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 and side effects

 07/07/21

 I have continued on with the protocol as outlined in my previous blog and very slowly increased MCT /C8 oil - but it has knocked me for six - feeling extremely nauseous to the point where I am not managing my full suggested calorie quota every day, dizziness for most of the day, stomach ache and cramps and swollen glands in my throat/neck. Exhaustion is  extreme and energy extremely low, meaning I am managing less than my usual. Brain fog and other symptoms persist. My whole digestive tract is uncomfortable with bouts of loose stools. I am trying to persevere, hoping this will settle down but feeling close to packing it all in as I am pretty fed up with almost constantly feeling worse. But the things keeping me sticking to it are the hope that I have a possibility of improving my health and quality of life, knowing some treatments can result in feeling worse before feeling better , looking at the long term goals - but at the moment I feel that life is passing me by this summer, with me hardly getting out 2-3 times a month whereas before I was getting out 4-8 times a month. Trying to stay positive and optimistic, enjoying our garden, doing meditation and doing some tabletop still life photography.

 Hoping the side effects settle so that I can try a ketogenic diet properly, supported as it is supposed to help a lot of people with energy levels.

 Its all such an expensive option following this protocol with costs for tests, nutritional therapist, about 20 tablets a day plus, oil, and a couple of supplements in powder form added to my drinks and food, then then specialist diet. It adds up to hundreds and so far I have felt worse for most of 3.5 months, it is sapping my mental and physical energy, despite my determination and huge efforts to remain positive, focused and sticking rigidly to it all.

 Whilst my pain is massively reduced and less frequent, this was something we feel we had largely tackled ourselves by working out that the low lectin and low oxalate diet gave good results. Although further advice helped us work out with foods had higher oxalates. The problem is that my diet feels so restricted and is going to be very hard to stick to long term.

I am still incredibly grateful that I have had the opportunity to try this option and have not given up yet. I had to try it - given the chance of getting better.

UPDATE 13/07/21

Another week on and side effects have reduced, glands only a little less swollen, sore throats reduced again, nausea reduced lots, stomach ache comes and goes, loose stools less of an issue, but fatigue and exhaustion are severe, energy is extremely low, hardly managing to keep up with my baseline pacing. Brain fog has eased temporarily for a few hours twice in the last week, other than that remains the same. Struggling to get off to sleep at night but sleeping through apart from when woken by pain from the trapped nerve in my neck.

( Warning below contains open details re menstruation - miss paragraph if you do not like to read)

I should add that the exhaustion/fatigue/low energy could also be worsenned by another health issue that Ive experienced this last month - extreme menstrual blood loss of over 700mls ( measured using a menstrual cup - which apparently equates to around 250 mls actual blood and the rest other fluids)  in the last week which is highly abnormal and has been pure hell! My DR is convinced this is caused by the second Covid vaccine ( she has seen it happen lots to ladies following their 2nd jab) that I had about a month or so ago, this is my first proper period in 6 months as I am going through peri menopause and it has lasted 26 days so far - the longest and worst in my life. Ive had bloods taken to check my full blood count and platelets due to the amount lost - and the bloods demonstrate that I have lost just over a unit of blood since one month ago, but luckily has not tipped me into anaemia - although the receptionist refused to give all the results ( I have to pick them up)  I have been taking iron supplement with vitamin C to aid absorbtion and a diet rich in iron, so I am assuming this has helped - there are other parts to a full blood count and platelet result that give a better picture of what is occuring - I will know once I have the full printed results.. I was prescribed Tranexamic acid to stop the bleeding and it has reduced it.

I know the above is not generally a subject we all talk about openly in public and some may consider it distasteful. However I am an open book and this is part of my journey, it is an important aspect of my health at present and I also feel that other women should be aware of this complication - I was not aware. It can be a scary thing to experience and in my 20 years or so as a nurse, even with two spells of 2 month blocks working in gynaecology and being used to a lot of blood, this still rated as extreme, so to some women with no experience or knowledge  in this area it could feel like they are literally bleeding to death. Its always worth talking to your Dr if you experience anything similar.

