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

[duncan]

So the fact that I experienced these PEM-like adverse effects just from some gentle sound waves on my kidneys suggests that there is something going on in the kidneys of ME/CFS patients.

No, it doesn't. That's just too great of a leap. That's like saying it suggests there is something going on in all males from the UK (assuming you're a male from the UK.)

It might suggest there is something going on in YOUR kidneys, but even that's a bit of a stretch.

 

[Wishful]

tend to suggest that there is something amiss in the kidneys in ME/CFS

The evidence is for your kidneys, not ME kidneys in general. As a group, we show all sorts of individual responses to various factors, so what works for one doesn't necessarily work for another. You'll need a lot more people to try that experiment before claiming that it's a general ME mechanism.

From what you've described, I'm leaning to wards it being a permeability modifier, allowing something to pass more easily.

Hah, I should have taken the time to read the next page before unexpectedly duplicating duncan's comment.

 

[hapl808]

I would not be at all surprised if people with CFS also had flares similar to your own if they took a biofilm disrupting agent like bromelain or lumbrokinase or xylitol ( there is some specificity around which agents work best for which biofilm colonies) rather than mechanically break up the biofilm.

I just wonder since in the last few weeks I've tried bromelain, quercetin, nattokinase, serrapeptase, xylitol, lactoferrin, skullcap, andrographis, and so forth. I felt like crap before, and I still feel like crap.

Working too hard on the computer or talking on the phone triggers a PEM crash in a way that none of those substances do. If I talk on the phone after taking nothing for a few days, I get the same crash as if I'm taking natto-serra and xylitol. Yet on their own, none of those substances seem to cause any crash.

¯\_(ツ)_/¯

 

[Hip]

The evidence is for your kidneys, not ME kidneys in general.

It is N=1 evidence. And it will probably remain N=1, unless we get some proactive ME/CFS patients focused on treatment experimentation attempting to replicate this possible anti-biofilm approach.


My anti-biofilm ultrasound experiment was done in the context of Dr Markov's theory that ME/CFS is caused by a bacterial dysbiosis in the kidneys, which leaks a range of bacterial toxins into the bloodstream, with these toxins causing the condition of ME/CFS.

So my aim is to try to break down the presumed biofilm that may exist in the kidneys, in the hope that this might result in symptomatic improvements in my ME/CFS.

Unfortunately I ran into this problem of the treatment making me feel terrible. Not just a lot more tiredness and brain fog, which I can cope with, but also a lot more depression, mental frailty, social withdrawal, feeling very uncomfortable even just talking to people, feeling too weak and feeble to even drink my morning cup of tea, etc.

So unless I can find a workaround which prevents these treatment side effects, I myself may not be able to fully test this treatment (which I expect may require perhaps many months of daily treatment for it to work). So it would only be others who could attempt it, assuming others did not get hit with such horrible adverse effects.


But I wanted to report these strange and horrible side effects, because I was astounded how some sound waves on my kidneys could trigger such a terrible PEM-like state. Well, more than PEM, because my regular PEM is not as bad as this.

If others did show interest in trying this treatment, and they too experienced similar adverse effect when the ultrasound is directed on the kidneys, but not when directed elsewhere in the body, that would actually provide greater than just N=1 evidence that the kidneys are playing a role in ME/CFS. And that would be a major discovery.

 

[lyran]

My anti-biofilm ultrasound experiment was done in the context of Dr Markov's theory that ME/CFS is caused by a bacterial dysbiosis in the kidneys, which leaks a range of bacterial toxins into the bloodstream, with these toxins causing the condition of ME/CFS.

Have you tried bioresonance therapy? It can be a tool to find out if there is something in your kidneys that doesn't belong there.

 

[Hip]

Have you tried bioresonance therapy?

Bioresonance is a fraudulent treatment designed to scam patients. The marketing literature uses scientific-sounding terms, which to the layperson may sound impressive, but it's not science at all, just mumbo-jumbo. Definitely one to put on the avoid list.

 

[BrightCandle]

For my sim racing rig (which I rarely get to use these days) I am getting a pair of transducers for the pedals, which I have justified because of this experiment! 20W output capable of up to 20khz, they are used for adding in vibration for detecting the triggering of wheel slide and ABS, these are things you feel in a racing car and I am at the stage where I can race once every couple of weeks at the moment. They require some 3d printed parts and that will take some weeks to do.

This is the same thing Hip has done more or less so before I print the parts to add it to my rig I'll do the same experiment and excite my kidneys with them, as far as I can tell these sort of things should do nothing at all in a healthy person. If I get response then I will put myself through as much suffering as I can bare, by the sounds of things I might do one and scream never again.

