Dr Markov CBIS Theory of ME/CFS - General Discussion

[Hip]

I just found an otolaryngologist online who makes an anti-fungal nasal spray. After 2 days there it some relief but it could well be coincidental.

In my experiments with a homemade antifungal and anti-biofilm nasal spray, prepared to Dr Brewers specifications, I found a significant Herx effect, which perhaps suggests I do have some sort of infection or dysbioisis going on in my nasal and/or sinus cavities.

I stopped using this spray due to the Herx, but I want to try again with a much lower dose, going more slowly.

 

[Hip]

Is priming an overreactive state?

Essentially yes.

If immune cells like the microglia in the brain encounter an infection (or exposure to LPS endotoxin, which they see as an infection), afterwards they become more sensitive to responding to any subsequent infections.

So if you have LPS in your bloodstream, it is possible that this sensitizes microglia, such that when the microglia encounter a viral infection, they react far more strongly than they normally would. An overview of immune priming in this post. Immune priming has been proposed as an explanatory theory of ME/CFS.

 

[Mrparadise]

@Hip Thanks a lot for your explanation!

 

[hb8847]

If immune cells like the microglia in the brain encounter an infection (or exposure to LPS endotoxin, which they see as an infection), afterwards they become more sensitive to responding to any subsequent infections.

Interesting you mention this. Another area on this site is Mast Cell Activation Syndrome (MCAS), a known cause of CFS.

Definition of Mast Cells:

Mast cells are long-lived tissue-resident cells with an important role in many inflammatory settings including host defence to parasitic infection and in allergic reactions. Mast cells are located at the boundaries between tissues and the external environment, for example, at mucosal surfaces of the gut and lungs, in the skin and around blood vessels. Mast cells are key players in the inflammatory response as they can be activated to release a wide variety of inflammatory mediators, by many different antigens including allergens, pathogens and physiological mediators.

And MCAS:

Mast cell activation syndrome (MCAS) is one type of mast cell activation disorder (MCAD), and is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms

MCAS is a relatively newly "discovered" illness, is difficult to formally diagnose, and recently I have read reports that many experts think it might be considerably more prevalent than was previously assumed.

My understanding is that doctors think the Mast Cells are being excessively triggered by something, and that the immune response that follows is what causes symptoms. These can vary greatly but often include CFS, food intolerances, gastrointestinal issues, skin issues, and cognitive/mood symptoms, all of which are common symptoms on this site. It's even been suggested there might be a link between MCAS and Long Covid.

I was formally diagnosed with MCAS earlier this year, so in my case at least it's pretty sure that my CFS is being caused by my immune system being "over-triggered" by something, probably mould or bacteria endotoxins. It wouldn't surprise me at all if there was another issue to do with microglia or if the two are linked.

 

[seamyb]

but I want to try again with a much lower dose, going more slowly.

Will you start a new thread for this Hip? I'd be willing to try this with you as I am pretty sure there's something going on with my sinuses and it's pretty central to my illness.

 

[seamyb]

@Hip only just saw you'd tagged an existing post. Great stuff.

 

[Hip]

Another area on this site is Mast Cell Activation Syndrome (MCAS), a known cause of CFS (and something I have been diagnosed with).

It's possible MCAS may be playing a causal role in ME/CFS, but that is for future research to prove or disprove. Same with all the other factors: viruses, gut issues, mold, etc. These are all linked to ME/CFS, but not yet proven to cause ME/CFS.

 

[Sushi]

In my experiments with a homemade antifungal and anti-biofilm nasal spray, prepared to Dr Brewers specifications, I found a significant Herx effect, which perhaps suggests I do have some sort of infection or dysbioisis going on in my nasal and/or sinus cavities.

I stopped using this spray due to the Herx, but I want to try again with a much lower dose, going more slowly.

Since Nasobiotex (L Sakei) works for me I'm pretty sure that my nasal/sinus cavities have dysbiosis. Let us know how your trial with a lower dose goes.

 

[Hip]

Since Nasobiotex (L Sakei) works for me I'm pretty sure that my nasal/sinus cavities have dysbiosis.

I forgot about the Lactobacillus sakei probiotic for the nose. I am glad you brought it up. I made a note years ago to try it, but never got around to it. I wonder if such a probiotic would work well in conjunction with one of Dr Brewer's biofilm-busting nasal sprays.

 

[Sushi]

I forgot about the Lactobacillus sakei probiotic for the nose. I am glad you brought it up. I made a note years ago to try it, but never got around to it. I wonder if such a probiotic would work well in conjunction with one of Dr Brewer's biofilm-busting nasal sprays.

