to tell us that there had been a big accident and our road was closed. Police were at the junction, turning traffic around. We pulled out around a lorry that had evidently decided that he was going to have to go up that road and was going to sit it out, and across the road to where the police were. At that moment my nurse rang to see where we were, so I told her what was happening and she tried, along with Michael, to think of another route. She would suggest a road, and I would hear Michael in the background saying ‘No, that’s closed’ or ‘That’s one-way now’. In the meantime, Colin was having much the same conversation with a policeman who said there was no way round and we should turn back. My poor nurse was less than impressed, and suggested that we drive instead to the big hospital and wait for the ambulance driver to bring our nurse ‘escort’ to us there – but there is absolutely nowhere to park at UCH and we wouldn’t have been allowed to wait in the drop-off area, and it would have taken ages for Michael to battle his way through the traffic, if he could get there at all! She finally had to concede that we simply couldn’t do it, and that she would have to submit incomplete data for this trial visit.

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So we came home, getting back at around 12.30pm after 6 hours sitting in the car for nothing. I haven’t heard anything from the hospital since. I don’t know whether this will exclude me from taking part in the extension trial that might start in January/February, as the trial doctor did say that only patients who had completed this phase of the trial will be invited to take part. At the moment I feel that the stress of travelling to and from London far outweighs any benefit I might have got so far from the drug, although of course after a few months it is expected that all trial participants will be given the drug on an open label basis so we will all be sure of what we are getting, and perhaps then the benefits will be easier to see. I am a worried that without the drug I will quickly get weaker again, although it is now 6 weeks since my last infusion and I’m happy to say I haven’t noticed any weakening yet, in fact if anything my legs feel a little stronger and I am still easily managing 30 minutes on my pedalling machine. My next scheduled appointment is 16th December, which also entails yet another heart scan and an ECG but not much else, hopefully they will have sorted out the dates for screening for the next phase, and hopefully they will let me take part, although Colin has absolutely reached the end of his tether with it and would be happier if we just gave it all up now.
Oh yes, of course you are only reading this to find out how the cat is doing!  Well I am really happy to report that she’s still with us, eating well and coping with the twice-daily fluid injections. I would say that her quality of life is similar to that of any other 19 year old cat, she just eats and sleeps really, but the nicest thing is that, although we always give her injections while she’s sitting on my lap, she still comes and sits on me quite voluntarily and purrs and head-butts me just the same as she’s always done, and is still quite capable of jumping up and stealing food off my plate before I even know she’s there.

As an afterthought – I wrote my Christmas cards today.  Last year I couldn’t even hold a pen, let alone write legibly.  

BYM338 12th infusion

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Colin making himself comfy

I can hardly believe that this was my 12th treatment, the time has gone so fast!  I will be having one more infusion to complete the year-long trial – and then what?   When I was at Queen Square a week ago, Novartis had still not issued any specific instructions about what is going to happen next and we kind of assume that we will carry on as we are for the next few months, with everybody getting the same dose as they have done all along.  There is speculation that this will lead into an ‘open label’ phase of the drug development process, with everybody getting a dose of the actual drug, but there is no official confirmation that this will happen.  It seems strange to keep us all in the dark like this, as the hospitals obviously need to organise their schedules in advance and even us patients would like to plan ahead to a certain extent, but this appears to be the way Novartis like to do things where this drug is concerned.  Everything is shrouded in secrecy, and details only revealed at the last possible minute on a ‘need to know’ basis.

I don’t think there’s any doubt that the trial data is going to reveal positive results and I have read a lot about how Novartis will gain approval in 2016 and we will all be on the drug (if we want it)  in x number of months depending on the writers’ own interpretations of very sketchy information.  I hope that’s true, although I would prefer it if we were all on the drug NOW!  My results seem pretty good compared to some that I’ve heard about, I massively salute the ones who’ve kept going through the year whilst seeing no benefit whatsoever.  I’m not sure that I would have been so generous with my time and energy because it has really been quite hard work.  It is a lot to ask of poorly, weak people to show up at distant hospitals having eaten and drunk nothing since the night before, for fasting blood tests and a day of physical strength testing and walking assessments.

