PEM from talking patterns

[Dysfunkion]

My circadian rhytm is very good now, it's actually the best I ever had. Sleep was one of the things on my checklist to test if regulating it would make a difference. I wake up without an alarm clock early on most days and fall asleep fast.

It didn't change my ME symptoms much, I feel better a bit when I go to bed earlier and that's it. On days when for some reason I go to bed late or can't fall asleep, I am more tired, but that seems pretty normal. It's probably a different thing if someone can't sleep well on a regular basis. I wake up refreshed only when I'm in remission or close to remission.

I also can wake up without mine, though I'm trained like a dog to wake up at 6 AM anyways so that's likely why. Sleeping more or less doesn't really seem to effect mine either. There is circadian involvement of symptoms but it seems more tied to natural rises and falls of what typically does as various points anyways. My circadian rhythm in terms what is rising and falling at what times going by how I feel at certain times appears to be normal in at least what is happening but there may be more extreme rises or falls with like I said some problem with releasing or processing various things leading to things getting stuck in loops.

 

[Viala]

There is circadian involvement of symptoms but it seems more tied to natural rises and falls of what typically does as various points anyways. My circadian rhythm in terms what is rising and falling at what times going by how I feel at certain times appears to be normal in at least what is happening but there may be more extreme rises or falls with like I said some problem with releasing or processing various things leading to things getting stuck in loops.

It reminds me that in the beginning when I didn't know what's going on, ME fatigue felt similar to when I sometimes woke up in the middle of the night and felt that my body was very heavy and difficult to move. It also felt the same when I was meditating before falling asleep. I thought back then that maybe my body operated on slower brain waves which shouldn't happen during daytime, but I think that's not the case here. It may be more related to melatonin, cortisol.

There are these two videos about long covid, red light, mitochondria and melatonin which I find interesting. I can't do too much red light or sunlight though, it makes me tired. So there's some another factor here, but it nicely connects fatigue with light sensitivity, mitochondria and circadian rhytms. I also did copper loading to check if it will help with cytochrome c oxidase and light tolerance, still not a solution.

Long Covid and Fat Metabolism Mitochondrial Dysfunction: Getting Outside Might Be an Answer
Sunlight: Optimize Health and Immunity (Light Therapy and Melatonin)

 

[Dysfunkion]

It reminds me that in the beginning when I didn't know what's going on, ME fatigue felt similar to when I sometimes woke up in the middle of the night and felt that my body was very heavy and difficult to move. It also felt the same when I was meditating before falling asleep. I thought back then that maybe my body operated on slower brain waves which shouldn't happen during daytime, but I think that's not the case here. It may be more related to melatonin, cortisol.

There are these two videos about long covid, red light, mitochondria and melatonin which I find interesting. I can't do too much red light or sunlight though, it makes me tired. So there's some another factor here, but it nicely connects fatigue with light sensitivity, mitochondria and circadian rhytms. I also did copper loading to check if it will help with cytochrome c oxidase and light tolerance, still not a solution.

Long Covid and Fat Metabolism Mitochondrial Dysfunction: Getting Outside Might Be an Answer
Sunlight: Optimize Health and Immunity (Light Therapy and Melatonin)

Yes that's close to the feeling but while still awake with a stronger "brain is shutting down" feeling, I normally don't wake up through the night but in the cases I do it's almost the same heavy feeling and cognitive blunting effect but a bit different.

I have tried meltonin multiple times in the past and it just makes me extremely blunted and drowsy into the next day. Eventually it has even less of an effect and then I'm just left feeling crappy the next day with no benefits. Too much sunlight does make me very tired but I can be out all day in it and not get the same exact benefits profile from it as I do with the red/near infrared combo lamp.

