Looking back at my CFS/ME

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.

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.)

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.”

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.

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.

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.

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.


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.

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.)

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.)

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.

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

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).


Brain chem: double shot of MAO A, cream, no sugar.

There’s this enzyme called MAO A. It takes a neurotransmitter and slices it up for parts. The neurotransmitters it typically likes are the excitable ones: adrenaline, noradrenaline, dopamine and serotonine.

I have a faulty gene coding for this enzyme. One of the basepairs is double mutated. G codes for higher activity of this enzyme, T for lower. I have two T’s, my enzyme doesn’t work as well as it could.

Now before everyone runs over to dr.Wiki and starts talking about Brunner Syndrome and oversexed violent people, that research is about one family (albeit Dutch) and about a specific mutation that put the whole gene out of commission. My mutation involves a base pair that (I suspect) downregulates the gene and is actually quite common.

But I need to read loads more about it. I did some earlier today and got really excited. But now I’m too fogged to put it all together in a sensible way.
I’m going to put some things here anyway, just for funsies, and hope to come back to it later and sort it out.

 pic by David Schauer

Epinephrine doesn’t get cleared away at a normal rate. It pools up and as it’s an excitatory neurotransmitter, it bounces around in my synapses, making my head resemble a pin ball machine. This is actually how I have described my mental state and capacity for many years.

You know what’s that like, right?

 pic by Eziquel (zick) Boita

You’re wired, sharp, ready to move a mountain, fight a lion and kick some ass. Yeah baby! You are ALIVE!
It’s very akin to being over-caffeinated. Caffeine does indeed raise adrenaline.

This is what I felt like for 35 years. Apart from feeling ALIVE this is also Fight or Flight. This is feeling smart and on top of the world but at the same time wrecking the body because there’s no time or room for slow, healing processes.

While the (nor)epinephrine builds up and pools because the clean up crew is working with one hand tied behind their back, the body shuts down production of NE because there’s just too much. Then, when the NE eventually does get cleared away, there’s a gross shortage of the stuff.

Having your MAO A not work properly causes you to have all kinds of peaks and lows other people have not. In your mood. Mood swings!
I had noticed that my feelings had a more wide amplitude than those of my friends, classmates and mates at university. Also, they could swing really fast.

pic by Samuel Ascaso Piqueras

“Because the nerve circuits in the prefrontal brain regions, which are normally involved in attention, require high levels of dopamine and noradrenaline stimulation, reduced levels of these two neurotransmitters could potentially lead to the weakened regulation of attention and behavior observed in ADHD .”

“Methylphenidate, the active ingredients in Ritalin®, acts like a weak form of cocaine to increase dopamine and noradrenaline levels but tends to do it all over the brain sometimes resulting in unwanted side-effects such as nervousness, drowsiness, insomnia, suspicion and paranoia.”

“Norepinephrine, which is closely related to dopamine, is the main chemical messenger of the sympathetic nervous system. The sympathetic nervous system controls many automatic functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain several of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased gastric motility or movement of food through the digestive tract, and postural hypotension. ”

At the forums of PhoenixRising.me I found a few others with this mutation and hearing how they live their lives makes all kinds of sense to me. They thrive on flat blood sugar levels. They too only need a morsel of a drug or supplement to notice its effect. They know about coffee.

It’s so nice to recognize! I have much to learn from them.

This mutation offers a sensible explanation for my sensitivity. Any jump in adrenaline has an after effect long after the event.

Because of the delayed decrease and pooling of the neurotransmitters it’s good to have an uneventful day. It also explains why the band of comfort with supplements and drugs is very narrow. Basically it explains why I am so ridiculously sensitive to things. The sensitivity my doctor compares to autistic sensitivity.

It seems cortisol has a balancing effect on (nor)epinephrine?

“The other two neurotransmitters that have been implicated as playing an important role in sleep are norepinephrine (NE) and serotonin (5-HT).”It might be that high NE invites a rise in cortisol. If Deep Sleep causes NE to rise and in my case uncomfortably high, cortisol might kick in to try and dampen it. But it’s too much and I wake up and lie awake, waiting for the cortisol to leave the system.

I read a piece about how at night the body plays pretend-inflammation because it needs to do certain things for which it needs the higher temperature. I do know brain temp rises. It isn’t actual inflamation. But an overly dramatic imune system might think so, causing cortisol to rise.

