Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Objective CPET improvement & remission on ketogenic diet

Discussion in 'General Treatment' started by ryan31337, Mar 25, 2017.

  1. ryan31337

    ryan31337 Senior Member

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    Hi all,

    TL;DR: I have made massive subjective improvements in energy levels & symptoms in the past 6 months, which I attribute largely to adopting a ketogenic diet. Yesterday I had a repeat CPET, the results were improved & approaching normal range, compared to previously when I was deemed to have 'functional impairment due to metabolic disease'.

    VO2max up from 19.6 (50% pred.) to 31.2 (80% pred.).

    This is not an "I've been cured and know the secret to the universe!!!!1!11!!!" thread. I'm not suggesting all your problems will go away if only you change your diet. I'm not even suggesting that you should try the diet, unless you have given it some proper thought and/or consulted a doctor to make sure you don't have reasons precluding it. With all that said...

    I'm posting 3x CPET results and an assumption that ketogenic diet has led to improvements in metabolic function shown in the tests. 2x tests were before the dietary change, 1x after. I hope that this might evoke some interesting discussion, confirm or refute my assumption, and perhaps inform others here that may be able to try it too. I also welcome any further insight you may have into the fascinating world of CPETing!

    I was going to post my long history and describe my experiences but it soon turned into an essay! In brief, I have an ME/CFS diagnosis (ICC/CCC compliant) going back 21 years with a gradual relapse/remission pattern. I fit the moderate description at times of relapse, mild/very mild when in remission. I have had 2x long periods of remission and 3x relapses (including the initial onset) during the 21 years. It's speculated that the relapses have come off the back of other insults: suspected celiacs onset, severe viral/bacterial infection etc. Along the way I have accumulated various other suspicion/diagnosis like POTS, SIBO, MCAS & hypermobility spectrum. A fairly common ME/CFS picture I believe.

    The adoption of a ketogenic diet last October appears to have halted and reversed the steady slow decline I had been experiencing, which began gradually after a significant unknown infection put me in bed for 6 weeks, 3 years prior. On the diet an improvement in energy/function was immediate - despite the keto adaptation weakness, I was able to sit up all day without crashing/sleeping. The symptoms labelled 'reactive hypoglycemia' by my endocrinologist and seemingly linked to fluctuating glucose levels vanished, as did my frequent disabling migraine & insomnia episodes. 6 months on I am continuing to build tolerance of exertion and experience far less symptoms. If I overstep these expanding limits I still suffer, but not for nearly as long nor severely as before.:thumbsup:

    Before adopting the diet I was beginning to see objective abnormalities in test results, things that I wonder were suggestive of abnormal metabolism: CPET, arterial blood gases, BP, heart rate, liver function. These results are now all normalising, so together with subjective improvement I'm hoping it means another long remission! I'm currently stable, able to cope with 5 minutes gentle swimming & an afternoon of office work most days without PEM. A very different picture to last year when leaving the house was difficult and almost always resulted in PEM, and where sitting at my desk reading for more than an hour resulted in crippling energy crashes, excessive sleepiness, deranged blood pressures etc.

    If you want to know anything else just ask :)

    Ryan
     
  2. dangermouse

    dangermouse Senior Member

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    That's interesting and I'm really pleased for you. How did you discover the diet and what prompted you to try it? @ryan31337
     
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  3. ryan31337

    ryan31337 Senior Member

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    CPET #1 May 2016 (normal diet):
    Unfortunately I only have limited data for this test as I didn't get a copy of the report (just some sneaky phone camera shots!).

    upload_2017-3-25_17-48-56.png

    AT, VO2max & Work were abysmal. I'm a tall young guy, should be looking at 40ml/kg/min VO2 and 235watts.

    RER was interesting! Essentially 1.0 just sitting on the bike before starting. Doctor suggested I hyperventilate because I was chugging away 10L-15L at rest, which I assume could cause the high RER by exhaling more CO2? I acknowledge orthostatic shortness of breath and desire to overbreathe in those situations (POTS!), so subsequently got investigated but was found to have no signs of chronic hyperventilation syndrome (psychogenic). I had just taken a 2x hour train journey inc. changes and a 10 minute walk from the station in a very poor state, so I do wonder if I had essentially already exhausted myself and generated a lot of CO2 to expel beforehand?

    I believe lack of heart rate response was a big limiting factor here. I was taking beta blockers at the time, though only a very low dose of bisoprolol (1.25mg daily), which normally only affected me by 5bpm at rest. Another explanation perhaps could be that I was more fatigued prior to the test, as it was midweek and I had been active in the days preceeding - which would be in line with some of the 2day repeat CPET protocol findings where HR was limited on day 2. Because of this perhaps its better to ignore these results and consider CPET#2 & CPET#3 a better comparison...


    CPET #2 June 2016 (normal diet):
    upload_2017-3-25_17-50-8.png

    upload_2017-3-25_17-50-26.png
    This test was off beta blockers & well rested. Normal heart rate response with matching improvement in VO2max & workload. Again hyperventilating & funky RER before starting. Same applies, was I starting the
    test after relatively excessive exertion?

