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.

Exciting news

 I just had to share my exciting news as I am over the moon. Today I am absolutely thrilled to announce that my Fly Agaric mushroom photo has been placed 3rd in the IGPOTY ( International garden photographer of the year) Beauty of plants category. Super happy with this result - I made it one of my aims to get placed for the last two years. https://igpoty.com/winners-galleries/the-beauty-of-plants-14-gallery/

It was taken in my local nature reserve which I try to get to a couple of times a month. Last year there was an abundance of Fly agaric mushrooms, plus many others, which I could easily reach on my mobility scooter. I took along a mat to lie down on and a mini tripod, shutter release cable and mini LED light to capture these beauties. I have friends who were also exploring this nature reserve looking for different varieties of mushrooms to photograph and they would alert me to any varieties that were accessible, we helped each other to see specimens that some of us have never even seen before. So I am very thankful for their friendship and help.

I also won a competition with another mushroom from this park with the SWPP recently and have a 3rd one shortlisted for the SWPP Nature- plants and Fungi category too.

 All this has really picked me up and made me smile

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.

M.E symptoms explained - 1 Confusion

 What it’s like to have M.E. Symptoms explained.

1 Confusion - a symptom I have experience today and more frequently lately. One hour My brain can be functioning ok ish then with little to no warning I can become confused- affecting my ability to remember things or work simple things out such as navigating the new Facebook layout, finding a channel on tv or recently I could not work out how to navigate my way around a local nature reserve on my scooter despite knowing it well, even conversation can be difficult. This can make one feel quite vulnerable and can be distressing at times. So if someone you know with ME struggles suddenly when conversing or requests assistance to do something that appears simple - please do not think they are stupid - they may actually be highly intelligent but this illness can be causing this issue ( more symptoms in this area will be mentioned)

I want people to understand ME better- why? So that people like me don’t get harassed for taking a disabled parking spot, or don’t get laughed at or given filthy looks ( or have judgemental comments made) being on a mobility scooter, so that people stop thinking that because we appear to “look well” for an hour or two on the day’s where we actually manage to get out that we are well, it being thought of as lazy when we would give anything to be able to do just half of what we could pre illness. Plus a whole host of other reasons. ME is one of the most complicated illnesses I have encountered despite being a nurse previously - being told to man up and exercise or just push through can and does make us worse in many cases. So I will be making frequent posts to help people to understand- even many of our Drs dont understand because they are taught very little about ME and do not keep up to date on it - some don’t even believe it exists- we have to literally fight for help at our weakest.

Please do not comment with sympathy- I am trying to educate people - at the very least I hope my friends will understand me better and why you don’t see me very often. This is the start of a new series of short blogs only explaining symptoms and what we experience, what we have to go through as a result of having M.E.

Update on diet

Well Ive been following the Plant paradox diet for almost 2 months now, with one 3 day break where I thought I would try introducing a few foods again then by my 3rd day I really regretted this decision to promptly reverted back to following the diet strictly. Ive been sticking to stage 2 of the plan and my brain fog is definately  reduced a lot, although its not completely gone - I definately still get it worse  post activity, so mostly M.E related connected to post exertional malaise. My cognitive functioning has improved a good bit too although Im still experiencing difficulty  with  tasks such as learning how to work something new or  problem solving. My memory remains poor and this doesnt seem to have changed. Overall I would say my cognitive functioning has improved maybe 20-30% some days, but unchanged other days and brain fog has improved by between 20% and 60% some days,  however this is extremely variable and some days it remains the same as it was. It is hard to say  if other factors may be affecting this such as poor sleep or PEM , or if it is diet related. Personally I feel it is down to a mixture of these and the diet has reduced these symptoms  helping me to function mentally a bit better than I was on some days.

My pain levels have definately improved since starting this diet, they increased substantially when I added foods back in for 3 days and reduced when changing back.  Although on trying to be more active I still get high levels of pain in the days afterwards regardless of diet or whether activity is paced and minimal or  increased a lot (for me - this could simply be having a shower, drying my hair and attempting to cook an easy meal in one day, doing an hours photography sat in the garden). But on days where I pace and keep my activity levels at  my regular normal amount then pain can be reduced by up to 75%( with the odd day of very little pain), on days where I do a little more it is probably still reduced by 30%, and active or post active days it remains pretty much as it has been. I did actually have two weeks of much lower levels of pain and  reduced my pain killers to almost stopping them, but then it increased again - partly because I was  being more active - it gets frustrating doing so little and it can be worth being in pain just to keep myself occupied or have a feeling that I have achieved something.

