PPMS Fasting mimicking regime

Primary progressive MS
1

Is there anyone out there who he has had experience with a fasting mimicking regime?

I, first, got excited by this when I saw an article in a newspaper https://www.theguardian.com/science/2019/oct/02/diabetes-drug-offers-hope-new-treatment-multiple-sclerosis

The underlying research paper https://www.cell.com/cell-stem-cell/fulltext/S1934-5909(19)30350-9 was followed by a number of newspapers.

On the face of it, it is about a drug, Metformin. You cannot get it from a doctor for MS but that is ok because, if you read the paper, the drug merely is there to replace a fast.

Fasting is the key to 1. stopping the immune system attacking the nervous system and 2. replacing the the myelin sheaths around the nerves in the brain.

It is true that I am not a rat but, since there is no treatment for PPMS, I thought that my research into fasting was worthwhile.

Neurologists cannot suggest a fast because it is not backed up with research on humans but that is years away and I do not have years.

Anyway, I am no good at diets so I bought the Prolon diet suggested by Prof. Longo. https://youtu.be/dJVF4sCylsw. Incidentally, he does not benefit financially.

I don’t like the word diet as it suggests that you are doing it to lose weight. I am not. It may have that effect but only on the side. I prefer “regime”.

There are, as far as I can see, two things to understand–firstly it is not the fast which produces the result but the “refeeding” afterwards and, for that, you need to go onto a Mediterranean type eating regime.

Anyway, I am now onto my second monthly fast and I wanted to know if anybody else had had any experience of this.

I would say that I feel better generally but I still have brain fog and balance issues.

Apparently, it will take a few months to see real changes.

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Hi Scots man, Swiss man here. Diet/Regime does have an effect on our wellbeing, but not sure if it can halt the illness altogether… Im looking for a diet as well at the moment and found this [Edited] The Charité Berlin does at the moment a clinical trial to look at 3 different diets (fasting, ketogen and vegetarian/antiinflammatory), so its not completely nonesense obviously. Of course (as apparantly always) the trial does not consider people with ppms, but hey, we have not much to lose if you ask me, so i will do research on diets and decide for one… cant wait years neither. Had a look at vitamin d as well, sound promising too… not sure if its possible to combine a diet/regime with lots of vitamin d supplements…

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Hi guys I’m going to give this a try…like you say can’t wait around for “research” for PPMS. Read up on the links …thanks, very interesting. I am going to do 5 days every two months…which seemed to be the timescale Dr Longo is planning for research purposes. It’s my version of food rather than prolon diet. Like you say the refeeding sounds key …shame … I had visions of hitting a pile of cheese on day 6! All the best…

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Well done you. I have every intention of following suit and 5 days seems slightly less scary than 7 to me and a good goal.

I have always been able to manage without food for quite a while fortunately, in fact I always tell people that I “run better on empty”. I’m hoping that I will find 5 days do-able I just can’t start it at the moment because I’m right in the middle of investigations for an overactive thyroid and so I don’t want to skew my blood tests!

I would love to know how you get on. Good luck!

Elaine.

5

Ok, so I have decided to go for it now!

I am intending to do a 5 day fast every 2 months until July at least and see how I go.

I’ve completed day 1 and I’m determined to make it. Over my 30 year MS history I have at various times tried every “exclusion” diet going…gluten/dairy/wheat etc and noticed no difference whatsoever. The only times I have ever had any improvement however small, is when I have not eaten at all so the fasting approach should suit me very well. Already today I have far more energy than usual. I am hoping that this type of fasting is kick starting some kind of healing at least? Time will tell. The hardest part for me has been to get my hubby on board because he does all the cooking in this house (and he is excellent at it unfortunately!) and loves to provide me with beautiful and nutritious meals, but even he can see it’s worth a shot. It’s probably one of the biggest experiments I’ve tried along the way (and there have been many) but I am cautiously optimistic! Anyone else giving this a try?

Elaine

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Yes, cheese is about right as the rats in the study could eat anything they wanted on the off diet days! I have now fasted on 4 occasions and no results so far but it not helped by the fact that “work” keeps getting in the way of a good diet (Mediterranean). I shall try it for a year, I think. I see nothing els worthwhile.

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It is huge step to go outside of the medical safety blanket but in the case of PPMS there isn’t one and, for what I can see, the Medicines for the other types of MS are not very effective and have side-effects. I do hope that this will help you but I have done no research whatsoever on the other types of a mess. I want to wonder if anybody has?jmedicines for the other types of MS are not very effective and have side-effects. I do hope that this will help you but I have done no research whatsoever on the other types of MS. Do you let me know how you get on And I apologise for taking so long to respond. I thought no one had replied!

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Well I did my first five day fast …hit the wall on Day 2 but powered (I jest) on through to complete 5 I felt surprisingly good for it. I shall do the 5 day fast every two months til July. I had tried the Wahls diet previously but the weight just dropped off me and I didn’t feel good so this fasting has had a promising start.

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Hi Scots man, it’s thanks to your original post that I have even been considering this. So thank you!

I’ve just been waiting to take the leap, and trying to decide whether to go 5 days at a time or alternate days like the original rats I think…I’m sticking with 5 days, this is day #2 for me and I’m finding it fine - well, I haven’t tried to eat my husband yet, but he does have an annoying habit of watching all the foodie programmes! His saving grace is that he does actually love to cook mainly Mediterranean dishes so that could be useful!