Good question, but since you can only "paint" the inside of the nasal passages about once a week with L Sakei, to keep it effective, you might be able to rotate it in. It works really well for me for a day or two and then the effects wear off--though I have not been systematic in using it on a schedule. This is a good reminder to be systematic about it.

 

[hb8847]

It's possible MCAS may be playing a causal role in ME/CFS, but that is for future research to prove or disprove. Same with all the other factors: viruses, gut issues, mold, etc. These are all linked to ME/CFS, but not yet proven to cause ME/CFS.

Sorry, I meant to say that MCAS is known to cause extreme fatigue as a symptom. Source.

Abstract: ...It is a clinical experience that patients with mast cell disorders suffer from fatigue, but there is a lack of scientific literature on the phenomenon. We performed a controlled study of fatigue in mastocytosis patients and document a 54% prevalence of clinical significant fatigue.

As for whether that fatigue is the same was what most people experience as CFS, who knows. But I don't think it should be ruled out.

Here is a paper which talks about the link between MCAS and microglia:

Inflammation is a complicated immune process that involves numerous components depending on the tissue and trigger [198]. The specific role of cytokines in inflammation of the brain is still poorly understood as these ‘danger signals’ [45] are now divided into three different groups: (a) inflammatory cytokines, (b) alarmins, and (c) stressorins, with distinct patterns of secretion and biological properties [199]. Innate immunity of the brain involves primarily microglia [200], which communicate with mast cells [201,202]. Mast cell-derived mediators, such as histamine and tryptase, can activate microglia [203] leading to secretion of pro-inflammatory mediators including interleukins IL-1β, IL-6, and TNF, known to be increased in the brain of children with ASD [204]. Mast cells are found in the brain [205], especially the hypothalamus, thalamus, and third ventricle [206,207]. Mast cells are also found in the pineal, the pituitary, and the thyroid glands [3].

So, with MCAS, what we have here is an immune system condition which has only recently been discovered (within the last 15 years), which is hard to diagnose, and is widely underdiagnosed. We know it triggers extreme fatigue as one of it's symptoms (as well as many others that are commonly experienced by sufferers of CFS). We don't know what causes it, but it's suspected that this condition is triggered by excessive endotoxins in the body, typically from an imbalance of gut microbiota or mycotoxins.

My reason for mentioning this is because to me this seems to tie in a lot with what many posters here are proposing to be the cause of CFS, namely an immune system reaction to excessive endotoxins.

 

[Hip]

Here is a paper which talks about the link between MCAS and microglia:

Interesting. Maybe MCAS could be a route into ME/CFS for a subset of patients.

 

[Mrparadise]

If I remember corretly, I have heared about people with ME/CFS and/or long covid which got better using antihistamines daily. Maybe this could explain why. On PR though, I do not think that many were helped by antihistamines (at least not regardring their ME/CFS symptoms).

 

[Martin aka paused||M.E.]

If I remember corretly, I have heared about people with ME/CFS and/or long covid which got better using antihistamines daily. Maybe this could explain why. On PR though, I do not think that many were helped by antihistamines (at least not regardring their ME/CFS symptoms).

You're right. It didn't help me

 

[Alvin2]

We do have lots of different ME/CFS hypotheses and empirical observation, and maybe each provides a partial truth or partial perspective on the nature and pathophysiology of ME/CFS.

So the trick is joining all the dots, and coming up with a theory that synthesizes all these different perspectives into a coherent whole (and throws out the red herrings; there are always red herrings in science).

The immune priming theory of ME/CFS, which I mentioned earlier, could nicely tie together the viral hypotheses of ME/CFS with the bacteria/mold dysbiosis hypotheses (bacteria or mold in the gut, nose or kidneys).

When you look at things from an immune priming angle, all of a sudden, the viral and the bacterial/mold perspectives, which normally seem contradictory, come together into one theory.


Not saying the immune priming theory of ME/CFS is necessarily right, but it is an example of how a theory can take the disparate empirical observations of ME/CFS and string them together into a possible theory.

That's the basic methodology of science: looking at all the disparate empirical observations, and trying to come up with a theory where everything fits into place.

A consensus theory is not what we need, taking everyone who has an idea and melding them into a grand theory is just going to end up with scientific sounding gobbledygook.