 

All in all I have felt utterly dreadful every day of this last week, despite the side effects symptoms easing off. I have stuck to the diet and protocol and now taking 10 mls C8 oil twice daily and 2 DIM daily. My nutritional therapist is aware of all of the above and reviewing later this week.

Hopefully I will start feeling a bit better soon. I have been spending my time at home  with just a half hour trip out locally to pick a few wild flowers, and have been trying to do a little tabletop still life photography, but mostly reading, meditating, enjoying watching wild life in the garden and watching a bit of easy going tv. Despite feeling dreadful I am happy enough in myself and taking pleasure in our garden each day, although really missing seeing people. whilst the UK is getting back to near normal I am still stuck at home and rarely see a soul, but this is the nature of M.E.

We have several visits a day from a group of about 12 Goldfinches with 3 young, its been fun to watch their behaviour and see them enjoy the wild flowers we planted last year.

Nutritional therapy and M.E. update

 Just a quick update on how the plan is going and how I am doing, more for my own records than anything.

So far pain is massively reduced, however  it can flare in the days following mental or physical exertion still - this is not a pain due to lack of use as it occurs in strange places such as across the cheek muscles in my face, plus usually accompanies further swelling of the glands in my throat and sore throat. The pain levels are still lower even on these occasions which is a massive plus. 

Frustratingly I have experienced a pinched nerve in my neck for the last  month so Im am unfortunately still experiencing pain - just a different sort - nerve pain through my shoulder, down my arm, accompanied by pins and needles/a dead arm sort of feeling. I have been practicing various neck exercises to help with this, used a Tens machine, heat pad, working on ensuring my posture is as good as it can be, altered how I work on a computer and how I sleep. So hopefully it will ease in coming weeks. I am taking Boswelia extract with Curcumin and black pepper to help reduce inflammation in and around the nerve to aid healing. One surprise to me is is just how much some meditation can actually help relieve the pain Im experiencing from the trapped nerve - I think this may be partially down to the position I practice in - but I have found one meditation to help a lot apart from when it reaches that excrutiating point. I would highly recommend meditation for pain relief - but look for one that suits you - some I find simply dont fit with me, whilst some are excellent.

As for all my other symptoms I would say little has changed, brain fog/cognitive dysfunction/memory problems persist and  fluctuate but can seriously interfere with my life and functioning, energy and stamina remain low, exhaustion/fatigue remains unchanged, flu like symptoms persist,  the sore throats and swollen glands in my neck occur less frequently which is a little improvement. Sleep disturbances persist. Post exertional malaise continues. The cold hands, feet, nose eases in the summer months anyway so difficult to assess but I remain intolerant to temperature fluctuations. I still experience fluctuating sensitivity to noise and light, as well as difficulty focusing my eyes.I  continue to struggle staying upright/on my feet for very long, with my balance remaining unstable - I have almost fallen several times at home recently. So not really any improvement over all other than pain reduction.

Recent blood tests show low ferritin at 32 ( possible aggravator mould) -but transferrin ok so not a supply issue but a storage issue ( all being used), low lymphocytes, high vit D, TPO ( Thyroid anti body) raised but less than it was years ago. TSH ok, T4 ok, T3 lowish and to be re checked in 6 months.

At present I am taking the following under supervision of my GP and nutritional therapist alongside following the plant paradox diet - ( PLEASE NOTE - this has been specifically worked out for me following medical history, tests, etc this is NOT a protocol for anyone else to follow. There are reasons I take each item and these are determined by specialists)

Morning -  Thyroxine,

 Betaine - for stomach mucosal lining and protein digestion, 

Ox bile - for digestive foundation, 

Molybdenam- for brain fog and sulphites

 Liquorice extract - for adrenal support and dopamine backlog

 Cod liver oil - omega 3 ,

 MCT oil - pure ketones in prep for keto diet plus brain fog

 Turkey tail powder - brain fog, 

Vitamin C - bio available vit c

CoQ10 - to aid mitochondria with energy 

Vit B 12 sub lingual

 Co enzyme B1 sub lingual - to help with multiple markers shown in OAT test

Acetyl L Carnitine - for brain fog

Lunch - Glucommanan powder - to bind mould - demonstrated in 2 tests

Tea - Betaine , Ox bile, P5P - to stop internal oxalate production, 

Bed time - Magnesium to aid sleep and pain relief plus Sleep aid herbal tablets as required

I am increasing MCT oil over the next week in preparation of trying a keto diet to hopefully kick start energy levels. Then starting DIM complex to help immune response indicated by low ferritin, increasing it over the following week.