I don't know what is up with all my extreme reactions to energy from light and otherwise but I also have EMF sensitivity so on this topic I'll go into it as I found something today on it, Less severe than I did before I started serrapeptase and RLT ironically but it's still so bad I can't be around wifi in the same room or a room over without getting very sick. I also get very ill when the hard drive use gets to be too much with HDD's and SSD's alike. I can play video games now on a ps5 but I need my EMF cover on it to do so comfortably enough. HDMI input to a monitor even with the radiation shield still makes me deathly ill very quickly so I'm stuck with VGA and VGA adapters. WIFI and larger unshielded screens are my biggest enemies. Typing I try not to do too much of and I really shouldn't be typing this much but here getting this aIl out is more important so I take the blow sometimes with longer posts like this. I have a funny feeling now all of this has to do with something going very wrong at cytochrome C oxidase where it all initially hits and then the downstream mitochondrial dysfunction causes the main cascade of symptoms. On that below I looked up the condition itself to see if anyone cared enough about us to actually do anymore studies on us and actually found a report!

https://www.tandfonline.com/doi/full/10.1080/19420889.2024.2384874#d1e489
- Hypersensitivity to man-made electromagnetic fields (EHS) correlates with immune responsivity to oxidative stress: a case report

Apparently What was primarily found was in this patient there was an increase in antibodies for oxidized Low-Density Lipoprotein. I attached an image of the abnormalities.

"The patient indeed showed a significant deficit in serum levels of cellular antioxidants Vitamin C, beta-Carotene, and Co-enzyme Q as compared to the norm, together with elevated levels of the ROS scavenging enzyme superoxide dismutase (SOD), indicating the presence of excess ROS. The most striking difference was an approximately 40-fold increase in the concentration of antibodies to oxidized Low-Density Lipoprotein (LDLox) (Figure 2). LDLox is a toxic lipid byproduct of oxidative stress which can contribute to atherosclerosis and inflammation at high concentrations. By contrast, the levels of circulating LDLox measured in the bloodstream were not elevated in this patient (Figure 1b, 2). This suggests that increased levels of LDLox, triggering the formation of anti-LDLox antibody, likely occurred only transiently in the patient, or else are localized in particular organs or cell types.

Both possibilities are consistent with the patient’s EHS symptoms. Even a small and localized increase in LDLox induced by EMF exposure, either in the membranes of the vasculature or in other organs, could provoke a rapid and severe immune reaction, consistent with the rapidity, severity, and nonspecific nature of the symptoms."

Like this person no dietary or environmental changes helped besides keeping away from the source. I have nearly the exact same presentation they do. They proved positive for previous infectious agents, I possibly had these but only got tested for lyme much later which I was positive for and started herbals for. I'm not sure what I would come out with on the same test now. It says nothing on mold toxicity but you often see this condition pop up the most in that community which I certainly had from my old home.

Like me too they also got benefits from RLT but it didn't combat the most severe of symptoms (they had a 730 nm wrap and mine is a near infrared combo with a spectrum of 620 ◦ 670 ◦ 760 ◦ 830 nm).

The article here also goes in multiple chemical sensitivity/heavy metal toxicity and how it relates and why it often coexists with these things. From what I'm getting from this they theorize it's from a violent reaction to cellular byproducts. This patient didn't have MCS but history of family heavy metal poisoning from genetic factors interestingly. After chelation the symptoms appeared much later even after the toxicity was taken care of.

---

On the videos... Interesting, carnitine supplemented makes me very drowsy and fatigued. It'll be in a more general way, it's not immediate PEM like shut down but I certainly get much more weighed down and mentally foggy with it. That is also in the first vdeo so interesting on the NIR light and melatonin, I wonder if that is what is happening with me and what happens if I go over my limit. On the second I didn't know that blue light was most associated with mood or specifically how lux works along with how even on a cloudy day being out there is much better than just being in a room with the daylight. I'm starting to wonder now if my exposure threshold for RLT is related the oxygen used by cytochrome C oxidase and some ROS generation that gets out of control and takes longer to clear. On that note since the exposure reaction today on the back of the neck for 15 seconds appears to be normal but with more direct effects on my system and that last night into today I wasn't feeling so hot and didn't know the reason until I found yesterday when I used the wifi on my phone quick I forgot to turn it off to my horror (the exposure lasted around an hour after my RLT use when I first got up so it was on during it, though the benefits were still the same anyhow). I wonder if a second exposure for a short time during the afternoon in the case might combat the EHS symptoms though lead to the same other RLT side effects. Only one way to find out!

