Fixed the slow colon/ constipation.

So I fixed my slow transit colon and I now regularly use the toilet and deposit healthy, softish, stools in the round porcelain vault.

My clue was this: a scientific case where Crohn’s disease was healed by restoring the balance between gut neurotransmitters Dopamine and Serotonine.

In Crohn, it was assumed and proven in this case, there’s too much serotonin and not enough dopamine. Serotonine speeds up gut motility. By comparison I assume dopamine slows it down and this echoos my experience as a high dopamine person.

This is the scientific study: Amino acid-responsive Crohn’s disease: a case study. A patient of 22 years was healed just by taking in precursors to both dopamine and serotonin in a good ratio.

I mentioned this to my GP and he said that a regular side effect of Anti-depressants is loose stools. AD enhance the levels of serotonine. Serotonine is produced and used in the gut, for about 90-99,9 % of the bodily production.

So I set out to up my levels of gut-serotonin. For this I now take 5-HTP, a plant and precursor of serotonin. Currently I’m taking about 100 mg twice a day. I also stopped eating any and all fibres since I think my case of constipation is definitely not helped by adding fibre to hold the water. I’m better helped with relieving the digestive system of as many burdens as possible. No fibres, no vegetables, no raw foods, no nuts, no tomato skins et cetera.

I also apply the tummy massages I outlined in my previous post, both for the colon and for the Hepatic Flexure. And do the kettlebelling now and again.

I squeeze out lemons and drink the juice. (Acid stomach = better bile? Lemon juice relaxes the gut muscles? The increased salivation is important?  I know there’s a link between adequate saliva production and adequate adrenal function/stress resilience… I don’t know, it just feels good. I can’t say yet what is important in the palette of solutions I’m trying right now. Fresh lemons do seem important. Store bought lemon juice didn’t do the same for me.) I also take 1000 mg vit C. Sometimes twice.

Lastly I only eat proteins twice a day. I don’t eat any more after half past three in the afternoon. I believe the gut -or my gut at least- fares better with rests and pauzes. Not the constant bombardment of food morsels that the five-meals-a-day-brigade advises.

Those five meals a day are meant to keep your blood sugar level. I know other ways of doing that (see dr. Bernstein: eat nothing that triggers insuline nor any volume bigger than your stomach/fist. Or do a ketonic diet (but at the moment I’m enjoying my slices of white bread with lots of butter and just a hint of ginger jam too much)).

My gut has relaxed.

Suddenly my guts all fit into my pelvic bones. Everything is neatly folded up there. No bloating. I stand taller. Find it easier to sit up straight.

I have more energy.

I’m not sleeping through the night yet. But bodily stress has lessened. I have been sleeping 5 or 6 hours instead of 4,5. When I wake my guts want to move. I think they do not move while I’m asleep, it seems like they are waiting for me to wake. Or they are waking me. I need to do the laying on my right side to assist the Hepatic Flexure. It works. I can hear stuff moving and gurgling. I pass a bit of gas.

I have more energy.

However. The upped serotonine makes MAO A and MAO B work harder. This siphons away Dopamine. I have noticed that my ability to concentrate diminishes on days of high 5-HTP supplementation.

So I’ve taken a new supplement to up my dopamine while I do this experiment with serotonin. This supplement is called Methylphenidate, better knows as Ritalin. Ritalin causes the brain to produce more dopamine. I take 2,5 mg twice per day. Dosage for ADHD is usually 40 mg per day.

I had a big booboo with the doctor about wanting to try ritalin in this context. It’s a new GP, my trusted GP has stopped his practice to focus on orthomolecular science, specializing in the Methylation Cycle (!!!).

The new one didn’t understand one jota of what I was saying. Didn’t try either. All he saw was “a depressed housewife, looking for some happy pills”.  He thought I was on way too many supplements (didn’t bother to notice how low and tailored my dosages are). He suggested I exercise to battle depression. I’m not depressed. I already exercise. Fuck off.

I tried to steer the conversation into engineering territory, explaining how I approached this black box of a disease. How I had figured things out. How I had devised trials, to get more data. I mentioned Methylation Cycle and how messed up mine is due to faulty vitD and vit B12 receptors (I oversimplified things to get a common point of reference).

I asked him if he was familiar with the Methylation Cycle in the mitochondria, as part of the Citric Acid Cycle

All he heard was “Methylalalallablabla” and he proceeded on a rant about how way too many people take Methylphenidate and no one in Spain is taking it and here in the Netherlands everybody and their mum is shovelling pills, all because we want to keep up with Instagram and Facebook and things.

Yeah. It does have the same word in it, “methyl”. But I don’t think it means what you think it means.

So we parted. He did give me a prescription for Ritalin. He was reinforced in his idea that women my age are just sorry people looking for a quick fix. He never got to see beyond his blinders and see that in fact there was a smart engineer sitting opposite him, one with an interesting experience and an open approach to both life and health. Someone who he could have an interesting conversation with about healing and medicine.

Perhaps I’m a depressed housewife too, just like he assumes, I can’t say because I’m living my life from the inside out and have blinders of my own, but I know for a fact I’m also that smart engineer and he never knew.

The ritalin works. But it’s a crude dosage. I easily get hyper. It’s a nice feeling, for sure. I feel alive and productive and I want to dance and run. I do dance and run and try to change gears afterwards and rest (do that stomach massage while I’m resting).

I even started fitness. Powerlifting! Starting very slowly. I’ve been doing Fit20 since March and my core muscles have been build up precisely and with attention. Now I’ve joined a generic gym and do some cardio as warm up and cool down. In between I work on 7 or 8 machines, working on muscles and strength. It’s lovely! Endorphines ahoy! Lyn White from Reverse Therapy would cheer, I’m sure.

In a few weeks I’ll go work with the loose weights, barbells and such. Squat, Push up, Pull up, that sort of thing. It’s something I’ve always planned: weight lifting once I hit 40.

