Ketogenic diet that really helped for CFS

I have had chronic fatigue, which I believe to have been caused by Cpni (positive IgGi test) - and recently re-tried a ketogenic diet because I was really sick and had no access to any other treatment at the time. I had tried (what I thought were) ketogenic diets before, but this time things were made much easier because I bought some test strips - which actually indicated wether I was in ketosis and ate lots of MCT oil (which forces the body to produce ketones). A proper ketogenic diet made a huge difference for me. I was seeing a counsellor at the time and he could not believe the difference that the change in diet made for me - it was pretty extrodinary. Of course diet alone cannot get rid of Cpn, antibioticsi are needed to kill the pathogen, but I think diet + antibiotics might really help some people. PaulJ on this forum followed that approach (his perfect health diet site is linked below) and seems to be completely better from chronic fatigue. I am not sure whether the approach would help MS patients - but because it had such a profound effect on my neurological well being, I think it might.

I can't claim to know nearly as much about Cpn or biology as most of the people on this site, but I have read (in Paul Jaminet's -PaulJ on this site - Perfect health diet book) that brain cells can metabolize only glucose and ketones (not fats) so to me it seems like changing the fuel of the ATP generation in our cells to something different, might have a good shot at disrupting Cpn. Ketosis occurs naturally mostly during starvation, and it seems like it would be a bad idea for a bacteria like Cpn, which depends on a living host, to evolve to infect starving animals...

This very detailed blog series (by a former MD - unfortunately with a focus on physical performance rather than theraputic diets) discusses the chemistry of ketosis in detail:

http://eatingacademy.com/nutrition/ketosis-advantaged-or-misunderstood-s...<
http://eatingacademy.com/nutrition/ketosis-advantaged-or-misunderstood-s...<

Glucose is often actively transported into cells and Cpn seems to mess with cellular transport mechanisms a lot - diverting a lot of useful goodies to itself by taking over the golgi apparatusi (the cell's equivalent of a distribution hub). I think (again from Paul Jaminet's book) that ketone transport occurs by diffusion alone. Ketogenic diets have been known to help some neurological conditions (particularly epilepsy) for a long time - and there are quite a few people with a range of conditions who have reported being helped by the ketogenic diets of various kinds (perfect health diet, GAPS diet, specific carbohydrate diet are some that I have come across - but note that many of the diets don't really explain how to properly implement a ketogenic diet).

OK so that is why a ketogenic diet might help - how to implement one? There are basically 2 ways to do it - to force the body to make ketones by eating an atypically high amount of medium chain fatty acids, or to restrict carbohydrates and add more protein to the diet to mimic starvation. Mimicing starvation seems like a bad idea if you are sick, so the extremely low carb ketogenic diets don't seem like a great idea to me - leaving the 2nd option. These 2 blog posts give some background on the 2 approaches:

http://perfecthealthdiet.com/2011/02/ketogenic-diets-i-ways-to-make-a-di...<
http://www.drdeborahmd.com/ketogenic-diet-short-version-0<

What I do is restrict carbohydrates a little (I eat about a 1/3 of a plate of rice or 3/4 of a baked potatoe per day, with dinner) and then eat mostly meat and vegetables for my other foods (typically a British style cooked breakfast and a salad with protein of some kind for lunch and then carbs + meat + veg for dinner). I also cut out refined sugar (sucrose) as much as possible - and try to limit fructose consumption (I eat banans for fruit mostly - which have less fructose than many other fruits). But the key for me to get ketosis working properly (and actually be able to think) was consuming a lot of medium chain fatty acids, by taking a lot (around 9 tablespoons) of MCT oil a day. MCT oil is a health food product - derived mainly from coconut and palm oil (recently I found that getting stuff made from coconut oil exclusively helped me with some digestive discomfort). I only just started antibiotics (literally last night) so the combination of the two is not something I can really comment on. Taking this oil was the key for me getting a ketogenic diet to work - I tried eating less carbs previously but ended up feeling really ill - and had to stop. Apparently your body doesn't use medium chain fatty acids for much else other than making ketones - so flooding your liver with them results in a high level of ketones in your blood. MCT oil is a bit hard to take (not nearly as bad as consuming an equivalent quantity of coconut oil) but having it with coffee (decaf for me - called bulletproof coffee sometimes - after a paleo blogger) seemed to do the trick (I can take up to 3 tablespoons in one cup). When I started I regularly tested my blood ketone level using urine test strips - such as these which can be easily ordered online:

http://www.amazon.com/Ketone-Strips-100ct-Get-Free/dp/B016Z5XZP0< (US)
http://www.amazon.co.uk/Bayer-Ketostix-Reagent-Strips-Ketone/dp/B008ETHF...< (UK)

Using the test strips and being able to add more or less ketones easily by changing the MCT oil dose (note I am a 6 foot tall 160lb male) was a breakthrough for me in getting into ketosis.

OK I have shared what I know about this stuff now - which is rather incomplete but at least the links will give the more medically sophisticated folks an entry point. I am hugely grateful to this community for providing so much helpful info about Cpn - without which I would almost certainly have never been properly diagnosed (happened yesterday for me). I am very 'time-energy' limited (like most people I guess) so I will probably post infrequently on this site and hopefully read the new posts more often. I still have a lot to learn about Cpn - but you folks have provided me with some very helpful entry points and I am sure much more useful info in the future. I hope that this post is of interest/help to some.

If you want to read more about diet I recommend Paul Jaminet's book - 'The Perfect Health Diet'. and his blog http://perfecthealthdiet.com/. Please do feel free to contact me if you are interested in this diet approach - I am busy but I will take time to help anyone here that I can - I have really appreciated the help from others on this site.

I have MSi. If I stray from the porphyriai-reducing diet recommended for people with CPni (70% carbohydrate), I get dreadful porphyria, related fatigue, and mental disturbance. Basically, the list of symptoms here happen to me any time I have too much fat or protein:

http://www.cpnhelp.org/secondary_porphyria_what_<

 

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

Everyone is different. Just do what works for you.

People with MSi seem to share some commonality. There are a few trials which indicate the anti-porphyriai (high carbohydrate) diet is helpful for people with MS. Here's an example:

http://www.ohsu.edu/xd/about/news_events/news/2014/05-01-low-fat-diet-he...<

I was listening to an interview of Terry Wahls, who said that when she first started the paleo diet she got worse. It was only when she added a large amount of carbohydrates (in the form of 9 cups of vegetables per day) to the plan that she saw improvement. Though it seems later in her healing journey she was able to shift the composition of her diet to include more protein and fats. Make you wonder if the most helpful diet to manage MS depends on the stage the disease is at.

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

The commonality is inflammationi. You can control inflammation quite well without Wahl's. So glad I'm not a sheep.

Thanks hwebb for the helpful info on porphyriai - the doctor I saw tested me for some mutations related to the MTHFR gene mutation and aparrently I am homozygous for both the common mutations and should take methlylated B12 and methylated folate">i. I think this might be related to porphyria but I need to read more. There is so much information on this site - I am truely grateful to you all for putting so much helpful stuff online. Thanks for your comments too jen. My chronic fatigue is much less bad than many others - I have held down a job for the last 20 years and only a few times (including in the last few months before I made my diet very ketogenic) have I really felt that I would need to give it up. Chronic fatigue is also quite different to MSi (well maybe its the same thing as MS if Cpni causes both, but somehow the manifestation is very different) - so I can't really comment on MS with any authority (and probably I can't comment on chronic fatigue with much authority either!). I wanted to share this info in case it helps anyone.

I think that some people with MS have been helped by this kind of a diet - here is a blog from Paul Jaminet about a panel he sat on with Whals (I haven't watched it but maybe it is of interest / relevant to this thread - and Paul talks about his own diagnosis in the comments):

http://perfecthealthdiet.com/2013/09/autoimmune-panel-wahls-ballantyne-j...<

I am by no means a paleo diet purist for sure though - Jen - you are totally right about going with what works for you. I follow Paul Jaminet's diet because it has helped me - he also pointed me to this forum, several years ago, although I didn't really read it too much until I was really ill recently (shame on me!).

