Adequate Hydrocortison Supplementation

The past ten days have been a wonderful, wonderful ride. I’m alive again!

I’ve upped my Hydrocortison daily dose from 20 mg to 35 mg.  It may sound like a lot but actually it isn’t. Anywhere between 20 and 50 mg per day can be normal for an individual. 35 mg seems to be my sweet spot. I can feel when it’s too much or not enough. Very interesting experience!

I also learned how to spread the dose throughout the day in a more physiological way (take 2/3rds of the dose before noon, take it in increments of 5 and 10 mgs)

Alive again! I’ve got energy! I’ve got stamina! I’ve been doing things I haven’t done since 2008. Things like taking a shower before bed. Just because I felt like it and wanted to feel the warmth of the water. I could never do that because it would affect homeostasis badly. I had to plan my showers. Each day I could chose to either take a shower or cook dinner. Couldn’t do both.
Now I can :)

I’ve taken walks into the city. I’ve started to do a little bit of exercising. One morning I just took the car and drove to my friend, just to have tea with her and eat all her chocolates, and then I drove back home and did some other things for the rest of the day. Without crashing.

Reverse Therapy is a tremendous help in keeping things fun. Doing things because I want to do them, not because I can do them.

Suddenly giving my body the hormone it lacks has affected other hormones. I’ve noticed changes in Thyroid hormones, Testosteron, Estrogens and Progesteron. Insulin too, probably.

I have the good sense to do HRT on a dose that doesn’t exceed normal daily production so any effects I have filter out of the system within a day. It’s interesting how I can influence it though. With food, with Progesteron cream, with calming the nervous system.

Today my medical tags arrived. I’m going to wear one of these whenever I leave the house and am in risk of getting in an accident or experiencing dehydration.
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I may order some new ones, with less info on the front but more readible. These tags are quite small in reality. I doubt anyone who finds me collapsed in the street will notice. And/or has her reading glasses nearby to read the information ;)

  • I will wear it with a white band with red crosses on it. I’m thinking of embroidering them myself. I could also learn bandweven…
  • I will wear these “upside down”, not in the way that I can read it but in the way that anybody grabbing my hand can read it. Seems more sensible.

I ordered these medical information tags from a wonderful company here in Holland: Healthband. They are very good, fast and reliable. They keep an eye out for optimum spelling and lay-out of the text and won’t start engraving until you give the final consent. Really good costumer service!

It’s a woman and husband company. She’s a diabetic and wears one of these herself. They noticed we lack a good supplier in the Netherlands for sport id tags and medical id and sos tags.

The tags themselves are good too. No sharp edges and quality engraved.

I chose to direct my information towards courages passers-by who find me collapsed or delirious from dehydration. I don’t dazzle them with the medical info, that’s all on the back. I try and tell them exactly what to do:

  1. feed me my pills. They’re in my bra. Do it! I’m in danger for my life.
  2. call the emergency services and say this: “adrenal crisis!”
  3. say the name and dose of the solution of injectable cortisol I need. I want the medical personal to know.

 

The hydrocortison is wonderful :)
I no longer need a wheel barrow to be carried around in to enjoy life:

It may still be a honeymoon period. I’m still figuring out a lot of things, for example this morning I woke up a zombie, I have difficulty getting things right through the night when I’ve had my insomnia again.

Insomnia!
Now I know for sure! When I/you wake up at 3 AM and are wide awake for 1,5 hors, that’s a cortisol surge. It is!
I can now reproduce it. It feels exactly the same.

The insomnia I have had my whole life is that: a cortisol surge at 3 AM. Puzzle solved!
Now onto the next: what causes this surge? That’s one of the queries I’m on now. That and the relation between homocysteine and my weird (scary) heart rhythms that I have since 15 months. Because I’m still doing the mB12 thing, now combined with Phosphadytil-serine which drives another keg in the same methylation system. My GP put me onto this.

It causes mild brain storms, literally. But luckily I can move more easily now and movement is marvellous for levelling hormones and weird brain chemistry. So, I’m off for a little walk now. It’s beautiful weather outside here.
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Managing Adrenal Insufficiency

So, now that my ME is under control by applying the things I learned from Reverse Therapy (RT) there remains the adrenal issue.

The ME is gone, I’m in recovery. The past three months I no longer had the Wired & Tired and general “I’m so dead why am I still breathing?” feelings that go with ME.
But I did have the consistent nausea, especially in the evenings, and I did have to pace myself severely. I even had an adrenal slip up on March the 5th. When I was in a new surroundings, was too cold, had been upright for 5 hours on end and was too stressed.
I started crying uncontrollably which is an alarm signal from my body that I need to make it safe asap or otherwise an adrenal crisis is in the works. It’s a scary route.

I cried. Took my pills. Took a long lie down in the car. Then drove home and went to bed. Took three days of rest.

Me resting in my car. I was wearing my hand felted princess dress and handknit socks. You should always be warm. And being wrapped in wool gives you a feeling of safety.

I’m not too good in the RT thing yet, I have to practice over and over again to relax, feel safe, and calm down the nervous system. But I’m well enough now to address the adrenal thing.

That’s why I had a battery of blood tests done, talked to my GP and had a consultancy with Adrenal expert Dusty Hardman from AddisonsSupport.com.

Dusty is not a doctor and will not make any decisions for you. But to the educated patient she’s a welcome sparring partner with lots of experience and knowledge. She herself has Addison’s and runs marathons -even wild ones, which lasts days and days- and researches Addisons’ medical info.

The blood tests were: hormones, electrolytes and more hormones.
My primary goal was, for both GP and Dusty, to find out whether I was wrecking things the way I’ve been supplying Hydrocortison until now. Secondary was to learn how to improve my protocol.

The risks of long term corticosteroid use involve loss of bone density; getting too high eye ball pressure and some other scary things. There’s also suppression of residue adrenal function, if you take too much.
When your adrenals cannot produce cortisol when you need it, say in an emergency like a trauma or dehydration, you run the risk of death. Quite quickly too.

As Pathology Personified illustrates it:

when vomiting twice, call the emergency services. Addisonian crisis is life threatening.

When vomiting twice, call the emergency services. Addisonian crisis is life threatening.

Addisonian Crisis: Medical emergency
14. Severe vomitting
15. Severe chest, abdominal pains
16. Back pain
17. Severe diarrhea
18. Syncope, fainting

Refs: 1-13 Merck Manual 18th Ed (2006); 1-4 Souhami & Moxham ‘Textbook of Medicine’ 4th ed (2002); 1,2,8,13 Goodman & Snyder ‘Differential Diagnosis for Physical Therapists’ 4th Ed (2007); 1-15, 12 Gray & Toghill ‘Symptoms & Signs of Clinical Medicine’ (2001); 1-3,7,14,15,18 Ballinger & Patchett ‘Saunders Pocket Essentials of Clinical Medicine’ 3rd Ed (2004)

But I haven’t had an Addisonian crisis yet. I’m still in the process of determining how my system is doing.

The electrolytes showed that calcium-magnesium was ok-ish but low on magnesium. Natrium-kalium was perfect. My kidneys are troopers!
I’m having a bone density scan done soon (DEXA) to tell me more about the bone density. In the mean time I have started to do weight bearing exercises. It’s the only thing left to do at my age.