I couldn’t when I hit 40, I was too ill and weak. Now I’m 45 and I’ve started. Thanks to adequate cortisol replacement and now relaxed gut yielding more energy.

Still, I’ll be fine tuning the ritalin-dosage. 2,5 mg is too much in one go, I get too hyper. It’s the same kind of hyper I feel when I eat something fried in vegetable oil. It’s some sort of feverish greed. It feels as hippetyhop as having a little caffeine but with caffein I just get very chatty and fast-brained. With ritalin/vegetable oil I also get a feverish glance in my eye (and brain).

Estrogen-hype is different yet again. There it’s more Popeye-bam!bam! Rosie the Riveter. And lots of energy. I suppose its testosteron related. Of which I scored very low at the last blood tests by the way. I now have a DHEA supplement which converts into estrogen and testosteron, courtesy of your own body to chose how much of which. I do need more testosteron because I need to build up muscle. It’s a weird sensation to work my muscles in the gym but not have the building blocks to actually build them. Strange indeed.

For all HRT it’s: go low, go slow. So I’m just taking a little dab of DHEA every few days. In a few weeks there’s a whole battery of blood tests again. Before that I am to meet my new GP, a woman. I’ve prepared an introduction to my case. I won’t be hood winked by a biased GP again. I hope.

In the mean time: colon is happy! I am happy.

There’s more amplitude between activity and rest. The ritalin is a bit too high at the moment, I’m adjusting dosage. But it’s not so high that I get dopamine-excess symptoms such as head ache from tyramine rich foods (such as cheese). Although they do tend to come on sooner though but that can also be because I’ve been off tyramine for months if not years now. The system may have grown very sensitive (aka it’s not something I’m very worried about). The other day I had just a few organic corn chips for their salt content (It’s a heat wave over here! I’m very vulnerable to heat wave I found out.) The corn chips were made with olive oil (which are not the vegetable fried oils I meant earlier, those are from commercial shops and fast foods) and I got a splitting head ache afterwards. Olive oil contains tyramine. Same with Mascarpone cheese.

If I get the highs and the rests a bit more under control I’m hoping the sleep will follow too. I now -again- have come back to the notion that sleep is made during the day, just like I learned in the sleep study and the psychologist that helped me as part of that. Relaxing, mindfulness, during the day pays off at night.

I experiment with foods but most make me tired. I long very much for salad and sprouts and I eat them in small quantity. But mostly I eat a slice of white bread with lots of full fat butter (Demeter quality) and a hint of jam. Or a thick slice of white bread (artisanal bread, without sugar. Just flour, water, salt and yeast.) with four or five egg yokes on it, warmed in coconut fat. (I won’t say fried because I like to keep the yoke runny.)

I have a piece of chocolate, 75% or more cacao. But only one or two small bits in a day because I’ve noticed it kicks my adrenals and I will lie awake when chocolate was consumed.

For dinner (at 3.30 AM) I have drumsticks or a piece of steak or 150 grams of minced meat with tomato juice and spices. Or fish with creme fraiche.

I also eat pancakes, with jam or slices of apple. But only one or two a day. Instead of slice of bread or dinner. As a pick-me-up I drink decaffeinated Earl Grey tea with unwhipped cream or full fat milk.

Overall I just don’t eat that much, in volume. I do eat enough in calories, what with the butter and all. I have gained some layers of fat in the past few months. These will disappear now that I’m more active. I’m not worried.

I have found that ritalin/dopamins will keep you going and will take away the desire to eat. This can be a seductive tool in the hands of someone who’s not level headed. I know I have an addictive DNA-characteristic and I feel the appeal. Reverse Therapy keeps me grounded in what’s important. As do the physical activity. I need to go out every day, every morning, to move and to clear away the toxins and cobwebs that have accumulated in my body and mood. My body is helped by mB12 and Phosphatidylserine. I need to pay attention to clearing the junk away properly, now that I’ve kickstarted the methylation process and am egging it on with the ritalin.

So these are interesting times for me. I’m deadly afraid I’m wrecking something and for this I’m monitoring my body all the time which is not good, in terms of relax and trust (Reverse Therapy primary points). I take comfort from the knowledge of and my experience with “Go Low and Go Slow” which has always worked for me up until now. I find that I seldom burden my body beyond what it can clear away in a day. Now that the gut/colon is falling into this rhythm too I get more and more confident. Confident that I am a friend to my body.

I wish my former new GP read this. We could’ve become a team.

 

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!

One year later, a second chance.

Today it’s one year ago that we brought the cat home after she’d just been at the vets for a week and had barely survived. The long phase of recuperation was about to begin. Eventually it would take months and it was deep september when Lillepoes started to play again and lost all the grey hairs that had appeared around her nose.

For me the recuperation from that stress took at least as long. In January/February 2015 I lost all the health gain I had known since that miracle day of the 1st of May 2014 when I healed overnight from my ME because of the stress. I knew it would take months even IF I was able to get it back. Beside the cat-stress there was the court case concerning the manure facility that is planned in the field next to my cabin in the woods. For this case I had to perform “engineerily” a couple of times throughout the last year, starting on the 6th of February 2015. It was a conscious decision to do the work but I knew it was going to cost me, health wise.

It did cost me. And the grey hairs that I have grown in the course of 2015 have not gone away but I’m OK with that.

I did bounce back. Somewhere in Octobre I refound the relaxed state of being that is so important to my health. Around the 8th of December I was able to have some fun again without suffering an ME crash. By then I had learned to cook curry. I had learned to make custard from just egg yolks, heavy cream, salt, pepper and vanilla. Two dishes that support my health and that are welcome next to the endless pots of chicken soup that I make. I had written three or four reports that held up in court, that were not as incoherent as the ones I wrote in the previous years (this case has been active since 2013 I think. The final ruling is expected later this year. No idea, I think we have a 50/50 chance). And I had been living in the city for 8 weeks and felt alright which is a miracle because since 2009 I’ve not been able to stay at the city for more than 2 weeks without getting all flustered and hyper.

