ME/CFS "theory of everything"/etiology

[frozenborderline]

There are clinics in Mexico if you can crowfund a few grand perhaps gets some treatment for mold,biotoxin,heavy metal detoxes

I dont know if there are any doctors I trust with this stuff. Most chelation can be done DIY. I might pay tons of money if there was a treatment like stem cells that I couldn't diy but I'd rather use the money for peptides I can inject myself or palliative care or mold free housing or trailer

 

[frozenborderline]

Debrored i like your ideas

The stuff you talk about mirrors some of Dr Klinghardts works in some ways.

There are clinics in Mexico if you can crowfund a few grand perhaps gets some treatment for mold,biotoxin,heavy metal detoxes

https://www.sanoviv.com/about-sanoviv/

Yeah I hear you on the cci and brainstem.Seems like
you have some objective clues towards elements that may be contributing and cause your ME.

Are you considering getting the CCI surgery?

Yes considering it strongly, but I have to get additional imaging to make sure I didn't get lower cervical instability

 

[Rufous McKinney]

will try and find the fingerprints stuff

One of the more recent studies verified - the fingerprint issue. Its discussed in another thread someplace.

Some other study found the capillaries feeding fingernails to be compromised. My nails are awful, splits, etc.

I no longer can trigger the DMV thumb prints and i don' t know what is going to happen in customs, next time.

Hows this for a symptom- my right side is more ill than the left. My right nipple has- largely disappeared and inverted. It would seem there is some more extra collagen, at that location, possibly now missing.

A thread on some male troubles- I suggested they might wish to consider the collagen disappeaance- there.

I've lost weight including fat stores. It seems like some of the body tissue- like the padding on the hand and feet, that this may include some more collagen. Its all just- very thin and weakened. So like cutting vegetables- difficult, it hurts my hand. Standing long, my heel will- feel impaled.

So the fingerprints- they are somewhat sort of still there on the skin but the finger tissue itself is so collapsed that its covered in folds and wrinkles and my fingers dent from typing.

There is little or no padding to sit on any longer. Sitting on hard chairs is very painful.

 

[Wishful]

But there could not possibly be a return to full health in minutes for some of us who- have been ill with versions of this for decades. My fingerprints do not- seem to reappear.

Okay, maybe not a full return to pre-ME state. ME might cause some long-term effects in some people, such as lost fingerprints. Someone confined to a bed for many years wouldn't suddenly have full muscle fitness restored.

For me, my temporary remissions were an abrupt switch of state. I'd be feeling my normal ME symptoms, and then I'd feel fully healthy and bouncing with energy, No gradual reduction in symptoms; an abrupt switch. I think the switch back was a bit more gradual, but not by much. IIRC it was just that at some point I'd realize that the remission was over, and I was back to feeling lousy. Very depressing, that realization.

The point of these remissions for testing theories is that it rules out theories that involve slow changes, such as whole-body accumulation of heavy metals, or microbial infections. Now that I think about it, it seems likely that the core dysfunction of ME is quite localized, perhaps to a small region of the brain. Some major whole-body-affecting glands are just tiny clumps of cells in the brain. A fairly small change in immune function, for example, could cause a large-scale switch of state.

 

[Wishful]

Some other study found the capillaries feeding fingernails to be compromised.

My nails are okay, but a couple of times a year I develop abscesses next to my nails. I assume that there's not enough blood flow in the tissue beside the nails, so it becomes necrotic, and a painful bubble of pus forms. I poke around with a needle (not many pain sensors there either) and eventually some disgusting pus comes out, and then it heals up. I'm pretty sure this occurred pre-ME too, so I can't blame it on that.

 

[Wishful]

I no longer can trigger the DMV thumb prints and i don' t know what is going to happen in customs, next time.

You're obviously a major international criminal hiding your fingerprints. Seriously, before travelling, you might want to contact some agency (not sure which one) and ask whether that might be an issue, and maybe they'll ask you to have your doctor send in a letter so that you can be flagged in some database as "Yes, this person has no fingerprints, but she's been checked out and seems okay," Otherwise it could take an annoyingly long time to clear up the matter.

 

[Rufous McKinney]

ME is quite localized, perhaps to a small region of the brain

Thats something I think is quite likely. You have this highly complex and likely compartmentalized lower brain stem and localized compression- well you could just be- impeding function in some very localized area that does one thing in one person and expresses in a different area in another.

I ponder "remission".