Plan to continue with the nutritional protocol and other advised actions such as mindfulness, meditation, daylight, pacing etc and review in a few weeks as there is not an endless supply of funds and we simply cannot continue costs of nutritional therapist and so many supplements ( these alone are costing around £100 a month upwards) plus the cost of the diet. Fingers crossed we see some improvement. Its not easy following such a strict dietary regime with such a limited food choice when I dont have the energy to cook, and not easy on my partner either but we are both giving it our all and I am so grateful to Michael for cooking separate food for me ( he is not into this way of eating himself).

As always I try to balance the M.E stuff with some positives and whilst I have not been getting out much this last few weeks I have been dabbling with a bit of still life photography and thoroughly enjoying it. So those are the photographs shared today.

I offered use of some of my images to the M.E association to help them to raise funds and I have had an email saying they wish to take me up on this offer, images to be used on cards etc. I'm really happy to be able to contribute something to the M.E. community and do my bit to help raise funds for such an excellent association.

I also managed to get two images awarded gold from the NPS for May 

Nutritional therapist onboard May 2021

 

This year I have restarted the Plant Paradox diet again, in the hope that we could work out why it partially helped me for short periods last year and why my symptoms kept returning. Only this time we have approached a lovely Nutritional therapist who has experience of M.E. to help. 

Following a thorough assessment a plan was devised. The 1st 5-6 weeks has consisted of eating pretty close to the Plant Paradox diet but with some modifications, to eat certain amounts of protein, carbs, fats and calories specific to my needs. A plan was put together including other suggestions that may help benefit my well being and recovery, this included 

various supplements at specific times, 

looking at my sleep pattern and circadian rhythm - getting daylight daily to help, avoiding blue screens at night etc

meditation practice and mindfullness - bought a book to help me with this

trying different methods to stimulate and exercise my vagal tone - I chose deep breathing exercises ( such as Wim Hoff method)

tests to determine any possible causes or exacerbating factors, indicators of issues etc.

As the weeks progressed we reduced oxalates too - something I had started to do 2 months ago as I suspected foods high in oxalates were producing worse symptoms - specificly pain.

After 6 weeks my pain has reduced massively, but my cognitive dysfunction is considerably worse - with more confusion. I started the plan on 23/3/21 - it is now 4/5/21. So that's one symptom improved to start with. 

 Test results are back and I am waiting for an appointment in a few days time to discuss results and a continuing plan of action. In the meantime I have commenced digestive enzymes to help my body break down foods - as my gall bladder was removed a couple of years back.

As usual I like to add any positives in the balance out the health issues - I've not managed to do much lately with very low energy and severe brain fog, but its been amazing to discover that I was awarded SWPP Plant and fungi photographer of the year for 2020 - this is a huge achievement for me and very special for me. I feel truly honoured to win this. So made the effort to get a pic of me with my trophy and certificate. The winning image is below. 

UPDATED 19/4/21

Last week we had a catch up with the Nutritional therapist who rounded up the test results along with my experiences. Tests indicate-

bacterial gut imbalance

mould 

low dopamine and seratonin - common in inflamation

oxalates a little raised

low vit B6, vit C & NAC all indicative of oxalate involvement

low folate metabolism - (required for energy)

low antioxidant/detoxification status

low mitochondrial dysregulation

suspect ability converting energy from carbs

As a result of this info I am continuing on the low lectin, low oxalate nutrition plan just for this month whilst slowly introducing numerous supplements ( such as digestive enzymes, vit B1 and a few other things) to hopefully help reduce brain fog, build up my digestive system and to help with some of the above issues. We have liased with my GP and Im having a few bloods tests this week. We have an aim for me to commence a keto diet 4 weeks into the new supplement protocol, fully supported, checking in with both my GP ( who is incredibly supportive of this whole plan)  and nutritional therapist. Ive really simplified the plan here - in reality its quite complex and I will be taking a large amount of tablets to address different issues at different points, and nutrition is approached carefully. Not everything can be addressed at once. But slowly moving forward, pain is still greatly reduced bar 2 days out of the last 2-3 weeks.

