To sum it up: my ME, my 80% recovery, my relapse and recovery plan.

Hello, I was trained as an engineer and I’ve approached this black box of a disease as such: entertain working theories but only act upon results.

I was bed bound and brainfogged in 2008 and 2009. In the beginning it was very severe ME. I didn’t know my own name. I had to be spoonfed in the morning before I could even lift my head. I think I was at 10 % health of a normal person. Maybe 5%.

I took my recovery in my own hands when the doctor said: “There’s so much wrong with you, I don’t know where to start!”
My reaction: “Then it probably doesn’t matter where we start. I’ll start with digestion then.
Digestion was the only thing that gave us something to go at: my stools where grayish white and floating. I was malnourished. Something wasn’t working: bile. And with that the uptake of nutrients in the duodenum.

Because I had special bouts of insomnia at night (hyper-alert from 3 to 4.30 at night) I could read basic biology books and later on more specialized books and write to-do-notes to myself for the morning.
Thanks to these studies and some trials I devised for myself I managed to identify problem areas and what I should do about them. I worked my way through digestion; hormones; adrenals; nervous system; sleep and mental health. I tackled about one subject per year.

Whenever I started investigating a new subject I didn’t know what I was doing or where it would take me. But each and every year I made remarkable discoveries and, by applying them, progress.
Overall I slowly recovered to a housebound level, without brainfog or pain, just tiredness and no robustness for stress (bodily or mind). And I was being happy. For the first time I lived in the moment and I was happy with the moment, without planning the next one.

Then in May 2014 I healed miraculously overnight and got to 80% health at x-mas 2014.

My working theory:

  1. everybody has their own personal bodily signature that facilitates the onset of their version of ME.
  2. in every PWME the Autonomic Nervous System is perpetually scrambled.

My solutions:

  1. identify personal factors and address them. All of them. (Basically you have to change your life in every aspect.) (In my case: Progesteron deficiency + insuline hyper sensitive + always in Fight or Flight + never slept through the night + MAO A kaput + hyperalert personality + hear and smell everything + a virus/bacterie in Spring 2008 + shot adrenals by mid 30s + food issues + insulin issues)
  2. take away all (personal) stressors that bug the ANS + teach it to react different to impulses.

That last one is not so easy but the ANS and the brain are plastic and fluid, you can teach it new ways.
For me, I used Gupta Amygdala retraining; EMDR and am looking into dr. Goldstein methodes of influencing brain paths chemically. You could also try meditation or mindfullness. I also did some CBT and even hypnosis and am trying my hand now at Reverse/Mickel Therapy. All to try and learn new thought habits in order to influence neuro transmitters.
The goal is to influence the physiology of things, not the psychology of things. Psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

From the start I knew I had additional adrenal problems, on top of the viral onset Chronic Fatigue. That’s why I read a lot about the bodily stress responses, especially dr. Selye who coined the term “stress” (when he actually meant “stressor”).

The body has some powerful systems to deploy when survival is at stake. The Stress Response is one. The insuline response is another. These are The Big Guns the body has and they should be avoided because they alter the normal modus of the body and have a lot of collateral damage. These are two systems that you cannot fool around with or be careless about. This is survival stuff. When the body gets bloody serious about something. Don’t taunt it.
That’s why I eat for chronic neutral blood sugar levels.

For the bodily Stress Response I’m avoiding all the things that my body perceives as stressors. They can be as ridiculous as garlic, in-laws or warm showers. I’m not arguing with my body, if it’s bugged by it I avoid it. I use my high-sensitivity to check whether something is ok or not. This gets me results.

I’m addressing all the non-ME things that burden my body such as hormone shortages, a diet that provides level blood sugars and methylation-problems. These are not the cause of ME but I cannot heal if I don’t fix these. For these things I had tests done and am under doctor’s supervision.

That leaves the mysterious last piece of the puzzle: the ME-thing. The chronic thing that keeps causing problems.
Is it an intracellular parasite gnawing at my nerves or at my mitochondria? Is it some sort of unhealthy ANS-modus that my body has gone into and needs to snap out of? Is it a permanent eroding of the intracell signalling devices?
I don’t know. It’s the piece that prevents me from going from 80% to 100% health.
(My instinct says there’s an invader continually bugging my body. But my body can co-exist with it, if there are no additional stressors in my life.)

On May 1st 2014 I started Gupta Amygdala and taking 100mg oral micronized Progesteron every day, regardless of cycle. (I keep repeating: Progesteron is not a sex hormone. It’s an adrenal hormone and it’s a neurotransmitter.)

On May 2nd I started healing.

Understanding Gupta and practising it clicked everything into gear that day. On top of all the things I was doing right to address the other issues (food, posture, hormones etc.) I had found the thing to influence ANS. It relaxed at once and health was restored.