As a sort of another attack vector there was a random article today about bacteriaphages and in the comments was this link to a site that filters phages and companies that collect them, which is another way to go about attacking bacteria in the body: https://www.bacteriophage.news/phage-products/?sf-s=Staph&sf-listdom-feature=&sf-shortcode=1699

 

[Garz]

No, I fear this cannot account for PEM, That is conflating two discreet phenomenon. Why? Because PEM can happen- and usually does - without any sort of antimicrobial or outside agent,. Simply concentrating can trigger PEM in some. Reading can trigger it.

i think i am going to have to challenge the logic of that statement.

if for instance we were to posit that PEM is the end outcome that can be triggered by many different factors - then the fact that one of those factors is not present would not mean that the patient cannot be experiencing PEM.
to to try to phase it a different way - to say that the reaction from breaking up biofilms cannot be PEM - because PEM is often caused by something else - is a bit like saying - because we know drink driving causes accidents - if there was no drink involved there cant be accidents - if you see what i mean?

in my case - and in many others i speak to - many things can case PEM type reactions
- strenuous physical activity
- mental activity - eg driving - or socialising or using a PC
- taking antimicrobial herbs
- taking antimicrobial pharma drugs
- Dietary changes - specifically eating more sugars and carbs
- taking probiotics

do these all have the same mechanism? - or are there various mechanisms at work which all lead to the same or similar end symptom patter of PEM

i don't think we know for sure yet - but the list is quite diverse - so it seems likely there is more than one mechanism at play

 

[BrightCandle]

I think the CBIS theory here is that toxins from the bacteria ultimately make the energy level of the body worse, if we increase those toxins then the situation worsens but the PEM is due to exceeding those limits. So if we release the bacteria and they start eating and breeding more rapidly producing more toxins then our limits go down as more toxins build up against our bodies ability to reduce them and we end up primed for a PEM episode but its the exertion itself that triggers it.

 

[Hip]

For my sim racing rig (which I rarely get to use these days) I am getting a pair of transducers for the pedals, which I have justified because of this experiment! 20W output capable of up to 20khz, they are used for adding in vibration for detecting the triggering of wheel slide and ABS, these are things you feel in a racing car and I am at the stage where I can race once every couple of weeks at the moment.

That's great! You could place the transducers on your kidneys, and then rev up the car engine! Just joking of course. You would want to drive these transducers using a tone generator on a computer or tablet.


I doubt if other ME/CFS patients will get the mental health side effects from any kidney ultrasound experiments; I am prone to mental health side effects, especially from any treatments which activate the immune response. So the mental health adverse reactions I had may be idiosyncratic.

However, it's possible that other patients will still experience the increased fatigue and brain fog I also had, and that would perhaps provide some evidence of something going on in the kidneys.

 

[Garz]

References, would be greatly appreciated. Is this being inferred from S Benjamin et al? Or do you have another study(ies) in mind? A protracted cytokine storm is a cool theory, but relative to Lyme I was unaware this had been demonstrated. I'd figure the IDSA/CDC would fight the concept tooth and nail.

the CDC still deny lyme bacteria persist after 4 weeks of antibiotics - or that Chronic Lyme disease infections exist - when there are literally reams of peer reviewed high quality research to the contrary.
So they are pretty much an irrelevance in terms of moving Lyme research forward at this point. unfortunately their policy and editorial direction continues to do more to muddy the water and prevent people getting proper care.
i suspect corruption is at the root of this bizarre situation as powerful entities like the health insurance industry which accounts for revenues of around 10 trillion dollars per annum in the USA have a great deal to lose if they suddenly have to start paying out for long term care for millions of people who are not in their risk calculations. hope criminal charges are brought to bear in the individuals concerned.

ref the later theory of long lasting "Herxheimer like" reactions seen in Lyme disease patients - as far as i know the story is not covered by a single clean easy to absorb journal paper.

muck like a great deal of the science on any in depth subject - it is instead spread over many papers with each presenting a part of the story

it could take me a while to find more of them - but this paper for instance documents that live spirochetes engulfed by white blood cells result in more inflammatory cytokines being released than if dead bacterial fragments are consumed

Phagocytosis of Borrelia burgdorferi, the Lyme Disease Spirochete, Potentiates Innate Immune Activation and Induces Apoptosis in Human Monocytes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2223637/

i suspect the reality is that any adverse reaction after breaking up biofilms will be the sum of a number of different reactions - some from bacterial endotoxins in the bacteria themselves, some from bacterial extracellular matrix and some from live bacterial being engulfed by white blood cells.

 

[duncan]

do these all have the same mechanism? - or are there various mechanisms at work which all lead to the same or similar end symptom patter of PEM

Perhaps this is more of a labeling issue? I think you may be ascribing PEM to things that are not PEM. So, for example, herxing is not PEM, as you know. Same thing here. If your inference from those disparate studies is correct, and there is a kind of prolonged cytokine storm at play, this would not be PEM probably - it would probably be the sequlae of a specific type of immune reaction. But I agree we do not yet know what PEM is, so I don't want to cut hairs,

i suspect the reality is that any adverse reaction after breaking up biofilms will be the sum of a number of different reactions - some from bacterial endotoxins in the bacteria themselves, some from bacterial extracellular matrix and some from live bacterial being engulfed by white blood cells.