    CPET #3 March 2017 (ketogenic diet):

    upload_2017-3-25_17-51-2.png
    upload_2017-3-25_17-51-14.png

    This test was off ivabradine & beta blockers. It was midweek and I had kept to my much improved sub-PEM inducing schedule of light swimming activity & afternoon office work in the days before.

    I was really, really feeling the lack of ivabradine after 3 days, HR 129 sitting on the bike at rest and fighting POTS symptoms all morning (early starts are a nightmare!).

    My breathing was more normal, 10L at rest. End tidal volume of CO2 was normal, so no longer 'hyperventilating' (or pre-exhausted!?). Minute ventilation did drop towards the end, this was explained away by me getting a bit aggitated/pained towards the end, which effected my breathing patterns. I was grunting and swearing a lot so perhaps not inaccurate!

    My resting RER was also far more normal - a reduction is expected with ketosis but perhaps this also reflects more normal function too. Interestingly I wasn't able to put any more power down than before but would assume that fits with the concept of ketosis? Slow burn...

    I had a consultant anaethetist with a PhD on CPETs reviewing the results. He explained that my cells were now utilising oxygen better (for unknown reason) and that this will undoubtedly mean I will feel better after exertion. Although my work rate hasn't changed, the increased AT & VO2max means I am utilising anerobic metabolism less and thus not creating as many byproducts and strain on my body. Seems to fit with what I understand...

    VE/VCO2 slope now looks pretty off now though, if anybody has thoughts on that?
     
  4. A.B.

    A.B. Senior Member

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    Thanks, this is interesting. Did you have problems tollerating a ketogenic diet? It seems that some people tollerate it well while others feel horrible.
     
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  5. ryan31337

    ryan31337 Senior Member

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    Hi @dangermouse,

    Thank you! I am so happy to get my life back on track, actually feeling well enough to contemplate going back to finish my PhD soon :nerd:

    I saw a very broadminded endocrinologist, with good experience in fatigue conditions and POTS. He recognised many of my symptoms as being a result of reactive hypoglycemia, which he sees in many of his patients with POTS. He felt the keto diet would smooth these glycemic problems out. He is also a keto-enthusiast, having turned his own weight/fatigue issues around 9 years ago and having stuck with it since.

    Ryan
     
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  6. ryan31337

    ryan31337 Senior Member

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    Hi @A.B.,

    Yes and no. I think the diet is great, forgetting the other symptom improvements for a moment I love how I am no longer hungry all the damn time & no longer craving starches. Cognitively I can just keep going and going, like the old days. My cholesterol levels may disagree though, I tested in January and they had doubled :eek:

    However, this may be timing related (apparently bump in cholesterol at certain times is a 'thing' acknowledged on keto forums). More likely it may be due to my own poor choices, way too much pork produce & eggs! I have been dairy intolerant for a long time so couldn't consume many of the other easy fat sources (cheese, cream etc.). I need to work a bit harder to eat more plant based fats.

    I was already on fairly restricted low FODMAP, GF and DF diet due to GI issues. I have recently also confirmed SIBO. No doubt keto has helped starve them off further, so also probably feeling better from the GI side of things.

    Ryan
     
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  7. A.B.

    A.B. Senior Member

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    Also can you clarify what ketogenic means for you? Did you look at objective indicators of ketosis, or were you going by physical sensations (if so which)? Or did you count carb/protein/fat content of foods?
     
    Last edited: Mar 25, 2017
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  8. ryan31337

    ryan31337 Senior Member

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    Sure - I used https://keto-calculator.ankerl.com/ to calculate my macros. I targeted 30g carbs as I wanted to use nuts to get my fat contribution up in light of dairy intolerance. That meant about 110g protein and 160g fat. 72%/22%/6% split or there abouts i think.

    I used ketostix to test my urine for ketones. I'm aware this isn't exact science but I seemed to consistently get around 4mmol/L readings. I can also smell ketones on my urine, if it wasn't smelling I invariably felt more fatigued!!

    Ryan
     
  9. dangermouse

    dangermouse Senior Member

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    Yeah, it must feel good! :thumbsup:

    You did well with the endocrinologist and he sounds very experienced in the keto diet. I'm really glad it's working out for you.

    Re: dairy, I'm intolerant to cows milk, but can tolerate small amounts of A2 or Jersey milk. I can happily eat sheeps cheese, Sainsbury's do one called Parleck Fell, it's delicious!

    DM
     
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  10. ljimbo423

    ljimbo423 Senior Member

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    @ryan31337 - Congrats on your success so far! It has to feel good having a significant amount of control over this illness! I have also had amazing success in the last few months.

    My energy is way up, and PEM is very much improved. I can do more much without crashing and when I do get some PEM, it's much milder and don't last nearly as long as it use to.

    I'm not doing a keto diet because I can't tolerate it. I am on a low carb, high fat, moderate protein diet, about 80-90 grams of carbs a day.