I have to reread it and try and understand but at the moment: brain fog.

A little more about MAO A. It sits on the X-chromosome. I have two faulty alleles. So my mother AND my father(‘s mother) gave me a faulty allele.

This means that my father has the same disfunction that I have, a homozygote, him having only one X-chromosome. And so does my brother. They must have the same peaks and lows in their adrenaline.

Well…..we ARE a family that comes across as being over-cafeïnated….
My whole family from father’s side does. We are smart, fast, ALIVE, intense, quick silvery. We’re the people you want to be close to in a crisis, we will get you out. It may be this one allele causing it all.

pic by michelle kwajafa

Of course, the whole of modern society is overcafeinated. We LOVE quick, smart, fast and extravert. So it might be that my inborn tendency (the mutation) was exagareted by the time and society I live in.

I have not had the pin ball machine head for a few years now… Also, the “inner pounding” (roaring, ‘daveren’ in Dutch) has been gone for a while now.
Both since I started progesterone. And Valerian.

(Valerian does something with some neurotransmitters…. need to refind.. GABA, it interacts with GABA. It’s an agonist, a promotor.

“GABA does not penetrate the blood–brain barrier; it is synthesized in the brain. It is synthesized from glutamate using the enzyme L-glutamic acid decarboxylase and pyridoxal phosphate (which is the active form of vitamin B6) as a cofactor. GABA is converted back to glutamate by a metabolic pathway called the GABA shunt. This process converts glutamate, the principal excitatory neurotransmitter, into the principal inhibitory neurotransmitter (GABA).
It gets transformed and it used as fuel for the citric acid cycle”
Need to read up on GABA and glutamate and wether all enzymes for their pathways are good in me.)

Now I’ve lost the plot. But I’m very interested. It ties together the pinball machine, the constant Fight or Flight, the sensitivity, the parasympathethic nervous system and the mutation. Above all: it ties together some particular characteristics I have noticed in me compared to other people. I’ll go to sleep now, talk to you later.
pic by Florin Garoi

My Health: explaining my low homocysteine

With my specific DNA mutations in the methylation cycle a high homocysteine level is to be expected. Making me deficient for SAM-e and flooding my cells with sulfur.

pic by J. Gabriel

But much to my surprise the other day my blood test resulted in LOW levels of homocysteine. Too low, according to the lab. (“below six! Alert! should be 5-15”)

Now, having looked at my mutations, it is entirely possible my levels were substantially lowered in these few months that I started to supplement with methyl-B12.

I have two busted genes, one called MTR and one called MTRR.

Having MTR busted up properly, meaning a homozygous mutation, rendering the DNA useless to make its enzyme, is a rare mutation. Less than 1% of people have it.

Well, ain’t I the pretty spesiul snowflake!

 pic by J. Gabriel

Genic Genie -that wonderful program that will interpret your DNA results for you when it comes to Methylation and Detoxing- tells me this:

“Mutations in MTR have been identified as the underlying cause of methylcobalamin deficiency. Megaloblastic anemia can occur as a consequence of reduce methionine synthase activity.

A homozygous mutation of MTR A2756G is relatively rare (<1%). ”

Methylcobalamin is vit B12 once it enters your cells, y’all. Even though regular old B12 looks good in my blood levels there’s not enough of it in my cells. I have a vitB12 deficiency that doesn’t show up in blood tests.

Now, what is this MTR supposed to do anyway?

pic by Jefta

MTR grabs any a homocysteine particle and tries to glue a folate to it. With this new building block all kinds of wonderful things are done. Especially clearing the cells of all kinds of debris and heavy metals. So: important!

This glueing action by MTR requires homocysteine, folate, glue, scissors and a piece of mB12. Its friendly enzyme buddy MTRR makes this mB12.

MTRR is a special kind of enzyme, though, its like a brake. It does its thing in a slow, regulated way. Because hey, there’s other enzymes wanting a bit of mB12 too!

Here you can read a difficult piece of how it all works together. I don’t understand it myself. Yet. But the stuff has to do with proper DNA repair. And dopamine. And ATP and cortisol and moon phases. And they all long for mB12.

But my MTRR is broken…. no mB12 for any of you! This results in high homocysteine and all kinds of nastiness. And a sad little MTR who’s got nothing to glue.

