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Jen's Optimal - Recovering from Myalgic Encephalomyelitis (M.E/CFS), Depression & Anxiety...

Discussion in 'My Optimal Journal' started by Jenlou, Oct 11, 2018.

  1. Jenlou

    Jenlou New Member

    Hello,

    I’m Jen. I’m 37 and from the UK.

    I’ve been here for around a year now, on and off …more so recently, as my health has improved enough to allow me to learn more.

    I’m hoping to update here fortnightly, on the progress I’m seeing, questions I’m pondering, and insights I’m gaining.…

    I’d really like to start with a big heart-felt thank you to Jack and this community for all that it offers, I can see it is genuinely changing lives in very big ways. Seeing the comments/results that people are experiencing has been so inspiring to me. I find it difficult to write and articulate what I want to say as I have poor cognition problems… so for now, I’ll just say thank you to you all and I hope to be able to engage with everyone more as I make more progress with my health.

    My health history is at the bottom of this post... as I’ve tried to summarise, but it’s still very long (I’ve just copied it from elsewhere and will try to edit/shorten as I improve) :)

    Much love, Jen.


    NOW/ RECENT

    • Slowly recovering from M.E (Myalgic Encephalomyelitis, also known as CFIDS Chronic Fatigue Immune Deficiency Syndrome).
    • Prior to M.E and during onset, I also suffered from severe depression and anxiety. Due to nutritional interventions, I am mostly recovered from depression and anxiety symptoms (occasional symptoms around menstruation each month).
    • I’ve progressed from 10 to 40 on this functionality score (with some short periods at around 60) over the past 4 years; http://www.drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are I’m am mostly housebound and have to spend much of the day lying down.
    • Support from a nutritional therapist for the past 4 years, including a low oxalate Paleo diet, and supplementation.
    • We’ve worked on: supporting adrenal, reducing inflammation, reducing oxalates, supporting SNP’s / methylation/detoxification pathways, supporting mitochondria, correcting nutrient deficiencies such as Low Vit D, B12, folate, Vit C, supporting neurotransmitter function, parasite cleanse, biotoxin protocol, and I’m currently tackling Candida.
    • SNP’s I have... Heterozygous: MTHFR A1298C, COMt V158M, COMT H62H, MAO-A R297R, MTRR A66G, MTRR A664A, BHMT-08, AHCY-01, AHCY-19. Homozygous: VDR Bsm, CBS C699T.
    • I am two months into a ketogenic diet / Jack’s Epi Paleo RX advice. Attempted the same in 2017, but really struggled. Doing well on it now as my adrenal results and sleep are in a much better place, so I assume that has made the difference.
    • Past month I’ve felt very drowsy in the evenings as the evenings are now dark. Asleep by 9.30/10pm and waking naturally around 6.30am.
    • Felt strong enough to start a Candida / gut protocol in late July. This is currently playing out as repeated immune responses (sneezing, sore throat, thick head, stiff neck, diarrhoea, highly engorged veins (a sign of high inflammation for me), a thumping, a very strong heart beat when I stand up and after I eat, and breathlessness.
    • During better spells, I try to visit the sauna a couple of times a week.
    • I’m taking extra magnesium in the form of 2 x magnesium chloride flake baths per week.
    • I do some very gentle simple Yoga asana practice when I can
    • I’m incorporating both Vagus Nerve exercises from the book: ‘The Healing Power of the Vagus Nerve’ and some basic Somatic Experiencing movements daily. They seem to help reassure my nervous during times of Increased stress..

    Throughout 2018 I started incorporating the following;
    • As much sunshine as possible (summer and autumn in UK has been very sunny) - my storage Vit D levels are now 104.3 nmol/L
    • I spent much of May-Sept in my garden, grounding on bare skin
    • Recently switched my fluoridated tap water to Evian bottled water
    • Blue blockers for TV
    • Hardwired our internet, devices and Apple TV
    • Phones are turned off at night. During the day we turn WiFi and data receivers off on the devices.
    • Device screens turned to Red for any evening use. My husband has FLUX on his work computer.
    • We don’t have a smart meter
    • I get an hour of morning sunlight between 9am-10am, after my daughter has gone to school
    • Re-positioned our bed, so on days when Im not well enough to get out of bed or outside, I open the east facing window wide and rest for 2 hours in the sunshine (when it's sunny!)
    • Started CT again (face dunking) which I couldn’t tolerate at all earlier this year (it completely wiped me out). I can now tolerate 45 seconds of ice water face dunking, which I’m doing daily.
    • We’ve turned the thermostat down for the winter and are leaving the windows ajar at nighttime.
    • Using candles only after dark, now that the nights are drawing in. My daughter, Maya has a red night light in her room for reading bedtime stories
    • Daily meditation practice which I stick to as it helps me so much, and we practice gratitude at bedtime with Maya to help us keep focused on what really matters / oxytocin.
    Current supplements: magnesium citrate, SAMe, adrenal bovine concentrate, L-carnitine, B12, Coenzymated B1, Marine collagen, COD liver oil (for Vitamin A], Vitamin K2, Vitamin D3, Vitamin C, Liposomal Glutathione, natural progesterone, pregnenolone, Vit d, Sodium butyrate, Lactoferrin, L-carnatine, liquorice root, activated charcoal, grapefruit seed extract, Pau de arco, molybdenum, goats milk kefir.


