Diet, fibre, probiotics - and your mind ... - PMRGCAuk

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Diet, fibre, probiotics - and your mind ...

PMRpro profile image
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There have been several posts and questions about diet and probiotics recently. This ZOE podcast was brought up on another forum and I thought others would be interested. I just read the transcript, far quicker than watching the video and the most interesting bits are later in the article. I'd say start about 14 mins in where they start to talk about medication, chronic illness and mental health because it is what probably applies to us.

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Lookingforideas profile image
Lookingforideas

yep I read it. I’ve read a few things in a similar (ish) vein. Its fascinating to me - im on a whole foods mainly plant based (plus fish, seafood and egg whites) diet so I’m quite pleased there’s ‘side benefits’ to that - feeling a teeny bit smug in the hope my microbiome is ‘happy’ 😂.

PMRpro profile image
PMRproAmbassador in reply to Lookingforideas

Do explain - why only egg whites?

Blossom20 profile image
Blossom20 in reply to PMRpro

It is thought that egg yolks are bad for cholesterol - but they keep on changing their minds about eggs - I think they now say that they're ok..

Blearyeyed profile image
Blearyeyed in reply to Blossom20

They did a test on a BBC programme a few years ago proving that eating lots of eggs a day did not increase bad cholesterol and actually improved good cholesterol , as well as being a vital food source of Vitamin A and D ( felt very sorry for the poor female guinea pig). It was testing the modern myth against the egg yolk , and concluding that going to work on an egg as they used to say was a good thing.

Blossom20 profile image
Blossom20 in reply to Blearyeyed

Great, I agree, thanks!

PMRpro profile image
PMRproAmbassador in reply to Blossom20

Ditto to BEE's explanation. Plus most of your cholesterol is made in the liver - not in your diet.

Dochaz profile image
Dochaz in reply to Blearyeyed

Re eggs and cholesterol... my sister is a long term anorexic (over 50 years and counting), avoids all fatty foods, eats mainly non-root veg and fish and avoids eggs, and YET, her "bad" cholesterol is high!

Blearyeyed profile image
Blearyeyed in reply to Dochaz

Bad cholesterol is not uncommon in long term anorexia suffers , often because of the effect of a limited diet with lower nutrient levels on the body and it's processing functions.

Lonsdalelass profile image
Lonsdalelass in reply to Dochaz

Hi Dochaz, high cholesterol can run in families, maybe that's a reason your sister's is high?

Dochaz profile image
Dochaz in reply to Lonsdalelass

There doesn't seem to be any family history, but it's no doubt due to the eating disorder as Bleareyed pointed out yesterday.Anyway, I'm still eating eggs almost every day 🥚🐔 because although I'm not a vegetarian, I just don't like meat very much. Only organic, never battery. Mostly from a friend's home-raised hens when they consent to lay!

Lookingforideas profile image
Lookingforideas in reply to PMRpro

the Overcoming MS DIET whixh ive been on for 9 years now, is a low saturated fat diet - not low fat but just low SAT fat - & egg yolks are relatively high in sat fat and Woud take up a good proportion of our small sat fat recommended allowance - whereas there’s good protein in the whites so thats the theory behind it …

The diet also tries to skew the omega 3/6 ratio. Back to where it should be - about 1x Om3 to 2 x Om6, - whereas the general UK & USA diets with all the processed and fried foods etc tend to be 1 O3 to around 20 O6! There are varying stats about that in different papers, but they are all miles out of kilter - and all way too high in omega 6 which encourages inflammation whereas Omega 3 discourages it. .

So we are encouraged to stop using rhe allegedly healthy sunflower oil for instance because of ifs high Om 6 ratio and choose fat profiles with higher Om3 - Flax seed, and flax seed oil (which must be fresh, cold pressed and Never used to cook with…, (only drizzled on food after cooking and serving) or in a smoothie if you can stomach it 😂 - chia, walnuts etc - there are loads of research papers around but as usual ive no idea where the references are🤦‍♀️ I must learn to take a fee minutes and write them down 🤦‍♀️

Anyway, sorry, i’ve gone off on a complete tangent from egg yolks - but I thought the omega3 amd omega 6 ratio might be of interest to PMR sufferers as, along with turmeric and ginger, my personal belief is that these things all help with inflammation control (obviously nowhere near the levels Pres does), but in conjunction with, I sort of feel that they’ve helped me on my personal journey - maybe?😀 But clearly didn’t stop me getting PMR in the first place though 🥴🙄. I feel that so far, dont want to jinx it though, that my journey has been quite a lot easier than many on here - might be just lick though😊🤷‍♀️

PMRpro profile image
PMRproAmbassador in reply to Lookingforideas

I haven't used sunflower oil for yonks, since I've lived here olive oil only, and eat very very little processed and fried food. Not counted but I imagine my 3:6 ratio is fairly decent. Never tried flaxseed oil ...

