A seemingly unexplored simple explanation for ME/CFS and my experiments with it

[Lena9701]

I'm replying without reading every comment so hopefully not missing anything big A few thoughts: You have to be careful doing parasite cleanses because they contain a number of toxins including heavy metals that will be released when they die, also can cause fungal flares and mess up your microbiome. So rather than start with antiparasitics best to start with supporting drainage and be prepared to support detox. I've addressed parasites a few times (not because of a diagnosis or symptoms, just the anything that might help logic) and it was kind of rough going (although I do feel it was ultimately helpful for long term healing). I think that everyone has parasites and those of us without good immune systems have a real parasite burden

 

[lyran]

This is quite intriguing, and I'm tempted to try it out. My hesitation stems from what I find on the Spooky2 website, however, (bolding is my own):

That's a pretty big "if." So how do you know what the "right" frequencies are?

The software has thousands of different programs/frequency sets for different conditions to choose from. To my knowledge wrong frequencies do no harm. If for example you use a program to kill a flu virus and you don't have that virus in your body, you just won't notice anything.

 

[Tsukareta]

This is quite intriguing, and I'm tempted to try it out. My hesitation stems from what I find on the Spooky2 website, however, (bolding is my own):

That's a pretty big "if." So how do you know what the "right" frequencies are?

Its got a huge database but im not convinced the programs they have on there are effective for ME/CFS because its such a mysterious and misunderstood disease compared to something like diabetes. After doing the 'terrain' preset I just look through and search for whatever I think might be useful for example the SIBO program, remove ammonia, stimulate nerve healing, generate ATP, oxygenate cells, kill EBV, HHV-6, mycoplasma etc, a similar approach to what people on here seem to do except with the machine its much faster to go through a long list of things and try to rule them all out as being an issue.

I tried the spooky pulse which is a cheap addon thing that measures small changes in heart rate to supposedly figure out which frequencies cause a stress reaction for the person, but it just seemed to unreliable with false triggers to get the right data, thats why I had to order the more expensive machine which doesn't rely on this technique, I think I could have got the machine today but I was out of the house and I missed the delivery, I don't check my email every day.

I tried the NOW foods black walnut hull, wormwood and cloves tincture a couple of times but I didn't notice much difference after it, it tastes quite strong too, but I will try and keep it up for longer. I am sceptical about the Hulda Clark parasite theory now after realising how large the parasites are and I wonder if it would have been noticed by regular doctors or during autopsy, but at the same time I do suspect that parasites might be more common than people think.

 

[Tsukareta]

I got the other machine ( originally I just had 2 of the Generator XM which is the blue one thats $100 each for just the generator and power supply ), this one is the X Pro which is about 3 times more expensive, but I needed it mainly for the special scanning ability, it can work standalone without a computer which might be useful for treating people like my dad who has cancer and he is in bed all day every day now.

This is the data I got from initially using the machine, it appears to be accurate this time ( Spooky Pulse did not give these results ). So Ascaris Lumbricoides is one of the parasites Clark mentioned in the book, i'm kind of surprised that I have this, but I did have asthma when I was a teenagers, which she said was caused by Ascaris.

I did have quite bad Paraosmia a couple of years ago and some chemicals smelled completely differently, this had already happened before ever got a virus that gave me a positive COVID test. Chlorine particularly smelled unrecognisable. Its not been too bad recently but sometimes I do start to smell things all of a sudden and i'm not sure if they are real or imaginary. I'm quite sensitive to chemicals and a year ago I had MCS too.

Hallux Valgus makes sense because in the first year of CFS I got a weird bump appearing on my big toe joint, which now doesn't match the other one, I didn't understand what this was and what caused it though, I thought it might have been a 'bone spur' and bones were going to start sprouting out all over my body, one of the joys of my early time with CFS.