Later in December I started Reverse Therapy that boosted my recovery from ME tremendously. I then lost my zen again. But a session with my RT coach put it back in place again.

Late December I also did a Living Blood analysis and it was very cheerful to see the contents of the smallest drop of blood magnified and all the cells still living, moving, active as if they were still part of my body. It taught me there were not a lot of parasites wriggling about in that speck of blood. White cells looked impressive, there weren’t too much of those around either so no raging infection anywhere in the body. Red blood cells looked healthy. There were little specks of light wriggling all about and the technician said those were nutriënts. My blood was full of it! Looking good. The shape of my red blood cells indicated a shortage in vit B12 so I will pursue my cautious course of supplementing it.

This healthy LBA did make me “cheat” afterwards a bit easier on my diet. Chocolate every day! Now, 4 weeks later, I’ve gravitated back to healthy eating again because I can feel how bad foods are a burden to my system.

The Reverse Therapy is marvellous! It’s my ticket to health again. Not the health I had ten years ago but that’s ok, I wouldn’t want to be that person again anyway.

It’s still early days. I’m still at the learning new habits stage and that’s not easy. But because of RT being so tailormade to a person and, really, just the personal message your body is trying to get through that thick skull of yours, it’s not hard either. It’s very fitting.

For me, personally, I’m one of the people who has to learn (that it’s ok) to slow down. It’s OK to just sit back, to let life happen and to smell the roses. To “loiter”. (there’s an excellent Dutch word for it: lanterfanten.). Be a playful human without second thoughts.

Most people in RT need to learn to not be afraid, to not be so cautious and to go out and have fun. And they need to learn to stand up for themselves, set boundaries and express their feelings.

I’m one of the 40% minority that has plenty of fight when it comes to fending off other people but instead has a hard time to calm down.

There are two secret messages that I need to hear over and over again until they are ingrained into my mind and soul. I am going to share them with you but this is a one way street. You are not to communicate with me about them. They are between me and my body and by telling them here I just want to illustrate my RT proces to you, I’m not interested in your opinion about them. Discussing your opinion will interfere with my proces so please refrain.

These are the two main messages my body would like my head to know. Two pieces of wisdom that are news to me. I have lived my whole life without knowing that:

  1. we are safe. Here and now: we are safe. We are warm enough, fed enough, there’s no noise, there’s no chance of assault. There is no need to prepare for eventualities because We. Are. Safe.
  2. it’s ok to sit back and “lanterfant”. To just enjoy the moment, to live here, live now and “be not-useful”. Living here and now really is the meaning of life. It’s what I, the body, was build for and in which I excel. Enjoy it.

There we are. News to me! I’ve lived my whole life not knowing this and instead obeying a set of opposite rules. I’m sure you can see how opposite rules put the Autonomous Nervous System on edge. Drains it. Cause failing adrenals. Causing system wide collapse. ME.

Whenever I remember these two messages my body relaxes. My ANS relaxes. There’s a lot of mindfulness involved. Meditation. However you want to call it. In terms of the ANS it’s the Relaxation Response that gets triggered. And that’s what healing me.

Still ill?

Well, yes and no. The Addisson’s won’t go away. And I’m still weak. The sensitivity to a lot of foods and atmospheres remains. I still need to lay down every day, both for resting and for digestion, but these days I’m looking forward to having an hour of peace and quite. The rest and digest is a lucky byproduct. It’s no longer a chore I have to perform in order to beat this illness. It’s a luxury, to just lay there for an hour and lanterfant (mostly knit. Or surf the internet.)

I still take HCL with my food. I avoid gluten, beer, sugar, raw vegetables. Take all the supplements people with ME are supposed to take. I still do all the good things that got me from severe ME to a housebound level. Most days I’m still housebound, if you look at it from that end of the periscope.

But that’s just it. Looking from the outside you’d say I’m still doing all the same things but my perspective is 180 degrees different and that’s why everything is different now. I’m no longer an ill person. It’s true!

I no longer define myself. I no longer let my head-voice be the narrator of my life. My body is the narrator now and it prefers living in the moment. I’m trying to comply. It’s a bliss when it works. There really is a whole other realm of reality, in the moment.

This must be where meditating people get their kicks. (I’m not the meditating kind). This must be why the mindfullness people can be such a cult. (I hate hearing other people breathing or rave about the grass under their feet)

I’m doing it via Reverse Therapy. Same difference. Tailor made to suit me.

The other bits of Reverse Therapy are making me gain stamina. Physical stamina. I’m going out, doing things. Driving my car, visiting friends, standing on my feet for hours. I’ve experienced physical tiredness for the first time again. Not exhaustion but just physical tiredness. The kind that goes away with a good night sleep. The one that might get you a bit of muscle pain the following day. A novelty!

I wholeheartedly recommend Reverse Therapy to anyone with a chronic illness. Especially when you’re a perfectionist or tend to rationalize everything in your life. It won’t heal you. Recovery is a byproduct from this type of coaching. It will make you happy. It will show you you have a life. And that there’s a bloody marvelous way to live it, a way you’ve overlooked if you’re anything like me.

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!

Looking back at my CFS/ME

HOW I THINK CFS WORKS:
I feel that any major accident only happens when about 7 factors line up and go wrong simultaneously.
Small factors that are not really significant in themselves. But combined they can cause a train crash, or a melt down in a nuclear facility or someone getting CFS.

Furthermore I view CFS as an illness where the bodily system is overwhelmed and can no longer cope with normal life.
What causes an individual body to get overwhelmed varies from person to person. Everybody has their own 7 contributing factors that ultimately cause CFS. That’s why for some of us Lyme is key, for others mitochondrial stuff and to another it’s all about the stress response.

The 7 factors and the overwhelming are two different things in CFS. The overwhelming needs immediate attention and for this the body must me relieved from as many burdens as it perceives. Otherwise the overwhelming will continue and the body will be in distress and despair all the time. It’s probably stuck in a loop of automated stress responses from the brain (the very loop the Gupta Program tries to break).