If it helps and the pattern of side effects from the RLT itself remains the same I wonder if it's increasing an ROS output that's slow to clean up while reducing antibody responses from the EMF radiation. If that's correct the bounce back should be the same time frame as in normal double RLT exposure circumstances too. Good thing I saw these videos and looked into this today or I never would have made these connections or came up with this idea. Apparently how this is mopped up is the generated melatonin and RLT can immediately increase this (my reactions occur at a 15 second minimum so it happens very quickly). I wonder if serrapeptase has an effect on this antibody but I can't find any information on that.

---

Second RLT exposure of the day without the accidental wifi train wreck I unknowningly started yesterday evening was had at 1:30 PM here. Looking up enzyme activity upon exposure this can happen in seconds and go on for hours. Things generally really start happening in no surprise that 1-5 minute range (but clearly from experience from far less than this too). Will report back later on what happens.

10:30 PM - So this is interesting, I didn't after the second exposure this time experience a drop in energy so bad I was practically fighting gravity in a chair all night. Later I gave myself a close zap on the forehead area with it and the only thing it did was clear up my senses and make me more relaxed. Not sure what is happening here but next time I use it will be in a couple days at 1 minute on the lower spine as I need to continue what I'm doing here with it and then after that in a couple days 1 minute on the back of my head. Not sure if something suddenly changed for the better and the boost in tolerance happened today or what. As usual RLT continues to be the gift of weirdness that keeps on giving.

 

[Viala]

I have tried meltonin multiple times in the past and it just makes me extremely blunted and drowsy into the next day. Eventually it has even less of an effect and then I'm just left feeling crappy the next day with no benefits. Too much sunlight does make me very tired but I can be out all day in it and not get the same exact benefits profile from it as I do with the red/near infrared combo lamp.

I tried melatonin and couldn't sleep after it, I seem to have a lot of these opposite reactions, it doesn't make any sense. EMF oh I know about that, I think that's what used up my glutathione in the past and caused a lot of crashes.

So glutathione helps with that but I think that maybe it is something else and the study you cited also supports that. I tolerated EMFs quite well on anti-inflammatories, so my current theory is that inflammation is driving it, probably influencing neurotransmitter levels. My cognitive exertion threshold as in talking and being mentally active all day also went way up on these. There must be this back and forth stimulation of norepinephrine, cortisol, glutamine and also glutathione. Cortisol itself has strong anti-inflammatory properties. My SODs and glutathione are now supercharged, I notice a difference but it's nothing compared to when inflammation is down. I am still working on this.

Wow that LDL antibodies number is massive and GSH seems fine and dandy. Sounds like radiation induced allergy, but why fats specifically? That would explain why I felt better on a low fat diet, no fats, no problem. God I do not want to change to low fat diet again.

By contrast, the levels of circulating LDLox measured in the bloodstream were not elevated in this patient. This suggests that increased levels of LDLox, triggering the formation of anti-LDLox antibody, likely occurred only transiently in the patient, or else are localized in particular organs or cell types.

This summarizes well some of my relapses. If it's localized it may be similar to MADD disease. Fats seem to somehow be at the center of many things related to ME.

I did bright light therapy which is good for stimulating cortisol and also red light therapy. Rlt occassionally made me feel better, sometimes worse.

 

[Dysfunkion]

I tried melatonin and couldn't sleep after it, I seem to have a lot of these opposite reactions, it doesn't make any sense. EMF oh I know about that, I think that's what used up my glutathione in the past and caused a lot of crashes.

So glutathione helps with that but I think that maybe it is something else and the study you cited also supports that. I tolerated EMFs quite well on anti-inflammatories, so my current theory is that inflammation is driving it, probably influencing neurotransmitter levels. My cognitive exertion threshold as in talking and being mentally active all day also went way up on these. There must be this back and forth stimulation of norepinephrine, cortisol, glutamine and also glutathione. Cortisol itself has strong anti-inflammatory properties. My SODs and glutathione are now supercharged, I notice a difference but it's nothing compared to when inflammation is down. I am still working on this.

