Starting the paleo keto diet and Dr Myhills basic protocol - a diary of the first week then - disaster

 I thought it might be useful to keep a kind of diary blog of  my experience in starting this new protocol, partially as it helps me to look back amd reflect, note what works and what doesnt - as my memory and brain fog are dire, so having it all documented will help me. Plus just in case it helps others to see how this journey goes. 

Firstly I am not advocating anyone else try this. I have thoroughly researched it myself, but based upon my own body, symptoms, diagnosis and experience. If you are looking for your own answers to recover from CFS/M.E. I recommend that you start with looking at the M.E Associations website first, do your own research looking at the experts protocols from around the world, and discuss with your Dr and own health professionals. I have discussed most of this with my own GP practice back in 2021 whilst I was seeking advice from a private nutritional therapist. Whilst things did not work out then, I think that I have determined the cause of one of the issues that I had at the time and with a better understanding of how not having a gall bladder works with this diet plus how timing of taking supplements such as ox bile and other factors all add up. I feel that I am a bit better prepared this time with a better knowledge base. 

I  believe that a key reason that I was experiencing worsenning digestive issue last time I was working towards starting the paleo keto diet was mostly because of timing of when I took things like Betaine hcl and ox bile, as well as some other factors all to do with my gall bladder removal. I am amazed now with what I now understand that hospital consultants and GPs did not ever mention/suggest to the use of either of the above in order to help my body to digest at  its optimum. Here is a link which explains it quite well

Digestion following gall bladder removal

There is a lot of good information out there about this link is simply one that is well explained and easy to understand, the same channel has further videos explaining in more depth a few factors to take into account when getting timing right. 

Armed with this info I have started taking 1 ox bile tablet 90 minutes following my largest meal to see how things go. So far Ive had not experienced any new digestive issues/symptoms like I did previously, but its only been 2 days of doing this. 

This is a  list of what I am taking - Im not adding doses because you need to look into these yourself and look at the reasoning behind each item to understand why etc. Check out Dr Myhills website for yourself for her protocol. These are what is approprate for me, I am considering adding in a further few items but just want to ensure I tolerate everything here first, manage to get into ketosis and stabilise my system on that diet. 

Thyroxine, 

vitamin C, 

vitamin D3, 

a high quality multivitamin and mineral, 

high quality CoQ10,

 essential fatty acids /omega 3 & 6 & 9 from fish oils, hemp seed oils, and evening primrose oil. 

vitamin B12 sublingual spray - better absorbed this way. 

Acetyl L carnitine

ox bile 90 minutes following main meal

apple cider vinegar

sunshine salt 

Day 1 

I found day 1 easy diet wise, I was not hungry at all. Most of what I ate was super easy because I have no energy at all and needing to lie down much of the day. I followed DR Myhills suggested calculations to determine how much fat, protein and carbs I should be getting daily based upon height, weight, age, activity etc. 

I started out with a meal of tuna, sweetcorn, lemon juice, apple cider vinegar, olive oil, mayonnaise, kimchi and coriander. its one of my favourite easy meals which I just added the oil and mayo to - I usually have it with a mashed avocado instead of mayo.

Tea was  chicken and avocado with a dressing of olive oil and lemon juice. Followed by Alpro vanilla with raspberries.

All my macros were calculated as best as possible, weighing everything. It wasnt perfect as I was awaiting food delivery. I use Myfitnesspal to log all meals, calculate my macro goals and ensure I get as close to what I need as possible. It is a lot to calculate and keep on top of all the food macros and supplements etc, and I struggle a lot with this due to my brain fog, so everything is written down on a chart, with alarms set on my phone to remind me of timings etc and luckily I have assistance at home from my partner.

Meanwhile I am still using the Visible health app with Garmin armband to monitor my pacing. Its been extremely difficult keeping my pacepoints down to a level where I wont crash or get worse, never mind being able to bank up energy. Sitting up puts my heart rate between 90 & 100 which uses too many points/energy. I have to lie down to get it under 80. So whilst recovering from this latest crash and head injury I am resting on my bed, mostly lying down. I managed to keep it to 15 points today

Day 2 

Todays meals consisted of eggs, cooked chicken, pk butter, olive oil, alpro dairy free yoghurt, flaxseeds ground, raspberries, blueberries, pastrami. Not very varied as I launched into this before organising all the foods I needed. But I will catch up nutritionaly in coming days. I tried ox bile 90 minutes following my largest meal and experienced no issues.