    Next stages / questions I have / research to do….
    • Starting to think about tincorporating either homemade mackerel head broth, or raw fish head smoothies.(Thank you, Inger!) Supermarket fish counter is as fresh as I can get, as I live 2 hours from the nearest coast.
    • I’m adding extra iodine to the broth in the form of dried nori, seaweed and dulse – but the smallest amount seems to give me diarrhoea, so will monitor how that goes
    • Hire an EMF meter to check for dirty electricity / nnEMF levels in our home
    • save for, and research a reverse osmosis water filter system...how to get fluoride out of our shower/ bath water?
    • how to offset UK winter low sunlight effects? – would a infrared device be helpful, or too much EMF?
    • how can I remain grounded as possible during UK winter? Have considered a magnetico but for now it’s way beyond our reach financially with the postage costs.
    • consider a winter sun holiday … canary islands perhaps? or would a magnetico be a better use of the money?
    • worried about WiFi effects at school on Maya
    • is having a warm bath twice weekly, offsetting any benefits I will see from the CT (face dunking) I assume so?
    • consider some functional testing for Maya, as I am concerned that she is at higher risk of serious illness, given my history / mitochondiral issues.
    • read comments on blog posts
    • continue reading forum advice
    • read through Jack’s FB posts
    • consider paid membership if financial situation improves / supplement costs decrease.
    • look at concerns about deuterium levels in supplments and consider decreasing them / learn more about deuterium
    • It has been confirmed that my area of UK will be one of the first to trial 5G
     
  2. Jenlou

    Jenlou New Member

    MY HISTORY / FAMILY HISTORY


    - Maternal grandmother took her own life in 1958 when my mom was 4 – suspected Post Natal Depression.

    · Mom had no family support in raising my brother and I. Dad was pretty hopeless. always very tired, stressed and abused alcohol a lot, which resulted in violence at home. I remember being home felt very stressful, and not much fun.

    · Diet and environment pretty awful - I grew up in the 80’s in an urban area, with lots of sugary cereals, white bread, Vegetable oil spreads, processed foods, refined carbs.

    · Mom worked cycles of night shifts, then day shifts, as a Nurse. We were always up late to collect her from shift, and up very early with Dad to take her in.

    · Water supply in my area is fluoridated.


    - Glandular fever at 15

    · I smoked (approx. 5 a day) between the ages of 15-32

    · Hormonal imbalance started in early twenties, repeated visits to doctors with complaints of feeling low and tired, with engorged breasts and PMT at menstruation.

    · Severe lack of self-esteem... I believe caused by home environment due to my dad’s behaviour (aggression, violence, negativity and alcoholism). Both parents had/have self esteem issues. I was also physically and emotionally bullied at school between the ages of 12-15.

    · Early-mid twenties - constant low level anxiety, and the complete inability to know who I was, or what I wanted from life. Simple things like shopping became impossible ...completely overwhelmed with choices. Didn’t know ‘what was me’, or what wasn’t. I hid it well and was only really just then starting to become aware of how I actually felt, because this is just the norm. I detested my job in corporate business…I’m good at it, but it felt mind numbing and soul destroying, yet I felt worthless to do anything else. Started uni, but dropped out. Started other courses/ interests but dropped out, because I had no belief in myself. Self loathing started. Ended a happy long term relationship without ever really knowing why… other than the constant feeling of discontent and ‘needing’ to try other things, never settling, always wanting something else, a feeling of trying to escape my life.

    · Hormone problems worsened, started feeling very angry and upset most of the time and acting out against people I loved, just like my dad used to. I tried birth control pill after birth control pill, in an attempt to help the symptoms. Doctors tell me it’s normal for women to have these symptoms. I’m diagnosed with fibrocystic breasts and given yet another hormone pill to try.

