Hi all,
I can’t remember if I’ve posted here since I was diagnosed in Feb this year… Anyway, it’s been a difficult time, navigating various neurology appointments, getting to know the staff at the neuro dept better than I would probably have liked, chasing forgotten referrals, trying to come to terms with it and looking for something that might help. I’ve felt a little bit of disapproval from some that I don’t want to go onto any DMDs at this point and want to see if there is anything else that may help me, and have discovered the Jelinek lifestyle overhaul approach (can’t remember how it’s described exactly) which I am starting to try and just wanted to put out there as I did a search and couldn’t see it anywhere else on here.
From what I can tell (I’m at a very early stage in doing it - started last Monday) it consists of eating no/very low levels of saturated fat (they describe it as eating a wholefood diet based on plants with seafood - so it’s a bit like going vegan but eating fish), along with vitamin D and fishoil supplements, getting daily exposure to the sun (easier said than done usually where I live!), doing exercise at least 5 times a week, meditating daily and taking medication (DMDs/steroids) as needed and prescribed.
So it all looks very common sense (we know that sat fat is bad anyway) and I feel that, if there’s even the smallest chance it could make a difference, then I want to do it. The more I find out about it, the more I’m hearing stories of people who say they’ve had less and less problems with symptoms - so I’m wondering why more people don’t talk about it or know about it? I asked my consultant if diet may have an impact on MS and she said no way - which made me doubt this stuff I’m finding out - but looking at it, it’s always better to eat healthily and she didn’t even ask what I was eating at the time (had she asked, it consisted of a large bag of maltesers every day, fast food and loads of cola - which is going to have an overall impact on health anyway). I asked about it at my local MS Therapy Centre, where they had flyers for the free Overcoming MS books they send out, and everyone looked at me either blankly or as if I was a bit strange. I sent off for them anyway and can’t find anything very controversial in there, but rather a load of hopeful stuff.
I’m finding the diet hard work at the moment, as it’s such a big change - and I haven’t even started on the exercise yet (am borrowing a cross trainer from a friend today :-)) but now feel I have a bit of hope, which I haven’t had since I was diagnosed. I just wondered if there was anyone else on here doing it? Apologies if there are other threads about it - I just searched the terms ‘jelinek’ and then tried ‘swank’ (as he did a study on a similar diet years ago) but nothing came up.
Thanks,
xx
Hi Blue Sky, I tried the Jelinek diet for about a year and had another relapse so went onto Betaferon. I realised later that I didn’t give it long enough so have been on the diet again for around 2 or 3 years. It is sometimes quite hard to keep to and I don’t keep to it rigidly when I go out but do try and lay off of anything unnatural or cooked in fat.
At home I do try and stick to it. It’s pretty easy as I only have husband here and no other family so it’s ok.
My family have got used to me taking my lunch with me when they ask me to lunch and dad cooks us fish on Fridays which he enjoys doing.
I have been able to keep weight down and all that olive oil is helping my skin. I tend to eat almonds and hazel nuts for snacks.
I feel that I am doing something proactive to help myself. I’m waiting to find out whether I can come off of Betaferon and feel it’s even more important to stay on this very low fat diet.
Good luck with it.
Wendy x
Hey Wendy,
Thanks for getting back - and good luck to you too - how will you find out if you can come off betaferon? I hope it all goes well for you…
Yes, eating out is the hardest thing - we went to a Japanese place the other day as that seems to be about the only sort of restaurant where I have a chance of sticking to the diet! But maybe there are more places - we’ll see…
Luckily I’ve always loved marzipan so all the almonds are making up for the lack of chocolate!
Jxx
Hi J
I’ve not followed the Jelinek or Swank diets, but I just wanted to wanted to make a quick comment about what your consultant said. My neuro has a similar attitude - as there are no studies that prove diet makes any difference, therefore she thinks it makes no difference. However, there are plenty of people who use this forum who will swear blind by it. I’ve noticed certain foods make me a lot weaker, especially fatty meat like lamb, so I cut them out.
Good luck with the diet, I hope it helps you.
Dan
Thanks Dan,
Yes, I’m trying to work out how different foods are making me feel and am sure I can notice a difference after only a couple of weeks on this diet but am sure it must be in my head as it wouldn’t have had time to kick in yet - still, even if it’s placebo, bring it on! Good that you’ve noticed and changed things - hope all goes well for you too,
Jx
Hi, I read the Jelenick book and asked my neuro about it (he’s a really experienced MS specialist) and he said that in general it was a good approach, my neuro mentioned the medditeranean style diet too as being a good one to follow. If you look into Jelenick’s advice he does recommend the ‘whatever it takes’ approach, which includes taking dmds alongside the dietary changes. The diet he recommends has a lot of commonality with similar diets for heart health and cancers etc, so I think he’s got a fair chance of being spot on with his approach. Good luck.
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I’m also following it, I have been for 2 months now - I started only a few days after beig diagnosed. Yes there are no studies that 100% prove it makes a difference, but there are also no studies that prove it doesn’t. My view is that I’d rather follow this diet for 30 years and then find out it made no differance, than to ignore it and find that it would have made a difference.
It’s not the easiest diet to follow but I’m not thinking of it as a diet, more like a complete lifestyle change. I’ve lost over 1 stone alread following this diet and I will benefit from that health wise as well.