Don’t go taking calcium enriched supplements!
You’ll only put your bone-cells into overdrive and exhaust them before you’re old. Have you never wondered why the country that drinks the most milk, the Netherlands, has the highest portion of osteoporosis? Calcium from dairy is bad for you. Lies:

This is all lies!
Don’t eat so much calcium. At least fill up on Magnesium if you do take some calcium. It’s such an easy and unlogical assumption to think that because your bone is brittle and it’s made from calcium you need to take more calcium.

My GP taught me about a complicating factor: that the bone cells needs vit D receptors and these decline with age. You should have maximum receptors at age 30 because after that they dwindle and cannot help your brittle ass enough.
I asked whether I was perhaps lowering my amount of vit D receptors with the large amount of vit D I take. Just like you lower the amount of Progesteron receptors when readily supplementing. He found it an intelligent question.

The eye-thing has been checked by an optometrist and the eyeball pressure will be checked in two weeks by an opthmologist.

The hormone ACTH is the hormone the brain releases to get the adrenals to produce cortisol. My value is 19 in a reference scale running from 0 to 50.
With my supplementation of 20 mg of Hydrocortison my brain is still asking my adrenals to put out more cortisol. Hence: my brain has not shut down my adrenals. And: my adrenals/supplementation do not provide my body with enough cortisol.

Not enough cortisol also explains my residu symptoms:
– nausea (not enough stomach acidity. Not enough HCL in the world to help with this)
– not able to make choices. See last posts. Who’d knew this was a symptom?!
– crying inappropriately
– dropping blood pressure
– losing words when tired. I especially lose my Dutch nouns and verbs. English ones pop up instead.
These are all adrenal symptoms.

My blood work showed I don’t supplement cortisol enough. There seems to be no damage with the supplementing I’ve done so far.

Talking to Dusty and reading everything on her site has given me a new look towards Addison’s. Doctors still know very little about it. And what they know they haven’t thought through very well it seems. They are so scared of suppressing adrenal function that they rather have people on too low a dose, causing them to have a poor quality of life.
Whenever someone needs an acute higher dose they linger to give it to them, wrecking their body unneccessarily.

I have educated myself and have started a trial of higher cortisol replacement. I’ve upped my dose, with blessing from my GP. And boy, do I feel alive!

pic by St.Mattox

Suddenly the quality of my life has shot up. I’m nowhere where a healthy person is, who runs after the children or doesn’t think twice about getting some groceries before cooking dinner.
But I can take a shower when I feel like it. Not make it the one thing I do on a day.
I’ve just been outside, puttering about in the garden. It’s a gorgeous Spring day out there! I came inside and sat down to write this post, I didn’t have to lie down first.

I’m now on 25 mg HC per day. And I’m going to up it to 30 mc because over the past few days I needed to stress dose each and every day because one day we were taking a drive of 1.5 hours. The next day the optometrist was about to put painful drops in my eyes which would annoy my body for three days. The day after I had stomach pains. And today I worked in the garden.

These are all activities/events that require a little bit of cortisol extra.

Yesterday I was hormonal. I was cranky, weepy and aggressive. Looking at the calendar I saw it was ovulation day. I never have these symptoms on this day. At best I can muster up a little bit of arousal but overal I’m a very tame woman.

With the upped HC I am pouring extra hormones into the adrenal hormone cascade. Less of my Progesteron is needed to make cortisol and it’s probable that it flows into Estrogen and Testosteron production. (Test. was low in the blood test btw)

I took extra Progesteron to counter it. Problem solved.

This HRT is all a delicate dance. Luckily I supplement physiological doses so anything I overdo or underdo leaves the system within a day. And I’ve danced with my Progesteron and Estrogen for a few years now, all the HRT things I learned from that I get to apply to cortisol replacement.

Lots of things happening, in just these 5 days since my trial started. For example I also noticed that my thyroid is picking up. I had it tested too and it is within range but not optimal. Which explain the residu thyroid symptoms I had:
– poor digestion
– poor intestines motility
– hair loss

With only a few days of extra cortisol my thyroid is feeling more comfortable: no hair loss and a more warm body. No more cold from the bones!
I do need to take my Iodium/Kelp supplement every day though.

Kelp by Donna Adenine

Adrenals and Thyroids are the battery and the gas pedal of the body. I’m revving and going through my minerals and co-factors faster.
I now take diligently daily: Zinc, Magnesium, Selenium, Kelp, vit D and Q10. If I forget any of these the system bucks.

I also take Lithium (the mineral, not the drug) and Progesteron (and Zinc to keep an even brain chemistry.

The action plan I wrote out with Dusty:
1. take two weeks to figure out correct HC dosage.
2. in two weeks test to see if Florinef is needed. This helps blood pressure. The test to take is: Renin, at 8 in the morning, sober without breakfast and without having gobbled salt the previous day.
3. in two months test Thyroid values. They should be better than they are now. If not supplement.
4. around that time: test sex hormones. They should be ideal. If not I should supplement. We’re talking DHEAs, Estrogen, Progesteron and Testosteron. Testosteron for females should be a 0.2% solution.
5. in 6 months time retest the whole shebang as these are the values I need to monitor my supplementing and my well being. DHEAs, Renin, electrolytes, FREE T3, FREE T4, Total and Free Testosterone, Progesterone. All of these things need to be supplemented if deficient.
6. Repeat this monitoring battery of tests every 6 months.

Also. Now that I’m probably on full replacement of the adrenal cortisol, I’m now in danger of my life should anything happen to me. Addisonian crisis.
Because of this I will ask my GP for an emergency injection kit for 100 ml of Solu-Cortef. It’s a cortisol you inject into a muscle in case of adrenal crisis. It’s pretty much like an epi-pen and it will save my life in the same fashion an epi-pen saves someone with sever allergies..

I’ve also ordered two wristband tags that state my needs. I hope, should I ever end up unconscious or wounded, a smart bystander will find me, read the tag and do what’s needed.
In my case: reach into my bra and feed me the pills you find there. Then call the emergency services.
Or give me the shot.

OMG feeling alive again is serious business.

by Mark Aplet

two more things to tell you:

  1. the court case about the manure plant was lost. Don’t know how that happened, I had such solid and scientific arguments. I guess we lost to political agenda and biases. I will now learn to live with a manure plant next to my cabin. But I did manage to write three engineer rapports last year, when I was still ill from ME and adrenal issues. That’s something to be proud of.
  2. I still wake up after 5 hours of sleep. I can’t find a consistent factor. But the stress system is involved, that I know. I’m now looking into problems with the intestines, specifically the Ileocecal valve, which lies between the small and large intestine. This bit hurts, at night. And I have circled towards a dietary habit that is THE diet for problems with the valve. Two coincidences that prompt me to look into this ileocecal valve.

How come I end up talking poo to you again? Twice!

Reverse Therapy: recovering from ME/CFS

Had my first session last week, a Skype session with therapist Lyn White in the UK. This works.
It’s the way to keep the body (autonomic nervous system) out of Fight or Flight. I’m no longer wired. Instead I’m relaxed, chill, happy. Without pain, without tiredness.