The 7 factors are the ultimate cause of the illness and they need attention along the way and in some cases life long alertness/treatment.

BODY BURDENS
When we fall ill all persons with CFS/ME share an incapability to deal with body burdens.
These burdens can seem “silly” but they aren’t.
They should not be questioned but removed from ones life immediately.

A “silly” example from my own life: all of a sudden showering exhausted me and I had to go to bed directly afterwards. Often I could not even towel myself dry any more and had to call my husband to do so.

This burden felt silly and I reprimanded my body. Which did not make the burden go away.
Later on I thought up a theory that explained why my body couldn’t cope with showering (blood pressure problems, difficulty maintaining homeostasis, external change of body temp, whatever)

Whether a burden is rooted in sillyness or a plausible theory, it doesn’t matter. All that mattered was that showering was a burden to my body.
So I removed it from my life and my body was grateful for it.
(I started to wash myself seated on the floor of the shower, or with a bucket and a cloth in the bedroom. Once a week.)
Not having to deal with the burden alleviated my body.

Removing as many burdens as possible in the heavy stages of illness will help the body save its resources.

Don’t argue with your body about what bothers it, just get rid of it.
Is it light? close the curtains. Is it cheese? eat pears. Is it your job? resign (yes). Is it your family? say: “see you in 5 years.” Is it the city? go live in a cabin out west. Is it noise? wear mufflers. Is it boredom? start knitting (it soothes the nervous system and is tactile and technical and there are patterns for everey degree of brain fog).

Some solutions may sound silly or impractical. But they are not. They are what’s needed. (I pretty much did all of the above.)

LOOKING FOR THE 7 FACTORS
The second thing I did, as soon as I had some breathing space from getting rid of body burdens, was investigate what my specific 7 factors are.

I had some things ruled out via standard blood tests: vitB12 shortage; vit D3; Lyme disease; Thyroid; cancer markers; liver problems. The usual your doctor will think of.
Then the doctor could help me no further, he threw his hands in the air and said: “We’re used to seeing patients with one major thing wrong. You are all over the place! I have no idea what you have!”

With this I realized it was all interconnected. It would be very hard to determine what was cause and what was effect. So I didn’t even bother trying.

I listed my symptoms/problem areas:

  • My hormones where weird
  • My digestion was bad
  • I was malnourished
  • My bloodpressure was way too low
  • My brain did not function any more
  • I had slurred speech
  • I could not keep balance
  • I had insomnia every night
  • PMS was through the roof
  • My blood sugar was extreme and erratic
  • My body was no longer able to keep its temperature or its homeostasis in check
  • I was anxious and wired and supertired at the same time
  • I could not lift my head or speak upon waking, someone had to spoonfeed me a bite to eat before I’d respond

Because there was not one obvious starting point I thought this: “It doesn’t matter where you start to focus on. Anything will do. As soon as you improve on one area, the body will react grateful and heal (some) in other area’s. The body is great that way.”

FIXING DIGESTION
So I chose to fix the malnutrition. On a whim.

I knew I wasn’t taking up the nutrients from my food. Digestion was minimal (grey, floating poo with recognizable food morsels). And what nutrients I did absorb my low blood pressure wasn’t able to deliver into tissues and organs (that’s why the malnutrition).

Slowly I fixed nutrient uptake.

By taking stomach aids (making it more acidic), by eating every 20 minutes (keeping blood sugar level), by eating only foods that are -to me- easy to digest (no fibers, no veggies) and by laying down when the stomach empties into the duodenum (40 minutes after chewing). I also chose to eat a ketonic diet which requires minimum effort for maximum nutrients, I chose Homo Optimum Diet. With this you get your energy from fats in abundance. It also normalizes brain chemistry (it is used to treat epilepsy). And it keeps blood sugar level. I took pancreatic enzymes and a multi-vitamin. I had my husband buy organic chicken soup  and rice (I wasn’t able to cook back then)

I aided my low blood pressure with Cortinef and by laying down a lot.

I aided/indulged my brain fog by doing only 1 thing per day. I lived in a daze anyway so getting out of bed or ordering a supplement was enough for one day.

HAVING A LUCKY BREAK
I had the good fortune that my insomnia each night is of the kind where I am very alert. For one hour and a half my brain fog was gone and I was able to read medical journals and research my case. I wrote little notes to daytime-me about what supplements to buy or what to eat. I had to be very specific as daytime-me couldn’t even remember my name most days.

I think everybody has a lucky break they can employ in this stage of the illness. For me it was the alert insomnia in combination with my intellectual drive (willing and able to read scientific papers). But it doesn’t need to be any of this to get ahead with this illness.

~ Your lucky break may be your background as a care counsellor: you speak the language of doctors and you know how the field operates. You can use it to get what you want from them far more efficiently than I can.
~ Or it may be your knowledge of yoga: you can aid and stretch and calm the body while bed bound. It will soothe the nervous system, aid digestion and the lymph system and preserve your health much better then I ever could.
~ It may be that you’re a mum: you can ration your daily cuddles with your kids and you can empower them by delegating the tasks you cannot do yourself. You’ll have daily bouts of love and you’ll learn that life in your house can unfold in ways you couldn’t have imagined when you were in total control. I was very lonely on a daily basis and it took a long, long time before I learned that another way of doing things is a good way too.
~ Or can it be something as “insignificant” as that you have nice long fingers? They are excellent for tatting. Or you could just admire them against the filtered light from the window. Taking in the shapes, the colours. Being at peace. Perhaps your hands prompt you to take up photography as a hobby. In your bed, one photo per week, just with your phone, celebrating the shapes and colours your beautiful hands show you.

Just look at your life, there’s bound to be an edge you can use.

I set aside a year to get better digestion. I got rid of ambition, of the pressure or the need to achieve. I stopped explaining to people what was the matter. They couldn’t understand anyway and having to justify myself was very tiring.