    · Bloating in stomach after meals, awful wind and repeated thrush infections - treatment from acupuncturist for Candida overgrowth and allergy. Doctor dismissed this, tellingly me I’m wasting my money, “no such thing as Candida overgrowth”

    · Lifestyle at weekends is heavy drinking and smoking and occasional class A drug use. I feel awful for it, but completely ignore my body. This is normal behaviour within my main social group, and other people’s opinions of what I do/ how I act far outweigh anything else.

    · 28 - Quit job to go travelling around the world with my partner, Tom. Thought I’d feel better for doing so didn’t. I can’t enjoy anything, almost like I’m not living in my body and having these experiences that should feel incredible. Whilst away, sought counselling for depression which didn’t help, other than it felt good to have someone to talk to.

    · Received 7 travel vaccinations for the trip, which seemed to cause repeated headaches and body/joint pain. Symptoms dismissed my doctor.

    · Whilst travelling took 3 months worth of anti-malarial tablets (which I later discover are anti-biotics ‘Doxycycline’). I now have constant vaginal thrush, fungal toe nail infections, dreadful anxiety and depression, constantly bloated stomach and a increasing dreadful hangovers from the smallest amounts of alcohol. Often, I wake feeling ‘hungover’ having drunk no alcohol for weeks.

    · Diagnosed with a Candida overgrowth and an allergy to Candida by two separate alternatives health practitioners whilst abroad. Again, doctors dismiss this and tell me there is nothing wrong, “perhaps IBS”…for which they have no advice for. “Is it nutritional, or can it be helped with nutritional interventions?” I ask. Definitely not they say.

    · Only at this point, I started to reject what my doctors were saying and look at what might be going wrong in my body myself. I start a regular yoga practice and start to redevelop a long- suppressed interest in nature, biology and spirituality… for the first time, I begin true self- inquiry and reflection.

    · Hormonal issues are almost now intolerable. Severe PMS / mood swings , sore breast for 10 days each month. Unable to exercise post-ovulation as breasts are too swollen and engorged. I spend 2 weeks of every month dosed up on pain killers and the only thing I find that brings a little relief is a homeopathic remedy.

    · We arrive home (UK) in May 2012, and I fall pregnant in September 2012 - hormonal and depression symptoms dissipate during pregnancy apart from the very sore breasts which remain for the duration. I have ‘morning’ sickness throughout and feel exhausted. I’m in bed for 6pm most night…so tired I often have pull the car over on the way home. My iron is low and the tablets from the doctors don’t seem to bring levels up enough. During pregnancy I practice yoga, meditation, Hypnobirthing and for the first time, I start to get more of an idea of what knowing myself and listening to my body might look like.

    · A good and completely natural labour, with the exception of gas and air.

    · My daughter Maya being born connects me much deeper to my own spirituality. I’m in awe of the biology, the wonder of it all and the utterly overwhelming experience of this amount of love is unfathomable.

    · I put the exhaustion I feel down to bring a new mom. I struggle deeply with breastfeeding - my body just doesn’t seem to have the resources to make much milk at all, which is a huge disappointment. I blame and shame myself and push myself to do more...staying up until all hours trying to pump more milk. I’m not coping physically, one lift of the baby car seat, or trying to hold Maya for breastfeeding is exhausting and brings me to tears.

    · My right elbow and knees ache deeply, I start having migraines, my blood pressure keeps plummeting, and I’m increasing depressed and anxious again. I attend anxiety counselling, but it doesn’t make sense to me... I know intuitively that there’s something wrong inside, this isn’t just a case of changing my thought patterns or behaviour.

    · A rheumatologist tells me that my elbow and knee pains, are likely from picking my daughter up a lot, or my pregnancy hormones settling.

    · An endocrinologist suggests this is chronic fatigue syndrome but is very vague about the whole thing. A short synacthen test we do causes me to sleep for 16 hours straight.

    · 9 months post-partum - I’m having day-long severe anxiety and huge panic attacks. I’m having thoughts that don’t feel like my own and they are spiralling. I’m in a constant state of dread and having feelings of terror. I don’t feel like I’m in my own body, like nothing is real. I have two very strange out of body experiences whilst out with Maya - I feel like I’m above her and the oncoming traffic is too close...my rational thoughts are like little blips in a sea of panic, upset and confusion. I feel like there is part of me that will hurt her in some way.

    · Twice, and once on an occasion when I’m alone in the house with Maya, I pass out.

    · I’m starting to really struggle cognitively; simple admin and maths are tricky. My spelling, handwriting and punctuation is poor, I have to re-read sentences countless times and still don’t retain the information. I loose so many bank cards within the space of 7 months, that my bank tells me they need to run further fraud checks on me.

