Found my train of thought: intracellular parasites

I lost the plot in this post about theories of ME  but I found it again.
First I want to say: I’m dropping the “CFS” term. It’s too close related to adrenal problems and besides that people tend to think that fatigue is the main issue to be overcome. It’s a small step to then start talking about remedies that work somewhat for that other “fatigue illness”: depression. And before you know it laymen and experts alike are talking about having to increase exercise or do psychotherapy to heal from ME/CFS.

Neither depression nor ME is fixed by these two options. Especially exercise will make ME worse.

Well, let’s move on to the train of thought:

1. body is an ecosystem
2. we have numerous cohabitants on board (bacteria, virusses, worms and bugs).
3. with some we co-exist to mutual benefit (mitochondria, gut bacteria). Some are parasites (rickettsia, legionella, EBV, HIV, tape worms).
4. Parasites dwell in numerous places in the body (eyes, throat, intestines, lungs, blood, cells).
5. let’s focus on intracellular parasites. These buggers live in human cells. Destroying them to get ahead. (malaria, HIV, Chlamydia, Lyme)
6. These destructions have eerily familiar aspects of ME: incapacitating the vit D receptor; dismantling the mitochondria for spare parts; low T-cell count; immune system out of whack.
7. some ME experts have success by giving patients long term anti-biotics. They now think ME is a disease of intracellular parasites (dr. De Meirleir, Marshall protocol, dr. Jadin)

I’m going to take a new fresh look at my health. Unravel the various aspects that coincide and then focus on the ME part.

I then might find it beneficial to have some tests to find out what bug is present in me. I’m sure there’s some. I’ve been bitten by ticks and fleas in my life and my ME onset was sudden and flu-like (a few weeks after visiting a lambing herd that turned out to have Q-fever).

Besides, nearly everybody has EBV.
My cat has had conjunctivitis for 6 months now and it’s the type that reacts to the anti-biotic for Rickettsia and Chlamydia Pneumonia. I’m sure I’ve been in touch with them.

I may go to dr. De Meirleir. He’s in Belgium. Only it’ll cost well over 3000 euro for the fist visit + lab tests. I’m not ready to pay that :(
After that he’ll propose long term anti-biotic courses. I’m not ready for that either.

I wonder if there are other ways to fight intracellular parasites. Perhaps change the environment they live in (the cells). Perhaps aid the immune system. I have no idea. For this I first need to learn more about intracellular parasites and how they live.

It’s a nice topic of research, to keep me occupied. I need such a topic because moodwise I’m not well and diverting troublesome energy to such a topic is a good habit.

 

the reason to live.

I did find the one reason to keep on living, a few weeks back. I’ve been test driving it and it works for me.

It’s because you provide a unique colour to the palette of humankind. A colour only you can provide. A colour your friends and your acquaintances would sorely be robbed of, if you took it away.

pic by Neil Gould

I got the idea from this Dutch post by Jacob Jan Voerman, written to a friend of his whom decided to retreat his internet presence.

“I’m taking myself off line because I’ve said all I want to. Anything else will just be a repeat”.
Jacob Jan writes to him that the crux of his internet presence is not the content he provides, it’s his mere presence. The unique colour he adds to the palet of the world. Of human kind. Of his friends.

I was very much comforted by this thought. I do provide something unique and it doesn’t require any effort on my part. Just being me is enough. Just showing myself a bit, on the internet, towards friends.

It has comforted me in times when I want to end this life because the pain has become unbearable. It did a couple of weeks back. I was driving home after having exerted myself beyond my abilities and running low on vit D and Progesteron to boot.
The pain, this life, it became unbearable.
Luckily I knew it was chem-induced and that it probably would pass if enough time flowed by. But the pain and this life, in which I have to manage this all while being crippled by the illness in a world that works in logical ways where decline is inevitable and love and beauty is only found in short vulnerable bursts, became unbearable. No longer worth it.

pic by Asif Akbar

I’m living in limbo now. Still shell-shocked from that episode.
I’m not about to commit suicide on an impulse but I’m clearly finished with the life I’ve lead up until now. It’s no longer acceptable. Something’s gotta give. And something will.

When friends and loved ones try to convince someone that life is worth living because they love him/her it always struck me as a selfish argument. Why should the tired-of-life-person be asked to keep on enduring the pain? Because you’d miss him/her? Because you’d get a hole ripped in your heart? What about the tremendous pain that person endures, day after day, minute after minute?
“Because we love you” is not the right thing to put on the scale.

“Because you are unique and you add something unique to our world” works better. At least for me.