My sleep has improved a lot overall, apart from a couple of weeks and the odd night I have slept much better most of the time ( ? 70% of the time sleeping well) My fatigue levels dont feel any different to me and my energy levels  dont feel noticeably different, although my partner has stated that on observing me it appears as if I have a bit more energy and I appear to be managing a bit better. I cannot say that I feel a great deal different with both of these. I still struggle having a shower a have to sit on the side of the bath to dry myself and have just put on a dressing gown to absorb the water when too exhausted to dry myself. Im am still struggling to dry my hair most of the time. I have had a little bit more stamina walking around home some days, but this is not consistent, my legs still get wobbly, weak, jumpy and feel like Im walking on the moon at times.

I have noticed that Ive felt the cold less and my hands and feet have not been so cold as much - whether this is because  of warmer weather/higher temperatures or maybe Im better at preventing my hands and feet getting cold, or a combination of both. Plus due to the restrictions on leaving home due to the current pandemic Ive only actually been out on my scooter once in about 6/7 weeks or so - just a local exploration. So Ive not been outdoors as much as usual, which is where I feel the cold most, but I have been in our garden  probably about 3-4 days a week for up to an hour at a time.

My partner and I have decided to try phase three of the diet, but only introducing one food at a time. I will be trying tomatoes first - fresh, peeled, deseeded and pressure cooked to reduce lectins. This one food could make a big difference to my food options.  I have unfortunately been unable to buy pasture raised chicken and eggs, the pandemic situation has made it even more difficult to obtain many specialist foods, so I have settled for free range eggs and normal chicken - I suspect these have slightly negatively affected my brain fog again - Im going to monitor this over the next few weeks and if I think it is then I will just stop having chicken and try to get omega 3 eggs again ( there is only one place selling these and its miles away - we arent supposed to travel unless for essential reasons such as food, medical reasons etc and I doubt my reason of getting brain fog from normal eggs would be accepted as the shop selling them is a good ten miles or so away). But if lockdown is going to be for many months then I guess one trip a month should be out of the question given how limited my diet is. ( limited veg, wild fish, limited types of nut, extremely limited fruit and very little else)

Its been a very strange couple of months where life has changed for people around the whole world due to the Corona virus pandemic, in a way it has affected me a lot less than people living a normal life without an illness, as I have little choice but to spend pretty much most of my life at home. Whilst I would say I am mostly adjusted to this way of life, I was used to getting out for a drive most weeks with Michael and going for a ride on my scooter anywhere between twice a month and twice a week. Now I find myself in the strange position of worrying about being stopped if I go out for essential exercise as an able bodied person might not appreciate that I used a lot of muscles in using my scooter - especially as I generally use it in nature reserves on rough ground, this means it can sometimes be difficult just to stay on it!

 I use muscles in my back, my legs when I am going up and down slopes, my arms for steering and generally keeping the steering from veering the wrong way etc. Now to anyone who is fit and healthy this may be hard to imagine, but my muscles are wasted and weak, using my scooter for up to an hour can actually leave me exhausted for the next couple of days. Not just using it but there is the getting ready to go out, the walking to the car and back, the few steps I takes as I am exploring where I get off to look at a plant, insect or view etc. All this keeps my muscles from completely wasting - can I do this my moving round at home - not really. I cannot use the same muscles and dont intend to lose the level of functioning that I have as it can take months on end building any level of fitness back up with M.E. - Im still working on  rebuilding the level of activeness I used to have before my major crash over 20 months ago!  So I will be starting to attempt going out on my scooter locally (in the local streets and nature reserve one mile away) providing I can keep the social distance  from people- unfortunately there are many selfish and ignorant people who do not care if they pass the virus on and will walk right next to you - its not easy to get out of peoples way on a street path with a kerb on a scooter, so the wider paths on certain roads nearby or parts of the nature reserve will work best for me.

 I have been experimenting at home and in our garden with a cheap old Helios 44/2 lens which Michael kindly modified for me - I love the effect it has given( see the dreamy look above and below this paragraph) This is more pronounced when shooting at a shallow depth of field, but only a tiny area is in focus and this is tricky to achieve with manual exposure and other difficulties affecting peak exposure, but its been fun and I will continue to use it for floral work. I have a couple of magazines interested in publishing some of the resulting images.

I have also been producing more background images using this lens and have added these to my texture collection which I have decided to sell. I still need to work out how best to go about selling them as I have had some interest, but not sure its enough interest to make it worth while paying for a digital downloads shop online. Something for me to sort over the coming months.

Another reason it has been a strange month is birthdays -it has not only been my birthday, my partner Michaels birthday but my daughters 21st birthday - all in the middle of lockdown without being able to see anyone. Now I am used to this - Ive had many birthdays where Ive been unable to go out due to M.E - but I usually made it out within a few weeks but its hard for a young lady celebrating her 21st alone - literally seeing nobody, but we tried to make the best of it. In the weeks running up to her birthday I managed to get about 15 short videos from her friends and family especially for her birthday. The singer from one of her favourite bands agreed to create a video specially for her and sang two songs in it - this really made her smile. Then she had a long video chat with me followed by video chats with friends.

