Future clinical trial with good evidence - MPN Voice
Future clinical trial with good evidence
Very interesting. Thank you for posting.
Thank you. Sounds promising.
Very interesting - thanks for posting.
Noted at the start of the article is stem cell transplants being an option (but for very few). What I would love to see more research on is how when one fasts on about day 4 stem cells are produced. The body does a triage and they go to where needed first - but how quickly, in general do they go to the bone marrow? Has anyone seen anything on this?
I certainly know that when I fast for more than 4 or 5 days my numbers come right back into line (it needs a little time after finishing the fast for this to happen).
What kind of fast do you do for 4-5 days????
A water only fast.
However - I am already eating Keto style (low carb, high fat, moderate protein) - so my body is already getting energy from fat NOT carbs. So when I start a fast it simply switches from external fat sources to on board. It does not have to go through carb withdrawal symptoms (awful). Search Dr Jason Fung for all things fasting.
Rough and ready body process: day one - uses food consumed yesterday, day 2 - autophagy (uses old and bad cells for energy), day 3 - switches to on board reserves, day 4 - starts the manufacture of stem cells. (someone won a Nobel prize for bits of this)
For me - it has really helped. I have done fasting with my specialist looking on (not what she was trained for and knew about - but certainly is interested in what the results are and has noted that venesections have become far and few between. I am able to go for blood tests as I want, so therefore if I am feeling bad - get a test done (and yes, sad results) so I fast and then get another test done about a week after the finish of the fast and all is well again. Venesection avoided, but more importantly - my body is sorting itself out. Now I am trying to incorporate fasting as a standard way of living (say 1 week per month) and see what that might do. There is so many exciting things here.
Fasting has many benefits, although many different opinions exist for length of time, etc.. Autophagy is a mechanism in which our bodies get rid of old biomaterials to produce new ones. Unfortunately, most people rarely, if ever, reach autophagy due to common dietary habits. There is a plethora of evidence that autophagy, and fasting in general, reduce cancer risk.
I do not expect autophagy while eating (maybe others might?) - but certainly day 2 and 3 of fasting is where it happens for anyone. The body realises it has no food coming in so goes on a hunt for energy, and doing a clean out of the old and bad is a quick find, immediately available. Just so clever.The many options for fasting are great. If anyone is interested I think Dr Jason Fung covers them all. He has done unbelievable amounts of research on this, and his books are so helpful - with documented and referenced results. I decided to pay for these as the 'diet' of fasting was costing me nothing and I was more likely to do it with information on hand. Others also have info on this - he was who I happened to find at the beginning. I do believe he has helped rewrite diabetic advice for UK health dept.
Yes, this is correct. Autophagy does not occur in a "fed state", which is why most people never reach autophagy (most people eat on a regular schedule). "Starvation" in humans is defined as 24 hours without food. At this point (beginning of day 2), autophagy starts.
There are many health benefits to fasting!
check the difference between 'starvation' and 'fasting'. One is imposed, the other is willingly restrict calorie intake.One has quite a different overtone to the other.
I am using proper medical terminology. “Starvation” is a metabolic state in which glucose and glycogen stores have been depleted, which usually occurs after 24 hours without food. Therefore, one would be in a clinical state of “starvation” while willingly “fasting” for 24 hours without food.
What I would love is for someone to do some serious research into fasting and how it affects people with PV.I am whistling in the dark somewhat.
So you think 3 days are ok for someone with normal weight? I believe this is my top limit! Also why with autophagy we get rid of old and trash biomaterials and not something else like fat that haa more energy??
Ketosis (burning fat to create ketones - a substitute energy source) starts around the same time as autophagy. Autophagy supplies the body with amino acids (needed for protein) by breaking down old biomaterials (mainly proteins and cell debris), and ketosis burns fat to create ketones, which are an alternate energy source for your body in the absence of carbohydrates. So in a fasting state, you will burn both fat and protein (old biomaterials).