Wow that LDL antibodies number is massive and GSH seems fine and dandy. Sounds like radiation induced allergy, but why fats specifically? That would explain why I felt better on a low fat diet, no fats, no problem. God I do not want to change to low fat diet again.



This summarizes well some of my relapses. If it's localized it may be similar to MADD disease. Fats seem to somehow be at the center of many things related to ME.

I did bright light therapy which is good for stimulating cortisol and also red light therapy. Rlt occassionally made me feel better, sometimes worse.

What glutathione and at what dose did you use, still taking it? One of the things I haven't tried yet because of peoples all over the place experiences with it but I'm open to giving it a shot now.

Besides this study, nobody knows but like you said that is what it feels like, something gets really messed up in the nervous system and the worse I'm doing in other ways the less tolerance I have for it. I'm really sick of everything I need to even use a normal computer all the time barely pumping out any power in comparison to other systems out there but as long as I stay away from the worst I tend to do alright. I'm already on many anti-inflammatories and with my red light I stay above the water. I'm at the point where I can't even cut out much more normally without starving, I already don't process things well and it's difficult for me to gain weight and if I manage keeping it on is mission impossible. Like I'm even struggling because the price of the peanuts I use for peanut butter with chia seeds for breakfast every morning that I top with cinnamon have gone up so much. I'm spending nearly twice as much to eat the same amount. So now I'm looking for even more ways to manage that when I already need more fats and protein than healthy people a day. Like I said I can't eat much less without starving and since I'm working soon that cut down would get dangerous. I may be stuck just spending more a month for the same and being happy I still have a job.

Why it has to do with fats and the digestive system so much is beyond me though, it's one of the first places that gets hit with EMF over exposure. It's sound kind of gurgly and then get more bloated soon after (the same will happen with over stimulation from talking or thinking too much). Then all the fun begins from there. Maybe with it some complex neuro-signalling cascade just commonly leads to specifically that happening almost like a glitch.

I actually just used my red light for the second time today. Interesting results, it has now become stimulating instead of nearly knocking me out with more use. am I a complaining? Not really it still has benefits but now with this switch up I need to dial back because the stimulation effect also increases how prone I am to anxiety. Nothing with this tired old body ever stays the same. Always gotta throw me a curve ball like this to go back to the drawing board with.

 

[Viala]

What glutathione and at what dose did you use, still taking it? One of the things I haven't tried yet because of peoples all over the place experiences with it but I'm open to giving it a shot now.

I started using glutathione only recently. It's a reduced form, 250mg capsule daily. It seems to work more or less the same as glutamine and glycine, which both are needed to create glutathione. I would take more but I read that after a while it can lower our own GSH production, so I don't want to risk it and take too much. I have a feeling that more would increase EMF tolerance further. What anti-inflammatories do you use?

This comment reminded me about histamine, which may be as important as anything else regarding EMF. I remember one study when it was clear that regular few hours PC radiation increased histamine levels, it was not even ME study, a general study with a healthy cohort vs controls. Histamine can cause inflammatory cascade as well and as it was said in that thread, it competes with dopamine and can cause fatigue because of low norepinephrine levels. I need to look into histamine more closely again.

Weight issues, I hear you. I have to be very careful with my diet, I'm already too thin now, since so many things I eat somehow cause problems down the road. I've been switching a lot between low fat and low carb diet. It seems low fat is better for energy, including radiation tolerance, then there are food intolerances, a lot of small things to identify that can affect energy levels, because they can be inflammatory, it's a wild jungle for us whatever we do. I've been working on proper fat metabolism for a long time and there's still something else to be worked on. Microbiome maybe.

Regarding red light, I do 10 minutes of incandescent light about 4000lux every day, head and shoulders. It definitely changes something because I can feel the difference after one day of not using it. I never used red light LEDs.

 

[Dysfunkion]

I started using glutathione only recently. It's a reduced form, 250mg capsule daily. It seems to work more or less the same as glutamine and glycine, which both are needed to create glutathione. I would take more but I read that after a while it can lower our own GSH production, so I don't want to risk it and take too much. I have a feeling that more would increase EMF tolerance further. What anti-inflammatories do you use?