I have noticed pain levels creeping up folloowing the Alpro soya yoghurt yesterday and today, so will look at alternatives in my next shopping. This is the only food new to me so easy to work out. 

I am drinking lots - around 3 litres and ensuring I have the PK salts to help.

My carbs were kept to 41 total but if you remove the fibre of 29 that makes just 12 net carbs. I think I may aim for slightly higher net carbs so as not to overdo the ketosis. The ex nurse in me still freaks out at eating all this fat and having ketones in my urine. But knowledge increases as time passes and whilst the majority of the health profession havent caught up with the whole microbiome and nutrition aspects actually solving health issues. Hopefully the NHS will catch up soon but I think it may be many years away, so I'm taking my health into my own hands fully. It will be interesting to see the difference in my blood results in 6 months as well as seeing how my health is.

By 10pm despite having close to my full alotted calories I was ravenous, with a rumbling hungry tummy keeping me awake until about 2am. I expected this because there is a period where your body still expects carbs as fuel and isnt using the fats fully as fuel yet.

I managed to keep to 9.5 pace points which is great, meaning some energy could go to healing.

Day 3

After a dreadful nights sleep due to muscle aches, twitches, hip pains which I rarely get these days and hunger, I finally got some decent sleep between 5 and 12 noon. I awoke with full on flu like symptoms, which can happen when starting keto. Although, I feel like this much of the time , especially when I have overdone things, but this was right up there symptoms wise. Again it was expected. I was super hungry too, with major brain fog, memory problems, sore throat, swollen glands all around my neck and 9/10 exhaustion. I tested my urine this morning and I am not in ketosis yet.

This mornings breakfast was scrambled eggs, pastrami, mushrooms and tomatoes in pk butter which I enjoyed.  I took ox bile 90 minutes later and again no issues with this.

My afternoon meal consisted of Tuna, Kimchi, Sauerkraut, beetroot, pea shoot salad, olive oil, mayonnaise, sweetcorn and apple cider vinegar - all carefully measured out. Coconut collaborative plain dairy free yoghurt, blueberries.  My total carbs for the day were 41 minus the fibre of 10 meant 31 net carbs which is a good starting point to see how my body can manage whilst getting into ketosis. Hopefully I can increase this slightly. I had my full allotted protein, fats and calorie amounts. 

The Visible app recognised my body is out of balance at 2/5 this morning. I tried taking it easy but it didnt make much difference, my heart rate was soaring even whilst resting on my bed and went through the roof every time I sat up, stood up and attempted anything. My pace points by the end of the day were 25 - thats 10 over  my safe limit.

Urine test strips indicated no ketones so far. I have ordered a ketone breath monitor as well, which arrives tomorrow. By late evening I was ravenous and this combined with flu symptoms plus constant hip pains kept me awake most of the night. I only had 4 hours sleep.

Day 4

Still experiencing rough flu symptoms, no energy etc. No ketones showing yet.

Todays breakfast/lunch was eggs, bacon, tomatoes, mushrooms with pk allowed fats. I made the mistake of using some coconut oil and it was pretty unpleasant. I struggled with the amount of oil/fat with this meal and felt nauseaous as a result, but still ate it all. We attempted making the PK bread with ground linseeds, its very easy to do, but is wasnt cooked at all inside after the hour, so we gave it quite a bit extra time. It doesnt have much taste but Im sure it will do for soaking things up, I think the addition of herbs and spices might help. I do like the crispy crusts on it. 

Tea was a tin of tuna with beetroot, sauerkraut, kimchi, avocado, mayonnaise, olive oil, followed by CC yoghurt, linseeds, almond nut butter and blueberries. My total carbs are 40 today, but fibre is 25 making only 15 net carbs, I managed to meet all my other macros as targetted.

As my pacing points were extremely high from having a short sit down shower - 9.5 points which is worse than usual. I have no choice but to lie down for the rest of the day and try to avoid going too far over my limit, esecially as yesterdays were high. I will likely experience repercussions tomorrow. Its 7pm now and my points are at 19.5

This evening I am in ketosis, ketones of 3 showing on my urine test stick. I thrilled that Ive got this far with a migraine this time.