I’ve just spend four days on a road trip and a midwinter wool fair. First day I drove for hours and hours. Second day I stood on my feet in a wool booth and talked to people for 7 hours. Third day the same. Fourth day drove back. All the time was spend with a friend, I was seldom alone.

No crash, no pain. No worries, no strain.
This is unheard of.

I did have my usual insomnia (and then some due to mosquito bites) in the night but I performed wonderful all of the days nonetheless.
I was not overly sensitive to noises, smells or the presence of my friend.

Back home there has been no crash. There was tiredness, of course. There were bouts of head aches because of all the impressions and things I’d seen. A bit of a hoarse throat because of the unusual amounts of talking. My feet tingled.
But I’ve been so cheerful all these days! And the days after, here, back home.

Reverse Therapy and Mickel Therapy are what works for me.

I’m not going to talk about their medical opinions about what ME is. Just know that both therapies give a tool box to keep the nervous system calm.
And whatever their, mine or your own theory is about the relation between nervous system and ME/CFS, keeping the former calm helps to alleviate symptoms of the latter.

I am VERY GLAD to be back in the calm again. I had lost it when life stresses hit us in January/February of this year.
(I had found it in the course of the years I spend at the cabin, alone. Well fed, warm and finally without that stupid ambition. Once I did Gupta Amygdala Retraining I was without symptoms too but the calmness hadn’t ingrained. With Reverse Therapy it has.)

For the past few months I tried DIY Reverse Therapy, having read all the things that have been written about it and understanding its principles and its ideas. But it was not the right way. Having a coach is much more efficient. Because my twittering brain is always trying to keep on top of things it kept getting in the way of actually applying Reverse Therapy. A chatterbox in the head is precisely the thing the nervous system doesn’t need.

Long story short: a whole new world has opened up to me. I’m calm and am experiencing bouts of happyness from the very core of my bones. Symptoms are dwindling. I’m without worries. I had a wonderful weekend with my friend.
I’ve started dreaming about (and planning) holidays.

Reverse Therapy and Mickel Therapy are precisely the thing I need. On top of all the other things I’ve learned to do over the years to support my body:
– take vitamin D because of where I live on the globe
– take extra vit D because my receptors are wonky
– dabble in mB12
– keep levels up from minerals Zinc, Lithium, Magnesium, Molybdenum, Selenium and Iodium
– avoid cruciferous vegetables (onions, kale, garlic etc.)
– supplement hormones I lack (Progesteron, Cortisol)(all body identical in physiological doses)
– supplement Progesteron to counter Estrogen highs during the cycle
– avoid blood sugar spikes and stress and practise sleep (restriction) therapy to sleep through the night
– avoid foods difficult to digest (boiled egg whites, raw food, nuts, leafy vegetables)
– avoid foods that “feel bad” (vegetable oils, caffeine, sugars, fried foods, vanillin, commercial chicken and vegetables that never saw soil or sunlight)
– avoid tiresome people or learn how to deal with them without investing energy
– rest flat for one hour, one hour after the last bite
– eat small portions
– aid the acidity of the stomach with HCL
– aid the lymphatic system with stretching, yawning and lots of full fats (butter, coconut fat, fatty animal tissue)
– keep the nervous system relaxed (Reverse Therapy, doing fun things, be cheerful, having cups of tea, dancing in the living room, cuddling the cats)

What else?
With the cortisol pills and the managing of my own stress levels I can tune the immune system a bit and have it be extra vigilant at times when I’m surrounded by lots of “germy people”.
I have gotten only one cold since I fell ill in 2008. And that cold was when I was severely stressed because I wanted to go on a cross-Europe train tour. Extra stress = extra cortisol = suppressing of the immune system = invitation to opportunistic viruses and bacteria.

And finally: I’m a firm believer of practising Mental Hygiene. You are not obliged to think what you think. If what I think makes me feel bad (worry, disaster scenario, reliving bad memories, focusing on bad aspects) I can and I should correct myself.
Think of something else. Anything else. Think of ants. Think of blue things. Think of the fun thing that happened the other day. Go watch David Armand mime the lyrics of Queen’s Don’t Stop Me Now.
There is no thought police in my head, I am free to think about something else.

 

PS I’m listening to a Norwegian podcast. For the first time since I fell ill. I can now listen to Norwegian again without feeling sad :)

As a result I’ve just started thinking about visiting that country again too. I can’t say this feeling will stay. I can’t yet claim I am in recovery. But I sure am happy and healthy, right this minute.

Learning to be well.

It’s been 4 weeks now since I figured out my ME. I’ve been recovering ever since. My activity level compared to a healthy person soared up to 70%.
I’ve been doing stuff!

The last two weeks I had several knitters over for day long visits. I baked cakes for them and cleaned the house and had gone out and bought gifts and did the groceries and returned to the store the same day to pick up something else I needed. I showered.
It was amazing!
Last Friday I topped it with a visit of my own: I took a 2,5 hours train ride to a knitters’ house. Stayed there all day at the wool party and then took the train back.

That was a bit too much for me and my body.
At the end of the party I burst out in tears because I was too tired. I was much embarrassed because tears did nót fit the mood at that party. Luckily they know me and my condition and knew it was my body crying, not me.
But I still had to travel back to home, cradling my overwhelmed body and exhausted mind. We did it, my body and me. We arrived at my home town and my husband was there to pick me up at the station. He brought me home, he had already put tooth paste on my brush, and 4 minutes after I stepped over the threshold I was in bed, asleep.

Now I’m in the recovery zone, recovering from these two weeks in which I pushed the envelope. I’m not complaining (much).
I’m amazed how well I spring back from all the tiring things. Even with the collapse in Friday -which wasn’t a crash so well done, team me!- I managed to drive to the cabin by myself on Sunday. And I’ve been busy here. Doing laundry and cooking yesterday, both on the same day.
I skirted a dirty sheeps’ fleece on Sunday!

This is really weird.

So yes, lots of activity, even while recovering from two tiring weeks. My digestion is not well, with all of the cakes and wonderful stuff I ate. So it’s back to chicken soup, I made a big batch yesterday.
I have all kind of aches, my body would really like a warm bath. I’m picking up my daily walk again today, movement will help getting rid of aches and waste drifting in the blood stream.
I’m doing well with the Hydrocortisone, judging by the mad skin reaction to mosquito bites and oven burns (baking cakes) I have not suppressed my immune system.

The most wonderful thing about all this is that I actually have to LEARN to be well again.
First thing was imagining how it is to be well. I had not done so in many years. Not that I was lamenting in all the things I could not do all the time. Comparing what I wanted to do to what I actually could do was just not something that took up residence in my mind. There was the regular disappointment when I had to decline an invitation, again, or back out of engagements. Those were times of hot tears.
But hot tears dry quickly. I never laid around for long, pining for the time when I used to be able to do alllllll these things and now I can’t and boohoo.

Now I do. Now I’m mentally exploring what a healthy person can do in a day. What I can do, soon. What I would like to do. What would I like to do?
What now, will make me sing and cheer and jump out of bed and start the day eagerly?
It’s a freeing line of thoughts to follow.