I think my journey has been easier in many senses even if it has been very long. Though if it has been as bad as some, 18 months would have been a trial, never mind 18 years!

Lookingforideas profile image
Lookingforideas in reply to PMRpro

warning! 😊. If you do try flax oil its best to get from a reputable health food shop - refrigerated and in a dark bottle. It deteriorates quickly if not kept cold and dark, its a bit of an ‘acquired’ taste to start with, but should taste almost buttery - if it tastes bitter, or, god forbid, ‘fishy’, its already gone rancid and shouldn’t be used. I order mine fresh from Flax farms in the uk - not sure where you’d get the good stuff in Italy? 😊

PMRpro profile image
PMRproAmbassador in reply to Lookingforideas

Used to be able to get hemp oil easily - but the shop is gone ... It's a bit of a trek to the organic shop but I should make the effort - they have good xmas goodies ;)

Lookingforideas profile image
Lookingforideas in reply to PMRpro

yep, i find some things more difficult to find here in Spain but I guess its just lack of enough research on my part. I bring my own flax oil from the uk. Freeze it over there and wrap in towel with a freezer block and even though it’s thawed by the time we get here it’s still fine. I then decant some into bottle in fridge for daily use and re freeze. The rest immediately- I know that sounds dodgy but it works and the proof of that is the taste - there no doubt is off when it’s off 🤢😂

Blearyeyed profile image
Blearyeyed in reply to Lookingforideas

Part of the reason for avoiding highly processed vegetable oils is to reduce the consumption of Omega 6. Omega 6 is known as an inflammatory nutrient , so lower amounts are a good addition to your regime if you have an inflammatory condition. Olive oil , Avacado oil and coconut oil are also better options. It is also why you can get better results from using Omega 3 supplements alone rather than using an Omega 3/6/9 complex.

As you say , if it fits in with your individual medical history and medications Turmeric , Ginger and Garlic are all beneficial for inflammatory relief as well as other things. Although , I know many people need to be careful with these supplements with heart medications or certain heart conditions.

Egg yolks are essential for me because of Dry Eye Syndrome / Sicca , it's an easy way to get the right type of vitamin A to help improve the production of eyelid oils.

That being said , this can be true for probiotics as well , as there are some immunosuppression conditions or immunosuppressed patients that are advised against probiotics.

It goes back to that thing we often say here , what's a miracle to one person can be poison to another. We all need quite a lot of trial and error and research with diet recommendations before we find the type that fits.

Touching wood on your behalf with regards to keeping on a smooth path with your PMR.

Lookingforideas profile image
Lookingforideas in reply to Blearyeyed

yep, I agree wirh all of that. We ate all different too which really complicates things. Coconut oil and coconut’meat’, are also off limits for me because of rhe high sat fats in coconut in general 🥴 likewise chocolate - although a little raw cacao powder in things like banana ‘nice cream’ is ok 😉

Blearyeyed profile image
Blearyeyed in reply to Lookingforideas

Have you ever tried raw cocoa nibs , they add a nice choc chip style crunch to healthy homemade ice cream or yoghurts and they are good for baking , porridge topping or in smoothies.

Lookingforideas profile image
Lookingforideas in reply to Blearyeyed

yes, as an occasional treat and I LOVE the crunch - but they do contain more of the saturated fat than the powder whixh apparently has some fat removed - so I have to be quite sparing with it - sadly 🙄. Love it though. I also very occasionally have a small piece of a Nak’d Bar Choc Orange flavour devil 😈😄 VERY occasionally !

Blearyeyed profile image
Blearyeyed in reply to Lookingforideas

Yes. Christmas is coming and I hope to find some Nak,'d chocolate in my stocking!

Bluey-1 profile image
Bluey-1

Very interesting. I have read either in your posts or reply to others about a particular probiotic that you recommended. I can’t find the info. Can you remind me of the name please?

PMRpro profile image
PMRproAmbassador in reply to Bluey-1

VSL#3

in reply to Bluey-1

I buy from Amazon box of 60 £12 called Bio-Kult advanced multi-strain formulation.

Bluey-1 profile image
Bluey-1

Thanks, have ordered a starter pack so will see how I go.

PMRpro profile image
PMRproAmbassador in reply to Bluey-1

Hope it suits you.

nuigini profile image
nuigini in reply to PMRpro

I've been curious about probiotics for years, read and followed ZOE for some time in the past and have had brief discussions with my GP and Gastroenterologist. The latter agree probiotics show great potential, but comment that there's not enough known to determine which is best in doing what. (My interpretation of their words).

As you know, in addition to PMR, I have celiac disease and microscopic colitis. Every so often I investigate one or another probiotic in the hope of finding one I would feel comfortable trying.