I am really grateful for the help I got from this community (existance of Cpn and recently tests for Cpn - even though I have been asking 2 different doctors about Cpn for 3 years no-one told me about the tests, or did anything other than look at me wierdly and vaguely promise a referral to an infectious disease specialist - finally I found another doctor who ordered the tests). Likely this stuff might be more relevant to chronic fatigue people anyway - but I want to pass on what I've found out in case it helps others.

Thanks so much for the Jaminet/Wahls link - I am a huge fan of both for sharing their knowledge so freely and doing what they can to develop accessible therapies for patients. Have got so much from the books and other publications of each of these patient-advocates. I heard that Terry Wahls next trial will be testing the Wahls (high vegetable paleo) versus the Swank (high vegetable low fat low iron) diet for MSi...I eagerly await the results and wish I lived in North America to participate in the trial. We really will not know which diet is best for MS until there is a comparative trial, but it'll be hard to beat the trial of the Swank diet for longevity - patients were studied for 35 years!

Swank trial: http://www.thelancet.com/journals/lancet/article/PII0140-6736(90)91533-G/abstract

Full atricle available here: http://sci-hub.io/10.1016/0140-6736(90)91533-G

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

I've been on a Wahl's diet with increased carbs, and the low fat aspect of Swank.  However, since starting on the Biotin I have found that I am now able to process saturated and unsaturated fats in a way that I couldn't before Biotin.  When I tried the Paleo diet way back, I ended up with fatty spots around my eyes (solid cholesteroli) and these have now gone.  Irene

As regards:

"Ketosis occurs naturally mostly during starvation, and it seems like it would be a bad idea for a bacteria to evolve to infect starving animals..."

Not at all.  "Kick 'em when they're down" is nature's motto here, not "oh, the poor thing is starving, I should let it alone."  There's still quite a lot of food for bacteria even on an animal that has died from starvation.

I'm very keen to try biotin hearing your comments about eyes Irene4k. I've read Sarah has had positive effects with her eyes too

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

There is a good facebook page for people who are trying out biotin, a closed group that you can join with lots of information.  Irene 

In reply to Norman's comments on:

"Ketosis occurs naturally mostly during starvation, and it seems like it would be a bad idea for a bacteria to evolve to infect starving animals..."

This was badly phrased. Chlaymdiae pneumoniae depends on hijacking the living cells of another organism - so picking starving animals (about to have no living cells) seems like a bad tactic for survival... I'll change the text slightly.

I do think that changing the nature of the playing field significantly has a shot at slowing down the Cpni, or giving the body a bit more of a chance against it. Chlaymidae infection at least seems to result in a change in the rate of gylcolosis - according to Charles Strattoni - quoted on this site: 

http://med.stanford.edu/chronicfatiguesyndrome/infections/chlamydia/chla...<

so I do think that providing an alternative energy path to glycolysis might help fight the infection. But I am not a medical doctor and certainly don't know as much about chlamydia as many here.

I think your rationale is good - and youre a great example of how well this diet has worked in CFSi. Controlling the terrain of a microbe has got to be a useful tool. I also suspect MSi may have characteristic features which potentially put some constraints on diet therapy. I'm not sure that the body part which CPni infects alone dictates the disease which will develop. For instance, people with MS have been shown to have a genetic predisposition to iron regulation problems (particularly those which result in iron-overload in the macrophages, where cpn resides and dines): http://bmcmedgenet.biomedcentral.com/articles/10.1186/1471-2350-13-70

It did occur to me that iron is fat-soluble (especially in saturated fat), and perhaps this is why low-fat diets can be therapeutic for people with MS. My iron levels shoot up and numerous symptoms flare if I waiver from my anti-porphyriai diet (which is coincidentally also a low-fat diet which looks a lot like the Swank diet). Could iron-chelation be a useful way to change the terrain for people with a Cpn infection and a genetic predisposition to iron-overload in certain types of cells? 