The ox bile at 90 minutes following my largest meal seems to be working well.

I hope you are enjoying my intentional camera movement photos of ribbons, all shot from my sofa, resting a camera on my knees. Its the only photography Ive managed lately, fingers crossed that I will manage more soon. In the meantime Im thinking of creating some watercolour textures and brushes.

Day 5

I had a rough nights sleep again and I am unsure if this is anything to do with my change in diet. I had horrific nightmares which I dont tend to have normally and hip pain around 6-7/10 all night, given these are both new things since starting this protocol I thought I would note them. The hip pains ( both) has not been an issue in recent years, although it was a lot when I was younger ( my 20s & 30s). I am curious to see if it settles once my body is stabilised on this diet. I had forgotten about reintroducing whole tomatoes into my diet and this could be a causative factor of pain, given that when I was on a lectin free diet it reduced most of my pain. I havent eaten whole tomatoes more than a couple of times since, but have had passata or tomato purree in meals occassionally - with seeds and skin removed this reduces lectins, and if pressure cooked removes most too. I will stop eating these just to see if anything changes as my body is hypersensitive to various foods and I do have multiple chemical sensitivities. I woke with flu symptoms quite strong again, with lots of issues around swollen glands in my neck, very sore throat, headache.  Another new thing to me since yesterday is an uncomfortable feeling as if I have cystitis, possibly due to the changes in my body chemistry, I am drinking a lot more than usual - 4 litres yesterday as I was thirsty, thirst is a common sign in early days of this diet.

My breath ketones are 6 on waking and urine test says no ketones.

Interestingly my body is tolerating being sat up this morning and my heart rate is stabilising between 60 & 70 with my legs up too, which is great for resting and hopefully today I can pace well whilst my heart rate isnt too high.

Todays breakfast was fried bacon, eggs and mushrooms with some fried PK bread which crisped up nicely - it tastes much better fried. This evenings meal was chicken cooked in coconut oil and lemon juice with pesto, plus sauerkraut and peashoot salad in olive oil and lemon juice followed by CC yoghurt, flaxseed, almond butter and raspberries. All my macros are pretty much spot on and total carb intake is 30 today.

 Ketones through the breathalyser were 6 this afternoon, 6 at 7pm and 13 at 10pm. 

 Still extremely fluey this evening with a mild migraine and all the usual M.E symptoms. I have had less hip pain this afternoon and evening.

According to my Visible app my heart has behaved itself today, I can sit up without over exerting myself, as of 10pm I have ued 14 points, so I have been able to pace properly today.

I managed a little ICM ( intentional camera movement ) photography from my bed this afternoon, I'm feeling very inspired to create more abstract images. ( see below) The colourful abstracts above are ICM photos of ribbons taken a few days ago.

 

Day 6 

The keto flu symptoms continue today along with a headache, but I did sleep a bit better last night.

I remain in mild ketosis - breath tests 8 on waking, 8 late afternoon and 13 late evening, urine tests just a trace through the day and 1.5 in the evening. 

I have continued with a similar choice of foods as in the previous days, keeping all my macro measured out. I'm drinking closer to 4 litres with some sprinkles of sunshine salt added to help me stay hydrated.

I actually managed to get out for 3 hours today, my first time doing some light photography in Newcastle in about 2 years.  I did some simple ICM images to try and refrain from using too much energy, all sat on my mobility scooter. This did push me over my pacing points for the day ( 23), but I paced myself well and it distracted me from all my symptoms, plus Ive needed to get out and do something fun for a long time. I am feeling it this evening already with worsenning M.E symptoms of PEM, brain fog, pain etc. Although I did feel that I had the stamina to take photos whilst out, which Ive not had very often in the last 18 months, this could be partly down to adrenaline and the joy of actually getting out - and seeing people Ive not seen in years too. The next couple of days will need to be strict rest days to recouperate. 