This thread is by someone who treats everyone with many (if not every) disease with the same treatment, as i said earlier, when your a hammer everything is a nail. We get similar nonsense from so many others, lots of anecdotal evidence, grand proclamations, self assuredness and so forth.

We reject things like psychosomatic theories becasue they are junk, again a bunch of psychiatrists shoehorning their knowledge into an anchoring bias diagnosis. Hell they do the same thing to covid and have done the same thing to diseases like Narcolepsy, "hysteria", LGBT identities and more.

Narcolepsy is actually a mirror to ME in many ways, the psychosomatic brigade lampooned them, people believed it since they had nothing better, there were lots of neurochemical abnormalities but none of it made any sense and many seemed contradictory and it finally took the discovery of a new molecule in the brain that was unknown to science to figure out what the disease is and it explained all the downstream effects after a great deal more research.

We don't take homeopathy and psychology and add them to our consensus theory becasue they are bunk. Similarly this theory is silly, the author is using what he knows and built a house of cards around them.

That said someday someone will find something that is right, and dismissing everything out of hand will end up with throwing out the baby with the bathwater. So its more reasonable that any theory has to be robustly demonstrated with scientific evidence, peer review and third party replication and not the good word of someone who has a superiority complex.

BTW a little humour (and no offense meant), this clip comes to mind in regards to consensus theories:

All that said i had not heard of autovaccines till this thread and it actually has interesting implications in fighting antibiotic resistance, in theory this could be used for antibiotic resistant bacteria if we don't come up with new antibiotics soon.

 

[hb8847]

If I remember corretly, I have heared about people with ME/CFS and/or long covid which got better using antihistamines daily. Maybe this could explain why. On PR though, I do not think that many were helped by antihistamines (at least not regardring their ME/CFS symptoms).

@Martin aka paused||M.E. I'm not saying you or anyone here has MCAS but it's worth noting that there are many chemicals released by Mast Cells, histamine being only one.

Antihistamines do nothing for me either but I definitely have MCAS (and CFS).

 

[hb8847]

A consensus theory is not what we need, taking everyone who has an idea and melding them into a grand theory is just going to end up with scientific sounding gobbledygook.

The immune priming explanation is not a "consensus" theory, it's a way of explaining why so many disparate treatments could appear to have a positive effect on CFS patients. If many different illnesses (viruses, mould, gut dysbiosis, and Markov's proposed CBIS) are having the same effect on the body's immune system it could be why it leads to the same symptom (CFS), and why treatment for any of these ailments which might trigger this immune system reaction could have some success.

As for Markov's theory I agree it sounds too simplistic that there might be one underlying cause (CBIS) for all CFS patients. But it's not the craziest idea that's ever been proposed, it fits into the general idea or CFS being caused at least in part by endotoxins triggering the immune system, and it's probably worth investigating a bit further just in case. It could be one of many illnesses that contributes to the immune priming idea which is presumably why that subject is being raised here.

 

[Martin aka paused||M.E.]

As for Markov's theory I agree it sounds too simplistic that there might be one underlying cause (CBIS) for all CFS patients. But it's not the craziest idea that's ever been proposed, it fits into the general idea or CFS being caused at least in part by endotoxins triggering the immune system, and it's probably worth investigating a bit further just in case. It could be one of many illnesses that contributes to the immune priming idea which is presumably why that subject is being raised here.

But it should be detectable with a normal urine culture. Asked a lab doc. He says it’s “nonsense”. Urine had to be frozen within a short period of time and if not bacteria grow rapidly and you surely have a positive test result. But I agree with you! If they would provide more replicable data....

 

[brenda]

I have recently found total relief from chronic sinusitis of many many years standing, including sneezing bouts through the night.

The cure came by way of ocular shingles, with which I lay just about unconscious for three days without food, followed by a week on fruit only. The nasal passages were clear and also my joints were 100% improved with all pain and stiffness gone. Since then I have added vegetables and seeds (and a little salmon) and my conclusion is that it has been all grains which I will no doubt test soon.

 

[hb8847]

But it should be detectable with a normal urine culture. Asked a lab doc. He says it’s “nonsense”. Urine had to be frozen within a short period of time and if not bacteria grow rapidly and you surely have a positive test result. But I agree with you! If they would provide more replicable data....

Ah OK that's interesting. So what, Markov's idea is the bacteria is present in CFS patients but the lab doc says it would be present in all patients? Surely Markov's theory would be easily provable with samples from a healthy control group... you claim to have this don't you @ME/CFS - Mystery No More! Under ME/CFS hides CBIS ?