    · My nervous system is frazzled, I start getting electric shock type sensations at loud noises or when I sense the slightest danger, like a car driving too close. I’m jumpy at everything, I can’t watch the news or anything scary or slightly distressingly as I get a hugely overemotional response, my spatial awareness is warped – Im constantly walking into door frames and curbing my car. I leave it unlocked, forget to lock the house when I leave. I worry constantly that I’ll do something to harm Maya.

    · I try different types of anti-depressants, but I can’t tolerate half of the smallest dose. I can’t lift my head off the pillow, my neck feels engorged and so painful, my lymph nodes are swollen, my brain feels like it’s misfiring and the pain in body increases. I am told, that because I feel suicidal with a small child, that if I don’t persist with the anti depressant dose, Social Services will have to be notified. I don’t return back to my doctors, or the NHS, what’s the point.

    · Around this time, I’m starting to have massive energy crashes. The slightest activity seems to bring this on ...1/2 hour of housework, a walk to the shops and back. I start some homeopathic remedies which help a little with the depression the anxiety, but I feel so poorly all of the time now… constantly hungover, always feeling like I’m stuck somewhere between having a virus and trying to run a marathon without any training. I’m constantly dehydrated, the skin on my hands looks wrinkly. I lose three toenails to fungal infections. Putting Maya to bed is impossible, I try to read her a bedtime story, but my arms hurt so much from the fatigue and pain, I can’t hold the book up or my arm up to give her a bottle. I go to drive home one day and cannot remember the way.

    · I feel suicidal and I cannot go on this way. I’m caught between sleeping 20 hours a day and long periods of complete insomnia... Maya has to stay with Grandparents 3 nights each week, as we can’t cope. Tom has to resign his job, and go self-employed so he can be home more to take on the housework, care for me, cooking etc. With the help of my mom and Tom, we research everything we can about my symptoms. I try to learn as much as I can about fatigue, pain, inflammation, the gut... I quit smoking and alcohol completely.

    · My doctor agrees that I have M.E, although simultaneously states that it’s not a real condition! I take his referral to the local CFS clinic, that my husband has found. By the time our appointments come through 5 months later, I’m too poorly to leave the house for them.

    · All of my existing symptoms are huge now. I also feel nauseous and have diarrhoea much of the time, my muscles twitch and cramp constantly, hormonal symptoms now stretch to 16 days each month, and the cognitive impairment means that often, one sentence in a book is unachievable. I recall not being able to remember my middle name or the year I was born when asked when trying to register at a new GP’s. I give up driving. Noise is becoming a real problem and causes the other symptoms to worsen. When I can get out of bed, I burn pots and pans regularly…I see them burning on the stove, but it’s like my brain can’t compute and tell me what I need to do to turn the stove off.

    · We find a nutritional therapist online that specialises in fatigue issues. I am naïve…. I assume that now I’ve found someone who might be able to help, I’ll be better soon. Give it a few months and I’ll be back...I’ll be a ‘normal’ mom, and wife.

    · Some tests reveal that I have systemic inflammation to my brain and central nervous system, my immune system is struggling, I have problems with methylation, adrenal/HPA axis issues, a very leaky gut, intolerances to numerous foods and sulphur, I am hypothyroid, my progesterone, pregnenolone, serotonin, vitamin c, vitamin d levels and b vitamin levels are next to none existent.

    · The crashes after any exertion now have a paralysis to them and can last days or weeks. Each day, I stir from a crashed half sleep /half dream like state and my body doesn’t move. I have no idea what day it is or what’s going on. I come around slightly. Have I remembered to sort birthday gifts out this month, or have they passed? There is brief moment of panic...almost like I can’t believe I’ve survived another crash and I’m still here. Each one is terrifying and surreal. “My god, where is Maya?” ..and then then relief with the realisation that she’s safe with her grandparents, combines with the despair at her not being here again… and then it happens again, and again, and again.

    · Over the next four years, I waver between completely bed bound, house bound, being able to pop out for an hour or two, and very occasionally, a slightly brighter spells where I can manage, or rather push myself through a day out or a weekend away during a ‘good’ period.

    · We are very lucky to have practical and financial support from both sets of parents, and ironically (aside from Tom), it is my Dad , who having worked through some of his own issues, is my greatest source of emotional support.
     
  3. Jack Kruse

    Jack Kruse Administrator

  4. Jack Kruse

    Jack Kruse Administrator

    The last two things you posted are most important.

    If this is true.....you got to move.

    And you might need DDW if you continue to live this far from the equator.......closer to it will improve your redox fastest to reverse what ails you.

    5G will discharge the voltages you've gained.

