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

[Garz]

i agree - a direct measurement of bacterial toxins would be great - but thought a proxy might be of at least some value as accessing something that directly measures the applicable endotoxins might prove to be challenging.

in case its of any help - this paper describes the various technologies in use to measure the presence of pathogens and their endotoxins - including some of the newer biological sensors and even phage based techniques - its a fairy high level overview - perhaps there are some leads in the references.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5580025/#!po=20.3704

 

[BrightCandle]

If you were to take the blood of a normal control and plop a drop onto an agar would we expect to see bacterial growth? Preparing an agar isn't too complex but if we all have obvious bacteria in our blood normally its not a helpful test. This would assume what is making out has some alive bacteria too but its a potential proxy I just don't know how reliable it would be.

 

[Garz]

i follow your thinking - but i think there are difficulties that may reduce the useful ness of culturing blood on agar

on the one hand - with PCR techniques - they are finding v few places in the human body are in fact sterile - as was once thought - so some bacteria in the blood may be normal

and on the other - some deep research into some infectious disease show that PCR of blood is in fact rather poor at detecting bacteria that for instance tend to live mainly in tissues.
-PCR of blood for Borrelia Burgdorferi for instance is generally regarded as only around 50% sensitive in infected persons
-PCR of blood for Bartonella species seems to be even less sensitive - around 20-30% perhaps

also there is also a general observation that bacteria in biofilms are generally harder to culture, some bacteria need very specific conditions to be able to culture them - eg will not grow on simple agars
but since Markov appears to have demonstrated that the species he feels are responsible for CFS are culturable and do grow on agars - perhaps that last point is less of an issue in these cases

it could be a case that, in the absence of ideal testing for the bacterial toxins themselves, a suite of proxy tests like this might still bring useful info

 

[BrightCandle]

Blood and urine show no growth 24 hours. Feel kind of rotten last couple of days, no obvious impact from treatments. It's a roller coaster, improved one day bad the next no obvious trajectory.

Edit also running a +1C fever.

 

[wastwater]

I think I may have mild aHUS and a complement imbalance in the liver that effects the kidneys
Under reactive to bacteria and over reactive to viruses
Low C3 high C5 I suspect,virally triggered
Maybe complement deficiencies as a whole aren’t that rare

 

[BrightCandle]

I have been getting less impact this week so I decided, like a moron, to up from 30 seconds to 2 minutes. I did 30 seconds four times in a few different locations including from the side. Well , do not do 2 minutes of this is my advice. Odd sensation of liquid running in my neck before it felt like i was bleeding, almost immediate derealisarion and headache and orthostatic intolerance. Very unpleasant side effects at 2 minutes.

 

[Hip]

I have been getting less impact this week so I decided, like a moron, to up from 30 seconds to 2 minutes. I did 30 seconds four times in a few different locations including from the side. Well , do not do 2 minutes of this is my advice. Odd sensation of liquid running in my neck b3fore it kicked off like i was beeding, almost immediately derealisarion and headache and orthostatic intolerance. Very unpleasant side effects at 2 minutes.

How long these adverse effects you got last? Was it hours, or was it days?

I hope it's over for you now, because I found the adverse effects pretty unpleasant too.

 

[BrightCandle]

How long these adverse effects you got last? Was it hours, or was it days?

I hope it's over for you now, because I found the adverse effects pretty unpleasant too.

The worst of it has passed I can be upright again, so about 30 minutes. My neck remains weird and stiff and I am very clumsy still low level head pressure. Its dissipating like the shorter ones but a lot sharper. I suspect hours but I'll let you know tomorrow or in a few days when it passes fully.

 

[vision blue]

I ME/CFS.

This ultrasonic experiment on my kidneys I conducted a few times, and I got the same result each time: I was hit hard with PEM-like depression, fatigue and brain fog lasting days (and it was quite unpleasant).

Now, I would think that if you applied ultrasound to a healthy person's kidneys for a few minutes, they would not experience any adverse effects like I did. After all, hospitals use ultrasound scans on patients all the time without any such side effects.