But as soon as I started to supplement mB12 my MTR got going, grabbing homocysteine and folates left and right. Because my MTRR is broken too, there’s nothing to keep it in pace. My MTR floored it!

pic by Myles Davidson

As soon as I provided the mB12 my MTRR doesn’t make, MTR put the pedal to the metal. Quickly clearing my whole system of homocysteine. Resulting in the low levels that showed up in my blood work.

It may not be a bad thing per se. Wonderful stuffs are made from homocysteine-with-a-folate-glued-to-it. Stuffs such as SAM-e and Methionine (which I have not studied yet but they sound wonderful)

Homocysteine itself is a powerful yet dangerous thing I hear. Dr.Yasko compares it to a prison chain gang such as known in the US of A. A group that can do good and helpful things for the community. But they need to be monitored and supervised carefully.

Anyway, I do feel better on mB12. I take about 1mg per day (B12 felt not ok, neither did folate acid. Folinic acid doesn’t seem to do much either way, indicating that my heteryzugous MTHFR C677T is probably not expressed, meaning it functions alright and ignores the faulty half of the DNAladder.)
Next time I’ll get my methionine checked.

I wonder how the other enzymes are faring, the ones who’d like a bit of mB12 for themselves. Do they get any? How can I find out? How can I aid them?

to remind myself, this is what Heartfixer says about MTR/MTRR:
“The MTR A2756G defect is an up regulation. The enzyme is always on, grabbing every homocysteine and 5-methyl folate molecule that it can get its hands on, processing them to methionine and THF. Methyl-B12 is required for normal function of MTR, and with each spin of the MTR enzyme, one molecule of methyl-B12 is degraded.

MTRR (Methionine Synthase Reductase) serves the needs of MTR, regenerating methyl-B12 from available methyl donors and B12. Without methyl-B12, MTR cannot convert homocysteine in to methionine. Needed downstream methyl donors such as SAMe will not be generated. Methylation fails, so does your biochemistry, and there goes your health. ”

pic by Joel Kingsbury

On the Way.

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

pic by David Ritter

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

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

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

pic by Alison Taylor

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

pic by Enrica Bressan

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

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

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

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

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

pic by Alan Witikoski awitikoski

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

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

pic by Michael & Christa Richert

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

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

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



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

pic by Jean-Paul Brouard

health: new knowledge twirls in my head.

I’m reading dr. Yasko’s free e-book: “Autism, pathways to discovery”.

It doesn’t cut to the core of things fast enough to my liking but then, this book is written to coach parents without any interest in biochemistry into understanding how they can help their children.

Basically: when biochemistry is messed up, children of today will display autistic behaviour. Delay or regression in speech, eye contact etc. When the chemistry is restored this behaviour disappears. Extraordinary!

dr. Amy explains why children now have this problem and not children of 30 years ago (they get ME/CFS or Fibromyalgia) and not children of 60 years ago (they get Alzheimers.) It is all the same principle: genetic constitution + environmental toxins (including food) + your age at first exposure.

go here to the website of dr. Amy Yasko

Genetic constitution accounts for your ability to process foods and toxins. Children from the last 40 years are more troubled by their genetic make-up then people from before that period. The genes are still the same but the build up of toxins and the sensivity to them increases with youth. Which is why my parents only recently have started thinking about vitamins while I cannot function without 60 mcg of vit. D daily. At least.

Where I a newborn today, I’d be probably diagnosed with autisme before the age of 4. And only if my now-parents would supply me with all the micro-nutrients I cannot process from food by myself would that diagnosis be reverted. As it is with many of dr. Amy’s patients. (we are talking thousands, not hundreds of babies)

Let me be clear: these diagnoses of autism concern children with autistic behaviour. I believe all autistics are diagnosed by their behaviour? Well, some can be reversed or lessened by micro-nutrients. As well as aggravated as any parent of an autistic child knows. (I’ll not clear at all, am I?)

Well, I’ve only just delved into this material myself….

Combined with my genetic info from 23andme.com it gives me a lot to think about. And experiment with.

There’s biochemistry on a cellular level to learn (google “methylation cycle” or ) read this .pdf., I found it very enlightening. Skip over the first diagram and go to where there are simple drawings and simple explanations:

mythelation community illustratie

from autismnti.com. The best document about the methylation cycle I read before delving into Dr.Amy’s book.. Go read it here.