Healing is a slow process. I had to keep taking my rests. I had to pace myself very much. No weird foods. No sudden activities, even though I burst from energy.
Over the coming months I slowly build up my activity level and my stamina. Until I was at 80% health and could do anything I wanted and meet friends and take drives. I was thinking about work again, a career. (still not eating weird stuff etc., those things are changed for life)

Then in Spring 2015 my precious 80% health took a nosedive when two normal stress life events happened. Just normal things. It could have been anything (an accident, a robbery, falling pregnant, going through a divorce, getting married, death of a parent-in-law, moving house, graduating, etc. etc.) In my case the cat nearly died (10 days of extreme stress for us and months of fear and worries afterwards) and I had to write an engineer’s rapport for court to prevent a big manure plant happening right next to the cabin that is my place of peace out in the country. (as an engineer I’m not against plants or manure but the plant is not designed securely and the predicted odour emissions were not measured right). Writing was stressful as is participating in the judicial process that puts more weight on procedural integrity than common sense. Parties are not there to solve a problem together, which is an engineer’s point of view.

We’re now 8 months later and both issues are resolved (cat is healthy again; the rapport is at the highest court of the country and there’s nothing I can do anymore) and I’m severely housebound again. I’m at 40-45% health I think. I can leave the house once a week for groceries or I can meet someone (receive visitors or visit them) once every two weeks. I’m very wired and I react to all the small things.

But I didn’t fall back to bed bound nor the 10% health level where I was in 2008/2009. Nor do I have brain fog. I did have that awful experience with PMS-from-hell (PMDD) but that seems to have gone now too with Zinc-supplements.

Now I’m trying to get back into that relaxed mode I was in last year. Out of Fight or Flight.
Back to being friends with my body, back to embracing and carrying that small inner child that’s so afraid and feels so unsafe.
It’s frustrating that just thinking it doesn’t make it so. Getting out of wired-ness takes some time and practise. It’s not an intellectual mind-thing. You can’t plan it, you can only invite it.

But I’m sure I’ll get there again, into that pool of peace and ease. I’ve nearly never stopped doing all the things I need to do (all the personal signature things from point 1) so my baseline is still pretty robust.
I’m therefore confident that I will regain some health, now that the life events are dealt with.

Besides this future goal I’ve now experienced what happens when my system gets put under these kinds of life stresses again. It’s scary but I didn’t die and I don’t need to worry (much) about the future stress events that will surely happen in my lifetime.

What happens in my body and is not to be worried about is:
– my liver stops producing bile (this means a major waste removal pathway is blocked and nutrients aren’t being absorbed);
– my body usurps all kinds of minerals fast and from the lack of it I get depressed and even suicidal (PMS-from-hell and dopamine shortage caused because Zink was gone);
– I cannot focus (both eyes and attention);
– I cannot relax (both body and mind) (and therefor not digest my food properly).

This is all natural and won’t kill me. They do need to be addressed though because I cannot afford to undergo these things for long. That’s why attached to this post is a little reminder-note for myself. The things I need to do the next time life comes a’knocking.

I’m really confident about getting into that relaxed ANS modus again. Confident that I’ll get there and confident that it will heal me again.
On the ME forum Phoenix Rising I’ve been reading posts by James7a who recovered 100% and I’ve also been watching video’s by Neuffer who also recovered 100%.
They both practise according to my ANS working theory and they came up with their own version of it which makes their cases and experiences logical. I love logical. When things make sense.
I’ve also started reading on another ME forum called Health Rising which is more hopeful than Phoenix Rising and, amongst other things, collects recovery stories. There’s a lot of focus on the ANS there. And how to influence it even if this means deploying psychology-tools. But: psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

So I am going full throttle at it again too. Broad spectrum (addressing all the aspects of my life that need attention) and with special attention to getting the nervous system to calm the frick down.
Full throttle at a very slow pace.

Check out the short video’s James7a made on YouTube, telling about his illness and what he did to recover 100%. He’s a great, young British man who did it. He did it!
His video’s are short, 13 minutes and very natural (not rehearsed). And he makes his point very good.

———————————————————————-
just a little note to myself:
Next time a life stress event occurs such as moving house or death of a parent I will do the following regardless of where I am health wise:
– clear my calendar for the next six months;
– take all the minerals, take all the amino acids, take all the vitamins;
– drink salty water by the gallon;
– get massages or yawn and stretch like pets do and as often as pets do to help the lymph system to remove waste;
– eat gelatine by the bucket (cook chicken drumsticks in cocosfat and water, let cool). Gelatine is easily digestible, contains lots of amino acids and travels first through the lymph system instead of the liver;
– make chickensoup but also eat other things. Rotate.
– watch Bananaboy’s short videos again where he explains how he healed
– wear ear mufflers and rest rest rest a lot;
– remind myself I am safe. Here and now. I am.

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PMS from hell gone.

