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Evidence the cause of ME/CFS is in the kidneys: my experiments targeting my kidneys with bacterial biofilm-destroying ultrasound

BrightCandle

Senior Member
Messages
1,176
I am getting no effect from it now at all, brain fog is returning, not getting the headaches or any effect after treatment. Urine dipslides are clean of bacteria at the moment, other urine tests unchanged.
 

Garz

Senior Member
Messages
374
I am getting no effect from it now at all, brain fog is returning, not getting the headaches or any effect after treatment. Urine dipslides are clean of bacteria at the moment, other urine tests unchanged.

just checking - when you say that brainfog is returning - do you mean exposing the kidney to the device you used actually improved brainfog/ other symptoms for a while - as so far i had understood that you had only experienced some degree of worsening afterward - and while this was decreasing each time - i hadn't realised you had seen improvements also
 

BrightCandle

Senior Member
Messages
1,176
just checking - when you say that brainfog is returning - do you mean exposing the kidney to the device you used actually improved brainfog/ other symptoms for a while - as so far i had understood that you had only experienced some degree of worsening afterward - and while this was decreasing each time - i hadn't realised you had seen improvements also

The way it worked was I got a spike of headache pain within about 10-15 minutes, I would suffer with that for about 30 minutes and then I would be in improved state for many hours afterwards until I did it again. On average I had improved days, played computer games and started work on my 3d printer etc, I had improved brain clarity and less orthostatic intolerance. Still limited but a 5-10% improvement on the hummingbird scale after a few days of doing it. When I started this I was in bed 18 hours a day, I am not spending any daytime in bed at the moment. But today I am getting no impact from the treatments and the clarity I had is gone and I feel like laying down again. So its been a short lived immediate uptick with some unpleasant moments. Its also improved my nether regions pain, that had been flaring when I started this and nothing I have ever found helps that I just have to ride it out for usually months.

I'll try a few more dipslides over the coming mornings and see if I can't get a positive result, if that is now negative that is a big result and is much more compelling evidence for a biofilm breakdown than the odd effect I got from doing this for a few days.

I am not stopping I'll carry on even if its not doing anything since I don't think its harmful, I feel it may be a bit like antiobiotics and you shouldn't stop just because you feel better that is just the corner being turned and you need to finish the course (in this case I have no idea how long that is!).
 

Hip

Senior Member
Messages
18,000
in that case the compressible medium ( blue tack ) between the primary driven mass - the moving element of the loudspeaker) and a secondary moving element ( the glass jar lid ) will have further affects on the resulting power output of the whole system into the intended medium ( human body)

For audio frequencies, Blu Tack seems to make little difference. When playing music through surface like a desk, the resonance loudspeaker is almost as loud when there is Blu Tack on it, compared to when it is placed directly on the surface. Although I can only hear up to around 10 kHz.
 
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Hip

Senior Member
Messages
18,000
I am not stopping I'll carry on even if its not doing anything since I don't think its harmful, I feel it may be a bit like antiobiotics and you shouldn't stop just because you feel better that is just the corner being turned and you need to finish the course (in this case I have no idea how long that is!).

One thing you can consider, maybe at a later date, is changing the frequency, and also the volume.

The 18 kHz sine wave you are using is near the 20 kHz end of the frequency range of your device, but if you reduce the frequency to say 15 kHz, you may get a more powerful output, since devices tend to produce a stronger output in the middle of their frequency range, compared to at the ends.

It's also possible that different frequencies may work better or worse on biofilms.
 

Garz

Senior Member
Messages
374
For audio frequencies, Blu Tack seems to make little difference. When playing music through surface like a desk, the resonance loudspeaker is almost as loud when there is Blu Tack on it, compared to when it is placed directly on the surface. Although I can only hear up to around 10 kHz.
makes sense - the driver is better for lower frequencies in any case - so that is most likely the majority of the sound heard through the table - unless the table surface is breaking up and resonating in a non-linear way ( entirely possible ) - and i would expect the larger amplitude of the lower frequencies to be damped less than the higher frequencies. its generally easier to damp higher frequency / shorter wavelength sounds with absorptive materials than larger frequency / longer wavelength ones.

i really think the amount of sound power actually arriving at the kidney is likely to be a very very small percentage of the speaker input power - which makes these experiments all the more interesting - and likely increases the safety margin also.
 

Garz

Senior Member
Messages
374
One thing you can consider, maybe at a later date, is changing the frequency, and also the volume.

The 18 kHz sine wave you are using is near the 20 kHz end of the frequency range of your device, but if you reduce the frequency to say 15 kHz, you may get a more powerful output, since devices tend to produce a stronger output in the middle of their frequency range, compared to at the ends.

It's also possible that different frequencies may work better or worse on biofilms.

i also think these are good suggestions
 

BrightCandle

Senior Member
Messages
1,176
I took it really easy yesterday as I was not feeling energetic but I have PEM today. I certainly haven't exerted myself to it I have toned back the last couple of days so I think its caused by this treatment. Rough day in bed today. Tried 15khz today also and I am worse after doing so.
 