Before starting any fast, I would check with your doctor. While I'm sure some people can tolerate long fasts, going on a water-only fast for lengths of time mentioned in this post (3-5 days) can be dangerous for some people. Most people fast for less than this amount of time.
I do already intermittent fasting (14hours) for 6 months. I was interested to know how else can we achieve autophagy if 3 days water fasting is not perfect. Is any other type of nutrition or fasting?
Autophagy starts around 24 hours with no food. This is clinical starvation state. It is not necessary to water fast for 3 days to reach autophagy since you will be in autophagy by the end of day 1 or the beginning of day 2.
So you think that 2 days ( maximum) of fasting can do the job??
Most people will be in a state of autophagy after water fasting for 24 hours, so yes, a 2-day fast will mean you will be in autophagy for 24 hours (the second day).
And how long does it take for autophagy to complete?
You will be in autophagy for as long as you are in a starvation state, so the only time it will stop is when you consume food after your fast.
So 2 days maybe are not enough?
It depends how long you want to be fasting. Only you can answer that for yourself. The longer you fast, the longer you will be in autophagy. There might be some studies that have looked at the benefits of different lengths of fasting, but I have not read them.
You could do 2 days at regular intervals. A lot of people do 2 days every week.It is much easier to fast if you are eating Ketogenically. I would hate to try and fast without this.
Do have a look at what Dr Jason Fung says. He is one I go to for advice. He has clinics, many podcasts, many youtube interviews as well as his books.
Well done on the intermittent fasting. Water fasting is an extension of that. It is simple to remember and do. There are other sorts of fasts - but I am for simple and easy to remember - and it does the trick for me.
I am interested in your statement about 3-5 days of fasting can be 'dangerous'. Could you please point me to research/documentation to support that statement?Everyone needs to do their own research on the matter. I did that and took it to my doctor and specialist. BOTH of them said that they had no training in the area (wonderfully honest - and I think it might be the same in most countries) but they were willing to have me go with it, and check that I was doing OK.
That is all I ask - honesty.
Re the 3-5 days - think stoneage here. I am sure we all know they were not guaranteed 3-6 meals a day - and they survived. Also they were not even guaranteed a meal every day - and they survived. In fact their bodies probably reacted in a similar way to what ours do today. At day 3,4,5 - somewhere about that time, you feel the best you have for ages. Much more alert, able to think etc (better able to go our and hunt for and catch the next meal). Ancient philosophers used this technique when they wanted to get more clarity about matters. It is something we have lost - but thank goodness for the research which is being done now, and the fact that (at the moment) we still have access to on the internet.
I agree that fasting has many health benefits. I have actually fasted myself from time to time over the years. The vast majority of healthy people can tolerate it just fine. There is a small subset of the population (those with certain metabolic disorders) who cannot safely tolerate fasting, especially for extended period such as 3-5 days. Hence my recommendation to check with one's physician before starting a new fasting plan.
All the best, my friend.
May be it is a good idea to check - but even better idea to send one of Jason Fung's books along before the appointment if you plan on doing so. He talks about how especially helpful it can be for people with metabolic disorders (do a quick internet search).
As I said before - general practitioners do NOT train in the area of diet. Mine freely admitted this, saying he had less than ONE DAY training in the area.
So his (and my PV specialist's) area of expertise is what is can be done to help us using the world of chemicals from a pharmaceutical perspective and it is great to have them.
What we can take into our own hands is what we put or don't put into our mouths.
It is not necessarily and either or approach - it can be a both and. Why not get the advantages of both, why not use the wonderful healing mechanisms of our bodies which are available through food. We have lost so much knowledge in this area.
Fasting yourself over the years - what sort of fasts and how did this affect your blood results? I am so pleased to have been able to have (exactly) before and then after results.
What are the results you saw from fasting? And what type of fasting do you do?
This is very interesting and you are definitely a solid case study. I have looked into this and have read much of Dr. Longo’s work on this but I have yet to try it. Of course in his work he recommends a calorie restricted fast (The Fast Mimicking Diet) as a water only fast is not only hard but can be complicated for some people. Of course, you mention being on the keto diet and I agree this would perhaps result in an easier time fasting than someone getting most calories from glucose.