- later on day 6 - I started with muscle cramps in my legs, stomach muscles, arm muscles, up by my ribs, and peculiar twitches in my muscles that felt like electrical impulses, these progressively got worse over a few hours. I assumed that maybe I was a bit dehydrated, I had drank over 3 litres during the day, but still I decided to drink a litre in the next couple of hours but I started feeling extremely ill. My ketones were 16 so I did not think this was the issue, but with the cramps I thought maybe electrolytes were unbalanced, as a result of the new eating plan etc. So I had a multi vitamin and mineral tablet and kept drinking. Then I started shaking uncontrollably, very much like a riggor that is experienced with a very high fever, but I was not hot, I was frozen. This got worse until I was shaking violently. I ended up ringing 111 for advice and was advised to get myself along to A & E, where I ended up overnight as a minor medical emergency. It looks like it had been partially down to some electrolyte imbalance, my sodium levels in particular were low - even though I had been supplementing with sunshine salt. I had drank so much thinking I might be dehydrated and that likely exacerbated it. From there the Dr expressed concerns at the neurological exam that she carried out, suggesting I may need EMG muscle testing  to help determine what is going on  as the cramps have been an issue a few times this last year. I was told to see my GP within two weeks to discuss this and other things that cropped up. 

I was so unwell over the next 6 days, barely able to tolerate any time out of bed in the first few days. The twitches in my muscles continued for several days and it felt like cramps were going to start at any minute. My autonomic nervous system when into overdrive, with the least little thing setting off panic feelings - in my mind I did not feel panicky, but when this was contactly happenning I ended up in a state of high anxiety  for a lot of the week and meditation was not helping. Strangely my pain levels did an about turn and I've had barely any pain all week, more just discomfort - I dont think Ive had this little pain in about 4 years.  I decided to stop the keto diet, feeling 100% sure this is what caused or triggered the issues, plus I was incapable of organising meals or calculating macros as I crashed severely - if I went downstairs I had to crawl back upstairs, just a few stairs at a time. Even sitting up in bed made my heart rate shoot through the roof at first. So I ended up resting in bed more most of 6/7 days.

I have to say that after this experience I will never try Keto diet again, there must be some reasons my body cannot function or cope with it. I was so careful following the protocol to the letter. I may reach out to Dr Myhill with my experiences, as having electrolytes so out of whack that it causes such symptoms is actually a medical emergency, so I would like to hear her thoughts. I am not diabetic, although I have had two nurses inform me that I am diabetic in two completely different occassions, my GP assures me that I am not, it was simply that my results were off due to medical issues ( ie my gall bladder was blocked etc). But I cannot risk anything making me this unwell and causing a severe crash again. So just going to eat as healthy as possible. My Gp and already requested to see me - not surprisingly after 2 visits to A & E in a month ( I had an accident a couple of weeks ago with a head injury resulting in around 6 days of concussion).

The Visible app has been extremely useful in monitoring and helping me to pace this week. I have managed to stay within my 16 pacing points 5 days out of 7. The other days I have gone over were not my fault, as just sitting upright used so many points and one day eating a meal containing tomatoes and gluten resulted in my heart rate soaring - I had long since suspected tomatoes might be an issue for me and seeing this reaction in bodily signs seems to support my suspicion. 

If anyone is considering trying the paleo keto diet alongside Dr Myhills protocol themselves - I would definately  highly recommend a check in with your health team first and ensuring you have support. What happenned to me could easily have got worse rapidly, at one point I actually thought I might end up having a heart attack - at its worst it was terrifying, having full muscle cramps in so many muscles at once.

Its difficult getting help with M.E. and when we dont get any help we are forced into either accepting and having no life, or trying to research our options as best we can with our brain fog, and taking matters into our own hands in desperate attempts to feel even a little bit better. Its a ridiculous situation, which many of the M.E community hoped would improve once we knew that people with long covid were going on to develop M.E. too. Hoping for more research, more answers and hopefully solutions. I never give up hope. 

ICM of roses in our neighbours garden

Below are a few abstract ICM photos I took on my brief visit to Newcastle

Update from the last year and my latest plans

Following on from last Junes blog.

A brief catch up/summary

I did continue trying pacing using my heart rate, although found my chest strap to be faulty, then following some life events my focus changed for a few months, whilst I navigated some changing circumstances and emotional hurdles. But in the last couple of months I have come back to this in a different way - I will explain further along.  