FIXING HORMONES
When my body responded a bit to the better digestion and I was ready to take on the next subject and I chose hormones. Again, any subject would have worked. Again I set aside one year. This wasn’t as much a conscious decision, it just turned out it took about a year to focus on one subject and get some headway on it.

With a good endocrinologist I found out I lack Progesterone, probably from birth.
Over the years I’ve learned this is not a female hormone at all but the precursor to most adrenal hormones, including cortisol.

By the time I fully understood this my adrenals went bust, I had now acquired Addison’s disease. I was 4 years into ME and got a new disease. Gradually I learned to live with it. And again: stopped explaining myself to people.
To my new friends from the knitters’ site Ravelry.com I did explain how little energy I had. They (and I!) needed to know this so it would be clear how and why I was choosing to spend it. Pacing has always been a problem for me.

FIXING SLEEP
Sleep I have not been able to fix. But I do not care so much about it any more. I’ve found a way to wake up rested even though I toss and turn for 2 hours in the middle of every night.

 

THE ACTUAL 7 FACTORS THAT MADE ME SUSCEPTIBLE TO CFS
Now, May 2014, I can look back and identify the 7 individual actors that made me fall ill back in 2008.
Some of them I treated without knowing so when I chose one subject/symptom to focus on for about year. Others I stumbled upon or they grew suspiciously appearant in my life. I researched them and found they not only make theoretical sense but also all empirical testing in my life confirms their existence. On these 7 factors I have not found anything debunking their existence, in my case.

  1. I’m a go-getter and overachiever. Ambitious, quick, adrenalenic. Never resting, never loitering, always productive, always plans. (Tiresome to be around, no doubt. Tiresome to be, to be honest.) Besides rooted in character and upbringing this is also influenced by a MAO A mutation I carry. It makes for high levels of noradrenaline and serotonin and intense focus (making me the opposite of AD(H)D). I’m a hyper piece of quicksilver by nature.
  2. The individual make up of my intestines. They don’t like particular foods (due to individual gut flora and enzymatic build up). But also literally: the way my guts are tangled. They lie such that they press against my liver which causes pain. Which causes stress (and perhaps my insomnia?)
  3. Hormones. It seems I don’t make enough Progesterone. This caused Estrogen dominance (PMS from hell). Adrenals had to replace the shortage from the start which put a heavy burden on them all my life. As all endocrine organs slow down after age 25 this caused more and more problems over time making me very weak. And at 37 years old suspectible to CFS.
  4. CNS (Central Nervous System). I lack a basic sense of safety and was in constant Fight or Flight modus because of that for all my life. It seems my CNS was not calibrated well at birth. This is a physical thing, not phsychological. Being in Fight or Flight constantly seriously taxes and weakens the body.
  5. DNA mutations. I lack enzymes for proper use of vitD, vitB1 and Folic Acid. Lifelong shortage on those present problems which standard blood tests won’t explain. (my GP recognized the symptoms but was stumped when the blood work didn’t reflect it. He cheered when I presented the DNA evidence, he was right after all, the tests were false positives)
  6. Insomnia. My whole life I’ve woken up after about 5 hours of sleep. I lie awake -very alert!- for about 1,5 hours. Then I get another 2 hours of broken sleep. This pattern robs me of REMsleep including the boast in Human Growth Hormone and GABA it provides.
  7. various smaller things: very sensitive insuline response; sensitive to Tyramine; dust mite allergy; no hobbies and never learned to relax; Atlas Profilax needed; etc.
  8. unknown factor. (mitochondria? virus? bacteria?)

I can now see how my body was hollowed out, made weak, by this factors combined.

So when 2008 came about with its usual life stresses and then a little virus… I fell ill.

Some of these I’ll have to treat for the rest of my life: the hormonal shortage, the DNA mutations, my easy flammable character. If a virus was a factor in my case, I would have had to treat it with ongoing anti-biotics and hope I’d beat it one day. Some people with CFS who have this as a factor go this route succesfully.

MY PROGRESS AFTER ONSET OF CFS
Over the first few years of CFS I slowly regained my digestive and mental functions, just by throwing out of my life anything that burdened my body. This included noise, fruit, raw vegetable and my mother in law.
The first two to three years I lived in a daze, not knowing my name, and very anxious and stressed out from trying to fight this disease. Or just understand it.

After the first 4 years I had learned enough about digestion and nutrition; about the lymph system and the bodily stress response; about CNS and hormones, to actively combine them into a daily routine that didn’t made me worse than I was.
Only at that time did I stop getting worse.

(that’s also about the time I got Addison’s, as a funny coincidence. As a consequence of getting Addison’s  I gave up, I gave in to the CFS, thereby stopping the stress and anxiousness which taxed my adrenals so much. So there’s a major happy consequence of a funny coincidence right there. Because giving in made me sit back and accept that this was to be for a long ride and that’s when I started to learn to enjoy the moment. It is the time I started to experience calm happy moments for the first time in my life. As a quicksilvery person I had never took the time to smell the roses. Or spend an hour without purpose. I had never allowed myself to bumble about, wasting time. I had never relaxed, actually. And I had never experienced true, existential happyness, in the moment. I would never have learned this without CFS, without acquiring Addison’s and without giving in to them. This alone has been such a gift. Who knew that major life experiences hide in such weird places? And that you don’t have to do hard work to gain them?)

Over the last two years I got to understand and address the underlying factors: I started to structurally supplement Progesterone and Cortisol. About a year ago I learned about DNA and had my genome checked and things started to make even more sense. My doctor was right about the shortages in vit B12 and vit D3 all along.

Last Summer I corrected my Zinc levels (had a horrible time with Copper Dump but very worth it) and only 6 months back I started experimenting with mB12 and methyl-folate. (go slow, go low. I take one tenth of a pill twice a week and that’s all I can stand and all I need. I’m here for the long run.)