I have tried keto/paleo/Mediterranean/WFPB diets. All seem to have worked on some level but longer term I have felt that WFPB diet is more nutritionally sound. Plus I find keto very difficult. I know Dr. Scherber was going to look into the keto diet but haven’t heard about any conclusions from that. How long have you been on the keto diet and have you noticed much change to your progression/symptoms?
May I ask also ask how fasting has effected your PV and how long you have been periodically fasting? You mentioned in a previous post that fasting has reduced your levels into normal range to where you were able to forgo venesections. That’s wonderful. Are you currently just doing venesections and aspirin or are you on other meds as well?
Thank you. Your approach is very informative!
Hi there dmac,
I have been doing Keto for several years - but it took me probably a good year to get the hang of it. I cold turkeyed on sugar in drinks, cookies, cakes, sauces very quickly. As well as health benefits Keto made it super easy to fast as and when I wanted (no Keto 'flu which really is just carbohydrate withdrawal)
No other meds at all. Just get bloods done as I feel I need them, and venesections that way too. I am not always able to fast as I would wish as I have quite severe PTSD)).My numbers were very scary at time of diagnosis, but with what I have done re diet it seems to have really helped me. Have gone from 3 month report in with specialist to 6 month, and she is keeping a watch to take note of how it continues to pan out - but she is really pleased.
Fasting changes quite a bit with me - I do not eat after 7pm (latest) and before 1pm (earliest). I might water fast (or green/black tea) for 2 days, sometimes 3, sometimes 4. If I do not feel like eating I don't.
I hope this may be of some help to you.
NZ_Max,
Thanks for the reply. Very helpful. That’s great and so glad it’s worked for you. Have you been able to maintain a steady weight while doing this? I find when I do keto I feel a bit mineral deficient in some of the B vitamins, magnesium, etc.
And may I ask if you just have elevated Hct or platelets as well? I have both and am intrigued if fasting/keto is effective against thrombocytosis.
My worry has always been the “stress” fasting puts on your body. Naturally it stresses it, but as you’ve stated the research shows that reaching a state of autophagy is beneficial and a good type of stress. There’s just always that worry that stress could lead to thrombosis.
Seems like it has real worked for you though which is great. I read another anecdotal case which seem to say similar things. Just not having to do venesections would be a blessing.
Thanks!
dmac_77,
I had high Hct, red, white and platelets - managed to get the lot! Platelets went further up after each venesection.
Keto took a while to get used to but now not issue at all. Educating oneself as to where all the carbs were hiding, and then the different types of carbs (eg rice, pasta and potatoes change to resistant carbs when cooled after cooking - therefore I have these. Thinks salads ... yum)
Weight - has not changed with Keto alone (probably because I consume quite a lot of fat - coffee has now become coffee and cream rather than sugar and coffee). Does go down with water fasting tho. (for fasting look at anything with Dr Jason Fung - lots and lots of info there including about underweight people). Autophagy is not the only good thing - what is jut as good I would imagine is the creation of new stem cells, and they do a triage thing - going to where the body most needs it... so lots of background stuff happening.
Magnesium - I am deficient there so have a spray I use (absorbed better through skin rather than digestive tract. Did you know kale strips out magnesium in the digestive tract??) I also have epsom salts in a hot (40C) bath.
B vitamins. This is an interesting one. Before the PV diagnosis I had way, way bad fatigue. Used to go to the Dr about once a fortnight for B12 injections (and no - not anemic). Stopped at time of PV diagnosis. So B vits are important to me. Now that I have introduced fermented foods which have high amounts of B vitamins (veges and drinks) into my diet the fatigue is lifting amazingly! I feel so clean inside, clearer thinking - it is a new world.