I had never heard of this other one but it seems highly relevant, sometimes my leg muscles at the front go weak and I have no idea why, it seems to flare up sometimes at the slightest stress, and I assumed it was due to toxins from my SIBO damaging my muscles. This happened a couple of days ago actually, I felt very tired at the time but I kept pushing myself and suddenly my legs started to go weak and I felt like I would just buckle over, which is bizarre because a week ago I was walking really well and going up stairs easily and my muscles felt bigger than usual.

My brother told me recently that the doctor thinks he might have some kind of hyper-flexibility EDS like disorder because we went cycling once and he fell off, dislocated shoulder, had problems with it since, kept dislocating again when he sleeped. I had very weak wrist joints and sensitive neck all of a sudden about 2 years ago and I started wearing wrist braces, I had a sprained wrist from ebike riding on invisible ice in the dark and it wouldn't heal, then months later I tried to lift someones chair while they were sat on it to get past them and a similar thing happened to my other wrist, this seemed to improve in the past year though.

Edit - I re-ran the database scan with the Include Harmonics option checked, which searches for different freqs in the database that are mathematically related to the one that was 'hit' by the scan ( best way I can explain it ), and it comes up with a long list of probably irrelevant stuff but heres one that seems very interesting. Database matches for 58205.76884665 Hz: Parasites: trypanosoma rhodesiense (ETDF) (465650 Hz). As you might know thats the African Sleeping Sickness, which has been compared to ME/CFS by Ron Davis.

 

[lyran]

Hallux Valgus makes sense because in the first year of CFS I got a weird bump appearing on my big toe joint, which now doesn't match the other one, I didn't understand what this was and what caused it though, I thought it might have been a 'bone spur' and bones were going to start sprouting out all over my body, one of the joys of my early time with CFS.

What a coincidence! I had this too during first year of CFS. That part of my foot got achy and tender during night and later I thought it was gout. Now a decade later it is still swollen.

 

[Tsukareta]

So far with this new machine I have noticed that the frequencies found in the first 3 quick scans were completely reliable and then repeatable, even when I put both contact pads on my thighs to try and scan the muscles that were sore. Then I tried to do a full scan with a 'baseline', which takes 4x longer, and after I did this all the frequency results started to change inexplicably, without me even running the programs that target the hits it found, even after I deleted the baseline, moved the pads around, went back to doing quick scans, I couldn't get the freqs contained in the original list, then I noticed too that the values i.e. magnitude of response was dropping, from about 1.7 to about 0.5 at the highest, as I continued to do scans into the evening I noticed I was way more sensitive to the effect of the machine, producing a similar 'strained' feeling on the body as I sometimes get from chemical sensitivity / MCS, so I stopped for the night.

Again this morning the quick scan gave a new list, with only one freq familiar, the one for 'etat marbre', the values had risen a little but were still below 1.0, my conclusion is that just the process of repeating scanning was enough to alter whatever was causing those strong initial hits. Today I saved the results of the first 2 quick scans I did and ran them as a program, 30 minutes each, the first one made me feel fevered, second not so much, but about an hour after I stopped I felt like going back to bed, at 9am ! I felt ill in the conventional sense like when you have a virus, and I felt like consuming some vitamin C, felt quite hot and wanted to lie down. I think this is probably what they call the Herx reaction. Also I already feel somewhat better. I have ran loads of stock database programs up to this point and none of them caused such a strong reaction.

One of the things it was saying I might have, in the initial scans was MCTD, mixed connective tissue disorder, and also Ankylosing Spondylitis. I don't have external symptoms or structural changes that would really suggest those and I went to a rheumatology specialist a couple of years ago who did special blood tests for such diseases and nothing came up, but I do have muscle soreness and sometimes I had rapidly weakening wrist and neck, in 2016 I had bad bad arthritic like fingers when I was very severe CFS but it got better slowly. The machine also seemingly picked up on my Monoclonal Gammopathy ( MGUS ) which is something a haematologist diagnosed me with about a year ago, but not in the initial 3 scans, later on.