    I believe a purpose is something for which one is responsible for cultivating and bringing forward to the rest of the world to see. Why do you do what you do? I believe we’re the creators of our own experience – comprehending this every day and remembering this in every experience we have while living our lives from this perspective empowers us to do great things that others think is impossible. Do people make fun of you and call you crazy when you think that what you're building might change the world in some way? My advice is not to worry about what any 'obedient idiot' thinks about you or your work on social media. Do what you are passionate about doing. When people get in your way eliminate the unnecessary. Removing them will improve the rapidity of change you seek in the world. What you are doing might not make sense to the rest of the world until they see the wisdom in why you are doing it. I

    Black Swans who have a very distinct why they do and live as they do, become able to bear almost any how the world throws at them. This is the way of the mitochondriac. The failures I have learned about my profession since I left training have taught me the greatest lesson of my life to date. You can’t just sit there and wait for people to give you that golden dream or promise you thought you were getting in life or your job. The reality is you must put your best ideas to work with actions that can really make a difference to the people who you are trying to help in ways they might not understand on the surface. You do this by putting yourself out there and make it happen for yourself and them.
     
  5. Jenlou

    Jenlou New Member

    Thank you Jack, for the respose and the advice.. it is much appreciated.

    Yes, 5G is due in late 2019 .. so we are currently pondering our options.

    Thanks for for the heads up on DDW, I am looking into that too.
     
  6. Jenlou

    Jenlou New Member

    NOTE TO SELF..
    tinned oysters look like my only option - look at whether worthwhile addition.. as they're only available in sunflower oil.
     
  7. Jack Kruse

    Jack Kruse Administrator

    not good. Buy them on line. Avoid all fake oils = deuterium problem
     
    Mayuri and drezy like this.
  8. Jack Kruse

    Jack Kruse Administrator

  9. Jack Kruse

    Jack Kruse Administrator

    Why we should avoid sunflower oil: It is an oil made by the sun but processed badly by man.
    The hydrogen source of ANY lab created food does not control for its elimination as a chloroplast does.

    We have a very detailed mechanism in our bodies that keeps deuterium at a certain level tied to the light in the environment and our location on Earth that works to do things cells need to program amino acids. Our blood is one concentration and our matrix has another more stringent requirement. When you keto snacks you stress the latter and if the latter is already fucked you've made things that much worse. See Jimmy Moore and his keto snacks as an example. Sunflower oil is another.

    This is why fruits contain all the deuterium from a plant whereas the green stuff is much better off. If it does not grow around you-you have no business eating it at your latitude. For those who live at a high latitude, we can handle the fruit for a short period of the year if we're in the strong sun but otherwise we're toast because of the mechanism mentioned above.
     
    Mayuri, Jenlou and drezy like this.
  10. Jack Kruse

    Jack Kruse Administrator

    Since you are in the UK......your journal experience makes total sense to this Black Swan.
     
    drezy likes this.
  11. Jenlou

    Jenlou New Member

    yes, I suspected as much r.e the oysters in sunflower oil, but was trying to figure out if the gains from the oysters would offset the S/f oil.. thanks for clarifying that, Jack.

    yes, i'm off all fruit - and only seasonal / local fruit this summer

    I'm head deep in deauterium blogs and light info.. my understanding is growing, lots of light bulbs going off :)
     
  12. Jenlou

    Jenlou New Member

    Maternal haplogroup:
    H13a1a

     
  13. Jack Kruse

    Jack Kruse Administrator

    So you are an uncoupler........good. Now you need to figure out if your SNP's and SAP drive you to light or cold or to both.

    It bothers me when I visit a medical school or residency program and see so much talent that is in the pursuit of myth. I think we have a duty to alter that trajectory. The best way to engage the mind is teaching it how to think and not what it should be thinking about. The same is true for the public and all those non-black swans out there. I wonder when they will choose to awaken?
    https://www.linkedin.com/pulse/why-...arning-mental-illness-jack-kruse/?published=t
     
  14. Mayuri

    Mayuri Silver

    ____________________________________________________________
    Dear Doc, Organic Sunflower Oil, the label doesn't say anything about hydrogenated oil.
    Does all 'organic sunflower' oil therefore contain deuterium? does it all undergo hydrogenated processing?
    Jeez, I just can't find anything for my tea ever. . .
    Apparently cream and/or milk will prevent the benefits of TEA and/or coffee.
    What on earth to use?!

    https://nutritionfacts.org/video/does-adding-milk-block-the-benefits-of-coffee/
     
  15. Mayuri

    Mayuri Silver

    Can I remove the oil with filtered paper?
     

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