M.E. symptoms explained Cognitive dysfunction - Brain fog

 One of the most embarrassing and disabling symptoms of M.E. is what we commonly call Brain fog, known in medical terms as cognitive dysfunction.

Ive cheated for this as copying and pasting from the ME associations website( in red) - as suffering from brain fog right now!  This explains it well.

Often referred to as ‘brain fog’ by people with ME/CFS, cognitive dysfunction is how doctors refer to problems with normal mental functioning – concentration and short-term (working) memory in particular.

It’s a worrying and often very frustrating part of having ME/ CFS. The symptoms can fluctuate and vary from mild to severe. The cause remains uncertain and there is no effective form of drug treatment available – although self-help coping strategies can be helpful.

What is cognitive dysfunction

Typical symptoms include:

• Short-term memory lapses
• Difficulty in concentrating or sustaining attention
• Difficulty with processing incoming information and retrieving stored information
• Trouble finding the right word, remembering or mixing up commonly used words
• Problems with carrying out everyday tasks that involve any form of sustained mental activity

Problems with short-term memory and poor concentration inevitably lead to other cognitive difficulties.

“In practice, cognitive dysfunction means that people with ME/CFS experience problems with a wide range of tasks that relate to normal and effective mental functioning. In particular, they experience significant difficulties with short-term memory, the learning and processing of new information, and the ability to concentrate for more than short periods of time.” Please follow the link here for a lot more on this symptom and how it affects people with M.E. MEA Cognitive dysfunction Brain fog has been an extremely prominent symptom for me, even worse than usual recently. Tasks like creating this blog need breaking down over days or weeks and enlisting help from others at times. I would normally then do spell checks and double check what I have written for errors but I have decided not to do this anymore - so people can see exactly how it is affecting me at any one time.  How it is affecting my life - I am constantly forgetting things - not just words but actual events or memories. Apparently I have discussed something I brought up with my partner this week 3 times in the past and I have no recollection of discussing it despite him trying to prompt memories - I simply can not recall, I find this quite upsetting some times but try not to let it bother me. Practically it can be dangerous or have an impact on my life - I left my bank card at my local shop, I have left doors unlocked at home, forgotten the cooker or my heat pad is switched on, attempted crossing a road thinking it is safe when it is not ( my daughter has pulled me to safety many times). I cannot remember if or when I have taken medication - so use a dosing box - but frequently cannot recall what time I took pain relief - I make a note when its bad. Sometimes it can make me feel disorientated and affect me visual or spatially - I can be clumsy often. Brain fog can affect our attention span, ability to concentrate, understanding things, working things out, and making decisions - the amount of time I struggle to make a decision simply because I struggle to think of the  issues surrounding etc I have lost count. I did not even know my decision making was affected by the brain fog until recently. We learning more about M.E. and its effects all the time - and forgetting bits of it all the time too 😁 Often doing too much physically or mentally, or even stress and bring on brain fog or worsen it. Another symptom that also affects our thinking is background noise/light and activity. For example sometimes when I have brain fog I cannot follow a simple conversation with one person when there is background noise such as Tv, other people chatting, music, lights flashing etc. It is why I avoid noisy environments a lot of the time or if I am out to see a band occassionally I will not chat to people much because I simply cant at times.  The effects of all this can leave people feeling quite vulnerable. Note it took me 4 sessions to write this slowly because of brain fog - having to lie down after one session. I also started to write a whole new version 3 months later - completely forgetting I had written this one and saved it as a draft ready to check it over! So this demonstrates how badly my memory is affected.