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

Yes, with Cpni in particular you can make the argument that it doesn't want to kill its host quickly but rather to persist for years and years.  Even so, if it infects you more and thus becomes more communicable, that can be better for it than having you survive longer, especially if you're soon going to starve to death anyway.

As for that bit on glycolysis, I think that's simply that Cpn steals ATP, so the host cell has to do more glycolysis to make more ATP.  The same would apply with ketones: they too get used to make ATP, which Cpn can then steal.  So at least on this level of analysis there isn't any obvious difference between the two.

Hi Norman, thinking about your question, there is one thing that is different when ketones are used as fuel by the cell. The rate of glycolysis is somewhat determined by insulin levels, since insulin controls the activity of one of the enzymes for one of the reactions in glycolysis (this is emphasized by Dr Attia in the second of the eating academy blogs). Dr Attia describes this step as a bottleneck, and ketones as being able to bypass it (search the post for PDH if you want to find the relevant stuff - I recognize the post is a bit heavy). Insulin levels are very much outside the control of a single cell. I don't think that blood ketone levels are regulated by the body (they certainly seemed to fluctuate when I tried to measure them!) so they provide an alternative energy source for the cells which are losing ATP to Cpni. On top of that I think that glucose transport is partly driven by diffusion but partly driven by active processes - which require energy, whilst ketones diffuse into the cell.

Anyway - this is all (non-expert) speculation - what I can safely share is that going on a properly ketogenic diet really helped me when my CFSi was as bad as it has ever been. I can also share that it is hard to do the ketogenic diet without some kind of feedback from testing and adding ketones through MCT oil. I had concluded previously that it didn't work for me when I tried to do it without the extra help from these steps. But I don't have MSi - and as twebb says there are real diffences between CFS and MS. I would never want to (or indeed be confident enough to) say that this is what everyone should do - but if anyone wants to try it I will always be willing to share my experiences with folks on this forum.

I'd already run into those posts by Attia; they're the clearest thing I've read on the subject of ketosis.  Anyway, sure, there are lots of differences between getting energy from ketones and from glucose.  One of them is that you can really flood your system with glucose, with a big meal.  Just being replete with energy can make a big difference, and in fact there has been some experimentation here with the idea of adding energy to get Cpni out of its cryptic state and into the replicating state, and then using antibioticsi that target the replicating state to kill it.  I tried that myself for a while; it seemed to work, though not to where I could really be sure.  But the flip side of that idea would be that if you flood yourself with a big glucose-heavy meal and don't use antibiotics your infection will get worse.

You can't flood yourself with ketones, since the liver makes those more or less in proportion to the need for them.  (Well, you could try eating ketones, and Attia has in fact tried that; he says they taste like jet fuel, and was most unwilling to continue the experiment.  Most people get their ketones the natural way, via the liver, which does regulate the quantity it produces, even if its exact logic is a bit obscure.)

There is another data point here, from the polar opposite in nutritional advice, the Pritikin people.  They are as extreme about fat avoidance as the ketogenic diet people are about carbohydrate avoidance.  But they also have a very strong message that meals should be small and frequent: "graze, not gorge" -- perhaps six meals a day, not just three.  Also, that they should include things that take a while to digest (vegetables and such), not just stuff like white bread that hits the bloodstream quickly.  So although theirs is the opposite extreme in nutrition, there still is the common element of not flooding your system with glucose.

Another data point would be the mainstream recipe for weight loss: bariatric surgery, which reduces the size of the stomach.  This doesn't actually restrict total calorie intake enough to cause weight loss.  What it does do is to restrict the amount that can be eaten at any one time.

Anyway, all these methods make claims for success, not just for weight loss but for improving general health, which one can have some doubts about but which I'm not inclined to deny entirely.  And though widely different, they all have that common element.

