Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

[MeSci]

@MeSci
As for the base of the skull pain you probably know by now that for us ME peeps if we have pain that's a classic.
I'm sorry to hear if this is increasing for you.
I have no assess to much in the way of drugs and therapies but when this pain gets bad I just lay down and use an icepack and numb the crap out of it. Not an effective solution for long term relief but it dulls the pain at least for a while.

Also, the vibrator idea wasn't a bad choice to try. But it could have been too much.

I don't get much pain - sorry to hear that you do. I was just hoping to get more general improvement - or any improvement!

 

[Snowdrop]

Ah, yes. We seek it here, we seek it there, we seek it almost anywhere--that damned elusive improvement.

FWIW, my mother gave me a Dr Scholl's vibrating mat. You can lay on it and it will deliver various types of vibrating at points along the body. It was very enjoyable but ultimately had no real effect beyond that relaxing in the moment.

I have no idea of course if they are available on your side of the pond.

 

[MeSci]

Ah, yes. We seek it here, we seek it there, we seek it almost anywhere--that damned elusive improvement.

FWIW, my mother gave me a Dr Scholl's vibrating mat. You can lay on it and it will deliver various types of vibrating at points along the body. It was very enjoyable but ultimately had no real effect beyond that relaxing in the moment.

I have no idea of course if they are available on your side of the pond.

That's OK - thanks. There are plenty of other places to try with the massager/vibrator - maybe there is a magical 'sweet spot' (no, not that one!).

I'm really not that bad compared to many. Just want to be better. Who doesn't?

 

[natasa778]

From the pubmed search VNS link you posted earlier @JaimeS ... some very interesting stuff!!

VNS for epilepsy is well known, and now this very new (but well publicised) arthritis application, but I had not idea it is being used/trialled in conditions like:

• major depression
• traumatic brain injury
• chronic migraine
• Anti-NMDA receptor encephalitis (how about that!!)
• memory boost in the elderly (I really must get hold of that device!)
• heart failure

or how about this rat study (most others were human ones

LPS can lead to sepsis-associated encephalopathy in rats. It was shown that electrical stimulation of the vagus nerve can activate anti-inflammatory effect through cholinergic pathway, and improve the cerebral function, and inhibit the development of sepsis-associated encephalopathy by reducing systemic and cerebral inflammatory reaction.

 

[JaimeS]

@natasa778 - I do think it's a promising palliative treatment anyway. I didn't want to 'go' here, but, uh, certain 'personal' items might be able to deliver a shock at the right intensity?

-J

 

[natasa778]

@natasa778 - I do think it's a promising palliative treatment anyway. I didn't want to 'go' here, but, uh, certain 'personal' items might be able to deliver a shock at the right intensity?

-J

uh, huh. (best tried with soft seventies music playing in the background)

 

[JaimeS]

uh, huh. (best tried with soft seventies music playing in the background)

I believe 'bow chicka-bow-bow' is the official term.

 

[MeSci]

@natasa778 - I do think it's a promising palliative treatment anyway. I didn't want to 'go' here, but, uh, certain 'personal' items might be able to deliver a shock at the right intensity?

-J

You mean vibrators? That's what I was talking about. But it's not really a shock, is it?

 

[Jonathan Edwards]

Also a surprisingly difficult thing to search for. I ended up on "how far do cytokines travel?" but it still didn't yield much.

I was surprised to see that this primer listed cytokines as autocrine, paracrine, or endocrine, meaning the affected body system is some distance away. Also, it may be old news to many, but here is actually an excellent primer on cytokines in general:

Inflammatory Cytokines in Non-Pathological States

Very good because it makes it clear that there is no clear-cut distinction between pathology and non-pathology - 15 y.o., so it may not be entirely accurate, but it's a good beginner's resource for someone like me who has been getting this info piecemeal and needs to patch in the rest!

-J

Cytokines can work through the circulation, as has been mentioned for IL-6. If you have inflammation in your big toe with gout there is enough IL-6 getting to the liver to make your CRP go up.

However, quite a lot of cytokine action is very local indeed. B cell aggregates in lymph nodes form because of a local cytokine environment that is less than a millimetre across. In fact a lot of TNF operates directly from secreting cell to receiving cell through surface contact. So in some cases cytokines are operating at the micron scale. Cytokine receptors on nerve are presumably there to pick up local cytokine levels indicating where the problem is. That is likely to involve a range of a millimetre or so, maybe a bit more but not much.

 

[lansbergen]

However, quite a lot of cytokine action is very local indeed. B cell aggregates in lymph nodes form because of a local cytokine environment that is less than a millimetre across. In fact a lot of TNF operates directly from secreting cell to receiving cell through surface contact. So in some cases cytokines are operating at the micron scale. Cytokine receptors on nerve are presumably there to pick up local cytokine levels indicating where the problem is. That is likely to involve a range of a millimetre or so, maybe a bit more but not much.