    Mostly from dextrose because it is absorbed so fast in the gut. I am also taking antibiotic herbs and in the middle of a course of Rifaximin. It feels good to feel good!:)
     
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  11. ryan31337

    ryan31337 Senior Member

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    Great news @ljimbo423.

    Rifaximin, Candibactin AR/BR & garlic supplements are on my to-do list now too!
     
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  12. ljimbo423

    ljimbo423 Senior Member

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    I think you are in for even bigger and better changes! I look forward to hearing about your continued success.:)
     
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  13. Skippa

    Skippa Anti-BS

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    I got what I would (interestingly) say were 'broadly similar' experiences doing the 'blood sugar diet 800' diet for a couple of weeks recently.

    My daily crashes (always afternoon to early evening) dissipated.... BUT... the weakness grew and grew.

    The weakness got too much in the end BUT the peaks and troughs of tiredness/energy went away (I could sit up all day).

    Interesting.
     
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  14. anne_likes_red

    anne_likes_red Senior Member

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    Really pleased to read about your improvements @ryan31337 . :)
    Thank for sharing your experience, and your readings!
    I do well eating similarly in the winter time (a bit less protein though, and down to 25g carbs). In the summer I eat more carbs - for one thing my garden is full of them - and seem to do better with them then.
    Anne.
     
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  15. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I did the keto diet for a period of time and this did improve things. I switched up my carbs after about 8 weeks gradually increasing it to 100-150g. This was mainly because I struggled to get the fibre and I was worried about sources of vitamins etc. I did feel less peaks and troughs of energy during the day. I still get over 50% of my calories from fat but haven't noticed a massive difference by increasing the carbs up and just controlling them.

    This has lead me to think there are a number of other factors that may be involved by just modifying/controlling carb intake:

    Smaller portion sizes since fat is more calorie dense
    Less glucose spikes in the blood from starch and refined sugar etc
    Eating more choline and other micronutrients from eggs (I never ate eggs before , now I eat 3 a day)
    Eating a better balance of protein (increase in essential amino acids)
    Eating more nitrates from bacon sausages ham etc.

    I do not believe gluten has had any effect here, since I have experimented on various forms of carb/starch and they make no difference. The only difference I notice is that the more compex carbs the better so I'm less strict on the amounts I consume per portion on these.

    Regardless of how it is working, I am happy that you have had thus success @ryan31337 and .....I want the doctors you've got :)
     
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  16. Valentijn

    Valentijn Senior Member

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    I had to go pretty low-carb when first diagnosed with diabetes and treated by an incompetent GP. But I couldn't go under 20 per meal without feeling pretty sick. I had no problems with a ketogenic diet years prior to ME onset.

    The ability to tolerate a ketogenic diet and improved CPET might both be the result of underlying biological improvements, rather than the improved CPET resulting from the diet.

    Regardless, congrats on your improvements!
     
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  17. adreno

    adreno PR activist

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    Good of you to post this @ryan31337

    It would be interesting to see if others are able to improve on this diet. Personally I tried a keto diet before getting ME and didn't tolerate it at all, so I am reluctant to try again.
     
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  18. ryan31337

    ryan31337 Senior Member

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    If I drop the high fat intake I felt pretty starved as well, low carb without the ketosis does not suit me. It'll be interesting to see if I am more tolerant again in future as things increasingly settle down.

    PEM attacks in years gone by would leave me similarly starved and weak, which back then would improve with carb loading afterwards. This stopped working as I declined and appeared to do more harm than good, with the reactive hypo issues coming to the forefront.

    That's encouraging as I'd rather not end up in ketosis for too long!

    Agree with all of those points, especially interesting re the nitrates comment. I do appreciate that these results could have an entirely different explanation: cellular respiration may have nothing to do with the improvement - it could just be down to blood flow/delivery of oxygen to cells...

    Thank you! I had to seek them out specifically, self-refer and pay to see them privately at first. Luckily they are fantastic and took me straight on as an NHS patient.

    Want to know the really funny thing? These doctors...all this testing....its all done at Kings College London! :rofl::rofl::rofl: The ironing is delicious :lol:

    Naturally CFS doesn't come up much in conversation or reports, but when the CPET expert asked if I was being 'treated' for CFS at KCL I couldn't resist saying "Thank god, no". He was very professional but I'm sure I caught a giant smirk as he put his head down...

    Thanks @Valentijn. There are some keto specific CPET differences that have been identified in the literature (in healthy people), like the lowering of RER. But I agree, something has tipped the balance in my favour and I'm improving more generally.
     
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  19. A.B.

    A.B. Senior Member

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    It's a shame that doctors that actually have a clue about relevant aspects of this illness are discouraged by the current policy of treating ME/CFS as mental health disorder.
     
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  20. Valentijn

    Valentijn Senior Member

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    I eat quite a lot of fat. I was also monitoring calories, and the missing calories from carbs were replaced with fat. Ketogenic diets don't work for me since I got ME, and that seems to be the experience of many other ME patients as well.
     
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