(Again I’ve stumbled upon an area of thought that shifts the way I see the world, making it once as big, without actually changing anything in the physical world or in my daily reality. I’m amazed at how much there is to explore in the mind’s world.)
(Other such experiences I had were:

  • when I first started to see a city/architecture as a sequence of spaces instead of masses. Spaces allow movement through them, people moving, with their eyes seeing and their bodily mass associate to the masses around them, being it architectural or human masses.
  • when I used magic mushrooms -one time only and it aroused a dangerous interest in a repeat experience which luckily I did not pursue, more by chance than by smart- and I realized my eyes do not portray the world as it is. I saw colours and shapes in ways I’d never seen before. It told me the world is more than and different from how I see it and it started thoughts about being an entity in a world but not off this world, not in the way the senses suggest. Basic philosophy stuff, but quite different when approached from an emotional perception than dry intellect, as I had done up to that moment.
  • when I finally slowed down, here in the cabin, ill, dazed. Finally stopped absorbing the news and caffeine and the urban way of life and career opportunities and getting ahead and having goals and planning my days. When a day would just float by and I’d be. Just be. Just like the cat is. Like the tree is. No stress, no plans. There’s a whole world opening up once you just “be”. And I’m of a mind that it may be the true world, the way of our planet through all its scales and subjects of science. The world all other life lives in. Ought to live in. And that humans are the odd ones out, running our monkey business because of that brain we’ve got.
  • first time turning a heel when knitting a sock. Forging a 3D shape out of plane constructions is magic. A magic you can tailor to the specifics of your body. Suddenly you are a creator and a fashion designer. Linked with all garment makers that came before, which goes back straight to the very beginning of human existence.
  • first time driving my own car on the motor way. Freedom! I could just keep on driving, I could I could. And: operating a machine to bypass the body’s limitations. It’s what we humans do. It’s what female aviators did, a hundred years ago.

Anyway… )

LEARNING TO BE WELL
Now I find I have NOT gotten more hours in a day with the more energy I’ve gained.
If anything, the process of choosing and setting priorities has become more pressing. Because there are more opportunities and options.

Luckily I’ve trained a bit for this, while being ill.
I now realize I could pour all my new found energy and time into getting my house clean, into getting a well coordinated garderobe or into knitting all the yarn I have.
It’s so easy to loose your day in chores, administration, keeping up with people, keeping up with the news and getting things done.

Instead I will have to live in a house that’s not much more tidy then it was 4 years ago nor will I have perfect garments and I will probably die, a hundred years from now, in possession of some of the same skeins of yarn I already have.

Instead there’s that one golden hour a day, right after breakfast, in which I can do the thing that matters to me most.
I have to learn to leave all the other stuff for later. And figure out what it is that matters to me most.

You already guessed it has to do with art, illustration and producing something. The weird thing is that for the past 3 days I’ve set aside that Golden Hour for just those things. But I don’t use it.
I squander my hour on stuff. The internet. Letters that need to be written. Appointments that need to be made. Laundry that needs to be done.
And I find myself at night, sitting at the edge of my bed, quickly scribbling the drawing I had planned for that day. Or any drawing.

It seems I am afraid of doing the one thing I like to do most. I excel in distracting myself. In finding excuses.
Like today. Today I wrote this post and now I need to rest up (remember the past two weeks). Surely there’s no occasion to draw today…

It probably has to do with assigning to much weight to the choice I want to make. I’m planning again. Not being. What a strange new world!

Thinking myself to sleep. Research notes.

I have a specific sleep pattern that is of no good. I sleep for 5 hours straight and then I wake up. I am wide awake. This lasts for about an hour, maybe two. Then I get back to a light sleep for another hour or two. I have had this all my life. Every night.

This is a specific pattern of insomnia. It is not cured by sleep hygiene. It wrecks havoc on the body. My current fascination is to get to the bottom of it and FIX it.

Here now follow my research notes. I need a place to keep track of my thoughts. I’m not sure this of interest to any of you… I apologize.

SLEEP is IMPORTANT.
dr. Gominak, a neurologists, found that all her patients improve when their sleep is restored. No matter what their neurological symptoms are. She thinks this has to do with specific healing that takes place in Deep Sleep and in REM sleep. For this healing Human Growth Hormone (HGH) is released and the body needs to be in perfect partial paralysis. Too much paralysis and you get sleep apneu (and rise from your deep sleep, preventing healing). Not enough paralysis and you sleep talk or get up to pee. Both patterns are not good because they prevent right paralysis and healing by HGH.

I get those first five hours of sleep. I typically wake up at 3 ‘o clock and lie awake till 5. I do get some Deep Sleep. This means I will not die from this insomnia. I know this because I have not died before. I have slept like this all my life, even as a child. But my adrenals have given out on this pattern.

MY THEORY: IT’S A CORTISOL PEAK
When I wake after five hours I experience a specific status. My mind is clear and wide awake (if not racing). My body is hot, too hot. I feel this is a cortisol peak. Cortisol has a half time of 1 hour or two. The time it takes me to settle down, cool down and get back into a slumber.

The problem is I needed this cortisol to get me out of bed in the morning, for the Awakening Response. For years my adrenals have gone the extra mile and given me a nightly cortisol peak and a secondary in the morning. Until they gave out. First partially in 2008. Now totally in 2013.
This is what makes this sleeping pattern so dangerously. Apart from the not proper healing in your sleep bit.

CLUES ABOUT THIS PARTICULAR SLEEPING PATTERN

  • My mother has this pattern too, albeit more mild. She wakes up with a soar throat. An ionisator has helped her. This machine makes dust particles in the air settle down.
  • My brother has it, as severe as I have. His adrenals seem to cope, he is nearly 40 and healthy. As long as he doesn’t hold a job that requires getting up before 8 ‘o clock.
  • I’ve found a few others on RisingPhoenix.me who have the same pattern. These people have fatigue. They knock themselves out with anti-histamines and they sleep (somewhat).
  • a few years ago I started to sleep through the night once and again. Co-factors are: destressing, clean bed sheets, valerian, anti-dustmite, earplugs, no cat shananigans in the night, no drinking after 7 o clock in the evening, enough progesterone, no insuline or cortisol peak during the day, no gluten, no cheese, woolen bed and blankets, keeping throat warm, feeling safe. But these give no guarantees whatsoever, it’s a tombola every night.
  • things that didn’t work were: eating before bed, camomille tea, dark room, whale sounds, different bed times, segmented sleep, no tv/screen, use room for only sleep, melatonine, age, location

THEORY: SOMETHING UPSETS THE SYSTEM AFTER FIVE HOURS OF SLEEP. ENOUGH TO MAKE IT PRODUCE CORTISOL, THE ANTI-STRESSHORMONE.

What causes the system to freak out? Can I prevent it?

ALLERGY
Since anti-histamines and dustmites came up I’m wrapping my brain around this first. Here now follows the research I already did. It’s my thought process, it may not be very interesting for anyone else… In cursive are quotes from Wikipedia. In bold thoughts I want to park and get back to at a later time.

ANTIHISTAMINE
A histamine antagonist (commonly called an antihistamine) is a pharmaceutical drug that inhibits the action of histamine by either blocking its attachment to histamine receptors, or inhibiting the enzymatic activity of histidine decarboxylase; catalyzing the transformation of histidine into histamine (atypical antihistaminics). It is commonly used for the relief of allergies caused by intolerance of proteins.