Hi, I follow the best bet diet which I think is like the swank’s diet,Its very hard to keep to but Ifeel its worth it,I stopped taking DMDs because of the side-affects I had, I take lots of supplements and feel so much better than when I was meds, I found Judy Graham book really helpful.
hi blue sky
i read the jelinek book when i was diagnosed in 2008.
you’re right there doesnt seem to be much awareness of it in ms groups.
can’t say i stuck to the approach though.
i also tried the best bed diet as simone said.
i couldnt handle the no bread, no butter, no milk and lost way too much weight.
having said that, i’ve put a stone on so maybe another try is in order!
carole x
I followed the Best Bet Diet for about seven years. At the beginning of this, I was going along, deteriorating slowly but not having relapses. After about five years on the diet, l started to have relapses and to get worse much faster. I stayed on the Best Bet Diet for another two years. I then had a brief go (six weeks perhaps) on the Wahl diet, which gave me terrible non bacterial cystitus. Now I eat everything, partly because the weakness in my arms and my mobility problems make it hard for me to cook (and all these diets seemed to me to require mostly freshly cooked food).
So I would say that I kept very strictly to a diet not that dissimilar to the Jelinek diet and saw no benefit. I’m just one person and my MS might be different from yours. But people do know about these diets. One of the things about them is that they are quite hard to follow. You have to really believe in them and, if you do, you may well believe that they’re helping even when they aren’t. And how can you know anyway? Since there’s no parallel universe, you can’t know how you would have been if you hadn’t been on the diet.
This is all coming from a person who is very disillusioned with diets that are going to ‘cure’ your MS. All the ones I ever tangled with (that is Swank, Best Odds and Wahl) promised they were going to cure my disease or at least halt its progression. They didn’t do that. They made money for the people who invented them. Be aware that a healthy diet never hurt anyone, but when you turn down DMDs in favour of a diet, you may be taking a step you could really regret.
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sorry, new to blogging (is that what I’m doing?).
possibly had MS for over 35 years…no pain, just not right balance/confidence wise…boring, and feeling sadly alone…sorry…
…my first ‘MS’ episode occurred over 35 years ago, and although generallyI have always active and healthy in my life, I have 2 very healthy sons (now 17 and 15),but, because my MSIhas seldom caused me any pain, or other trublesome life experiences, I have seldomn received any therapy or medication.
That being said I am hoping to be able to kick off a course of hyperbaric oxygen sessions, which I understand might help, at the Chiltern MS therapy centre in Bucks, shortly.
…I am quite intrigued…MS seems such a personal condition…
Good luck all!
l am one of the ‘oldies’ and have had PPMS for 32yrs. Before diagnosis l was extremely fit and healthy. Never been one for eating rubbish and also never smoked/drank alcohol. l do try not to eat grain - gluten - but do eat meat/fish/nuts/seeds/lots of veg and salad.
l do take a high dose vitamin d3/b12 / omega 3 - and many others. About 9 months ago - someone posted on here about MSSentials - its a company in US that produce a supplement especially for MS - it has over 30 vits/minerals supposed to help us. The only drawback is the size of the tablets - they are LARGE and you need 6 a day. But l am taking them - and l do ‘look’ well and feel more energised.
Never taken dmd’s - but l do take LDN - have done for about 6yrs. For me - it has been a great help. Certainly no cure - but it does make me feel more positive and better able to cope with ms symptoms.
You are what you eat - and although diet may not help MS - eating drinking rubbish is not going to help either. l like to follow Barry Groves regime of eating - hunter/gatherer - high protein/low carb. Do ‘google’ Barry Groves - his books are helpful. [amazon] l learnt about him from someone on here. So keep away from processed food - including bread. l eat bacon/egg/mushrooms/tomatoes - or eggs and smoked salmon/haddock. Almonds and almond milk is delicious. We need to look after ourselves and eat well and exercise often.
So much of the NHS budget goes on illnesses caused by smoking/drinking/ and people sat on their backsides eating - then there are diseases like ours - where we are left pretty much to just get on with it!
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Has anyone considered the Joe Cross Reboot approach, he did a documentary film thingy called “Fat, Sick & Nearly Dead” which can be found on YouTube where he embarks on a 60 day juicing diet in the USA. It’s remarkable how much it’s changed his life and that of the other character Phil.
I’ve started the process of changing my dietary lifestyle, more than anything I need to lose a lot of weight (4-5 stone would be fantastic) because if I am going to trip over my dropped foot it’s going to be a lot easier to get up again and for my wife to help me in the process.
I not suggesting this would be right for everyone, nor that it would change the effects of MS but I do think our digestive system has a few hidden keys.
Cheers
Paul
Sorry, can’t really add to comments about diet: have generally enjoyed a full & healthy diet, my MS seems not to be better, nor worse for any changes…, still there 35 years on!..2 kids (17 and 15 years ago), were proably a bit hopeful (not their fault, but how could I have thought that they might add to my quality of life (was just ignoring latent MS, which I would never advise: put your own needs [whatever they are ], first, and have no regrets, ever!, certainly never blame MS…crap doctors, neurologists, nurses, or overly hopeful life choices maybe … But your MS is not your fault…