I also tried cold showers for around a month which initially  gave me a kind of seretonin / dopamine high, but ultimately ended up causing crashes after the first week. For me, I know now I can use a cold shower to help boost my system for a one off event occassionally, to help me to get through it, but knowing I will pay the price afterwards. Maybe I can revisit the cold showers/dips in the future when my health is in a better state, but for now I cant. 

I have continued to meditate for 2-3 hours pretty much daily most of the time and I am planning to increase this to 3-4 hours daily for the next month as my stamina and symptoms are currently worse, I am hoping that the extra meditation will help with resetting my autonomic nervous system.

Where Im at now

 I would say that I am getting out even less this year than ever before and that has been hard to negotiate in some ways, although I think that both Michael and I have both accepted that this is the way it is for now and we just get on with it the best we can. We both know how much life can fluctuate with M.E. so hopefully it wont always be this way.  I find a lot of peace through  meditation and this both uplifts me and grounds me too. After pretty much a year of barely getting out or seeing people,  I have started getting out with a friend or two about once every 4-8 weeks, this used to result in me crashing and struggling cognitively after 45-60 minutes, but I have managed 3 out of 4 times slightly better in the last 4 months - I just need to go somewhere quiet, and test out acoustics as we have discovered this is an exacerbating factor too, otherwise my brain gets overwhelmed. I am slowly retraining my brain to cope with such things, although sometimes the simplest of things triggers a fight or flight response - which happened at the dentist, and luckily meditation stopped it in its tracks within minutes. But its not always appropriate to just stop and meditate.  I am still on an incredibly slow snails pace journey, negotiating ways forward that help my body and mind.

 Earlier this year I managed to give some presentations online and even created my first online photography tutorial. Cognitively it was extremely difficult - it was like  being in a permanent fog trying to find words, and I only managed by preparing copious notes over months and using these to read from, aswell as having help from a few friends to negotiate the various platforms and software.  So whilst I'm glad that I did these, neither will be something that I will repeat often, as the payback was severe and to actually complete these took everything I had, leaving no energy for anything else. But Im proud that I managed these considering my brain fog and cognitive issues, for me they are achievements, plus they served a purpose and helped me to actually earn a little, which was needed for purchasing a new mobility scooter and other things such as the Visible health monitor. But whilst good for my mental health, I feel that using so much of my energy on that actually had a negative effect on the M.E symptoms.

I decided to try the Visible health Garmin armband to assist me with monitoring, balancing and pacing everything that I do rather than just guesswork. This kind of follows on from the heart and HRV monitoring I did last year. But the app does it all for me. Visible health give a great explanation of pacing here - pacing , please do follow the link to understand better. Through using the armband it is hoped that we can find a good balance between under exertion and over exertion, stabilising our symptoms and health. If we can stabilise then we have a better chance of improving and most certainly a better quality of life. The band monitors our HRV daily and constantly monitors our heart rate, with alerts to assist staying within our own unique energy envelope.

Its early days yet, as Im still getting averages for various activities and have not determined how many pacing points I can use daily without crashing - I feel like Im almost permanently crashing.

I've found it hard to completely stick to pacing, because it means I literally have no life, see nobody, do virtually nothing and I often end up feeling quite low when I pace strictly. So I try pacing with doing a bit of what I love. But my body is telling me to slow down, stop and pace. I have struggled to just be out of bed and even just on the sofa for 6-8 hours a day lately. But Im going to try really hard to determine my pacepoints and stick to them no matter what. My plan is to read, meditate, listen to things, watch stuff I enjoy and try to do low energy photography or watercolour painting. It is looking like I may have POTS ( postural orthostatic tachycadia syndrome) - just from my monitor alone I can see how just sitting still on a sofa, even with my legs raised still results in a much increased heart rate and my blood pressure drops on standing up too. 

I also need to address some dietary issues, recently I discovered that my fasting cholesterol and triglycerides etc are high. I need to lose weight and have been trying on and off, but have not managed to lose weight in the way that I used to prior to the menopause. Ive made a few changes, introduced plant sterols, swapped out a few foods and introduced things like oats, apples, apple cider vinegar, kimchi, more fish, healthier fats and less saturated fats. Slowly making changes means that I am more likely to stick to them. Ultimately losing weight is the next biggest change I need to make - a further 2.5 stones to lose, I have lost 9lbs. Im reluctant to start medication and really want to address  it all with diet, although my nurse has said this is unlikely to make a difference. I like a challenge. 