Garz

Senior Member
Messages
374
thanks for the updates BrightCandle - go steady - and hope you bounce back soon
 

Hip

Senior Member
Messages
18,000
The effects of the sound wave on the mucous membrane tight junctions could explain the adverse effects experienced from this sound therapy.

It is known that ultrasound will open the blood-brain barrier, and it is thought this is due to opening the tight junctions of the BBB (and researchers think opening the BBB by ultrasound may be useful for getting drugs into the brain).

Since the tight junctions of the BBB are similar to those found in epithelial mucous membranes, and since there are some epithelial mucous membranes in the kidneys, the sound wave placed on the kidneys could be opening the tight junctions more, making the kidneys mucous membranes more leaky.

Remember that leaky gut is due to the opening of the tight junctions of the intestinal mucous membranes.

If the kidneys mucous membranes temporarily become more leaky due to the application of the sound wave, then they would leaky out more bacterial toxins from the kidneys into the bloodstream.



In the case of a leaky gut, there are many factors which are known to cause this increased intestinal permeability (intestinal permeability equates to opened tight junctions). Some of these factors are listed in this post. These factors include viral infection with enterovirus or cytomegalovirus, mycotoxins, LPS, and many others.

So it could be that ME/CFS involves a leaky kidney, due to opening of kidney tight junctions. And then a bacterial dysbiosis in the kidney, which might not otherwise cause much issue, could become as problem, because toxins from the bacteria may leak through the opened kidney tight junctions, and into the bloodstream.

If there were a way of closing these assumed to be open tight junctions of the kidney, that might have good results in treating ME/CFS.
 
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sb4

Senior Member
Messages
1,669
Location
United Kingdom
@Hip If exercise causes leaky gut, could it also cause leaky kidney? That would mean exercise increases bacterial release from the kidney which then causes a (delayed) immune response which results in PEM?
 

Hip

Senior Member
Messages
18,000
@Hip If exercise causes leaky gut, could it also cause leaky kidney? That would mean exercise increases bacterial release from the kidney which then causes a (delayed) immune response which results in PEM?

I am not sure. After exercise, blood zonulin levels are increased, which is a measure of intestinal permeability. It is the epithelial cells in the intestinal mucous membranes which secrete zonulin, and zonulin in turn opens the tight junctions, making the intestine more permeable.

Whether the increased zonulin in the blood after exercise might also have an affect on the kidney tight junctions, I do not know. It may be that the zonulin levels in the blood are too low to have any effect, and it is only the presumably higher locally-secreted zonulin levels in the intestines which have effect.
 

Garz

Senior Member
Messages
374
hyper permeable kidney membrane is certainly one possible mechanism - herx like reaction to dislodged bacteria another - but i would say there is no obvious reason that they would have to be mutually exclusive - it could be either - or both concurrently ( or of course something else we haven't thought of yet).

but the key finding (albeit tentative at this stage) seems the most important to me - that there seems to be a biofilm forming colony in the kidney.
 

Garz

Senior Member
Messages
374
yeah the increased gut permeability after exercise is a well known - but little understood phenomenon.

i did hear an interesting theory for its existence the other day - a well regarded microbiome expert was speculating that it could be that - in general humans tune their immune systems through exposure to antigens mainly through their gut. And in our ancestral past we would not have exercised for the sake of it - or to get fitter - but instead just as part of our daily lives - eg hunting and gathering - and hence there may have been a biological advantage to opening those tight junctions to expose the human organism to safe levels of new antigens encountered - eg during hunting wild animals - to give our immune systems a better chance to learn about them and make suitable adjustments in case we are more fully exposed - eg through a bite sometime later.

i found the idea interesting - as i haven't heard of any other compelling explanations for this feature of our biology
 

Hip

Senior Member
Messages
18,000
i found the idea interesting - as i haven't heard of any other compelling explanations for this feature of our biology

It's plausible I guess. Though the intestines do have these areas called Peyer's patches whose purpose is to sample the microbes in the food and in the intestines, in order to give the immune system an early warning of any dangerous pathogens.

I wonder if the opening of the tight junctions during exercise is to allow more sugar, water and nutrient absorption, which you would need if you are expending energy.
 

Garz

Senior Member
Messages
374
I wonder if the opening of the tight junctions during exercise is to allow more sugar, water and nutrient absorption, which you would need if you are expending energy.

i could be wrong - but i am not sure it works like that - i think opening he tight junctions is a bit like opening the holes in a sieve - the sieve already let flour through just fine ( equating to normal food nutrient products like small peptides, sugars and fatty acids - but if you open it up - much bigger lumps and chaff ( equating to whole bacteria or fragments of them and much bigger protein molecules ) go through too. so its like a filter in that respect.
 