I've spent the last hour researching VSL#3. I was excited to find research indicating it may be helpful in treating microscopic colitis. However, I cannot find any information on dose except as directed by your physician or pharmacist. The tablets I'm looking at possibly purchasing say 1-16 tablets a day as directed by your physician.

Several sites I visited indicated "must be taken under medical supervision".

All this scares me off, but at the same time I would like to give it a try.

Any comments/suggestions before I spend a small fortune.?

PMRpro profile image
PMRproAmbassador in reply to nuigini

"but comment that there's not enough known to determine which is best in doing what"

Same applies for methotrexate in PMR - but they are keen enough on using it!!!

VSL#3 is a sachet a day for however long you decide to take it according to the pharmacy here. You don't really need them for ever - you seed the gut and then improve your diet to maintain the garden ;)

nuigini profile image
nuigini in reply to PMRpro

Thanks, will give it a try sometime soon.

PMRpro profile image
PMRproAmbassador in reply to nuigini

When you have access to a fridge ..

nuigini profile image
nuigini in reply to PMRpro

Will buy them in LA. 😎 Direct flight to PTY and another fridge so they should be fine.

I think I read somewhere they're fine at room temperature for up to two weeks.

Sophiestree profile image
Sophiestree in reply to nuigini

Just copied this from their website

Storage

How should I store VSL#3?

To preserve VSL#3 keep it in the fridge. The bacteria have been freeze-dried and are live; it is best that they are kept refrigerated.

What if I’ve left my VSL#3 out of the fridge?

VSL#3 can be left out of the fridge for up to one week without affecting the quality of the product. However, VSL#3 must remain at a temperature below 25°C during that time.

Miserere profile image
Miserere

One day the medics might realise that health needs a holistic approach - probably not in my time, though.

Blossom20 profile image
Blossom20 in reply to Miserere

Definitely! It feels like a battle all the time with the medics - they only seem to know about pharmaceutical drugs - and as we know they all have side effects and are not good for us. Pmr is only helped by Pred, but people get better quicker with a holistic back up with diet and lifestyle.

PMRpro profile image
PMRproAmbassador in reply to Miserere

It's another English-speaking problem. Here there is more emphasis on a holistic approach for many things - some of it successful. And going to the doctor is a last resort for many here,

JGBH profile image
JGBH in reply to PMRpro

That also applies in France. My cousin rarely visits the doctor (only if there are very unusual symptoms) but treats himself with the advice of an holistic practitioner. As a matter of fact he rarely needs advice nowadays, because he understands how things work.

PMRpro profile image
PMRproAmbassador in reply to JGBH

"because he understands how things work." - and that in itself is a useful gift!!! I see people in the UK getting appointments at the GP for things that needed a dose of paracetamol or a plaster! Here such things are NEVER offered on prescription - so why go to the GP?

JGBH profile image
JGBH in reply to PMRpro

My cousin (and his family, as was my family) has always been interested in understanding health issues and how to deal with them , only resorting to a doctor for serious symptoms. In European countries, people tend to consult pharmacists for minor issues and only visit a doctor if the pharmacist suggests they must see a doctor. GPs here have stated to suggest people should do likewise but often pharmacists recommend seeing the GP! It’s a different culture which will take time to change. There are also very reliable holistic practitioners who have undergone a reliable long training (not just online courses lasting a few weeks) before being delivered a certificate to practice. I don’t think GPs prescribe plasters or such likes anymore. Things have changed.

PMRpro profile image
PMRproAmbassador in reply to JGBH

People still turn up at the ED in the hope of plasters! It is the culture that was created together with a laziness about looking out for yourself. And probably why the elderly who end up in the ED should have been there long before but they "didn't like to bother you" - like the elderly lady who had lain with a broken leg all night who hadn;t realised they work the same, day or night.

JGBH profile image
JGBH in reply to PMRpro

I agree. There is a culture of ignorance on many levels: some people don’t have the necessary “ability “ to look up for knowledge, or can’t understand. That happens everywhere in the world. But also as you stated through laziness…. Letting someone else to sort things out.

What I found difficult to accept when I first came to the UK , in 1965, is that generally speaking, people looked up to a doctor as a much superior being, a god figure (which doctors’ attitude and expectations encouraged of course) and assumed that “doctor knows all”!! Alas, this still prevails in some instances. As you can imagine that didn’t work for me, having been used to discuss things openly with doctors in France and question everything!