 

[lyran]

I received my Generator X and sample digitizer yesterday. USB-cable for the generator was broken but I had a spare one. I have now run normal (not the longer one yet) biofeedback scan 3 times using saliva. Every time the found frequencies have been different and I don't find any explanations for them from the database using reverse lookup. When I add the option "include harmonics" I found a long list of "random" stuff for every frequency.

I'm now running the latest frequencies found to see if I notice a difference.

Edit: During the weekend I noticed that 2 frequencies have been the same in different scans.

 

[Tsukareta]

I received my Generator X and sample digitizer yesterday. USB-cable for the generator was broken but I had a spare one. I have now run normal (not the longer one yet) biofeedback scan 3 times using saliva. Every time the found frequencies have been different and I don't find any explanations for them from the database using reverse lookup. When I add the option "include harmonics" I found a long list of "random" stuff for every frequency.

I'm now running the latest frequencies found to see if I notice a difference.

Edit: During the weekend I noticed that 2 frequencies have been the same in different scans.

Hey thats cool, I don't have the sample digitizer so im just running the 'quick' scans with the TENS pads on my hand and ankle area, honestly apart from one time where running the detected frequencies gave me a fever and I went back to bed in the middle of the day, and after that I felt good I haven't seen much obvious therapeutic benefit from the biofeedback scans. It has picked up things that line up with my symptoms or expected issues, sometimes even stuff I was diagnosed with like the MGUS but its also missed things I would expect it to pick up on like SIBO, CFS itself, shoulder pain when I was sleeping without a pillow too much and bending my neck.

I need to do more testing e.g. try it on other people, hopefully will test it on my brother very soon as he has been unusually tired in the past few days which I visibly noticed. I still think this machine is VERY useful though even if the biofeedback turns out to be naff. The machine seems to be especially effective against symptoms you might expect to involve the nerve system e.g. stress, anxiety, sympathetic overdrive. Currently im running the " Parasympathetic Nervous System Diseases " program with the contact healing preset because I was getting that feeling of burnout with a fast heart rate, what we tend to feel when we are heading for a 'crash', it seemed to clear it up pretty fast. I have also been running Remove Ammonia, Idiopathic Environmental Hypersensitivity, IGE mediated Hypersensitivity, MCAS, etc because I started getting red itchy eyes this week, a histamine issue probably, Generate ATP can be useful, its using the earths frequency. I also found this thing called the Myers Detox Podcast thats seemed to have good information about many relevant topics e.g. excess histamines paradoxical effect on the brain.

 

[lyran]

Hey thats cool, I don't have the sample digitizer so im just running the 'quick' scans with the TENS pads on my hand and ankle area, honestly apart from one time where running the detected frequencies gave me a fever and I went back to bed in the middle of the day, and after that I felt good I haven't seen much obvious therapeutic benefit from the biofeedback scans. It has picked up things that line up with my symptoms or expected issues, sometimes even stuff I was diagnosed with like the MGUS but its also missed things I would expect it to pick up on like SIBO, CFS itself, shoulder pain when I was sleeping without a pillow too much and bending my neck.

Currently im running the " Parasympathetic Nervous System Diseases " program with the contact healing preset because I was getting that feeling of burnout with a fast heart rate, what we tend to feel when we are heading for a 'crash', it seemed to clear it up pretty fast.

I would think that the TENS pad scans work as well as sample digitizer scans. I need to remember to do a baseline scan everytime before doing the actual scan. Baseline scan scans the plate without saliva on it so that the actual scan results only contain things that are in the actual saliva. I plan to do a new biofeedback scan once a week and then run the results for a week 24/7 on remote as I'm doing right now.

I have noticed some herxheimer reactions such as increased fatigue, nausea and sweating. Though I'm not 100% sure they are from running the program or just CFS related.

I also need to try that Parasympathetic program. I regret that I didn't bought another Boost and Remote as Generator X is cabable of running 2 programs at the same time.