The other day, I had sort of the alignment of having more energy on that one day. I was on the toilet and actually had the thought- I do not feel sick right now at this moment.

so I have moments. But all that is more or less tied to the daily cycle of sypmtoms and that moment wasn't remission, it was just- the 1-2 hour window of- feeling slightly ok.

Meanwhile, left knee not working today. You just wake up , get up, and then- assess-what body part is going off now.

 

[Rufous McKinney]

You're obviously a major international criminal hiding your fingerprints.

Six attempts I got my thumb to trigger the machine at Station 1. But then it would not trigger at Station 2-5. And then the computer test on the touch screen won't work either. And then the test had to be tied to the thumbprint so they had to do it 8 times. Then they gave up but somehow I got out of there having passed the test.

Customs- the customs floor- they now have this thumb print machines. And on the customs floor, cell phones are blocked. We were abandoned for over an hour with a bunch of other grandparent types- waiting for wheel chair assistance that was unavailable. So you can't phone the people who are coming to pick you up. You can't tell them whats going on (I am captured in Customs).

So if I am captured there- it does really worry me so, YES: I shall before I ever do that one again, get a letter from my doctor.

 

[Rufous McKinney]

Okay, maybe not a full return to pre-ME state. ME might cause some long-term effects in some people, such as lost fingerprints

So I decided to read up on: these skin layers.

This is such a fascinating topic- I'm rather blown away.

Wikipedia- has a nice write up on the Dermis (layer below the epidermis)...and diagrams.

FINGERPRINTS- are eruptions of the dermis inter penetrating the epidermis. That produces dermal ridges which are the fingerprints we refer to.

And all that tissue- its MAJOR COLLAGEN. MAjor Connective Tissue. Its communicating, innervating, nutrients etc.

Padding the body. Loss of this padding- major deal in my ME body at the ripe age of 67.

Then there is the wrinkling issue when we are submerged. I already don't remember that one. But the other nite, I just could not begin to get over what the bottom of my 14 ;month old healthy grandaughter's feet felt like in the bathtub.

The wrinkling and ridges are so intense (she was only in there for about 10 minutes)...I thought I'd picked up a gecko or something.

These epidermal ridges are more pronounced in the monkey relatives, apparently.

 

[Wishful]

I ponder "remission".

A true, if only temporary, remission is unmistakable, or at least that's how it was for me. It was an abrupt switch back to full health. I'm not sure if the 'bouncing with energy' (otherwise knows as 'Tigger mode') was really abnormal energy or just normal levels that felt so wonderful compared to the ME state. Ohh, I soooo miss Tigger mode.

 

[frozenborderline]

https://walkerstorz.com/me-cfs-etiology/

 

[frozenborderline]

Please anyone, I have more ideas for this etiology , I feel as though I'd recentoy cracked the fundamental problems of me/cfs, but I need help. Someone less sick then me I need help with transcribing and organizing my thoughts and even finding some references. Is anyone up to that task? If anyone believes even partially in this theory I beg you for your help

 

[frozenborderline]

https://walkerstorz.com/me-cfs-etiology/

@Jackb23

 

[frozenborderline]

The point of these remissions for testing theories is that it rules out theories that involve slow changes, such as whole-body accumulation of heavy metals, or microbial infections. Now that I think about it, it seems likely that the core dysfunction of ME is quite localized, perhaps to a small region of the brain. Some major whole-body-affecting glands are just tiny clumps of cells in the brain. A fairly small change in immune function, for example, could cause a large-scale switch of state.

Doesn't really rule out microbial issues. Toxins may involve long term exposures that sensitize one to them and then a dauer like state that is protective against them. Hence it may be possible to somehow break out of the hypometabolic state quickly. There's so much that we don't know.

However I never intended my theory to explain every single me/cfs case. Probabkyany theory aiming to do that will end up being too broad and not parsimonious enough

I will say I've experienced quasi remissions that are not long lasting from various treatments , where I get a glimpse at what health feels like , for a second , sometimes minutes or hours. That's complicated to explain tho, although it is undeniable, it is not a full return to health. Its dramatic tho and definitely not some placebo thing.

I reckon there may be some sort of near permanent changes many of us have, especially the most severe, whether its cci or some sort of metabolic trap , and I reckon lots of the pathology converges around the brainstem , whatever the upstream or first causes are.

One has to keep an open mind . I used to think that alk of the metabolism related theories were most important and now I am more convinced by my theory that cci and mold toxicity induced inflammation are upstream. It may be overly optimistic , or pessimistic. None of us can claim to know what the cause is. I am hopeful that the polybio foundation. And van elzakker will get closer than others have, tho