The past few months I got really bad PMS. PMS from hell.
PMDD. Weeks that I could not live alone because it was not safe. Because I was desperate and suicidal.

I knew it was all brain chemistry and not a chronic depression. As soon as my period started the cloud lifted and I was my happy normal self. But only for three days, the last two months. Three days after my period the cloud would descend again.

But knowing something has a chemical cause and dealing with the feelings/thoughts it generates are two different things. In the end it got too hard to manage the feelings and thoughts.

The weird thing was that my usual PMS can be managed by taking micronized Progesteron and/or Progesteron cream. I’m versed in that. I know how to work it.
I’ve had one bout of suicidal depression that was caused by a vit D shortage.
But neither one of those supplements helped this time. I was stumped.

Of course I did research and found the term PMDD, meaning PMS-from-hell. Including the suicidal tendencies. This rang true.
I looked up other people who have this and what works for them. One thing is that anti-depressants work instantly. Instead of the few weeks it takes to affect a chronic depression. With PMDD anti-depressants work instantly and you only need to take them a few days in the month.

The other suggestions I got were supplementing GABA, Lithium, St John’s worth, black bear spray, bh4 and 5htp.

I went to the doctor to get anti-depressants. This is tricky because I have a homozygous mutation for MAO A which means I already have an inborn MAO A inhibitor. Anything extra that blocks my noradrenaline receptors will have me bouncing off the walls for hours. Because I already have that tendency.

The doctor was very good!
He suggested that what I’ve been lacking these past few months is Dopamine:
neurotransmitter werkings

You all read Dutch right? The title is Function depending on Neurotransmitter.

Dopamine = attention; motivation; enjoyment; rewards.

Noradrenaline = alertness & energy

Serotonine = obessions & compulsion.

The three words in the middle read: interest; mood and fear.

The doctor must be right. There must be some sort of system where prolonged stress interacts with sex hormones (in their neuro transmitter role!) and depletes Dopamine in my head. An interesting thing to go look at.

Normally I have a healthy mix of the three. Although my Noradrenaline sticks around for too long because it’s destroyer MAO A isn’t very good. But otherwise I have a natural high Dopamine level.

He then talked me through the various anti-depressants that exist and on what neurotransmitter they have effect:
antidepressants overview

We chose an anti-depressant that affects Dopamine level, the best there is: Bupropion (this also is the only one that won’t affect libido)
It also inhibits noradrenaline but we agreed I should try it, in a low dose, to see how bouncy it makes me.

Dr. also suggested I use my sensitivity to assert if a pill was going to help me. Or even just carry it on my person instead of ingesting it.
Can you believe such a suggestion coming from a certified GP? That’s tailormade medicine right there. Fabulous!
I’d never thought of it but it is indeed something that works for me. I can sense whether something (a food) is good for me. Why not a pill?

He also mentioned the three things that improve mood:

  1. Zinc
  2. Krill oil
  3. Taurine

So that’s what I started taking. Taurine also soothes the liver which is a strained organ in my body. But it also contains sulphur which my body cannot handle very well (MTHFR/MTRR mutation)
The Zinc did it.

Whenever the dark cloud reared its head I just took Zinc and it went away again. It was amazing.
I hate when this happens, when a singular thing influences my mind so much and when it repeatedly proves it does and when I could have avoided suffering just by taking it earlier. And I hate the tiredness afterwards, when my body sighs in relief and needs time to recuperate. I hate when I wasn’t smart enough, resourceful enough, to stop this earlier.
I know I should be proud that I solved it and that I don’t feel so awful anymore. But the frustration is bigger at the moment.

So: no mental PMS/PMDD symptoms this month. I did not need to take any anti-depressant (but boy, am I glad I have them in my pantry. A good back-up whose presence eases the mind).

I’ve now had my period and we’re in day 4 of my new cycle.
Unhappiness is here again. But it’s very mild. I don’t think it’s related to the things above at all. The Zinc doesn’t attack it unfortunately.
It IS chemical though. I’m lacking something. Or have eaten something that poisons my brain. Could be the shrimp kroepoek? Or is the the stress of prolonged staying the city? The lack of chicken soup?

Either way I’m back on eating a clean diet again. No exceptions. With a brain chemistry as sensitive as mine, that’s the best thing to do.
I’m drinking a lot of (salted) water and taking enough hydrocortisone to keep my body out of stress.

And I’m re-affirming my body all the time that there is no reason to stress. We are safe. We are good. Relax. We are fluid and we are walking in the sunshine. Life is good. No worries.

(this is a solid approach to ease my Autonomic Nervous System which is at the core of my illness. More about that later.)

PS I stopped Valerian and also Progesteron pills the last week of the last cycle. Both might be energizing my system too much.

I took a Prog pill the other evening and laid awake again. Without it I sleep through the night. I do need the Prog cream for the current unhappiness though. This has always worked neurological for me so we’re back again at neurotransmitters and brain chemistry.