I am still getting a grip on all of this - heavens, it has taken some time - but without the 'experts' in the field being able to help have had to do my own research and trials. So what I would recommend is ditching carbs way down, eating Keto as much as possible, fermented foods and drink and magnesium supplements. Milk kefir really good, kombucha detoxifies as well (both natural prebiotics), but I do need the vege ferments (natural probiotics) - not much, but it is noticeable if I go without them.
This is where I have landed. I have no idea where it will take me, nor even if it will ward off the taking of any toxic meds, but wish to give my body the biggest chance I can. I think getting required goodies into me if at all possible through food will be the best option. I still have to do the odd venesection - but am waiting to see how things go (blood wise) with the introduction of the ferments (only fell across these in Feb/Mar).
Both doctor and specialist have given me (in written form) their professional trained advice and neither have had training in dietary area so have no opinion to offer there - but more than happy to keep a weather eye on me and interested to see the results.
It will be interesting to see where you go on your journey.
NZ_Max,
Thank you for the great response! I have a question...do you think what has helped you the most is the keto way of eating or the fasting?
I've been experimenting with diet ever since diagnosed. I'm technically still not PV. My regular hem thinks I am, one specialist thinks I am, and another thinks I'm not (yes I've seen 3 different people, ha) only because I don't have the 3rd positive WHO metric which is a confirming BMB, so I could potentially still be Jak2 ET. Still haven't done the BMB to verify because of its frequency of being inconclusive. Hct yet to go over 49, although last time it was the highest at 48.9 and it has averaged around 46-47 over the years. I went Paleo a few years back after Hct was close to 49 and it helped, but then after research I switched to vegan/plant-based diet as it seemed to be the most nutritious and heart healthy (heck and all the Blue Zones of the world eat that way so it has to account for something) and also was lowest in heme iron which I thought could be a good thing since our bodies seem to upregulate iron. After about 2 months on that I tested and all my levels were at the lowest they'd been in years. Thought I was onto something. As much as I wanted to eat some bacon I stayed the course for another 6 months and lo and behold my levels shot back up. So unfortunately I felt that the diet wasn't the thing that was doing the trick. Maybe it was and I didn't try it long enough, who knows. Ever since I've been sort of a mix of plant-based/paleo...aka Mediterranean if you will. Counts have slowly crept back up and like I said based on my Hct I'm right on the cusp of PV while also having high platelets, so my regular hem thinks I should start venesections (actually have already done two but since put on hold).
I've researched about all I can in terms of food/diet. I love diving into the food as healing research. I think you're right in thinking that our bodies are wonderful healing machines we just have to let them do their jobs, which is where I believe fasting comes in. And it sounds like you're onto something. That's amazing that you've brought all your levels down just by changing up your eating. I think it makes sense. We have an inflammatory disease, but it's a chicken/egg kind of thing. What's causing the inflammation?
When I was first diagnosed, I did a food sensitivity test which found I was "sensitive" to dairy and eggs. ☹️ So I've tried to cut that out as much as possible, which of course makes eating Paleo and/or Keto quite a bit tougher. I've since read a lot of "science" debunking those allergen tests, so theoretically I could be eliminating those things for no reason. Up to now it's really hard to delineate whether or not those two things cause my levels to fluctuate and lead to inflammation in my body. I could go out and eat a whole pizza right now and I'd feel fine, but there's no way of knowing whether or not it is causing some other trigger inside of me.
I think the keto thing is interesting, particularly in line with fasting. I know a lot of doctors/reports are coming out lately saying that long-term keto diet can be harmful, but who knows? If you're adding potatoes (and yes waiting for them to cool) that can help get other nutrients I suppose. Just hard to know. And didn't know about the kale/magnesium thing...interesting.
Cheers!
There is so much to learn - too many things have been forgotten as society has taken up a 'just pop this pill' and carry on as normal.