Hi Norman, on the flooding yourself with ketones thing, that's pretty much exactly what I did, or at least what I thought I did and what I am still doing! I take about 9-11 tablespoons of MCT oil a day. It isn't pleasant (I've never tried jet fuel so I can't compare!) but mixing it with coffee (decaf for me) makes it bearable. MCT oil is supposed to be refined coconut or Palm oil that consists primarily of medium chain fatty acids. Apparently (again from Paul Jaminet) your body can't do much with them except convert them into ketones, so that's what your liver does. When I first started my urine had very high levels of ketones in it when I did this, it's gone down now and I learnt from another forum that that is normal as you keto-adapt. Apparently once that happens you have to monitor blood ketone levels which is more expensive to do. Anyway I want to emphasize, I am no diet nazi, I really wanted to share my experience here in case it can help others.

MCT oil is still a triglyceride; it's perhaps mildly unpleasant compared to other triglycerides, but not at all like drinking beta-hydroxybutyric acid monoester, which is what Attia was trying.  ("I thought I was going to go blind.  I didn't stop gagging for 10 minutes.")  Anyway, yes, there is a tendency for MCTs, more than other oils, to get metabolized into ketones, but it's not a strict rule: some of them just get burned (without first being converted into ketones), and some get stored, though the body prefers not to store them.  The first step either in burning them or in making ketones is to convert them into acetyl-CoA -- and when there's excess acetyl-CoA, the liver uses it to manufacture longer-chain fatty acids for storage.

In any case, between MCT oil and ketones there's still that processing step required in the liver; that's what Attia was trying to bypass in his experiment -- since "the body regulates ketone production via ketonuria (peeing out excess ketones) and ketone-induced insulin release, which shuts off hepatic ketogenesis (the liver making more ketones) when you have enough".

The above quotes (the second mildly altered to put a closing parenthesis where I think he really meant it) are from:

http://eatingacademy.com/personal/experience-exogenous-ketones<

By the way, despite the horrid taste, which he succeeded in mitigating a bit but never really got rid of, Attia persisted manfully through the experiment and gathered athletic performance data.

Glucose, in contrast, doesn't need to be converted in the liver; it gets absorbed as glucose and goes straight into the bloodstream, so the spikes in its level are quicker and higher.  If your insulin response is good, your blood level doesn't spike horribly, but that's because the blood is passing the glucose flood on to your cells -- and that of course is where the Cpni is.  (And there can be other bad consequences, too, of a sudden energy flood; there's a lot more to medicine than just Cpn.)

Incidentally, I think that second quote explains why your urine ketone measurements turned out so irregular: your blood levels would have been more regular, but what you were measuring was an error signal in a regulatory process.

Thanks for the link Norman, it was quite interesting. I think both the eating lots of carbs and the MCT induced ketosis approaches are quite interesting. Thanks for sharing so much useful info.

.

I do not have an experience with ketogenic diet but I do have experience with fasts. Fasting produces ketosis because the organism switches from burning sugar to burning fats. Ketosis/ketogenic diets are used in medicine for example in intractable cases of epileptic seisures.

Fasting is IMHOi much better then ketogenic diet because it has additional benefits such as autophagy< (the paper has 3500 citations which is a lot!), i.e. the body starts to break down and digest cells that are damaged, dysfunctional, and at the same time actives stem cells to produce new cells. That means that it leads to profound regeneration of the body.

Altogether I did 4 10-day fasts. I always felt amazing at the end of the fast, almost like I returned back to childhood - the colors were fresh, my mind was yound and unburdened, the body felt great. However, a 10-day water fast was unable to get rid of cpni. The ketogenic diet might be able to force it to convert to the persistent form, but the bug doesn't eat glucosis, it eats ATP. And ATP is produced by utilizing glucosis or ketones. So I am not sure if fasting can cure cpn, i.e. get rid of the bug. A 10-day water fast was not able to do it. Maybe a longer fast could or could not, I do not know.

This< guy also claims that he healed his CFSi with fasting only.

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