I actually had a birthday drink about a week or so following my birthday - my first alcoholic drink since New years day! I stopped trying to drink any alcohol after having reactions to it almost every time I tried - one or two mouthfuls of wine or ale would make me feel breathless with a racing heart and as if poison had been poured into my veins. It would settle and usually I could have a couple of pints after an hour or two but it wasnt enjoyable and was not worth it so I stopped drinking alcohol - not that I drank often, probably a couple of times a month. I decided to try a glass of mead and had no bad reaction at all so ended up having two glasses. I am allowed a glass of red wine on this diet so figured a small amount of mead occassionally cant be too bad - im pretty sure it doesnt have lectins, although the sugar content may be high, but I am allowed a spoonful of honey now and then, so its not that far from my diet.

I have two new Preying mantids now a Rain forest mantid and a Malaysian blue mantid which I was able to order with my regular live food delivery for my other pets. Theyre super cute - expect to see lots of photos over coming months.

The best made plans

Well I made it to my 5th week on the Plant Paradox diet before my plans of sticking to it became more difficult due to the most unusual and sad changes affecting the whole world now - Covid 19 - a new Corona virus which has spread round the world in a matter of months, resulting in thousands dying and life changing in ways that we in Britain haven't seen since world war 2. Due to the need for the majority of people being ordered to stay home by our government, to stop the spread of disease ( quite rightly so) there have been knock on effects in how we obtain shopping. If you are healthy you can take a trip to shops as infrequently as possibly to buy food or medication, but if you have an existing illness or are over 70 it is advised that you stay home, isolate and shield.  So this is what I am doing, and we are trying to avoid my partner going shopping as well. It has been incredibly difficult to get a full shopping list online - many items that are impossible to buy - such as the dairy free, sugar free, soy free coconut yoghurt that I get or omega 3/pasture raised eggs - which without I end up just eating fish and vegetables - not easy weeks on end! So I decided to stop following the diet during our current crisis and try again when things settle down.

However, after 3 days, on my 3rd day eating half Plant paradox diet, half normal food my symptoms really started getting worse again. In the month of following the diet my pain levels reduced around 75% most days - I think I only had about 5 days in a month where my pain levels were as they have been prior to this diet and now my pain has increased again. I think I had been a blase apart having pain again - but right now I want to stick to the Plant paradox diet again even though it means eating pretty much nothing other than restricted vegetables ( without lectins - so no tomatoes/peppers/potatoes etc), wild caught fish if we can still get it delivered, restricted nuts ( no peanuts or cashews), certain oils such as coconut/avocado or olive oil, coconut milk.  I think I will just have to try using free range eggs and hope for the best that my symptoms settle down again.

Symptoms helped by 4 weeks of the diet -
pain mostly reduced, also less stiff on moving around
 brain fog and actually being able to use my brain a bit - certainly not back to normal levels but definately much improved - although 3 days into stopping Im struggling to think again!
Sore throats - normally I have sore throats anywhere from 2-6 days a week - by week 3-4 on the plant paradox diet my sore throats only occurred once or twice a week ( it can literally last just a matter of hours)

Off the diet - by my third day off the diet and having lectins again, not only has my pain increase in amount/intensity but with frequency and in so many areas of my body. But I also noticed that the little jumpy, sort of electric shock/twitchy feelings I get in my muscles have suddenly increased and my body feels on high alert again. Writing this is incredibly difficult - I can hardly think of the words that I need - I am literally stopping every sentence or two - forgetting things, searching for my words and feeling mildly muddled/confused - I was not feeling this so much on the diet - it was not cured but I was able to think properly more frequently.

I cant write any more just now as my brain simply wont function, but Im going to try really hard to get the foods I need to stick to this diet - whilst I felt improvements werent massive and energy levels had not improved at all, ending up feeling in pain again with a sore throat every day and my brain not working, my muscles twitching away  is enough to make me get back to it. Although I need to get more inventive on recipes for fish and vegetables as it gets tedious. I want to write more - including stuff about our current situation but feeling too muddled and cant explain just how hard it has been just doing this much - I keep completely forgetting what I was writing and getting confused - stopping and coming back to it. Even struggling to add the images. I have some things I want to write about that I feel are important but I will just have to do it at a later date when my brain will work. How bloody frustrating this is - I had agreed to write an article for a magazine whilst my brain was working a bit better - hoping  it will function better back on the diet again.

On a plus side - I just got awarded 2 golds and 2 highly commended from the SWPP  which made my smile. I feel super lucky that I live somewhere with a garden where I can enjoy watching the flowers, insects and birds during this awful time.
Hoping everyone stays well and safe, thinking of all my lovely friends and family and sending love to you all.