You may be right. But we don't really know. This is an inference from a handful of studies. I don't even know if ILADS has made any pronouncements about this. I like your train of thought, though.

 

[Wishful]

do these all have the same mechanism? - or are there various mechanisms at work which all lead to the same or similar end symptom patter of PEM

It's possible that they all have a common factor, such as activating glial cells. Some of the input factors might work through some complex series of steps, such as altering the microbiome, which alters production of some chemical, which increases blood vessel permeability, which lets something across the BBB, which activates the glial cells. I expect that finding for the cause of PEM would be very difficult.

FWIW, cumin blocked my physically-induced PEM, but didn't block my cognitively-induced PEM. However, when. after 2.5 years of taking cumin, I stopped experiencing PEM, neither activity caused PEM.

 

[Rufous McKinney]

Working too hard on the computer or talking on the phone triggers a PEM crash in a way that none of those substances do. If I talk on the phone after taking nothing for a few days, I get the same crash as if I'm taking natto-serra and xylitol. Yet on their own, none of those substances seem to cause any crash.

Me, too.

My friend is begging me to call her. But am not into crashing this week.

If I just sit or lie down quietly and read a bit of something with paragraphs- up starts the sore throat.

The gift, that keeps on giving.

 

[Wayne]

I would suggest anybody experiencing detox overlead from doing this protocol consider doing coffee enemas. They've helped me considerably in the past when dealing with toxic overload in my system. I think another good therapy would be to nebulize glutathione, and/or NAC, and/or very dilute hydrogen peroxide (.1%). Nebulizing these has been shown to be highly effective in treating COVID.

 

[BrightCandle]

So my TT25's arrived yesterday and got all the soldering and wiring done. I waited until this morning to start "treatment". 15 minutes after treatment and I feel lightheaded, weak and a headache is definitely appearing, all the early signs of a crash and yet I have not exerted this morning and felt normal when I got up this morning. Its like I just super over exerted hard like I run on the spot for 10 minutes or something equally stupid. I only did 10 seconds at 1/4 volume for 18Khz so I think I may need to tone it down! Interesting.

My plan is to tone it down to something I can stand and keep trying it a couple of times a day while testing with some urine sticks to see if anything changes. Everything I can find suggests kindey ultrasounds have no side effects so this is sure looks like it might be biofilm related, its definitely weird.

 

[Hip]

15 minutes after treatment and I feel lightheaded, weak and a headache is definitely appearing, all the early signs of a crash and yet I have not exerted this morning and felt normal when I got up this morning. Its like I just super over exerted hard like I run on the spot for 10 minutes or something equally stupid. I only did 10 seconds at 1/4 volume for 18Khz so I think I may need to tone it down! Interesting.

Wow, great experiment, BrightCandle!

You may like to wait a day or two before repeating; I did not get hit with the adverse effects until the next day, and the day after that.

In terms of toning it down: I did my first test using 18 KHz for 10 minutes total (5 mins per kidney), at a high volume on the amplifier. On my next test some month later, I toned it down to just 2 minutes total (1 min per kidney), but still got just as severe an adverse effect.

On both occasions, the adverse effects hit me the day after the application of the 18 KHz sine wave sound, and lasted for 3 days before recovery on the 4th day.

So you may have to tone down quite a bit in order not to get these adverse effects.

 

[Rufous McKinney]

So you may have to tone down quite a bit in order not to get these adverse effects.

egad: this is exciting but needs to be taken really slowly, as suggested...I'd be starting with 30 seconds!

 

[Rufous McKinney]

So these strong negative effects from placing ultrasound on my kidneys perhaps suggest that the kidneys are involved in ME/CFS pathophysiology, as Dr Markov believes.

perhaps, but this is entirely what I would expect if any disruption of biofilm is succeeding. All kinds of toxins, accumulations, metals and maybe even ghosts of critters past, reside in this film and breaking it up, is going to result in feeling super lousy and PEM events until perhaps, the other side is reached. Its probably got lots of LPS for instance.

This is how I can't tolerate massages, more than 10 minutes of acupuncture with only about 1/10the needles, etc.

Question: could the ultrasound be affecting other organs and systems since its applied to outside your body? (what confines the effects to only the kidney?). Liver and intestines are very nearby, as is the lymphatic system.

 

[Hip]

this is exciting but needs to be taken really slowly, as suggested...I'd be starting with 30 seconds!

Yes, I think it might need to be done very slowly. As well as reducing the treatment time, you can also reduce the amplifier volume to decrease the power of the ultrasound (or near ultrasound in the case of the 18 kHz sound wave).