I remember opening a letter (sealed as though I, mere ignorant mortal, should not read what an arrogant GP had written about me!) I was to give a consultant during an appointment in hospital. It made me very crossed indeed and confirmed my thoughts about the arrogance and lack of respect of most GPs and many consultants. He started to say “this French lady (why the need to qualify me, since I had no problem in expressing myself fluently and correctly in English) …. I won’t type the next qualificative… has just returned from France and has “supposedly “ been diagnosed with DVT of the left leg. Would you please etc…. This displays the incredible arrogance of such a useless doctor! I did have DVT while staying with my mother, the pain and swelling was incredible… My mother had to call the doctor in the middle of the night. Not only did he come within 15 minutes but also he came PREPARED from the symptoms my mother described. He brought a clot bursting injections with him! Heparin. On examination he diagnosed DVT and gave me an injection, leaving enough for 2 days and gave my mother a prescription for a week. Stating I should go and have a check up in hospital. However I had to return to England two days later… he didn’t recommend it … but showed me how to inject myself. On my return I phoned the GP to make an appointment to be referred to a consultant. The consultant confirmed the DVT and I started a six month course of warfarin, being monitored every week, in hospital, for a while, then less often till I could stop using it,

So, yes for GPS I am what they would call a “challenging “ or awkward patient!! Because they’re not used to being challenged. However, I find most newly qualified young GPs and consultants much less arrogant and more realistic, thank goodness. There are still too many dinosaurs though.

Regarding the elderly… yes. But it boils down to the fact the NHS system isn’t geared to preventing problems…. they wait till it gets obviously very bad! Not understanding that prevention is always better than cure or lack of it and cheaper long term. That’s the system that’s need reforming, big time. However, the NHS is at breaking point now…. So goodness knows what will happen. Social services are broken too. Sorry about long post.

PMRpro profile image
PMRproAmbassador in reply to JGBH

I had a similar experience - I broke my leg skiing, was offered "we can do it tomorrow or you can go home for surgery ..." Luckily I chose to stay - only my holiday was at an end! The day after surgery the physio was there with the damaged knee in a device that bent and straightened it for however long to preserve function and that was repeated every day. I was discharged without a cast, non-weightbearing but reasonably mobile and with a supply of heparin to get me to my next destination in Germany where I had to get enough to get me home. I think I was also on antibiotics but not sure. When I reached home I rang the GP to request a home visit. Why did I need that, so I explained and it was refused, didn't need to see a GP, didn't need heparin, didn't need anything. I attended the fracture clinic where I was asked if I could still lift my foot. Amazement was expressed - boy, was I glad I'd had the op in Italy! I was put into a 2-part plaster cast with a hinge at the knee that weighed a ton. No heparin, I was mobile! I discovered a few years later that it was now considered medical negligence NOT to give heparin in such circumstances. When the cast was removed I had to ask for physio for rehab - and it was useless, put on a bike which after 3 months of able to do nothing nearly killed me. No balance training, no work on the knee. I did ask in Durham a few years later if there was anything to be done to improve the knee, no far too late and it was pretty poor that it had been left.

I studied with medics when I got my physiology degree and worked with them most of my life. No demi-gods to me. And the attitude of many UK doctors to the medicine practised anywhere else is appalling, "the NHS is the best ..." No it isn't. It is good for many things and equal to others. There are patients with PMR and GCA all over Europe and every country deals with it differently - why on earth can they not get together?

JGBH profile image
JGBH in reply to PMRpro

It so important that people realise the huge difference in attitude and culture rather than being brainwashed about the ‘first class service offered by the HS - the best in the world”…. It definitely isn’t. It trails behind…. Can be damn dangerous at times, quite negligent. Yet it was a great institution, helping everyone in society, free at source. Something to be admired then. Unfortunately this institution is crumbling. And yes, I still meet some wonderful surgeons and nurses but they worked under huge pressure and people have to wait years now for a procedure. Some don’t make it sadly.

Indeed you were vey lucky to have your surgery in Italy, post skying accident. I am pleased I am not the only one to mention how useless the NHS Physio’s are! They give you a list of exercises and they call it physio! What a huge waste of money. Post knee replacement operations I had no option but to see an excellent private physio. How differently they work… can’t see why the NHS Physios can’t do their jobs properly. It’s really not acceptable. Yet we’re stuck with this shoddy service. What about the people who cannot afford to pay for private physiotherapy?

I fear it’s about to get worse, much worse.

PMRpro profile image
PMRproAmbassador in reply to JGBH

To be fair, in Durham I had 2 of the best physios I have ever met - though the ones here are just as good. But in Durham they still did hands-on then and both had had back problems themselves. Makes such a difference.

Francesbarbara profile image
Francesbarbara in reply to JGBH

They should never have made physio (or nursing) a degree programme. I am appalled when I hear of patients being sent a list of exercises and they may never even meet the physio. What on earth are they doing?. I finished my training in 1962 when it was very much a 'hands on' profession. We made proper examination of the patient at the first appointment, taught the correct and safe way to do exercises and followed it up with sessions to check or adapt the procedures according to the healing process. In our second and third years we worked under supervision so that we were 'members of staff' for the hospital. Without us there would have been dreadful waiting lists.