Antihistamine mainly blocks the mucus reaction that cells give, which reaction leads to the annoying allergy symptoms of sneezing and loosing water from all sides of the head.
This is a symptom-approach. I’m more interested in the cause of the allergic reaction and dampening that response.

What now if you don’t produce mucus and sneezing but do reach the stage right before that, where you do get the freaking but not the sneezing? That would make a body make cortisol, I’d think. So: how does the arousal of the allergy initiate?

Key: intolerance of certain proteins. (intolerance to other things too? Dustparticles? )

There are four kinds of Histamine-receptors, see Wiki. They have various functions some of which are interesting to someone looking for sleep.
H1 for example also modulates circadian rythm (!)
And H2 is a system-activator, just like cortisol.

Btw H1 couples via its G mechanism to Vassopressin, het gotta-pee-repressing hormone.

HOW DO RECEPTORS WORK ANYWAY?
A receptor sits in the cel membrane. With its head outside and its feet dangling on the inside of the cel. A primary messenger bonks into the head, this usually is a hormone. This makes the lights go on in a parking garage called G protein that’s located at the feet of the receptor molecule, on the inside of the cell. One of the cars gets a tank full GTP, the alfa no less! This car leaves the parking garage and drives along the inside of the membrane until it bonks into the soft belly of a protein, the primary effector.
It’s this protein that starts to produce molecules that will influence the cells functioning: the secondary messengers.

This system is called the Second Messenger System and it shows exactly where the various G proteins are that various anti-histamine medicines target.

Secondary messengers can influence the cell insides directly or first activate a secondary effector in the cell membrane.
The alfa-car, a little enzyme in itself, has used up its petrol. All GTP is decreased into GDP. It drifts back to a parking garage at the feet of a receptor cell.

Sometimes this system doesn’t work. The head, the feet, the Parking garage, the car, all and any can malfunction.

pic by Erik Hutters

MALFUNCTION OF THE RECEPTOR/G-protein CELL
“Malfunction of GPCR [G Protein-Coupled Receptor] signaling pathways are involved in many diseases, such as diabetes, blindness, allergies, depression, cardiovascular defects, and certain forms of cancer. It is estimated that about 30% of the modern drugs’ cellular targets are GPCRs.”

The human genome encodes roughly 800 G protein-coupled receptors, which detect photons (light), hormones, growth factors, drugs, and other endogenous ligands. Approximately 150 of the GPCRs found in the human genome have unknown functions.

There are about 800 kind of receptors. They use all kinds of things to bonk themselves with in the head (neurotransmitters, hormones, food additives, cocaine, GABA, Calcium ions). Things going wrong leads to all kinds of system wide illnesses such as diabetes, allergies, depression, cancer.

HORMONES ARE NEUROTRANSMITTERS
The hormone ACTH is the neurotransmitter that floods the whole body and is picked up specifically by the receptors in the adrenal cells. Through the Second Messenger System mentioned above, it activates these cells to produce cortisol. http://en.wikipedia.org/wiki/CAMP-dependent_pathway
Another hormone, Glucagon, is picked up by receptors in the liver and activates glycogen breakdown
Another hormone, ADH vassopressin, makes blood vessels contract, ignoring your pee pressure. (Supposed to be high during the night. If you wake up to pee it isn’t)(perhaps it’s high all day in me?)

So Hormone Replace Therapy (HRT) is basically neurotransmitter therapy. Bonking around the heads of 800 kind of receptors in your body. Better be careful what kind of neurotransmitters you put in there.

This includes vitD3 which is a hormone and not a vitamin. All hormones are made from cholesterol so does supplementing leave you with high cholesterol?

LAYING AWAKE BECAUSE OF CORTISOL
ACTH is produced, adrenal cells make cortisol, I wake up. Because the system downstream gives the right results I can assume the adrenal cels work properly (the receptor receives ACTH, the alfa car drives, the cortisol is made). Looking in that place for a cause of my cortisol peak seems not logical right now.
The production of cortisol by a cell could be inhibited my crippling the G protein with a particular anti histamine however. Effective. But not solving the cause.

LOOKING AT ACTH PRODUCTION.
It’s the anterior pituitary gland in my head that produces the hormone ACTH. I can therefor conclude I have not primaire Addison’s. The gland functions.
The pituitary gland does so in response to the hormone corticotropin-releasing hormone (CRH) released by the hypothalamus, another piece of brain.
Gaat pituitary gland op eigen houtje aan de acth produktie of is het i o v de hypothalamus?

There’s a lot involved in regulating the levels of ACTH. There are feedback loops coming from the adrenals themselves, for instance. These feedback come in fast loops and in slow loops.

In order to regulate the secretion of ACTH, many substances secreted within this axis exhibit slow/intermediate and fast feedback-loop activity. Glucocorticoids secreted from the adrenal cortex work to inhibit CRH secretion by the hypothalamus, which in turn decreases anterior pituitary secretion of ACTH. Glucocorticoids may also inhibit the rates of POMC gene transcription and peptide synthesis. The latter is an example of a slow feedback loop, which works on the order of hours to days, whereas the former works on the order of minutes.
(The half-life of ACTH in human blood is about ten minutes.)

“Hours to days”!?
Might these slow loop feedbacks be connected in any way to the circadian rythme or sleep cycles? Can there be something awry in the slow loop feed back making me release cortisol in the middle of the night?

There are ACTH receptors outside of the adrenal glands. They are in the bone producing cells.
Also: ACTH is a cleavage product of the pro-hormone, proopiomelanocortin, which also produces other hormones including melatonin.

Can inappropiately timed ACTH rob the body of the pro-hormone needed to make the sleep hormone melatonin?

Of course, a real elevated production of ACTH is the illness Cushing. I don’t have that. But the knowledge about Cushing disease might shed a light on these nightly cortisol peaks.
Also, the ACTH producing enzyme in the pituitary may be of the same sort as my busted MRT: a brake that slips. The gene to check for mutations might be POMC.

pic by andre leme

HYPOTHALAMUS AND ITS CRH
Pituitary gland takes its cue from the Hypothalamus. The hypothalamus is the grand concert director in your head. It oversees all kinds of information coming in, both from the inside and the outside of the body. It sends out all kinds of signals to make various body parts do things.

Because of the hypothalamus people can influence and calm their adrenals by practizing mental zen and active destressing and behavourial therapy and (re)training the Central Nervous System.
But the hypothalamus also reacts to:
– Neurally transmitted information arising in particular from the heart, the stomach, and the reproductive tract
– Autonomic inputs
– Blood-borne stimuli, including leptin, ghrelin, angiotensin, insulin, pituitary hormones, cytokines, plasma concentrations of glucose and osmolarity etc.

Is it one of these that triggers my system after 5 hours of sleep?

Well, this concludes the thinking I’ve done when lying awake last night and two hours of reading this morning. I will look into the bold sections.

