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.