Here you see the basic activity that happens in all human cells: there’s energy being generated; there’s waste being eliminated; neurotransmitters are being made; folic acid and B12 are transformed and enzymes are activated by attaching or removing a methylgroup to their ‘recipe’: the DNA-code. That last part is what ‘methylation’ means. Attach a methyl group to a molecule and things start happening.

This cycle shows that these five parts interact and which amino-acids, vitamins, hormones and enzymes are crucial at which stage.

Now see that little flag called MTR/MTRR between the two processes on the right? I’ve got mutant flags right at that spot. Which means, now that I am reading up on this, means I don’t process folic acid or B12 very well.

So starting this week I am trying out supplements (the already processed forms of folic acid and B12) to see what happens…..

Boy! I got cured for two days!

My body was SO RELIEVED to receive Methyl-B12, I took it and a spring of calm welled up inside me.. Not like the calm progesteron gives me, that is more of a wave washing over me, happily greeted by my body. This M-B12 calm welled up from the inside. Very strange!

Than I was happy, energetic, active untill the effect worn off after about 6 hours. I remained verrrrry suspective.

I also got a bit too hyper as all kinds of toxins got released (the waste disposal part of the cycle sped up too) but I took lots of herbal tea and roughage (raw carrots and boiled cellery in fat chicken soup) to help my liver and bile and bowels to eliminate waste. I still noticed alterations in my brain chemistry but I’ve learned to cope with those. They were not too severe.

The third day I got very ill. Spend all day on the couch being very unhappy, desperate even. A symptom I associate with a lithium shortage. Turns out you have to take lithium with these supplements as the cycle depletes it fast. I’ve been taking lithium (the mineral, not the drug) for ages not knowing why except that I need it or I’ll get mood disorder/despair. Now I find out there’s a biochemical explanation for that. The first two days of happiness depleted my little storage of lithium and I have another mutant flag that depletes my lithium anyway. There’s just a scientific explanation for my desperation, right there in the research…

As there is for the vit.D I need to take. And the progesteron. And the zinc. And the magnesium citrate. And the ginger root. And the cellery. And the beef. And the chicken soup. And the need for silence. And the getting out of the city and away from smog. And getting my amalgam fillings out. And stop doing tainted glass. And all the things I have gravitated towards in the past few years.

I am very shaken by all this. I am shaken that all those little naggings I feet inside and that promp me to do this or take that now seem to have a scientific base.

And all the weird things I stopped eating (garlic, gluten, cheese, nuts, vegetable oil, milk, green leaf vegetables, hummus, beans, lean meat, fruit, asparagus, nutmeg, alcohol, sugars, glutamate, aspartate) all have a scientific base too. It is not pickyness it’s sulfur foods and neuro-exitants and too rough on the intestines and the wrong fats and all other kinds of reasonable things.

pic by Vasile Bulgac

As I said, I’m very shaken. I am afraid I will now praise my ‘sensitivities’ and ‘quirks’ now that some (all?) of them are confirmed and that I will taunt them and insist on behaving odd.

Also what is happening to my body now is scary. Now that I have started some specific supplements for my genes things are changing in my body. I have little headaches from toxins release. There’s still a copper dump going on as I balance my zinc levels. I forget to take my hydrocortison, I don’t need it for the energy as my brain is firing a lot. If I take it I get very hungry (this is a sign of too much cortisol as people with Cushing’s disease know). I have slept three night for 6 hours or longer.

It’s not that I am cured. It is just that things are happening. I’m very wired and I’m also still recovering from the previous month(s). I frequently forget to pee and things are just stormy here.

What I have not been doing is working. I have not even thought about bacteria or writing. The garden got the better of me this year. And I cannot concentrate long enough to dabble in design.

That leaves art. I have been thinking about that.

And life. I’ve been thinking about life a lot too. But words make these thoughts so flat and meaningless. “You live. And then you die. Wether you’re a human or a fly. Both live meaningfull lives. Don’t presume a human life is worth more than that of the fly. To the human in question it is, of course, but in the grand scheme of things they mean the same. Which means that the value of my life lies in between the minutes. It’s when I am not planning and accomplishing that my life  reaches its grandeur.” And so on.

Nothing concrete yet. I think I need a few months to physically ease into this mythelation thing and to emotionally recover from the passing of my grandmother and adjust to life  in general (again).

I am here though. I live, in between the moments. Looking ahead.