SLIPPING UP
I did slip up spectacular a couple of times since last Summer, at times when I should’ve known better.

One was stress related, I had to take to bed for 6 weeks last fall only because I didn’t manage my own stress levels when planning a trip to a foreign country.

Another one was cheese related (tyramine) back in September and I did damage my kidneys a bit with that one. Ouch.

Then last February I nearly killed myself because I was so depressed only to find out it was caused by a stupid shortage of vit D. That one really hurt my pride and self esteem. (Let’s hope it taught me not to take either one so serious)

Then last month I had two splitting head aches only a week apart before I figured out I shouldn’t eat 10 chocolate bonbons in one sitting (again, tyramine. And frustration about not being able to attend all knitter parties.)

Luckily, each time it took me fewer and fewer days to recuperate. These experiences make I’m less scared now of the next slip up. Or the next plateau or even dip in my recovery. Which will undoubtably come. (And if it doesn’t there’s menopause to look forward to.)

THESE DAYS
It’s only a couple of weeks back that I started to take 100 mcg of Progesterone each evening, even if it doesn’t help me to sleep. Also at the end of my insomnia stretch I now take a morsel of hydrocortisone.

These two things insure I wake up better rested then ever before, even though I lie awake from 3 till 5 AM. (theory: the supplements cover the wake up response my adrenals cannot provide anymore and this prevents the body from experiencing stress which it would otherwise have due to lack of cortisol just before waking up)

These last couple of weeks I’m very active during the day. This is by design. I believe movement will normalize hormone levels. And help the body to get rid of waste (which is extra generated through the Methylation Protocol). I also eat very little (but a lot of calories) to preserve energy. Basically it’s chicken soup, cream, butter and chocolate. And eggs. And fish with veggies, I crave fish with veggies. I take lots of HCL as that will relieve the adrenals a bit and the bile will remove waste.

Another significant thing these past few weeks is that I worry less about my body. This is an angle I pursue actively too, to keep my system out of Fight or Flight. (to aid this I have started Gupta Amygdala Retraining this week as this suits my theory of my particular case of CFS)

I take lots of valerian. I walk outside every day. I’ve gone shopping with friends in busy cities all day. I’ve driven my car for hours to a knitters’ party and back again. Twice in one week! I take a shower whenever I want. This is all very novel.

I still take my horizontal rest every day, 45 minutes after lunch. It’s the only time my intestines gurgle = work. I still take stomach aids (HCL). I take time to smell the roses. I try not to think about my body or the illness. I stop any worrying by actively intervening and directing my focus on another subject (knitting problems are always good).
I found I can do with less Hydrocortisone, as long as I remember to take my Progesterone Cream throughout the day.

I’m stumped that I get my period even when on the Progesterone daily. I take it every day, including the eve of my period and its first days and it happens anyway. Normally and healthy as …. a normal and healthy person. I feel good too. No PMS, just the littlest of cramping. The theory is that this HRT (Hormone Replacement Therapy) covers my base levels. That is has nothing to do with female cycles. Since doing this my body is at ease, both at nights and during the day. (HRT needs to be with bio-identical hormones. None of these progestins, only real Progesterone will do. In Europe Utrogestan is the brand you need, 100 mcg per day. It’s a generic drug which means your doctor has not had it actively promoted to him/her. But it’s out there. Get it.)

Right now I’m a bit intense and hyper, probably on too much vit D and cortisol. Or too much chocolate. What can I say, it’s a work in progress, a balance I need to find.
But it feels like I’ve figured this out finally and I’m on my way to better health.

It will take years. That’s ok, I’m not in a hurry. It took me years to get ill so that’s fair. And I’ll have to learn to be healthy again anyway: how does one fill a day? What does one chose to do and what not to do? How did it feel when the body was buzzing and fluent and ready to run and jump and cheer?
And: how do I keep a calm pace and enjoy happiness, every day, without feeling the need to give an account of it? To document it? To justify my existence?
I’ll learn in time.

THIS BLOG
In the mean time I hope to stop talking about CFS on this blog. I want to talk art. Illustration. Stopping the manure plant. Share original sleeping Beauty stories. Weird things my cat does. Things that interest me. Things I enjoy.

Here’s to high hopes!

pic by Andreas Krappweis

PS
a smart person over at phoenixrising.me informed me of existing links between hyperglycemia, hyperinsulin, insulin resistance, vit D and progesterone. I didn’t know but it all ties in beautifully. These enhance each other’s working.

I was diagnosed with hyperglycemia back in 2004 and have had erratic blood sugars all through 2004-2008. Only a ketonic diet has cured me of those and it wasn’t untill a few weeks back that it all started to come together and add up.

Now that I supplement Progesterone every evening, including when I have my period, ánd vit D ánd have level blood sugar ánd keep calm at night with hydrocortison ánd aid digestion with HCL ánd practice a Happy Go Lucky attitude it seems I’ve stopped the continuous stress reaction in my body. The Fight or Flight response.

I’m on my way to better health, I’m already suddenly on a 55% level (compared to 40% level all through 2013).

ME/CFS: How I got rid of my structural brainfog.

I wrote this blog entry for the ME forum RisingPhoenix.me
I’d thought I post it here too because it might help someone who hasn’t found that forum yet.

I noticed my daily brainfog has now lifted, it has been better for a year and a half now. I think I can name some things that helped this:

1. HEALTY GUT
I have a strict diet called Homo Optimum. In this you get your energy from fats, not carbohydrates. Because of this I eat very little, thusly sparing digestive energy. I also stopped eating anything that upset my tummy or my brain. This includes ‘healthy things’ like all vegetables, milk, nutmeg, garlic, plant based oils. I’m not arguing with my body, if it upsets it I skip it. Symptoms are abdominal pain or excited brain

2. DIET
I now mainly eat egg yokes, cream, chocolate ganache and chicken soup (from scratch). With salt and vinegar.

3. LEVEL INSULIN
No blood sugar peaks anymore. Eating a fat based diet helps this.

4 MINERAL SUPPLEMENTS
full spectrum supplements. All minerals aboard! Yes this makes for expensive pee. But my cells are missing nutrients and I need to offer them. Gradually I found some supplements don’t feel good (B6, Calcium) and some I nééd (Magnesium, Lithium, VitD3). Adjust accordingly.