Sadly I'd only go to a private physio now as they have a different attitude.

Sorry for the rant.

PMRpro profile image
PMRproAmbassador in reply to Francesbarbara

Agree wholeheartedly. There is a place for degrees - but it isn't all through the healthcare system - surprised they didn't introduce degrees for porters and cleaners! They ruled out a lot of very good potential nurses who weren't academically inclined. Did hear mention of apprenticeships the other day - effectively how it all used to be done. And given the P&Cs - the debt at the end of uni can't be justified.

JGBH profile image
JGBH in reply to Francesbarbara

How right you are! They must be thinking a degree gives them the right to prescribe a regimen of exercises but that they are above taking patients through the range of exercises. No doubt they are paid more because they are graduates so what an absolute waste of money that is! People should not have to rely on private Physios. When I was told how well I was doing a few months post knee replacements, I told them it was thanks to an excellent private physio. It put their noses out of joints. The truth must be known.

PMRpro profile image
PMRproAmbassador in reply to JGBH

Rehab here is taken very seriously - it was a bit dodgy during Covid because the physios were all busy with ICU patients but usually it is top notch.

JGBH profile image
JGBH in reply to PMRpro

Generally speaking rehab is taken very seriously in continental European countries. Quite a long time ago it was the same here, as you must be aware but it is pretty useless in the UK now. It should not be. Clearly they’re pushing people to go privately.. good bye NHS very soon, I fear .

Morningdew62 profile image
Morningdew62 in reply to PMRpro

Agree with you - the NHS isn't the best! It's failing to provide its service. I'm in the hospital at the moment because a doctor during a colonoscopy procedure perforated my intestine. Now I'm dealing with the consequences - pain, temperature, enormous stress and waiting for what is going to happen next. A doctor said they will try to avoid an operation as it is very risky and might be fatal complications. Now I'm on a liquid diet and various antibiotics. The attitude of staff in A&E where I was admitted at first was appalling. I asked a few times what is my treatment plan. I was waiting for the answer for a half day and still didn't get any. The nurses came to me at 3.30 am to do the drips. I was surprised why It's so early. But on my records, it says the med was given at 6 am which isn't true. As a result, I had a very big gap between the next dose of antibiotics. Btw the doctor's communication is very poor. The visit last 1 min. I was lying down all night with my clothes on I have arrived and not a pillow. They told no pillow because of a crisis. But same time I saw the new patients got the pillows. Clearly there is a lack of empathy and well wishes. They don't have respect for patients as they loudly talk and laugh at night just standing in the middle of the ward where patients were sleeping. The cleaning man came at 4 am to clean the floor with a very loud washing machine on. I couldn't believe how they treat their patients! Probably it's the best time to clean the floors at 4 am! I lost my faith in NHS! They need a huge reform. Sorry for my rant - I'm under such stress. It was enough that I was dealing with my PMR and osteoporosis but now I have to deal with the mess I'm in.

PMRpro profile image
PMRproAmbassador in reply to Morningdew62

I think it is fair to say it depends on the hospital - and too many are failing. Were you sedated fr the colonoscopy?

Morningdew62 profile image
Morningdew62 in reply to PMRpro

yes, I was sedated

PMRpro profile image
PMRproAmbassador in reply to Morningdew62

Here it is done without sedation - and personally I think it is better because they have to be a great deal more careful "going around corners" when the patient is watching what is going on! Reduces the risk of perforation which is quite common in the USA where most colonoscopies are done under GA.

SusanEleven profile image
SusanEleven in reply to PMRpro

I had my colonoscopy without sedation after I read that it forced the docs to be more careful. Plus I could drive myself home. I’m in the US and was lucky that there was one gastroenterologist at my medical center who offered no sedation colonoscopy. I never felt pain. Sometimes uncomfortable pressure which she was able to relieve by shifting her movements slightly.

PMRpro profile image
PMRproAmbassador in reply to SusanEleven

Exactly! Plus you get to watch the TV!

Morningdew62 profile image
Morningdew62 in reply to PMRpro

if I would know this before.. I had a couple times colonoscopy privately with sedation in the past, everything was fine.

Flivoless profile image
Flivoless in reply to JGBH

Interesting that you mention arrogance.

JGBH profile image
JGBH in reply to Flivoless

Have you not experienced this?

Miserere profile image
Miserere in reply to PMRpro

Oh, gosh, how behind we are and how in control the pharamceutical industry is! However, this is on the brink of change. I requested a blood test because I've only had two - the last one over a year ago. Guess what they don't seem to have checked?? Inflammation - which is what I was most concerned about. Maybe there is more than one reason for the crisis in the NHS

PMRpro profile image
PMRproAmbassador in reply to Miserere

See my reply just above ...