That brings me to in my case at least part of the problem is perifere. Improvement of muscle/nerve symptoms go millimeter by millimeter.

 

[JaimeS]

You mean vibrators? That's what I was talking about. But it's not really a shock, is it?

LOL, no. I'm referring to a 'wand', which is a device that delivers tiny (or not-so-tiny) electric shocks, and is used... in the bedroom. Due to its traditional use, it's been tested on people, and may be cheaper than getting an actual medical device. But I don't know. Start low and go slow?



I think this is the most unusual suggestion I have made on here. Go for electroshock! Try it at home!

-J

 

[Violeta]

Has anyone tried treating the infection so that the vagus nerve starts to work right on it's own?

 

[MeSci]

LOL, no. I'm referring to a 'wand', which is a device that delivers tiny (or not-so-tiny) electric shocks, and is used... in the bedroom. Due to its traditional use, it's been tested on people, and may be cheaper than getting an actual medical device. But I don't know. Start low and go slow?



I think this is the most unusual suggestion I have made on here. Go for electroshock! Try it at home!

-J

Shows how long I've been out of circulation - never heard of these.

I tried a search on Amazon and all I have found so far is vibrators. I searched for 'electric wand'. Can you give me a link to one so I can see what you mean?

 

[JaimeS]

Shows how long I've been out of circulation - never heard of these.

I tried a search on Amazon and all I have found so far is vibrators. I searched for 'electric wand'. Can you give me a link to one so I can see what you mean?

I'll search around.

Ah, apparently it's called a violet wand. You could try searching that phrase?

...huh. They may NOT be less expensive than purchasing a medical device.... but they still might be more versatile, since you can adjust them to higher or lower settings depending on your level of pain. The medical device I saw had one setting, and was designed to die when you'd used it a certain number of times. After that, you had to ditch it and purchase a new one (neat trick, and a great way to keep you purchasing/going back to your doctor). The kinky toy may be more cost-effective in the long run!

(I'll take 'Sentences you Never Hear on PR' for 200, Alex....)

www.violetwands.com actually exists as a thing. Looks like they have a wide variety of... options. Probably someone who wanted this for only medical reasons should look here: http://www.violetwands.com/main-virtuemart/violet-wands.html

-J

 

[JaimeS]

Has anyone tried treating the infection so that the vagus nerve starts to work right on it's own?

I think we were here earlier, right? Treat the infection. But sometimes that does not seem to work out; and I think this is why there are people who say the 'initial insult' doesn't matter - they think because abx are so ineffective so often, the disorder must be due to post-infective immunological abnormalities rather than actual lingering (bacterial) infection.

I don't think there's compelling evidence that this is the case, but it does appear to the case that anti-infectives seem to help rather than cure PWME.

Anticipating discussion, there is evidence that generally-used abx can cross the BBB. That last link is really awesome, and discusses anti-viral medications and immunomodulators used in HIV as well as abx. Though... perhaps the abx PWME are prescribed are not always the ones that are most penetrative to the CNS, if their physicians don't consider a CNS infection a possible cause of symptoms.

[Sorry, edited this one like 5x!]

-J

 

[lansbergen]

Treat the infection.

For that you must know which infection it is,

Further more for the infection I suspect there is no known treatment. So the only thing I could try, is help the immune system fight it. That seems to help but is a long yourney.

 

[JaimeS]

That brings me to in my case at least part of the problem is perifere. Improvement of muscle/nerve symptoms go millimeter by millimeter.

Leukocytosis? Is that what you mean by perifere?

-J

 

[bertiedog]

For me I need to be distracted from my body in order to relax, so any techniques that require you to focus on any aspect of the body are no good. It's because the body is so uncomfortable, even though not in pain. All the flutterings, sweats, involuntary muscle twitches and contractions, itches, etc., mean that I am with whoever it was who said something about preferring to be a disembodied spirit! I'm OK focusing on visual things though, including what may well be illusions that I can perceive when my eyes are closed. I also find that listening to the radio sends me to sleep, or reading.

I am exactly like this and have been for many years. I remember thinking meditation might be helpful and trying it o many occasions but it used to make me worse, I used to be so dizzy and disorientated with it and way more anxious. BTW that was in the 80s and it is a lot better now since being on a steroid for adrenal function and dessicated thyroid but its still not really helpful say if I cannot sleep. The radio or a relaxation CD with music works much better.

Pam

 

[lansbergen]

Leukocytosis? Is that what you mean by perifere?

-J

No, the opposite of central.

 

[Violeta]

I think we were here earlier, right? Treat the infection. But sometimes that does not seem to work out; and I think this is why there are people who say the 'initial insult' doesn't matter - they think because abx are so ineffective so often, the disorder must be due to post-infective immunological abnormalities rather than actual lingering (bacterial) infection.

It's probably not a bacterial infection then, and if the infection is viral, antibiotics might make it worse.

Does no one know how to treat autoimmune diseases naturally?