 

[Tsukareta]

My first few scans were very consistent but since then theres only been a few frequencies that have appeared multiple times, if you save the scan results as a custom program you'll start to see when it occurs over and over, but I don't know if im seeing environmental interference. I need to try scanning other people to see if those same frequencies keep popping up because that will give me an idea, ideally scanning people with obvious and known diseases to see if the machine registers it. When I do the scan it does actually cause a sort of strain on my body, and my heart rate increases. Its hard to know whats the correct preset to use when running the results as a program. I have tried the baseline version several times but I didn't see an obvious improvement in diagnostic accuracy.

 

[lyran]

My weak adrenals are not able to handle running biofeedback results, at least not for now when I have some additional stressors in my life. Now I've twice had slight adrenal crisis and the second one was more severe with symptoms of feeling very ill and nauseous, vomiting, diarrhea, awful headache. Both times I had to took hydrocortisone to resolve the situation.

Last Thursday and Friday I was in a place where both instructors were coughing (one had flu and the other had had covid) and one participant had had stomach flu. On Saturday I did biofeedback and in the results there were SARS-CoV-2 COVID-19 #1 (DNA), SARS-CoV-2 COVID-19 #2 (DNA), Norovirus (DNA) among others. Running these results resulted the second adrenal crisis so I had to stop Spooky remote for now.

 

[lyran]

Sorry about spamming this thread with Spooky2 stuff (maybe it deserves its own thread) but I have now run biofeedback 4 times (once a week) with sample digitizer using saliva and one frequency has been present in all the scans: 1728232.39106703 Hz. This frequency contains Human herpesvirus 4 #1 (DNA) as one of the database matches. All the other frequencies vary.

 

[Carl]

Hulda Clark was a quack who was pre-occupied with parasites. There is a book by Moises Velasquez-Manoff who claims that parasites are needed by the body and it is their absence which causes allergies and autoimmunity. It's called "An Epidemic Of Absence". I cannot think why I wasted money on this book, I must of been bored or experiencing some brief stupidity at the time.

What Hulda Clark was correct about was the involvement of the Liver. The liver is overburdened from the massive detox load from the Increased Digestive Permeability which affects multiple locations including the colon where LPS enter the bloodstream promoting inflammation. The inflammation is part of what causes the fatigue and exhaustion just like it does in the elderly. Doing something to help eliminate LPS would be helpful and so are some carefully selected anti-inflammatories. Be very careful with COX-2 inhibitors because they can cause kidney damage. Glutathione, or better S-Acetyl-L-Glutathione is the safest because it is the bodies natural antioxidant and detox molecule. The idea about the hypothalamus dysfunction is a bullshit idea put out by supporters of the psychology crowd with the idea that thinking "correctly" can magically fix it.
Unfortunately none of this will help the Hypothalamus/Pituitary damage which causes so many problems. All of this is caused by a pathogenic infection in the digestive system. See Daniel Viponds research where he guesses that the cause is a pathogenic infection. I worked this out shortly after he began his research. Everything is linked to this.

A role for a leaky gut and the intestinal microbiota in the pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

There is nothing in the blood except for the consequences of the IDP. Don't take antimicrobials because when it is all worked out you will have nothing left to destroy the pathogens because they will all be highly resistant to any antimicrobials. BTW I worked all this out in Jan 2014 just before I was bitten by a tick which has occupied my time ever since.

I will recommend that you get onto that Moon Air quickly before it all runs out.

 

[almost]

See Daniel Viponds research where he guesses that the cause is a pathogenic infection.

I believe this is the paper. Interesting on an initial view.

 

[Carl]

I believe this is the paper. Interesting on an initial view.

Bonus points if you manage to spot the glaring error.

 

[lyran]

The liver is overburdened from the massive detox load from the Increased Digestive Permeability which affects multiple locations including the colon where LPS enter the bloodstream promoting inflammation. The inflammation is part of what causes the fatigue and exhaustion just like it does in the elderly. Doing something to help eliminate LPS would be helpful and so are some carefully selected anti-inflammatories.