JGBH profile image
JGBH in reply to Miserere

yes, incompetence too often and unwillingness to find the real cause of issues. Preferring to prescribe drugs. Big pharma tend to give bonuses to doctors who prescribe their drugs… It’s all greed led .

PMRpro profile image
PMRproAmbassador in reply to JGBH

Not directly in the UK - QOF payments are from the government - the taxpayer!

JGBH profile image
JGBH in reply to Miserere

if only! It will take a very long time if ever. Big pharma remunerate them to use the drugs they manufacture. In truth, we need both allopathic and holistic medicines.

Bluey-1 profile image
Bluey-1

I’m up to trying anything. From what you’ve written and I’ve read it all makes sense. Your recommendation is invaluable as you I never know where to start turning up at the Health Food Store…so many pills, supplements etc.

podo profile image
podo

My herbalist recommended a probiotic called Optibac. Does anyone know if this is a good choice?

Blearyeyed profile image
Blearyeyed in reply to podo

Optibac is a good option

PMRpro profile image
PMRproAmbassador in reply to podo

To some extent it depends on you and which bacteria you need. It is worth trying a few good ones - but good also equates to pricey!! If it is cheap - you might be better off with a tub of yoghurt!

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Yes, I agree , knowing what probiotic is better for you is important but cost can be prohibitive. Optibac , Extra Strength seems to be a recommended option when it gets discussed by dietitians. Plus , if memory serves it is one of the brand's tried in some research trials by non affiliates .

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

I don't think the VSL#3 I use is meant to be used continuously - and taking a daily pill is never a substitute for improving your diet to encourage the seeds you have planted to proliferate. VSL#3 is live - must be kept in the fridge.

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Totally agree. Yes ,the VSL #3 sachets are recommended for patients with certain conditions and after certain types of treatment or surgery if I remember rightly. I'm using them at the moment to build up my gut health again after antibiotics. I have a tablet for general use , but again that has much to do with my absorption problems getting in the way of me getting much of anything from my diet alone , no matter how good it is!

Lookingforideas profile image
Lookingforideas in reply to PMRpro

ha ha I was just thinking that about the Yoghurt - or kimchi - im just eating soy yogurt now with a very late ‘brunch’ full of oats seeds nuts and fruits - I read a rally interesting how to make your own fermented foods the other day. Im sure it was a linkk from Zoe - ha, I use the term ‘sure’ loosely 😊. Ill try to find it later

PMRpro profile image
PMRproAmbassador in reply to Lookingforideas

I keep telling myself I need to investigate making my own kimchi, really enjoyed it in S Korea, but any sort of fancy food preparation isn't on my radar at present! Just the thought of finding the spices is daunting living here! I'll have to stick to sauerkraut ...

Lookingforideas profile image
Lookingforideas in reply to PMRpro

ive not trued it yet but the blike bwing interviewed said its really simple and can be done only wirh salt and then all the other spices etc . Are optional amd or changeable to whatever you fancy - im hoping it’ll work. When I ever ger round to it I’ll report back .

HeronNS profile image
HeronNS in reply to podo

Further to PMRpro's comment about yoghurt: kefir is also a good option, and it contains many more strains of lactobacillus than yoghurt so may be even more helpful. Just avoid the overly sweet versions! I started out by diluting a sweetened version with plain, but for years now have just drunk the plain kind. If you haven't consumed it before, start with a small helping. A little goes a long way, and you probably would never need more than 4-6 oz daily.

I know I've mentioned many times before that my friend is a nutritionist. She's told me how important it is to have good gut health. Bad gut health has a lot to do with the problems we get with our health. I've been taking a good quality probiotic on and off for years. Especially important when one has to have a course of antibiotics.

I buy from Amazon £12 for a box of 60 called Bio-Kult Advanced Multi-Strain Formulation.

Blearyeyed profile image
Blearyeyed

I will have a read later . It's funny as my GP has just told me to increase my probiotics along with putting me on a course of antifungals , as they have now discovered an underlying gastric fungal infection behind my kidney infection , thanks to a badgered request for a stool sample test!I remember reading an article last year about how probiotic regimes and how they should be recommended for Alzheimer's Disease as it can slow down cognitive decline significantly.

Testing of diet and gut imbalance and its effect on Parkinson's also seem to be showing interesting results.

There's a reason to take them if no other.

Nightingales profile image
Nightingales

Hi. I am probably totally confused maybe because I am not taking probiotics! I have a bottle in my bedside drawer that I bought when I was convinced to try, then the next thing I saw was that people on steroids shouldn’t take them because of the risk of infection. I am on 12 mg currently. Should I start taking them? They are Optibac live cultures, all the usual lactobacillus etc.