Garz

Senior Member
Messages
374
this article goes into some depth on the structure and function of the membranes in the kidney

one interesting facet is that the membrane is really 3 separate structures and is optimised for filtering albumin in the blood while letting smaller molecules through.

in their experiments with knock out mice etc and diseased humans - the usual outcome from impairing these membrane in ways that increases the permeability - is increased protein in the blood -

so that's a potential easy to measure ( at home test from a lab test online) type of test that could be performed during a PEM reaction - to check is hyperpermeability s present

though as per above - there could be some confounding going on as bacterial toxins could cause inflammation and increased permeability as well as herx like effects from immune stimulation

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC525751/#!po=41.6667
 

Hip

Senior Member
Messages
18,000
in their experiments with knock out mice etc and diseased humans - the usual outcome from impairing these membrane in ways that increases the permeability - is increased protein in the blood

Just Googled for studies examining blood protein levels (hyperproteinemia) in ME/CFS patients, but unfortunately did not find anything.



Ideally we would like to measure levels of the bacterial toxin proteins in the blood, as that would be direct confirmation that elevated levels of bacterial toxins are present in the systemic circulation in ME/CFS. We do have one study showing that LPS is elevated in ME/CFS (though not in all patients). However, LPS is only one of hundreds of different bacterial toxins.

It seems that with current medical science, there is no way of easily detecting bacterial toxins. I searched for such toxin tests, but apart from blood LPS level tests, there do not seem to be any blood tests for the presence of bacterial toxins, either commercial tests or research tests. So bacterial toxins detection is a blind spot in medicine.


Dr Markov demonstrated elevated bacterial toxins in the blood of ME/CFS patients by a special test that appears to be unique to the Ukraine. This test was developed by toxicologist Dr Borys S Sheiman in Kyiv; it is called the Toxicon test (detailed in the first post of this thread). But I have not been able to find any comparable test elsewhere.


A while ago I contacted the Morten Group in Oxford to tell them about the Markov theory, and Dr Karl Morten showed interest. The Morten Group are focused on bacterial and bacterial toxin aetiologies of ME/CFS, so the Markov theory is right up their street. Although Dr Morten told me that he is thinking more in terms of gut permeability, and has not previously considered the kidneys.

The Morten Group have one researcher using Raman spectroscopy, which know nothing about, but I believe it can detect protein signatures in the blood. However, whether Raman spectroscopy is precise enough to detect specific bacterial proteins I don't know.

This blind spot we have in medical science regarding the detection of bacterial proteins is one of the reasons I find the Markov theory interesting. We know that the cause of ME/CFS has so far remained a mystery, in spite of all the modern testing techniques we now have at our disposal. Therefore the cause of ME/CFS is likely to be something which is beyond the ability of current instruments to detect. And bacterial toxins are precisely a factor which is beyond our current ability to detect (save for the unique Toxicon test).
 
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BrightCandle

Senior Member
Messages
1,176
I felt better about 6 hours after this mornings treatment, this was not a normal PEM reaction for me its missing pieces. I feel more like I was getting a cold, fatigue and muscle stiffness. PEM for me usually is driven by migraines, brain fog, wosened orthostatic intolerance, troubles getting to sleep (more than usual) and also muscle fatigue that is my usual pattern alongside worse sleep disruption. I am also sweating without exercise, running a mild temperature about 0.5C above my baseline which only occurred after I appeared to "recover" from the episode earlier. I am missing all the neurology pain and its just muscle fatigue and more nasal and ear blockage. It could be the same thing but its never manifested like this before so I am inclined to think its a different thing happening, the symptoms are different and its passed far too quickly, I have never had a crash be less than a week.

There is always the straight answer which doesn't involve adding anything new from a science point of view and things are doing largely what we anticipated from the beginning. We have found Bacteria in our Urine, there is a high chance its emanating from the Kidneys due to prior research. The only way its sustainably surviving is if its formed a biofilm, a biofilm that has been there in me for nearly a decade potentially longer slowly growing. The process of hitting it with near ultrasound (and today a lot more energy) breaks it up a bit, the bacteria are released and the white blood cells do what they do best and each time I am getting a lovely cocktail of toxins from the bacteria getting fighty, toxins from the breakup of the bacteria itself along with a lovely soup of RNA/DNA and to top it off a bunch of cytokines and other garbage that usually makes people feel unwell. It is a mild Sepsis response.

I am not running any other experiments at the moment so pretty certain its just this producing this rollercoaster. I skipped the second dose today but I'll get back on plan knowing how this played out today.

I would love to test my blood for toxins, if you find a way that isn't ludicrously expensive I'll happily do that, would be great to get confirmation, just not had much luck finding someone in the UK to do it and there will be no help from the NHS. We either need a PCR for the likely candidates of bacteria along with a live/dead test or LPS or general spectrum bacterial toxins blood test.
 
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