The main question still is: WHAT CAUSES THE SYSTEM TO FREAK OUT AFTER FIVE HOURS OF SLEEP?
Other questions to ask about this are:
What happens to the body in those 5 hours? Do the glucose reserves in the liver get depleted? Have all the toxins build up during sleep healing and not find a way out (due to genetic mutations)? Has our food digested by that time and is energy not properly stored away, causing blood sugar to spike? Has all the progesterone gone, crippling basis processes?

 pic by John Evans

My health: strategy for my low cortisol

written a week ago:

CORTISOL LEVELS WERE MEASURED REALLY LOW
I had a good think about that ridiculously low cortisol level that was measured the other day: 0,3 in the morning where a value between 25 and 60 is normal.

This tells me that on that particular morning my adrenals were not functioning at a sufficient level. However, I did manage to get out of bed, drive myself to the hospital, walk through the cold and get myself to the right department and seen to. So some cortisol was clearly still there, I was not in danger of adrenal shock. I don’t think I functioned on adrenaline or willpower alone, I certainly wasn’t pushing things or in a fighting mood.

However, there were a few problems that morning indicating insufficient cortisol. I did drive at 85% of my usual alertness (but as I am a perfectionist who usually operates at 115% and also have my motor bike license -which makes you a better spotter in traffic- I feel I was not a danger on the road). I was bothered by the cold very much, a known body stressor. I had trouble operating the machine where you present your hospital ID (hello brain fog) and my hands trembled when I spoke to the nurse (a sign my body was nervous and lacked the hormones to battle that).

So I’m not sure how to interpret the level totally correct.

The measured level however indicates my adrenals have now shut down completely. There’s a good case to be made for that theory:

WORKING THEORY
My adrenals have shut down (almost) completely, since end of August.

Looking back I’d say this happened at the end of August. And stress was the cause, not the low supplementation of hydrocortisone.
My stressors were:

  1. the death of my grandmother in the Spring
  2. supplementing Zinc and inducing Copper dumps during the Summer
  3. a non-relaxed holiday to Ireland at the end of August. Bad sleep and digestion shut down.
  4. a blow to the kidneys in mid September: too much weird food + dehydration
  5. ongoing kidney- and liver pain ever since, nausea (organ malnutrition as a result)
  6. worries about a trip to Morocco we were to take last week

nr 3, the holiday to Ireland was just too much. Afterwards I couldn’t get my digestion working well enough, I couldn’t refind my tranquility. In short: recuperation took too long and was too costly. Then nr.4 happened and my belly hasn’t been functioning properly for months now. Pains and pangs, uncomfortable feeling and nausea all the time. Looking back these are symptoms of too low cortisol levels, especially now that the ultrasound and the bloodwork do not show other causes. No cortisol means no stomach acid, no bile, no motility.

Lack of cortisol also explains why on occasion I’d fall into a deep, peaceful sleep whenever I took my regular dose of  hydrocortisone. Normally this hormone would activate a body. But with shut down adrenals it would just quell a screeching lack, thus providing peace. Peace enough to sleep. I was so surprised as it was the same sleepiness you get with progesterone overdosing. You cannot fight it, you just want to sleeeeep. But with progesterone you awake groggy. With this cortisol sleep I awoke fine. Rested (just unwilling to leave the bed).

Like I said, I think stressors caused the shut down, not the cortisol I’ve been supplementing regularly for over a year now. As I supplement only 12,5 mg of hydrocortisone per day I don’t think the hormone therapy caused the shut down. The amount quoted in literature is at least 20 mg. I’ve been supplementing this lower amount since August 2012 and from that date on I was notably getting healthier and more active by the month. It is why I started to drive my car. It is why I felt confident enough to detox with the Zinc and the genome results.

A normal dose for someone with shut down adrenals is 20 mg or more. Or the other way around: doctors report people’s adrenals shutting down when doses of 20 mg or more are administered.

Shut down adrenals do explain why I needed absurd high amounts of progesterone the last two months. My body was scrambling for any and all progesterone to convert into cortisol. Indicating some level of function in the adrenals, btw.

THINGS THAT DON’T FIT NEATLY IN THIS THEORY:

  1. When that low level was measured I still functioned at an acceptable level
  2. at night I still often wake up with a cortisol peak, 8 hours after my last hydrocortisone dose which has been totally gone from my system by then.
  3. Four weeks ago I got a cold. The first one since I fell ill in 2008. A cold indicates that my immune system was too weak to keep it at bay. Usually immune systems get suppressed by cortisol which is why stressed people (with healthy adrenals) get every virus during flu season. How could I get a cold when my immune system is running wild and unchecked for years now?
  4. I am sensitive to low doses of anything. It may well be that 12,5 mg is enough for my adrenals to shut down.

We can think of reasons that make these things fit the theory anyway.

  1. I got to the hospital fine? I must be able to function at lower levels than other people. I sure do so with other hormones and medications. Or adrenaline makes the system go without causing its usual jumpy state.
  2. I wake up? My adrenals work sometimes, especially at night when blood sugar drops or I get too cold or dust allergy kicks in or insulin surge from the previous day catches up with me.
  3. I get a cold? My number was up, this was probably a particular persistent virus. I finally met a peron carrying a virus, haven’t met one for years which is the real reason I haven’t had a cold or the flu/ Or an alternative: the trip to Morocco had me so stressed out that I did make more cortisol and with that suppressed my immune system enough to contract the cold. I sure was worrying about it and determined to get it done. Got my fighting modus on. The funny thing was that once I conceded that I was not to go on the trip I took to bed and fell asleep, I developed a high fever and broke the cold in the next 18 hours. After that I had to lay a week in bed to recover. And another two weeks to recover properly. I am now back in the cabin and just today and yesterday I’ve felt alive again. Active. But this can also come from not being in the city. I am more charged in the city. And in need of more cortisol there.

 

CONCLUSIONS

At the moment my adrenals are not functioning. Supplementation is needed. More than 12,5 mg. At least enough to get my intestines working again properly. Aim for 17,5 mg. Digestion is a measuring stick. Getting hungry indicates I took too much.

Higher supplementation will shut down the adrenals for sure. Or keep them shut down. This brings risk, life threatening risks. I am aware of this.

Shut down adrenals an sich is not a problem. There’s a school of thought in medicine that thinks that a short amount of time will give the adrenals a chance to heal.

This will be my working theory. It can be amended when results contradict.

 

STRATEGY

Have shut down adrenals for the next few months. Aid them with enough hydrocortisone to keep my body out of stress and to have digestion functioning again.

Enjoy the peace. Rest up. Relax. Enjoy life. Don’t worry, don’t fret. Take plenty progesterone.

Be aware of the life threatening dangers. Inform loved ones. Always carry hydrocortisone on your body.

In February/March slowly wean off of the hydrocortisone. See if the adrenals kick in again.

If they do so: YAY!

If they don’t: visit the Adrenal Specialists in Radboud to become an official Addison’s patient and explore with them if it’s the adrenals or one of the brain glands that’s kapot.

 

ANOTHER PUZZLING BLOOD RESULT

Homocysteine was below 6. This is lower than you would expect under my working theory that my DNA mutations cause too high homocysteine. Has my supplemention of mB12 and Florinic Acid corrected my levels in only 3 months? Or is this a heterozygote mutation and did the incorrect gene never express?

things to think about next.