PMRpro profile image
PMRproAmbassador in reply to Nightingales

I and others have taken probiotics for years while on pred. I don't take them continuously though.

I think some of the "don't take them when on pred" comes from a misunderstanding of how it all works. If you are taking pred for its immunosuppressant action the concern is the idea that probiotics "boost" the immune system. Obviously there is a contraindication in taking an immunosuppressant and something that "boosts" the immune system at the same time,

However, my view is that when you have an autoimmune disorder you have a "deranged" immune system. Is it deranged because your gut microbiome is also deranged? And a good probiotic should give your immune system a boost by getting your gut microbiome back to being a healthy one.

Nightingales profile image
Nightingales in reply to PMRpro

Thank you for your, as ever, sensible reply. I will start taking them. I have diverticulitis and GERD anyway and I am full of adhesions from endometriosis, so if they help all well and good, especially if they improve my brain and mental health.

PMRpro profile image
PMRproAmbassador in reply to Nightingales

The way I look at it, there is only one way to find out.

Ridge profile image
Ridge in reply to PMRpro

That makes huge sense

JGBH profile image
JGBH

PMRpro, thank you so much for the link to this podcast! So interesting and easy to understand. In simplistic terms, good health through good food, and good food doesn’t have to be more expensive as the Professor stated. Although everything is getting more expensive at the moment because of the living crisis. Looking forward to learning more from those studies.

PMRpro profile image
PMRproAmbassador in reply to JGBH

While shopping on Wednesday I was surprised to see loads of veggies on offer. Not in the UK ...

Seekingasolution profile image
Seekingasolution

I tried leaving out meat but eating eggs, fish, prawns and more plant based recipes. Didn’t notice any difference and my cholesterol actually increased. Now switched to nearly totally plant based ( apart from milk in tea in the morning and occasionally a little butter on bread as and when ) but my condition has improved enormously. This is the first thing that has really made a consistent improvement for me so I’ll be sticking to it. Just looked at a recipe book by Dr Rupy Aujla which started with the premise that medicine is going to have to include what we eat in order to cure us. His book is full of totally plant based recipes and so far delicious!

Recipe butter nut korma
HeronNS profile image
HeronNS

Very interesting. I've been saying for years how important I've found caring for the microbiome has been for me. Also aware of some of the Canadian studies. For example a family from Africa (I think it was Somalia but might have been Sudan) had several children. The younger ones born in Canada were both autistic. It was eventually determined that it was the change in diet when they moved to a Western country, because their native diet was chock full of fermented foods which they didn't eat after they came to Canada. There was also a story about a boy whose gut had become populated with some sort of bacterium which severely limited his development. The mother talked a doctor into prescribing antibiotics for the time when he would be developing language, a window she didn't want him to miss. When we saw him as a teenager on the small screen he was eating some yoghurt and spoke on camera. He still has major challenges but it's believed that damping down the toxins produced by whatever it was at a key moment in his development did permit his brain to function more normally so he could develop language skills.

If these major health issues can be caused by microbiome imbalance, I'm sure the generally less dramatic ill effects we adults endure in the course of our illness and treatment must also be susceptible to the action of our microbiome on our brain.

oadd.org/wp-content/uploads...

piglette profile image
piglette

I am doing the ZOE fasting research test at the moment. You eat in a ten hour window. My sister said she ate in an eight hour window anyway. I discovered that did not include the time she also had the odd glass of wine! I then discovered she thought it was a ten hour window when you didn't eat! She has decided not to join in.

PMRpro profile image
PMRproAmbassador in reply to piglette

Does that stop a morning cup of tea?

piglette profile image
piglette in reply to PMRpro

what is tea?

PMRpro profile image
PMRproAmbassador in reply to piglette

Philistine!

piglette profile image
piglette in reply to PMRpro

I thought it was Fernet Branca that you have in the mornings?

PMRpro profile image
PMRproAmbassador in reply to piglette

If only ... My favourite cough medicine :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

You can drink herbal tea or black tea/coffee outside the eating window

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Nah - that doesn't work ...

piglette profile image
piglette in reply to DorsetLady

but not cough medicine!!

Bcol profile image
Bcol in reply to DorsetLady

That wouldn't work for me😢

HeronNS profile image
HeronNS in reply to piglette

How are you finding this? Eating in a ten hour window doesn't sound like fasting to me; it might just mean a slightly later breakfast and a slightly earlier evening meal. However I find I don't sleep well if I go to bed hungry, and an alternative of not eating until midday would definitely not work for me, no matter what health claims there might be!

piglette profile image
piglette in reply to HeronNS

I discovered that I always eat in a ten hour window so I am reducing to nine instead.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to piglette

I did start the program, but as I eat within that timeline anyway, I didn’t think it was going to alter the elements of my life being studied so I opted out.

piglette profile image
piglette in reply to DorsetLady

I did think 10 hours quite a long time.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to piglette

Mine’s about 9 hours most days ….