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

Not necessarily. You’d have to find that ultrasound to other parts of your body do NOT produce the same effects in order to make any conclusions about the kidney. specificallyv

I have a thread on how I respond very badly to diagnostic ultrasound, no matter what part of my body is tested
i .

 

[Hip]

You’d have to find that ultrasound to other parts of your body do NOT produce the same effects in order to make any conclusions about the kidney. specificallyv

I did try the 1 MHz ultrasound on a few other parts of the body, and found that did not lead to adverse effects.

I have not tried the more potent 18 kHz near ultrasound on other parts of the body though.

I have a thread on how I respond very badly to diagnostic ultrasound, no matter what part of my body is tested

Interesting.

 

[BrightCandle]

I have such terrible insomnia which is usually the sign of PEM episode of some description. My neck really hurts, its so stiff and it feels really weird. My lower back is also very unhappy with me its tired and painful. My leukocytes in my urine are pretty darn high.

I have tried the 18khz on other areas with some of the gap days in the 30 seconds range. I have tried my upper large intestine (a problem area for me) and tired muscles like my gluts and hamstrings. Nothing of note happened in any of those nor aiming at my liver. I have tried it for UTI related pain and it feels weird right after but tends to dissipate it so I kind of rate it for that alone. That UTI related pain usually lasts for weeks or months, nothing doctors have done has helped and I have learnt to suffer it, well 30 seconds of 18khz and it goes away for the day.

So far only two places on my body have produced any impact, Kidneys and UTI related area. Muscles no impact, liver none, chest area arteries also nothing (another theory I saw about artillerial blockages in the upper right chest responding to near ultrasound). If someone thinks somewhere particular ought to cause an impact let me know and I'll zap it.

 

[Hip]

So far only two places on my body have produced any impact, Kidneys and UTI related area. Muscles no impact, liver none, chest area arteries also nothing

Great piece of investigative research!

So now we have two ME/CFS patients who have found that directing ultrasound or near ultrasound at the kidneys causes adverse effects, but directing at other body areas does not cause issues.

 

[Hip]

@Thebirdman333 just mentioned an interesting alternative interpretation of the adverse effects experienced from directing ultrasound at the kidneys:

The kidneys and the adrenal gland located at the top of the kidney secrete a number of hormones. If the ultrasound were effecting the release of these hormones, then possibly that might be a potential alternative explanation of the adverse effects.

Though with a quick Google, I could not find anything that suggests ultrasound does stimulate (or inhibit) hormone secretion.


Adrenal Gland Hormones:

• Cortisol
• Aldosterone
• DHEA
• Adrenaline
• Noradrenaline

Kidney Hormones:

• Calcitriol (the active form of vitamin D)
• Erythropoietin (stimulates the bone marrow to create red blood cells)
• Renin
• Angiotensin (the renin–angiotensin–aldosterone system regulates blood pressure, fluid and electrolyte balance, and systemic vascular resistance)
  

 

[BrightCandle]

Before I did this I spent quite a while watching Kidney ultrasound training videos and searching through papers for known side effects. I would love to say that someone somewhere had suggested something like what we are experiencing but not a single paper or expert I found mentioned any at all. The idea there are side effects from a kidney ultrasound just doesn't enter their radar at all its considered 100% noninvasive. We all know how doctors can be sometimes about recording side effects and how dismissive they can be but I would have expected to find someone with an alternate view if this was a normal response that the mainstream was missing. There is always the chance I just missed it in my searches, but its definitely not mainstream medicine if its known.

My dad also had a kidney ultrasound some years back and he said he had no side effects at all. The response we are getting here I can't find it documented by medicine. Its super weird too in a quite disturbing way but its what you might expect from Sepsis.

Recovered by the morning mostly (feel meh). Did 1 minute this morning, less rough but still mighty uncomfortable. I am having to up the dose so something is changing I just need to keep it manageable, if it is causing Sepsis I think too long could kill you quite quickly.

 

[BrightCandle]

A slow grower but my urine agar is showing e coli, not a bacteria I saw in the first set of CBIS experiments at all, bright red bumps they look horrible. Unlike all the dipsticks before this is not just a single point captured I have about 10 different independent areas of growth. I never saw anything like that on the prior urine dipsticks especially since many of those got multiple exposures and this only got the single exposure. I am also still taking cranberry which in the CBIS thread I mention stopped all appearance of bacteria in the dipsticks.