5 CORTISOL SUPPLEMENT
structural supplementing with hydrocortisone. My adrenals were not well, confirmed by tests. I’ve gradually aided them with hydrocortisone (5mg per day). Once I started supplementing structurally about a year and a half ago the brain fog lifted permanently (10 mg per day). It also put my adrenals out of commission six months ago, they stopped working altogether. This was a risk I took, I’m not whining. (In the future I’ll see if they want to start again, for now I’m supplementing 20-30 mg HC daily and feel good on it)

6 NO STRESS
serious downgrading of daily expectations. You know the Spoon Theory, I presume. I have about 5 spoons of energy for one day. Getting Up in the Morning, Getting Dressed, Getting to Bed at Night, Shower or Cook a Meal. That leaves one spoon for something else: Write a Letter, Call a Friend, Clean the House, Make a Drawing, Post a Letter. I choose one and only one of these each day. And am content when I achieve it.

7 TAKE HORIZONTAL REST
serious resting. I need to go lay down 45 minutes after I had a meal. This is crucial for digestion. The 45 minutes between eating and resting are a Golden Hour, a little time I can be active. But after that: need to lie down. For about an hour. Or two. Under a woolen blanket because I’ll get cold.

8 PROGESTERONE SUPPLEMENT
calming the system by supplementing enough body-identical Progesterone. This is not a sex-hormone. It is the precursor for all adrenal (medulla) hormones and a soothing neurotransmitter for the brain, in men and woman alike.

I’ve done most of these things from the moment I fell ill, in 2008 (6 years ago). I didn’t get them balanced until a few years ago, that’s when things really got better.
The first few years I had structural, debilitating brain fog. All day, every day. Couldn’t keep my balance, couldn’t remember my name.

LUCKY BREAK: USING MY DNA MUTATION
I had the fortune though, of having two hours of alertness during the night. This is not illness-related. It’s because of my natural tendency to have too much excitatory neurotransmitters ((nor)adrenaline, dopamine and serotonine) in my head. The very opposite of brain fog! It’s because of a DNA mutation most people see as a burden (mao a)

This causes me to lie awake after 5 hours of sleep every night, I’ve had this from birth. (In fact, I’m using it to write you this)
Even when brainfogged during the day I would still have this alert insomnia episode at night, able to read medical journals and leave notes for the brainfogged-me to follow during the day.

I’d wake up and find a note with “magnesium!” on it. And have absolutely no idea what to do with that…
Nighttime-me quickly learned to write better notes: “order magnesium-citrate from xxx.com and take half a pill in the morning and at night.”

ON MY WAY TO HEALTH EVEN WHEN I WAS BRAIN FOGGED
Because of this nightly trait I was able to do the following reasoning when I got ill:

  1. this is a system wide failing. There’s no way to pinpoint cause and effect, all major systems are down.
  2. this also means it doesn’t matter where I start to tweak the system. Anywhere will do. I choose nutrients. Cells and body need nutrients to work.
  3. what are the nutrients scientists give cells in their petri dishes? That’s what I’ll start feeding my cells.
  4. I notice my poo is light and floating. On this poo-site it says it lacks bile. Biology101 says bile is produced in reaction to stomach acidity. I need to acidify my stomach acid. Order betaine HCL (This might aid digestion too.)
  5. I notice my blood pressure is low (90/60). Hey, low blood pressure is a good thing, right? Oh merde, it actually means blood and nutrients aren’t pushed into tissues and cells. I need to aid this, I need to raise my blood pressure. Or lower other demands on its system (like standing up). And/or “pulling” blood into the tissues by activating the back office system: the lymphatic system.

So that’s what I started doing. Amend nutrients intake, uptake and delivery into the body cells. And removal of their waste.

On step 2, when I chose where to start helping my body: I had to choose one thing. I couldn’t follow multiple subjects, I just didn’t have the brain cells for that. But like I said, I deduced that it didn’t matter which road I chose. The body would respond to any which one.

Other choice options I felt I had were: trying to restore Sleep; Hormones; Stress Level; Nervous System or Immune System. I touched upon all of these in the following years. I cycle through them it seems. Only DNA has been new to this list. And Immune System has never been much of a topic with me, it seems. Probably because of low cortisol = high immune activity. And initial tests didn’t show Lyme etc.

BE KIND WHEN BRAIN FOGGED
In the first years, when so severely brainfogged, I had lots of notes on the fridge including which supplements to take and reminders to put on a woolen hat and the central heating and to make tea for myself often. Because I’d get cold and then felt extra miserable. But I would forget to put on the heating. Or felt I was not worthy to spend the money on heating. Yes, brain fog comes with silly notions.

That’s why I had my mum or my husband or even strangers write notes: “put on heating! enjoy a warm foot bath. You are allowed to.” To battle these weird thoughts.
There would be love notes there too, just to remind me someone loved me. That I love me. Picture of a pet.

TODAY ONLY OCCASIONAL BRAIN FOG
Nowadays I am free of brainfog on a daily basis. I do get fogged now and then but it’s always tracing back to something I ate or when I did too much. It lifts when I go rest or sleep. When it’s because of food it may take a few days to subside. Or two weeks if I really messed up (aged cheeses, delicious gluten bread, having a piece of cake on a birthday, experiencing life stress). I avoid this now, it really is not worth my time.