This comment reminded me about histamine, which may be as important as anything else regarding EMF. I remember one study when it was clear that regular few hours PC radiation increased histamine levels, it was not even ME study, a general study with a healthy cohort vs controls. Histamine can cause inflammatory cascade as well and as it was said in that thread, it competes with dopamine and can cause fatigue because of low norepinephrine levels. I need to look into histamine more closely again.

Weight issues, I hear you. I have to be very careful with my diet, I'm already too thin now, since so many things I eat somehow cause problems down the road. I've been switching a lot between low fat and low carb diet. It seems low fat is better for energy, including radiation tolerance, then there are food intolerances, a lot of small things to identify that can affect energy levels, because they can be inflammatory, it's a wild jungle for us whatever we do. I've been working on proper fat metabolism for a long time and there's still something else to be worked on. Microbiome maybe.

Regarding red light, I do 10 minutes of incandescent light about 4000lux every day, head and shoulders. It definitely changes something because I can feel the difference after one day of not using it. I never used red light LEDs.

Yeah that's what if I start and it helps anything I don't want to happen and I'm not sure if anyone found out where that line is or if there is even any way to tell. I take propolis, serrapeptase, myrrh, and a tea of cistus/green tea every day. A weird combination but it keeps me afloat on base supplement stack otherwise of 2000 mcg methyl-b12, 2500 iu D3, 1000 mcg K2, and 2 grams of a vitamin C every morning.

My diet isn't high in histamine but I also don't know where my levels are at with it. My head always has that electric/burny feeling in it that shifts around a bit that is better or worse depending on time of day with sinus issues (mostly on one side, really affects my voice and is super annoying, its bad when the brain fog is), and red eyes that also shift a bit often (not in mold anymore, sinuses are clear, so not sure what is going on there. People in the longcovid bubble tend to get this). If I eat food high in histamine I don't get much of a reaction and I feel better in a largely fasted state. The shift in RLT effects correlated with a night I decided to try brown rice rather than my usual and since then my PEM is the same triggers with a higher degree of brain fog and pressure than feeling like I'm going to faint with my brain shutting down. Now I have more energy but more brain fog in waves.

I'm not shocked though as I've been on this symptom marry go round for over 10 years now. The state I'm stuck in right now was one of my earlier initial states after I learned how to at least not die with this through supplementing and my base diet. So it's almost like my body has a bunch of preset state loops it can get stuck in based on circumstances but never "all better". When I found this place is when after getting a condition called PFS (presented more like traditional PSSD though) that was probably kindled by the lions mane extract I was using for energy at the time and from saw palmetto is when I got my first taste of going down the bedbound road (I thankfully only reached chair bound most of the time with consistently feeling like someone scooped my brain out). Somehow though I made it back here but I'm never better. I can't with this crap, can I just have a new body please?

I try to go for lower carb these days or as low as I can handle without crashing anyways, one of my body's biggest issues is how much nutrient dense food it takes to keep it going. I stop me peanut butter and chia seeds in the morning I'm finished. I need that fat and protein density for some reason a lot more than others. I found that one out when I first got extremely ill along with the fact that in between I needed ironically longer periods of fasting to feel my best. I lost tolerance of meat after the big meat disaster where I got food poisoning from some beef which really kicked this all off (that's also when I started needing to supplement). I still can't eat land animal or bird meat but I do better with moderate consumption of seafood now and then. I can't find any patterns anymore besides avoiding as much sugar as I can and avoiding gluten where I can helps too in a very general way with how I feel. Since something completely unrelated to my guts can knock everything out of whack, taking the super strict dietary control root never really did much for me.

I started I think a bit over a month with the RLT and I'm still trying to figure out the best way to use it. I do much better with it and it plays into how well my guts do for some reason and helps greatly neurologically. So I think the microbiome problem is almost secondary but a long chain of gut and genetic factors kicked it off. My issues now are usually what you see in the people in that long covid me/cfs bubble. The neurpathy still seems to have a mind of its own though I've noticed a pattern where if I hit my forehead with the red light quickly it will a little later cause it to calm down and everything will get better to a degree temporarily.