I am PPMS too and obviously not been offered any DMD’s either, I don’t think I’ve suffered because of this. :wink: I’m also on no medication at all for the simple reason that I seem to be extremely sensitive to all of them, so trying Metformin would never have been on the cards for me. I think It’s definitely worth a try. What’s the worst that can happen? :wink:

Elaine

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Hi all. Pretty new to being on a forum. Tried it several years ago but was too new to the whole PPMS and not really wanting to think about it. I did the Whals diet a couple of years ago. I felt good on it but at that time my only problem was foot drop after a walk. Last year I took part in a study of our gut bacteria. My husband had to take part as well. He wasnt impressed with collecting and freezing his poo. There seems to be a lot of interest and promising findings involving the bugs in our gut. It is thought that an unhealthy gut biome opens up the problem with our immune system. I think the fasting and refeeding is helping to increase the healthy bugs we require. The study was the international MS microbiome study. I’m keen to see if diet can help as things are progressing for me in the wrong direction.

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Well, you would have been after day 5 by now. I hope it went well. I was not hungry for the 3-4 days and then father keen on (Mediterranean) food after that. You and I sound much the same. I wish you well.

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Well done! I think that everyone will have a different experience on the fast. I am highly motivated so I guess that this does help me. There is no other alternative for me. I see from your previous email that you are going to do this every two months whereas I am doing it every month. It will be interesting to see what the difference is.

What are you eating when you are not on the fast?

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There is no doubt that taking part in studies will do good in the future. Unfortunately, I do not think I have much of a future unless I take charge and make myself the study.

There is no doubt that taking part in studies will do good in the future. Unfortunately, I do not think I have much of a future unless I take charge and make myself the study.

I am not keen on the word “diet”. I prefer the word “fast”. It is the refeeding after the first which apparently does the job and I am not interested in losing weight.

I am not keen on the word “diet”. I prefer the word “fast”. It is the refeeding after the first which apparently does the job and I am not interested in losing weight.

You are doing good and I wish you well.

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I did reply earlier but it does not seem to have hit the form. Anyway, thank you for responding.

As you will see from my posts later, I’m not keen on referring to this as a diet. I prefer to say that it is a fast as it is the refeeding after the absence of food which seems to make the difference.

The clinical trials that you are referring to I have not seen. Can you send me a link? I’m always interested in researching what is going on.

On another note I had a wonderful holiday in Switzerland. You could throw a stone into France from where we were and the place that we were exchanging had a swimming pool so the family had a wonderful time over three weeks.

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Hi guys, I saw that the links I have included in my last post were not published. So I will try it again: [Edited. Please contact poster direct] This is a summary of the clinical trial I was refering to earlier. Have a look also at the smaller study that was preceding the clinical trial above: [Edited. Please contact poster direct] Have a good end of the week

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Hiya Scots man. I completed my 5 day fast and I couldn’t be happier that I decided to finally take the plunge. I am EDSS 8 so I’ll try anything that doesn’t involve drugs to turn back the clock :wink:

I didn’t find it too difficult at all. I had a headache day 2-3 but nothing major, and by the end of 3 I felt very good indeed with more energy and much more clear headed! I even woke up happier in the mornings, which is a first for me! The level of hunger stayed about the same throughout and was manageable. Only black coffee, tea, or water was consumed throughout incidentally! :wink:

I’m hopeful that I might have kick started an approach that actually might help I’m just slightly undecided on when to undertake my next fast - but I certainly shall be!

We normally eat well here and are very interested in nutrition, especially since my husbands illness (Lymphoma) which required a Stem Cell Transplant, but since finishing this fast I have enjoyed “eating the rainbow” for the re-feeding phase, even more! It shall be known as my DIY stem cell renewal! :wink:

Best of luck to everyone. Elaine. :wink:

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OK, didnt work, so google this: Lina Samina Bahr, Markus Bock et al., Trials 21, Article number: 3 (2020), „ketogenic diet and fasting diet as nutritional approaches in multiple sclerosis (NAMS) : protocol of a randomized controlled study“ I also recommend the books of Prof. Valter Longo and of Prof. George Jelinek. I started a vegan diet (focus on daily vegetables/salad, couple of cheat days/month) + probiotic joghurt (rarely) + fish (1-2/week) + omega 3 oil (daily) + fasting every 6 month (around 1 week) + 14h fasting/day The ketogenic/low carb is nothing for me, im already slim and should not lose more weight and its not realistic socially for me not to eat carbs… The fasting diet should have similar effects. The idea behind the vegan stuff is to lower the intake of saturated fats (omega 6), mostly in animal products, and increase omega 3. The research I did on nutrition and health/MS is very clear about this. Google Norsan Omega, I tested my omega 6 and 3 levels with that company. Have a good weekend

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Well, your post helps me because I had no idea there was something called EDSS. I see that your disability is very significant. I judge, myself, that I am EDSS 4. My walking is pretty rubbish and anybody behind me would think I was drunk but I continue to work and employ a significant number of people and hold down a very responsible position.

It is interesting that your husband has a significant problem as well. It is a pity there is no stem cell transplant available for us! But the fasting or at least the refeeding should make the stem cells proliferate and work for us.

I do hope that you try it again. My own view is that it will take possibly as much as 12 months before a an improvement is seen. I am on my fifth fast although the third one was broken because of a work related issue.

I do not see an improvement yet – if anything I am worsening but only time will tell.

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Hi

I have pretty much returned to a veggie plus fish diet but reduced milk and bread intake. I’m not sure the bi monthly fast is frequent enough but will see. I didn’t want to lose weight so feared the once a month fast would drop my weight too much in the long term. So far I have added back 2lb of the 4lb lost from my first fast…so I reckon I’ll maintain my weight overall. Let’s all compare experiences as we attempt to gain a rare positive to our hopeless position …

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I am on my fifth fast or more probably the fourth fast because one of them was interrupted.

I have lost no weight. And that was intentional.

I do not see any improvement yet. However, I am not surprised as I believe that it will take a long time. Anyway, what do I have to lose?

Yes, we should compare.