What it also gives me is a sense of self worth.
Me becoming more ill every week it seems has send my dreams out of the window of a career. Artist; illustrator; engineer; writer; landscape designer. Anything I’ve talked about on this blog is not going to happen.
I cannot sit up straight long enough. I cannot hold my thoughts together long enough.

I’ve cried about this loss and I’m just about accepting it now. It gives me some peace of mind, that I can now finally let go of all ambitions that took hold in me.
I can let them go because I’ve found something else to connect my self worth to. Something that does not require any sitting up right or keeping my wits about to be for-filled. By just being myself and just sharing my unique colour with my friends and (internet) acquaintances I am worthy. Living a worthy life. Something to be proud of. Someone to be proud of. Even when I’m “doing nothing”.

pic by Neil Gould

(btw, I’m discovering a whole new array of beautiful and touching moments in “the limbo live”, where I no longer strive and strain for results.)

New theories on ME/CFS

The body is an eco-system. I visualize it as the Great Barrier Reef, with all kinds of species crawling about and living in nooks and crannies.

 pic by Vincenzo Piazza

There’s all kinds of bacteria and virusses living about our bodies. The imune system picks out the obvious offenders but it’s still pretty much a Wild West scenario where bad boys run and hide and the killer T cells hunt them down. Remember that awesome little movie of that white bloodcell gunning for a lone bacterium?
That’s how they get them, one at the time.

Unless there’s a full invasion getting on, then the whole body response is needed and the place is set afire (fever) to exphixiate the culprits. With considerable damage to the furnishings but hey, the goal justifies the means.

Here now are 3 theories of ME/CFS building upon this image:

1. infection makes it literally impossible for the ecosystem to function normally. This is every infectious illness you can think of. It hinders bodily processes. Solution = eradicate the infection.
2. infection induces the body wide Sickness Behaviour Response not because it’s a body wide infection but because it bugs the very wiring that tells the brain to engage in the body wide response. This would probably be the Nervus Vagus, its cells infected by a particular invader and thus thinking the whole body is under attack. Solution = get rid of bugs OR block this signalling to the brain
3. this constant battling against invaders tires and strains the system so much that the very stress of the situation hinders its function overall. Since the ecosystem cannot be rid of its occupants a solution could be to teach the system to learn to live with it without assigning stress to it. Probably on a less intense level of life then that’s advertised. Solution: stress management aimed at the CNS and its brain components in particular.

It’s also possible that infection occurs in a particular part of the body that induces the very symptoms of ME/CFS. One such part are the endothelial cells that line every blood vessel in the body.

….

I’ve lost my train of thought. grrr

…

here’s the research paper on infection of the Nervus Vagus in relation to ME/CFS: http://www.pdf-archive.com/2013/06/23/vanelzakker-vnih-cfs-in-press/vanelzakker-vnih-cfs-in-press.pdf

here’s the post on infection of the endothelial cells: http://forums.phoenixrising.me/index.php?threads/what-is-the-mechanism-of-fatigue.38556/#post-616737

 

 pic by Mark Morcom

 

Don’t eat much.

1. I preserve so much energy when I eat sensible (small portions of dense nutrient foods such as just 2 egg yokes for breakfast).
2. Survivor Man Les Strous doesn’t find a whole lot to eat when he’s out in the wild.
3. it’s berry time around my cabin, nature is giving! From this natural environment I get maybe 5 ripe berries a day… That’s not much.

1 + 2 + 3 = people were not made to eat all day every day. Certainly not in the portions we have at our disposal.

pic by Shannah Pace

Which is why:

4. sugar makes you fat and gives you diabetes. “Sugar” includes modern fruits, honey, wheat products, fruit juice and milk. Any amount over what you can balance on one finger will spike your blood sugar.

5. when you eat more than the size of your fist (or even half that) you’ll keep wanting more. You’ve activated your insuline system. This is a biological system that’s very hard to counter with sheer willpower.

The solution is to eat small portions of dense foods. Never raise blood sugar. Never go hungry.

I imagine a hunter gatherer’s daily collection: 5 berries and a small rodent.
pic by KateKrav

What will he do all day once he’s fed?
Sit around. Enjoying the view. Relaxing. Sleeping. Socializing. Thinking things.
Pretty much what the cat does, except for the thinking.

Can it be that we’re meant to do just that? That our bodies were made for searching food and, once found, to relax? To enjoy our brain a bit but not to the extent we pummel it today, with news and coffee and career schemes and games.

It certainly feels like my body was designed for having a little food and having a little lie in.
The problem is: what to occupy the mind with?

(I suspect we have drifted away from the original use in this also. We are addicted to the mental pummeling just like we are addicted to sugar and lots of food.)

hmmm.