I realize this is only what worked for me. Strongly based on my personal signature of this disease. For example, in time I learned I am Progesterone deficient and have excess of those excitatory neurotransmitters and have a belly that doesn’t like gluten and an immune system that’s going strong. This will be different for everyone on these Forums. (I’d say I have CFS, not ME)

GETTING THROUGH THE HAZY DAY
What is the same for everyone though is that we need the substrates for our cells (take salts and minerals) and that we need the bloodpressure to get them to our cells (lie vertical, take salt or HC). We need to eliminate waste from our cells (stretch and yawn while you lie in bed, drink warm water, get bile flowing) and we need help when brainfogged (have a supportive list on the fridge, then try and remember to look at it)

And most of all, I remember the difficulty of getting through the day when severely brain fogged. In the end I did so by only trying to get through the next half hour. That was all I needed to do. Survive the next half hour. That’s doable. You can do that. And remember: you’re worthy of a warm body, wear your hat.

Holle time day 11: hiding in a hole

Around this time Frau Holle retreats into her well, taking with her all the souls of new and old life of this year, to be reborn in the next.

During the year she transforms from a Spring Maiden into a Fertile Summer Woman who reaps the fruits (and souls) from the land in the Fall. Come Winter she becomes a Snow Queen.

pic by Belovodchenko Anton
pic by Vatik
pic by Ayhan Yildiz
pic by Joseph Hoban

But when the wheel of time turns the year, just around these days, she is ageless. Timeless. Shapeless. She has taken all the life of the land to a safe haven, under her skirts, into her house at the bottom of the well, in a deep dark hole where no winter cold or humans can reach.

pic by Katinka Kober

I too would like to crawl away into a hole like that. Start sleeping. Healing. Only to emerge when the first promises of a new year are showing.
(Perhaps they are already here, these promises? Today was a bright winters’ day, with crisp light and some small birds already chattering. I see from behind my window.)

Yes I want to hide. Because today, and also yesterday, I am battling against stress. It’s been building up for a few weeks now but today it is particularly bad. It shouldn’t be, I have no stress, there’s nothing in my life threatening me. (Well, except the x-mas cards I didn’t send, to 5 people who really NEED to get some sort of hello from me)
really, need, desperate, hello

… I’ve got no words and I’ve got no energy. I should at least let the know this, if nothing else…

My body is twisted and cramped. My heart is pounding. I’m wearing my shoulders around my ears once again. Gone is the freedom of movement and fluidity the AtlasProfilax provided. I’ve stuffed it all away under tensed up muscles and startling responses.

Fifty times a day I realize I’ve slipped into a twisted posture. Sitting askew, not really relying on muscles to keep me upright but more on cushions and fatflaps.
I find myself leaning deep into the computer, squinting my eyes, and realize I’ve been sitting like this for an hour.
I can’t sleep. My breathing is shallow. I am in stress.

This is out of the ordinary. I’ve left this habit of stress behind when I moved to the cabin. It took a few months (or years) to grind it into omission. Now it’s back! This is how I was for 35 years. This is how my body was 35 years… it is not how I truly am.

Something in my body is whipping up stress.
It could be a number of things:

  • my period just started. Usually I take no progesterone for a couple of days to allow for my period. Today I cannot be without progesterone, my body is screaming for it.
  • something could be frustrating the clean-up of excitatory neurotransmitters. It’s already hindered by the MAO A mutation but it now seems it doesn’t get done at all. I’ve got no idea what that could be and I haven’t got the braincells or rest to study it online.
  • something could be egging on the production of these neurotransmitters. Could it be the mB12 and the Folinic Acid, releasing too much toxins in the system?
  • I had quite a bit of commercial chocolate at my sister-in-law’s the other day because we were there longer than expected and I was so going down the drain. I’d think it would have left the system already but you never know
  • I have quite a lot of bleeding “in the pyama region” (euphemism I heard today), this is adding to the bodily stress. I thought I was taking enough cortisone to deal with it but who knows? Sitting and lying doesn’t help it heal, that’s for sure. Of course, sitting and lying is all I want to do…
  • is the breakfast I had today? I went back to my usual two egg yokes.
  • is it the rice-gingerbread cookies I’m eating these days? are cinnamon and clove building up, messing with my brain?
  • I’ve been eating fish with kerry and fresh koriander all week, is that you nutmeg-in-the-kerry?

I can’t figure it out at the moment.

So I better approach it from an other angle. If I cannot reason my way up from the cause, I better start at a remedy and work from there.

What might help in this case is movement. If there’s toxin in the blood moving around will help it clear up. Yes, I should move…

Ha! you know how that is. You should. But you don’t.
The trickery part is that the longer I postpone it the more difficult it becomes.

Really, I should get up and get out there. Be a snow queen.
pic by Alfred Borchard
(I should also take a shower. Probably won’t happen either)

Oh, COME ON!
If I don’t move this mood will wreck my sleep tonight for sure! These things have a way of effecting the future. Move your butt!
pic by Thibaut Monot
grrrrr!

UPDATE
I wrote this post last night. I then went to sleep and slept from 22.30 untill 8.30. That’s the longest I’ve slept in…… EVER.
????
This body, it really has advanced humour.

pic by Nate Brelsford

I didn’t go outside.
I didn’t take a shower (it’s just not logical on day 2 of a period, I’ve got more waste to shed, day 3 is a glorious day for showering because then the period has drawing to a close.)
I did do some felting which involves standing at the sink and pounding. I didn’t watch tv and didn’t take my iPad to bed. I tried to relax my eyeballs because I think I’ve caused double vision by staring too intense at iPad and knitting. I skipped any x-mas cookies or nutmeg. I ate very light (= chocolate ganache and whipped cream which may be fat heavy but are not heavy to digest)
And I took echineaforce for the first time since september, when my liver needed a rest.
Now I’m back to my original suspicion that my night time waking has to do with allergies (dust mite) and a disproportionate reaction to that (neurotransmitters).

oh, I don’t know! It doesn’t make sense at all. I need to keep my body calm, that’s all I know. And it has a weird sense of humour.

I just woke up with a zit on the inside of my eyelid. The inside. Of the upper eyelid. The part that touches my eyeball.
pic by Sheldon Pickering

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