I also believe leaky gut plays a significant role in at least subset of pwME. But the thing is, leaky gut is almost impossible to cure, I haven't heard of anyone who has been able to achieve it. Yes there are diets and supplements like anti-inflammatories, zinc carnosine etc. but they mostly just keep the inflammation at bay and don't resolve the issue.

I remember watching a video where a guy with chronic urticaria was able to heal the rash with alternative means which targeted all the toxins in the intestines, liver and kidneys but later he said the problem was occuring again and again and this was because the toxins always came back because his gut was leaking them.

 

[Tsukareta]

Sorry about spamming this thread with Spooky2 stuff (maybe it deserves its own thread) but I have now run biofeedback 4 times (once a week) with sample digitizer using saliva and one frequency has been present in all the scans: 1728232.39106703 Hz. This frequency contains Human herpesvirus 4 #1 (DNA) as one of the database matches. All the other frequencies vary.

I see, I'm not sure exactly whether I experience the adrenal crisis you mention but sometimes when I ran just the scan it feels like my body is too tired for it and it feels quite uncomfortable like its putting a strain on the body, a bit like my chemical sensitivity reactions. The sample digitizer was something I didn't consider, I wonder if it could help eliminate background electronic noise as part of the equation, I also wonder whether running the machine from a battery, outdoors might help, this is just me wondering and speculating though. I do get certain freqs that come up over and over, one of them is 42800 hz, and 2 nearby frequencies that also repeatedly appear, the reverse lookup says Etat Marbre and Thrush, I don't really have any noticeable skin problems to the point where it would bother me.

Hulda Clark was a quack who was pre-occupied with parasites. There is a book by Moises Velasquez-Manoff who claims that parasites are needed by the body and it is their absence which causes allergies and autoimmunity. It's called "An Epidemic Of Absence". I cannot think why I wasted money on this book, I must of been bored or experiencing some brief stupidity at the time.

What Hulda Clark was correct about was the involvement of the Liver. The liver is overburdened from the massive detox load from the Increased Digestive Permeability which affects multiple locations including the colon where LPS enter the bloodstream promoting inflammation. The inflammation is part of what causes the fatigue and exhaustion just like it does in the elderly. Doing something to help eliminate LPS would be helpful and so are some carefully selected anti-inflammatories. Be very careful with COX-2 inhibitors because they can cause kidney damage. Glutathione, or better S-Acetyl-L-Glutathione is the safest because it is the bodies natural antioxidant and detox molecule. The idea about the hypothalamus dysfunction is a bullshit idea put out by supporters of the psychology crowd with the idea that thinking "correctly" can magically fix it.
Unfortunately none of this will help the Hypothalamus/Pituitary damage which causes so many problems. All of this is caused by a pathogenic infection in the digestive system. See Daniel Viponds research where he guesses that the cause is a pathogenic infection. I worked this out shortly after he began his research. Everything is linked to this.

There is nothing in the blood except for the consequences of the IDP. Don't take antimicrobials because when it is all worked out you will have nothing left to destroy the pathogens because they will all be highly resistant to any antimicrobials. BTW I worked all this out in Jan 2014 just before I was bitten by a tick which has occupied my time ever since.

I will recommend that you get onto that Moon Air quickly before it all runs out.

Its possible she was a quack, I would have thought that Dr Davis would have found parasites with the big study for OMF, still think the liver fluke can infect human and could be involved in some CFS cases, its just hard to evaluate. If leaky gut was a big issue which I don't necessarily dispute, then would we expect to see improvement in our energy from fasting ? I had many stomach problems last year and i'm sure that was one of them, but it was also SIBO and histamine and maybe some candida, maybe mycotoxins from the air, it was terrible but I got better.

Now im reading a different book called 'what really makes you ill', this one seems to put the blame all onto chemical toxins and EMF, and its sceptical about whether viruses exist, this is in contrast to Rife and Spooky 2 who believe in viruses, I have to look at all different opinions and try to figure out whats true and whats relevant to CFS and environmental hypersensitivity.