Keto - I found my body could not cope with carbs. On looking back never really liked them, but sugar in that coffee did it for me. Got diabetes. At some point I did a gene test and sure enough - reinforced my situation - I got 1.5 out of 20 for being able to cope with them. It is the carbs which add body fat. The fat one eats pretty well goes straight through you (after being used as the new no carb energy source ). I know this - the amount of fat I have eaten from time to time has been very large and not increased my weight if I do not have those carbs - they are everywhere, so I make sure that even the veges add up to not more than 30gm a day. Fruit has gone. It is not hard once one gets the hang of it. It is fun, and very liberating. The Keto way of eating can be as balance or unbalanced as one wants - so as to it being bad for you - really?? Sorry, I cannot grasp that one - there are many essential things we need, but carbs is not one of them.
Chicken bone broth is important to me. Has helped with all sorts of things. I have a mug a day, use it for soups, gravies and sauces.
Fasting - this came next. B4 PV to try and reverse my diabetes. Dr and diabetes nurse said it could not be done, was dangerous - but could not produce evidence for their claim. I had evidence to the contrary - Dr Jason Fung et al. Lots and lots of research papers. (get his book on fasting - all the info you need). That worked a treat. However, as I said PTSD along with COVID worries - I could only ever hold the fast about 4 days. But it sorts those numbers (which creep up again - but if I could fast more - who knows?) I love the idea of the body generating new stem cells which triage. I think that is going to be a serious answer.
To get to the fasting tho, it is good to have the body already used to using fat as an energy source thru Keto, and during a fast it just switches from external sources to onboard sources (as well as gobbling up old damage unused cells from around the place - I am thinking that this may be how the numbers come down, those extra and damaged cells of our get the heave ho .
Fermenting - the new (3month) phase of my experiments. This has truly upped the game again. I went whole hog into this and it has made such a difference, although because of everything at once I cannot specify which one has helped the most.
Kefir seems to be magic. I have never (even in my coffee) drunk milk (except breastfed at birth). This was a big step for me - but the research made sense. When milk is pasteurized it destroys the bacteria which help it being digested (this is why you may have an allergy??
fermenting brings all the goodies back in and then adds more. It is thick and creamy and delicious (make your own using kefir grains). Lots and lots of prebiotics - many more in one glass than a whole bottle full of pills)
Kombucha is another goody - detoxification
Fermented veges (had never tried these before and I think the idea and name just put me off). But wow! Last week I went 2 days without them - and my body knew it.
this is a great go-to for all things fermented, how to, what effects, and research. She has videos, podcasts ... This area has also turned around my son's life.
I feel all have helped with the inflammation in my body, with the last great step being fermentation. I have yet to see what it does to bloodwork, whether it will help go even longer without venesections - but who knows. I guess it took 60 years to get where I am today. I know that I am going to keep going with all the above for the rest of my life tho - they are all that important to me.
The above is my experience, and may not work for everyone. I am not a doctor, just someone who is sick and trying to get well. I have spent many, many hours researching and going back to basics seems like a good idea.
This info is so great and thank you for sharing. I think being open to all ideas is beneficial to all of us. I have tried various forms of everything you’ve mentioned but never have gone full-bore other than doing a strictly plant based diet for about 7 months. Keto makes a lot of sense but hard to grasp on others. And hard to practice, especially with kids around and treats everywhere...sometimes I just gotta have a piece of that donut ya know! Ha.
I think healing the gut and healing foods are paramount though and of utmost importance. I applaud what you’re doing. Fasting makes a ton of sense but it’s tough. 4 days with water only sounds downright crazy. I agree it’s probably just training your body to do that but I know even a 40 hour fast is tough for me.
Please keep me updated on your latest fermented test I’d be curious to know how that’s helping. And kudos to you for keeping your numbers at bay! Do you also exercise intensely or just more casual?
Can i ask you what is your diagnosis? Do you have ET.that looks borderline like PV? Do you have the Jak2 mutation?
Yes borderline PV - “masked” PV if you will, although one of my specialist doesn’t agree with the masked definition. One either meets the established WHO criteria for PV or they don’t but one can also fluctuate between ET and PV as these MPNs are dynamic. Yes Jak2+
For me, I am Jak2+
Thanks, Aneliv, it’s always uplifting to read about research and upcoming treatments for mpns.
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