My Health: strategies for high cholesterol

My cholesterol is high. Total 7,4; LDL 5,5 and HDL 1,3

The body produces cholesterol for a number of things, with good reason. Hormones are made from cholesterol. Cholesterol transports stuffs from and to organs for repairs. Cholesterol is like White Van Men on the motorway.

pic by Sindy Daruka

Unfortunately so is their driving skills… Especially LDL is a kind of cholesterol that tends to bump into walls and have deplorable engines. They break down and their carcasses stick to the walls of arteries, clogging them up. HDL tries to suck up this debris whenever it passes it, but you don’t have much of those driving around.

Ideally you have about one DHL van for every four LDL. But most people do not have an ideal body. I have one DHL van for nearly every six LDL plonker and that’s only because my HDL level is fairly good.

I’d like to better those odds. To do this I’ve gathered some snippets of cholesterol information:

DIET
Only about 20-40% of your cholesterol levels are dependent from what you eat. And the fat or protein you eat has zero influence on it. It is the carbohydrates, the sugar. Because insulin is a trigger for LDL. You see, sugar in your blood is such a poison that your body brings out the big guns, insulin, to get rid of it ASAP. Don’t care where it goes, just get it out of the blood!
Here, stuff it into cells, pronto! Convert it to fat because that way we can stuff more sugar into a cell. There, stuff it into LDL. They may be faulty vans but at least it will get the poison sugar moving away from the scene. Move!

pic by Debbie Schiel

Cholesterol wouldn’t be a problem at all if it wasn’t for the sticking-to-artery-walls and breaking down those dumb LDL vans do. This is plaque. It also contains salts and calcium. This plague gets stiff, making the arteries stiff. With clogged up, stiff arteries comes great risk. Some plague may crumble and tumble down the artery until it hits a bottle neck (caused by other plague or by the artery becoming very small like in your brain). Your little plague boulder stems the blood flow. But your heart doesn’t stop pumping. Pressure rises. The artery may rupture…

Another thing about cholesterol: it is retained in bile. This bile moves through the intestines and is soaked up again, together with the cholesterol it contains. This way the body reuses it instead of going through the costly process of making it from scratch.

CAUSES of my high overall cholesterol are:
– my body is trying to repair itself. It has plenty of reasons, it’s been damaged for ages now, what with the hormonal imbalances, stress reactions, gluten problems and adrenal fatigue.
– my supplementing hormones which may leave my own cholesterol somewhat unused?
– low bile production and the long time it spends in the intestines, giving them plenty of time to soak up the bile again, with its cholesterol.

From this come some STRATEGIES for me to live healthy with my cholesterol:
– relax my body as much as possible. Support and soothe it at its current level of health so it doesn’t feel the need to repair so much.
– move the body more. 30 minutes a day. This will keep things flowing better. Facilitates repairs and enzyme conversions. And hormone conversions. Helps eliminate waste products. Might help avoid artery plagues or stiff walls?
– avoid all insulin surges. Have chocolate? go walk. Or vice versa.
– keep bile flowing, preferably all the way to the exit. Bile is correlated to acidity of the stomach so keep that acid. Drink vinegar, lemon juice. Eat stuffs that make you poop.

ADDITIONAL STRATEGIES for other people include:
– keep your blood pressure low. Both by low intake of salt and a mellow approach to life and to white van men driving skills in particular.
– stay away from bad fats: the ones in hardened plat fats, fast food, burned fried stuffs. Yes, that’s cookies, fries, margarine and charred BBQ’s. Instead use full fat butter, cream and steamers.

And we could always sponsor the industry and take pills to lower cholesterol. But you’ll be working against your body because it has actual reasons to want to up your cholesterol. Taking pills won’t take away the causes. But it does prevent rupturing arteries and that’s a good thing.

pic by Josh Klute

Or…. rethink the whole cholesterol thing….

Here’s a post from Peter from Hyperlipid. He refers to a study that looked at how ‘sugary’ blood people had over the last couple of months. Then they invited them back six years laters, to see how many had died. Turned out that on average 4 people had died from the 100people invited. Except those with high bloodsugar, they had 19 dead.

The women had 2 deaths normally. But the sugarlovers had 25 dead. Mostly from hearth diseases.

There was no, I repeat NO, difference in the cholesterol levels of both groups. Only and purely to their insulin lifestyle.

Sugar is poison. Including nicely wrapped sugars such as toast, jam, bread, rice, fruit, juice, sweets and cakes.

Here he refers to another study, where Norwegian doctors did angiograms of people with extremely low LDL. They too were at risk for heart disease! The doctors then took a look at what might cause it, if not cholesterol.

Doc says: go pee!

Well, no gruesome lumpy news from my docter this morning! My liver and gallbladder look fine and blood results indicate they work just fine.
My kidneys are being weird however. One has an “angiomypolygoom” (phonetic doctorspeak) which is a cluster of blood vessels and is called a “storks bite” when it presents on the outer skins of babies. Nothing serious.

Nothing serious, just a Stork giggle

pic by Turkkan35

What ís serious though, is that my kidney swells up whenever my bladder does. This is not good. Not good at all.

I have not found the medical term yet but doc says I NEED TO PEE MORE OFTEN. Really.

Great.

How do I go about that? erm….

  1. whenever I think of drinking, make a cup of tea
  2. whenever I pass the toilet, go pee
  3. throw something colourful in the middle of the room, whenever I see it, go pee.

I am going to try to pee every hour I think.

pic by Alan Witikoski

My doctor explains things weird. “Cholesterol is a bunch of buses running through your veins.” LDL-busses break down all the time, spilling their passengers and clogging the roads with their bus-carcasses. Good cholesterol busses don’t break down. And leave no passengers stranded.

I have high cholesterol, both LDL and HDL. Which makes the ratio ok. I could take pills, he said. Or I could nót take up smoking. And don’t get Diabetes. I had to promise. “Promise me you won’t put sugar in the tank of your buses!”

HAHAHA! Cackle! Cackle! Cackle!

pic by Andreas Krappweis

My higher intake of Zinc and vit D over the last 6 months has now put me into the right zone. Result! I can lower the Zinc somewhat. I had already noticed I no longer have Copper toxicity symptoms. Much. It was a tiresome Summer, getting the Zinc up but now I can go down to maintenance doses. Yay!

Then there was the cortisol blood level. Measured at 8 in the morning, before I took pills or food.

Value came back as 0,3

yeah…. I did notice I trembled a bit…

normal value is 25 to 60

yeah…

pic by Luka Rister

I am going to thing about that one for a bit.  Cause. Consequences. Strategy.

We finished the consultation with a small lecture about the lining of the belly. This is a most interesting organ. It reacts to whatever upsets one of the organs. It moves in, it migrates towards the upset place. For example, it might encapsulate an inflamed appendix, trying to fix it. And it does fix it (if the inflammation doesn’t kill you first).

I have a bit of fluid in “the cellar” of the abdominal lining. Indicating one of the organs in my belly was upset. But not enough to get a major reaction from the lining. Something as “small” as an egg bursting free (ovulation) might cause that small puddle. Not to worry.