 

[BrightCandle]

I am up to 10 minutes now without any significant impact. The 2 minute treatment was the last one that caused me a significant consequence and its been smooth increases of 30 seconds a day since.

In terms of process for anyone wanting to do this I would recommend the following. Only progress once the significant impact has passed, otherwise just repeat the same thing or back it off a little if its too much.

1. Start at half volume and 15 seconds.
2. Increase to full volume still at 15 seconds.
3. Add 15 seconds until 60 seconds.
4. Progress up in 30 second jumps.
5. I doubt anything more than 2-3 minutes does more.

End of the week I anticipate stopping the experiment and a final urine bacteria test.

 

[Hip]

I am up to 10 minutes now without any significant impact.

Have you noticed any further improvements to your symptoms as you have slowly increased the treatment time?

 

[BrightCandle]

Have you noticed any further improvements to your symptoms as you have slowly increased the treatment time?

No not really. I am within my usual variance all be it at the top of my capabilities, I was nearer the bottom when this started. The UTIs are improved somewhat but they also tend to subside when I am improved. I am also having a bunch of uric acid/gout issues which have not given me problems in years and are well treated before, Uric acid is high.

I did have a blood test last week and GFR is on the low end of the range my doctor saw years ago, so that hasn't been improved by the treatment but its also not gotten worse by it either. I have heightened Creatine Kinase at the moment and that can suppress kidney function (seems to be a common problem in ME patients but not one I recall having before).

I have not seen a significant enough improvement to say the treatment has been anything other than minor, it at best could be considered a 0.5 improvement if its sustained and a new baseline.

 

[Garz]

thank you for the continued updates BrightCandle

i think the experiment has been tremendously worthwhile in terms of identifying the location of something in the kidney that drives CFS symptoms

however, if the Markov theory is indeed the underlying cause - trying to think through it logically - i am not sure i would expect much more than short term perturbation of symptoms and perhaps mild improvement from biofilm disruption alone.

in my estimation, from what is know about biofilm communities, how resilient they are and how easily they reform if not wiped out e.g. with powerful oxidising chemicals ( eg oxidising and burning away to the bare substrate with hydrogen peroxide or bleach is required in chemical manufacturing plants - is necessary to avoid rapid grow back).

clearly we cant bleach the kidneys clean to their substrate - so i would perhaps expect some combination of other approaches to be needed - eg perhaps anti-microbial therapy, maybe anti quorum sensing approaches, maybe other things too would be needed - as each of these would in isolation only be expected to make a small dent - but perhaps all combined might have a good chance at really removing the biofilm permanently - or allowing the bodies immune system to have a fair chance of doing that.

we might also want to understand - if indeed the ultrasound broke up the biofilm - where did the pieces go and what happened to them - were they easily absorbed and digested by the immune system - were they passed out in the urine - or were they distributed and set up shop somewhere else - or some combination of these eventualities?

not to invalidate what you have tried at all - i think its valuable (and still think it would be valuable if other were to try to compare findings) but more just to add to the discussion

I have not seen a significant enough improvement to say the treatment has been anything other than minor, it at best could be considered a 0.5 improvement if its sustained and a new baseline.

could you perhaps clarify the scale of the 0.5 improvement ?

 

[BrightCandle]

we might also want to understand - if indeed the ultrasound broke up the biofilm - where did the pieces go and what happened to them - were they easily absorbed and digested by the immune system - were they passed out in the urine - or were they distributed and set up shop somewhere else - or some combination of these eventualities?

At least some of it is coming out in the urine from the looks of that dipstick. Some of it is presumably entering into my bloodstream and making me feel bad at times.

could you perhaps clarify the scale of the 0.5 improvement ?

Mild, moderate, severe, very severe -> Moving from one to the other is considered 1 point of improvement. Half a point is I went from the boundary of moderate to severe (bedbound 1/2 the day) to upright all day with some energy to do tasks. On the hummingbird scale its about 10% to 30%.