I have decided to try Dr Myhills protocol of a paleo keto diet with the basic supplements plus bolt on extras   as I have Hashimotos/ Hypothyroid. Im spending the next week or so preparing fully for this, awaiting delivery of the supplements etc and ordering in shopping. Dr Myhill has dedicated 40 years to the care of people with chronic fatigue syndrome. She goes far and above any NHS approaches. I have followed her work for over a decade and have tried her approach before but could not tolerate the keto diet - it caused lengthy migraines etc. I feel I was not fully prepared previously and I now know that part of the reason my body struggles with it is down to my thyroid, and having no gall bladder and its going to be harder because of that. It has become even more important for me to try the paleo keto nutrition plan considering the addition of POTS and also a more recent high likelihood of Parkinsons ( GP  has referred me for a further assessment and recent testing so far was positive). This way of eating has been shown to help with so many health conditions, putting many into remission or recovery, including chronic fatigue, POTS, Parkinsons help reduce cholesterol issues and many other conditions including cancers. I cant see why I would not try it again, with more determination, I just wish that I had medical back up - our local NHS dieticians dnt recommend it and my M.E. clinic cant get funding for a specialist nutritionist, although they have tried. So Im out on my own, but with the wonderful Dr Myhill kindly helping thousands of people like me by giving her information freely online. 

Its going to be a rough couple of weeks starting off as keto flu is real, add that to M.E and its not exactly pleasant, and I already know that I get migraines starting this. I am not looking forward to feeling even worse than I already do. But Im determined to do everything in my power to get well. Sometimes you need to get worse to get better. Plus I have a serious sugar addiction thats hard to stop!

The next couple of months are likely to be quite quiet ones for me, but Im going to embrace this and look for the positives in it all. We are all on a journey and constantly learning, It is going to be a time of listenning to my body, to nature - via our wild garden and what the universe decides to place on my path. I am grateful that I have people that I love and cherish in my life, and I am so very grateful for their love, kindness, empathy, patience. Hopefully if I can stabilise my symptoms and health then I can spend more quality time with those special people.

I have a few ideas of how to occupy my mind whilst in a rest and recouperate phase - reading, watercolour painting, meditating, short phone calls/facetimes

So here is a list of exactly what I am going to be trying ( according to DR Myhills protocol)

Paleo keto diet 

Good quality multi vitamins and minerals

Essential fatty oils - Hemp seed oil + Veg EPA caps - alternating

Vitamin D3 10,000 IU plus sunshine if I can get in the garden

Vitamin C 5g plus to bowel tolerance in 1L water morning

Lugdines Iodine 3 drops in water at night

5g Sunshine salt on food daily

High quality CoQ10

Magnesium

Acetyl L Carnitne

Niacinamide

Vitamin B12 sublingual

Epsom salt footbaths

Home made bone broth

D Ribbose as a rescue remedy in crashes etc

Alongside strict pacing, rest, attempting to get good sleep, avoiding stress, practicing breathing exercises and meditation

I have tried much of this in the past but never all at the same time, I got close to it but my stomach constantly revolted. Fingers crossed I can do it this time. This time Im starting with the nutrition first.

If you are interested in learning about how the paleo keto diet can help with health conditions, or Dr Sarah Myhills fantastic work then there some links to read  below. Please dont send requests asking me for details of dosages, Im following Dr Myhills protocol - its all on her pages. This is just a blog giving my experience of life with M.E. and sharing info that I find along the way. It is up to you to research and make your own mind up on what is best for you and your individual circumstances as our bodies are all so different. Follow the experts advice :) 

Dr Myhills main page

overview of CFS protocol

Targetting mitochondrial dysfunction in the treatment of chronic fatigue syndrome

CFS and mitochondria dysfunction

if you struggle with reading then maybe some of Dr Myhills videos will help

Dr Myhill & paleo keto diet for CFS/ME

Dr Myhill on paleo keto diet for CFS/ME

the importance of mitochondria

75 youtubes with Dr myhill