Then we talked about linear medicine and medicine that addresses levels of functioning health. Linear is when you fall, you break something, you get a cast, you heal. The other has to do with levels of health. When you function at a subnormal level, as I do, the body still is in harmony. It has found some sort of balancing act to keep everything going, albeit on a lower then desirable level. This balancing act does have a price.  This will probably cause you to stay at this level for a long time or taper off to a lower level. You never jump upwards to a higher level.

Health professionals who address this kind of medicine contemplate nudging your body out of its balancing act to initiate it to take up balancing at a higher level. To enable this higher level, the body needs some help or supplementing of what it is missing. And a solid nudge to break its habit of functioning at the lower level.

He thought an osteopath might do me some good, help my intestines to get to a higher level of functioning. I’ll think about that too. For now I think that I can also get some enabling impulses from taking my rests dutifully and reconsider some foodstuffs.

pic by Cécile Graat

Now I’m home and I just send a thank you note to the professionals at the hospital who took my blood samples last Wednesday morning. When I presented at the counter I confessed to being a “spesiul snowflake” with low cortisol and that’s why I’m shaking and crying. They didn’t laugh or rolled their eyes, they just took care of me. Put me into the separate, soothing room with animals and animations on the walls. I was as stressfree as possible and very grateful not to be thought a nuisance.

With cortisol at 0,3 instead of 25-60 I was a trembling spesiul snowflake indeed…

pic by Carlo Winkelmann

Now I want to go and ink. I made some pencil drawings over tea this morning. But I am a good little snowflake and will take my rest instead. Passing toilet, going pee.

Ain’t this grand, I have a cold!

The sniffles. A snotneus. Inflamed throat. Just the common cold.

Haven’t gotten one for years, what with my immune system all in harms through lack of soothing cortisol levels. Used to get them all the time before I got Adrenal Fatigue.

Now I’m even more confused than usual about how to get through a day healthily.

My body clearly is under extra stress now so I should take more hydrocortisone, right? But more cortisol will dampen the imune system more, crippling its ability to fight this cold. The third side of the coin is that I am under extra stress to be in optimum health PRONTO because we’ve planned a family trip and I’m not well enough, even without the cold.

I feel stupid. Because there’s no clear strategy to be decided upon. And the more I stress the more vulnerable I get.

In the mean time I’ve been waken up from bodily stress after only 3 hours of sleep for five nights in a row now. (normally I get five with perhaps another two hours later in the night). Going that long on that few hours of sleep isn’t good. And it impairs my thinking even more.

One thing it does make clear is that I need that cortisol. I now take it at night, when I wake up in that fit of sweat, coughs and sniffles. It takes two hours for my body to calm down, I aid it with progesteron and hydrocortison because the first few nights taught me that without it my body will not calm down. Or have intestine motility.

It’s a strange experience to get to a calm place by taking hydrocortisone… An activating hormone. Calm enough to perhaps doze off for another hour when morning comes. Calm enough to tend to other bodily functions such as digestion. Relaxed muscles.

But is it a calm from rescuing the body from a shortage of cortisol or a calm from oppressing the imune system andthusly disabling the fight it needs to fight?

I really am without a clue.

On the Way.

The past ten days I started feeling better. I am now confident to say: this thing is working. The Copper shedding is getting less, the symptoms are getting less. I have more energy but less of the high-pitched maniacal sort.


pic by David Ritter

I am hoping the robust health I’ve already achieved underneath the CFS-like symtoms the Copper induces will start shining trough now.

I can have larger doses of the Zinc now, up to 15 mg per day. Essential is that I have some Methyl-B12 and folinic acid with every meal. And vit.D3 to get the day started. And Progesteron cream to aid the Methylation Cycle, not just to balance my hormones.

With the folinic acid I noticed my body has an active craving for it, as soon as I hold the pill in my hand. It took a while for me to decide if this is the legitimate feeling of “want that! need that!” or the more addictional craving like “want that! WANT that!“.
The last one should not be fed. Each and every food or substance that induces that feeling inside me is bad for the system: sugar, rancid oils in chips/crisps, E261, fast food, food additives, drugs and nicotine (I presume)


pic by Alison Taylor

It is a wonderous feeling, to have your body actively indicating it wants something badly. I had it with the food supplement Lithium, years ago. I have it with Demeter products such as full cream butter versus commercial foods. I have it with unpasteurized cheese (“Boerenkaas”) versus most cheeses available at the shops. I have it with the one sunsoaked blackberry in the hedge versus the little waterballoons sold at the shops. But that last one is probably dictated by my mind, with me being in the field with the bees and the dragon flies and all that.
The other ones can be checked with a double blind experiment. And they have.

pic by Enrica Bressan

Other substances that my body needs do not give that reaction. The progesteron cream for example. As soon as I apply it my body relaxed. But up front, without touching it, there’s no indication it benefits from it. Weird.

Anyway. The Folinic acid.
I checked online what other people take as doses. I checked only with people who have the same DNA mutations as I do.
They vary from 800 mcg to 3,2 mg to temporarily doses of 7,5 mcg.
Up untill now I was careful not to exceed 1,2 mg but now I will up the doses to (not more than) 3,2 mg. In small nibbles through the day, whenever my body needs it to process food. It’s half time is six hours so that’s breakfast, brunch, late lunch and (small) supper at 16 hour. Brunch being the main meal and meals getting smaller after that. No meal bigger in volume than one fist. To stop insuline from happening.


A volume bigger than this will trigger insuline, even if it’s just a sugarfree salade.

My research was on the forums of 23andme.com and on the forums of ME site of forums.phoenixrising.me
Here are the people who find their way through the same wild lands of pioneering medicine as I am.

As I felt a bit better I did two things: I took a week long holiday in Ireland and I drove 500 km in my own car on a Summersday.


pic by Alan Witikoski awitikoski

The holiday was nice but an attack on the system. My bile stopped flowing (I have no idea why) so I had minimal uptake of nutriënts and minimal shedding of toxins for ten days. Only four days after returning to the cabin my bowelmovements started to look nice and dark again and my body felt better.
During the holiday, my hydrocortison kept me going. Which is a risky means to an end.

There were lovely moments in Ireland, staying with my aunt in a cabin of her own. Us having meals together at the table, with real crockery, the lovely chatting,  us laughing at her chickens. It was great!

pic by Michael & Christa Richert

Once home I was on my own again at my cabin, still on a high from the travelling. It is evigorating, don’t you find? Being part of the global community. Looking at other parts of the world, renewing your eyes for your own part.

That’s in part why I grabbed my car and made a big tour through the Netherlands. I went to all the provinces in the North. I had my car equipped with supplies: salted water; gingerbuttercake; a few grapes; lavendel oil; a lazy chair and crochet projects and a book and a sketch book to have rests whenever I felt like it.
It felt great! Being on the road, going wherever I wanted to go, seeing landscapes change, see other people driving and being free. Wasting petrol because sometimes you can just go and waste petrol because you LIVE.

I saw a stork on a lamp post. I felt such freedom and independence. I still do.

 

 

Now I am back home again, in the cabin. And, with my somewhat clearer mind, I have started working again, on one of my five jobs: designer. Or illustrator, to be more precise. I’ll show you if I got some actual things. Right now it’s in that precious state of nursing and not talking too much about it lest it withers before it came alive.

pic by Jean-Paul Brouard