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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. lyran

    [Case study] CFS/ME remission story severe patient [2008]

    Yes I used to make it. At first it had a calming effect probably because it decresed inflammation in intestines. After some time of using it, I didn't notice anything but I could use it without issues (I can't use probiotics). It is worth trying.
  2. lyran

    Very Interesting Research on Long Covid - Is this very similar for ME?

    Could be our "good" old friend Epstein-Barr or HHV-6 which activates with stress and another infection.
  3. lyran

    Lots of long COVID patients reporting major improvements with lactoferrin

    There is this liposomal lactoferrin product from Pepeior in Amazon. It contains 1000 mg of apolactoferrin in one huge softgel capsule and the bottle contains 60 capsules, costs ~20€. I am a bit sceptic that it actually contains that amount and it actually is apolactoferrin but I bought it and...
  4. lyran

    r/CFS is the biggest shithole I've ever seen

    Of course try to treat yourself but don't stress about it. Also accept that you have a physical disease. After I lost my hope with western medical system, I have spent thousands of euros in different alternative treatments in the past only to notice that they did nothing and saw myself as I...
  5. lyran

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

    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...
  6. lyran

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

    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...
  7. lyran

    Patients say keto helps with their mental illness. Science is racing to understand why. NPR 2014

    Well dah, didn't it cross in their minds that it might not be "mental" illness? Psychiatry is so pseudoscience.
  8. lyran

    Anyone experience worsening of symptoms after staring acyclovir?

    @ilivewithcfs Could you try taking half the dose of Acyclovir to see if that still causes insomnia? To me it seems that it somehow stimulates you, maybe your nervous system?
  9. lyran

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

    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...
  10. lyran

    Why does my bedbound partner have PEM every day, despite doing nothing?

    Our brain secretes more endorphin hormones during the night and LDN potentiates this. You can take it in the morning but I haven't found it being that potent or long lasting if I take it that way. One minus is that it messes up my sleep somewhat.
  11. lyran

    Why does my bedbound partner have PEM every day, despite doing nothing?

    I'm in constant PEM mode if I don't take LDN 2-3 times a week in the evening. Otherwise my endorphin (beta-endorphins, enkephalins) levels go so low that I'm unable to function at all. Some others may have this same issue.
  12. lyran

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    These always makes me angry. I'm not sure how much these signatures can help? do they just hand them over to the government? I think the best way would be that a reporter from a large media company would write an article about this and it would be on everyones face. We the people can only change...
  13. lyran

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

    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...
  14. lyran

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

    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...
  15. lyran

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

    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.
  16. lyran

    Lots of long COVID patients reporting major improvements with lactoferrin

    Dr. Thomas Levy -- How COVID Helped Me Regain Good Health
  17. lyran

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

    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.
  18. lyran

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

    I also ordered Generator X with sample digitizer last week for the same reason. It is also more handy because you can load up to 30 programs into it and run them without a computer. It was very expensive so I just ordered the generator without other addons. I can use Boost and Remote that came...
  19. lyran

    Lots of long COVID patients reporting major improvements with lactoferrin

    I can't remember if I have asked this before but have you tried taking high dose Vitamin C (regular or liposomal) with hydrocortisone?
  20. lyran

    Lots of long COVID patients reporting major improvements with lactoferrin

    I wonder if the benefits you get from Lactoferrin are immune, inflammation or gut related. It is also known to help leaky gut and gut health overall.
  21. lyran

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

    And for those who aren't able to watch an hour long video, basically "Spooky action at a distance" just means quantum entanglement. In quantum physics distance doesn't matter, energy travels instantaneously. Remote energy healing works by the same principles. Also everything has it's own...
  22. lyran

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

    I agree. Also if you are low on for example neurotransmitters or endorphins, you can use those frequencies like dopamine or metenkefalin
  23. lyran

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

    If you mean a rife machine, you can get Spooky2 (which is mentioned several times in this thread, probably because it is one of the cheapest ones) remote kit for $166 + postage cost. No need to spend more than that if you have a Windows PC to operate the software from.
  24. lyran

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

    This may be true. My bioresonance therapist suggested using Catuaba for clonorchis and its eggs. Everything else was cleared with the herbs she told me to use so I'm pretty sure Catuaba is effective for it but maybe it didn't reach the parasite. Have you tried using Spooky2 in contact mode and...
  25. lyran

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

    This reminds me when I was with bioresonance therapist a few times. Everything else was cleared with herbs she suggested for things that were found on scan but one thing that never did clear was clonorchis sinensis which is a liver fluke. Heck, I don't even know if bioresonance works but just...
  26. lyran

    Andrographis Paniculata - and it's many effects

    In my opinion doctors are just being overly cautious. If for example something does cause ill effects in 1/10 000 people taking it for longer than one month, they must say not to use it for longer than that. There are some herbs like larrea tridentata that does cause hepatoxicity with fairly low...
  27. lyran

    Reduced Fatigue Symptoms with Amifampridine

    So is this used to stimulate acetylcholine release or are there other mechanisms also? Edit: Wasn't there issues with calcium channels in CFS/ME?
  28. lyran

    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    Yes if the pathway is working correctly.
  29. lyran

    Lots of long COVID patients reporting major improvements with lactoferrin

    I tried apolactoferrin back in 2015 when (if I remember correctly) the cost was half of what it is now. I only used 1-2 caps per day and didn't notice anything. I'm thinking if I should try bigger doses but it is just so expensive to spend that much money on another "probably won't notice any...
  30. lyran

    Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)

    Could it be because methylene blue raises serotonin levels?