PMRpro profile image
PMRproAmbassador in reply to piglette

Surely that's where you would start to get into it easily? Apart from my breakfast tea I usually don't eat from 8pm or slightly after until after midday the next day, and often not until 2pm or later.

Bcol profile image
Bcol in reply to piglette

I do the other studies, but decided this one wasn't for me. They even e- mailed me and asked why I wasn't taking part!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bcol

Yes I’ve done others, but wasn’t sure what I, or they would learn from this one.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Possibly how many don't need to change? What you don't find is as important as what you do find.

Bcol profile image
Bcol in reply to DorsetLady

Given the questionnaire they sent me fill in about why I wasn't taking part it would probably have been quicker to just join!!! I still might revisit it

Louisa1840 profile image
Louisa1840

Thanks for posting this Pro. I have forwarded the link to a friend of mine who is working in this area. What do you take from the transcript? Would it be too simplistic to say bump up your intake of kefir, kombucha and kimchi & all will be better if not well?

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

Probably!!!! But something that should be considered I suppose.

Louisepenygraig profile image
Louisepenygraig

I always prefer reading to listening! It took me around 10 minutes to read the transcript! I had watched another Zoe video which suggested that, throughout the world, people who eat around 30 different plant based foods have the healthiest microbiomes so I've been doing that. It's not too difficult - for starters I drink tea, coffee, redbush tea, and hot chocolate in a day so that's four straight off. A curry might add a few spices, and so it goes on. This podcast talks about fibre and fermented food so that's the next thing to look at. The video I mentioned above did mention them in passing so I've added kefir to my morning yoghurt - it has a lot more bacteria than the yoghurt. I also bought fermented sauerkraut. When I've finished that I'm going to try kimchi which has the added advantage of having about 10 plant based ingredients in it! When I've looked at bought sauerkraut before only the vinegar based non fermented ones seemed to be available in Tesco but now they have fermented sauerkraut and kimchi!

PMRpro profile image
PMRproAmbassador in reply to Louisepenygraig

Bit difficult to make sauerkraut without fermenting it! Probably they have just realised it is a buzzword for selling it! It will have been fermented - just not as long so fewer probiotic bacteria.

Louisepenygraig profile image
Louisepenygraig in reply to PMRpro

Maybe it's fermented then sterilised!

Zebedee44 profile image
Zebedee44

Having listened to this ZOE podcast I find I am still confused but hoping that in saying nothing about specific medical conditions the presenters are confident that healthier gut bacteria by whatever means is better than poor gut bacteria. I wonder whether we could get an answer from the ZOE team.

My home made Kimchi from last weekend is like a garlicky, zesty coleslaw, not unpleasant but not something I want to eat every day.

Broseley profile image
Broseley

I've been an advocate of probiotics for years, having knowledge of human and animal biology. When, in about 1992, my pet rabbit developed chronic diarrhoea as a result of having antibiotics prescribed for an infection, the vets were not hopeful. They said rabbits can't survive without their gut flora. However, I know that rabbits practise coprophagia, i.e. eat their faeces (they produce two kinds, the first ones are soft, which they eat, the second are the bunny currants which they don't). I tried feeding my rabbit live yogurt, then I hit on the idea of feeding my rabbit some carrot on which I rubbed some soft faeces from another of my rabbits. This worked, and he recovered. I am convinced that the faeces replenished his depleted gut flora. A primitive experiment, but I was desperate. A few years later and vets started prescribing probiotics for sick rabbits and other animals. (They have also modified the antibiotics now so that they don't wipe out the gut flora). I often wonder why human medicine has not followed suit? My father in law has suffered from gut issues ever since contracting c.difficile in hospital and being treated with broad spectrum antibiotics. I have tried to persuade him to try probiotics, to no avail, sadly.

PMRpro profile image
PMRproAmbassador in reply to Broseley

They have started using faecal transplants ...

Broseley profile image
Broseley in reply to PMRpro

I saw that on a TV programme a few years ago. Not yet widely practised though....

PMRpro profile image
PMRproAmbassador in reply to Broseley

Seems fairly common in Europe, mainly for C.Diff

thelancet.com/journals/lane...

JGBH profile image
JGBH in reply to PMRpro

Again Continental European countries taking the lead! I really can’t understand why they move so slowly in the UK. Can’t be just money… more like a habit of not accepting that prevention is always better than the cure (or lack of it).

Broseley profile image
Broseley

Thanks!

tangocharlie profile image
tangocharlie

If anyone is interested in testing their gut microbiome I recommend chucklinggoat.co.uk/ they have special offers from time to time

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