Having said that, my visit this time was one of the easy ones with nothing to do except produce lots of blood, keep my pulse rate at a reasonable level whilst they were checking my blood pressure (3 times sitting and 3 times standing) and complete the beloved suicide questionnaire whilst waiting for the drug to arrive, which it did at about 1.30pm. The lovely doctor Natalia was kind enough to comment on how strong my neck and thumbs have become, and I’d thought myself that my neck was less wobbly so it was nice to have that confirmed.  It was very quiet in the department with a lot of the nurses away on holiday and only (I think) one other patient in for treatment for a different condition so it was a lovely relaxed day.  I noticed that I could quite easily open the heavy toilet door and let myself in and out, whereas until quite recently I had to holler for someone to open the door for me.

So after the drug was given and the usual glucose flush through to get every last drop of dug out of the tubes and into my veins, we just had a quick chat with Alex  the physio lady and we were away before 3.30pm.  I told Alex that I had discovered some Chair Salsa videos on Youtube, and how much I enjoyed my attempts at doing the moves.  She was going to have a look at them, so if she ever suggests them to anyone, you’ll know it’s all my fault.  It’s good fun, if you like that sort of thing.  We had an uneventful 2 hour drive home, and I had quite an upset stomach that evening.  I had an early night but still felt quite strange and washed out the following day.  When Colin came home from work I asked him if it had been snowing, which seemed like quite a reasonable question to me at the time (in August!) but it amused him.  I don’t think confusion is one of the side effects of the drug, I think I’m just getting old.

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BYM338 Infusion number 10

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Once again, I worried myself sick about this visit as it included a trip to ‘the big hospital’ in Euston Road for a DEXA scan.  I don’t worry about the scan itself, which is painless of course and not particularly difficult.  I worry about the journey from the research centre in Queen Square (which feels like a second home now) by hospital transport, because on the first occasion I had to do this, it was a bit disastrous.  I’ve done it twice since then with no mishaps, but for some reason I still dread it.  Therefore, because I was in a state of panic, my pulse rate was high, and my ECG readings attracted quite a bit of attention.  Fortunately they know me quite well now, and they were confident that once I’d made the trip there and back I would be fine, which of course I was.  A very nice male nursing assistant was sent to help me, and as usual we borrowed a wheelchair, piled it up with cushions and everything went smoothly.  It can still be quite difficult to get up from the wheelchair though, even with the extra cushions, so I’ve wondered about taking my electric riser seat with me to pop in the wheelchair but didn’t know whether there would be a handy socket to plug it into at the other end.  We had a look around and there are plenty of sockets in convenient places so I think we’ll do that next time.

Basically the day’s events were much the same as usual so I won’t bore you with all the blood tests, urine tests etc.  Instead, here is an interesting but completely useless piece of information – Queen Square was originally named Queen Ann Square, because a statue in the garden in the Square was originally thought to be of Queen Ann.  It was later realised that it was in fact Queen Charlotte, the wife of King George III, the one that went mad.  He was treated for his mental illness in one of the houses in Queen Square, but the royal family didn’t want the general public to know he was ill so only his own personal doctors were allowed to attend to him there, not the general staff.  There is a pub in the Square called The Queen’s Larder, and the story goes that Queen Charlotte prepared all his food there and had it taken across to him.  I’m told all this is portrayed in the film ‘The Madness of King George’, which I haven’t seen yet but I will make a point of watching it.

So nothing more to report really, the drug arrived fairly early, the infusion went without a hitch and we got away at about 3 o’clock.  We had a very quick chat with Natalia, the trial doctor about what is going to happen at the end of this current trial.  At that point, she hadn’t been given any information but I understand that Pedro made some sort of announcement at the Myositis UK conference last weekend about it.  There doesn’t seem to be any doubt that the trial is proving successful in some measure and there are plans to continue treatments in 2016.  What I don’t know is whether this will still be on a ‘double blind’ basis, with nobody knowing what they are getting, or ‘open label’ when everybody gets the drug and nobody gets the placebo.  I think it would be massively unfair to the people currently on the placebo, to expect them to carry on with this very gruelling trial process without actually benefitting from it.  I also think it would be inhumane to continue to withhold this drug from other patients who are not currently on the trial, but want to give it a go.  It’s not a miracle cure, but it’s all we’ve got.  I don’t know which dose of the drug I’m on (if any) but I can say with absolute honesty that I am no worse than I was a year ago, and have seen quite spectacular improvements in my hand and arm strength which of course are essential to so many activities of daily living – washing, dressing, eating etc. Swallowing is no longer an issue either and I remain hopeful that I will get some strength back in my legs but I realise that it will take time before there is enough change to be noticeable.  Surely they cannot and must not delay getting this treatment out to everybody who wants it.  I know that we have no information about the long term side effects, and won’t have for many years, but who cares?  We need improved quality of life NOW!