• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. L'engle

    First time in remission with ketogenic diet

    The food that keeps you healthier is worth eating every day. Variety is less important.
  2. L'engle

    First time in remission with ketogenic diet

    I can't really do keto safely, at least for the time being, but I am trying to replace some carbs with fat and move to carbs that digest more slowly. I'm changing my breakfast from quick oats to rolled oats, which seem to keep me from being hungry longer. Also adding beet root powder and mct...
  3. L'engle

    Managing Potassium Deficiency - Share your experience

    Basically it interferes with my ability to sleep and rest and means I'm always having to keep ahead of a treadmill. Also it snowballs into runaway loss if I keep adding the things that cause it. Unlike the potassium loss with b12, which stays at a stable and manageable level, and disappears...
  4. L'engle

    Help finding B12 sources please!

    Hi, I've been looking into this. from what I can see the conversion on the bulk supplements bag I got was wrong. They had 200mcg as being equal to 20mg, when it should be .2mg. So if you took 500mcg that should only be half a mg of b12. If you did take 500mg that should have been a huge huge...
  5. L'engle

    Managing Potassium Deficiency - Share your experience

    Today I'm testing the curcumin and chaga supplement and am avoiding foods and other supplements that could contribute to potassium loss. So I should be able to get a clear picture overnight if it worsens the issue or not.
  6. L'engle

    Managing Potassium Deficiency - Share your experience

    I am in potassium loss again, though not huge amounts. After taaking boron to fix my magnesium loss, I tried out foods and supplements that contain higher sources of lithium. I haven't been able to tolerate these due to magnesium loss, which is now resolved. After a while I started having...
  7. L'engle

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    Yes I was reading an article yesterday about people being ill with viruses upwards of half the time, particularly in households with children. The conclusion was "this is normal and natural, nothing to worry about", which is... obviously not the case. The stats on life expectancy also won't...
  8. L'engle

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    Typo, you almost certainly meant to write millions with LC. Good point, I think there will be more and more ill people with each outbreak and each generation having more people sicker younger.
  9. L'engle

    Be careful with low carb / keto diets

    Seems like high protein and fat intake could lead to a risk of gout as well.
  10. L'engle

    NK cell booster Siberian ginseng working well for anxiety and depression. NK cells fight cytomegalovirus — linked to various mental health symptoms

    I've had mood improvements from a turmeric supplement, a curcumin with chaga and ashwagandha supplement, and a turmeric tea with tulsi. Reishi mushrooms also improve NK cells. Would be interesting to try the Siberian ginseng as well.
  11. L'engle

    Ketosis and constantly activated Sympathetic Nervous System

    Good gaucamole is probably really nice. Or little bits in sushi is ok. But If I buy an avocado and just have to eat the whole thing before it goes off, blech!
  12. L'engle

    Ketosis and constantly activated Sympathetic Nervous System

    I've found high fat foods like butter, coconut oil and almond butter can affect my thyroid. The symptoms can be subtle but all over the place if the thyroid gets stimulated and then crashes. This might not be the case for others but my recent attempt at keto caused a thyroid type curve through...
  13. L'engle

    Dangers of Meditation

    I remember hearing about those retreats 20 years ago. Seems like a bad idea. I remember somebody who said they were reprimanded for making snow angels because it was 'a form of communication' which was forbidden at the retreat. More like the dangers of joining a cult?
  14. L'engle

    New Brain Oxygen Mapping Technique

    @Rufous McKinney That sounds concerning. Did it resolve?
  15. L'engle

    Brain Sensitivity / Headache without the pain

    There's no real consensus on what is or isn't candida.
  16. L'engle

    My strange 'freeze' response when I try to focus on something - anyone else?

    I've had twitchy eyelids before. Autonomic stuff can be strange. I'll keep a watch for the type of thing you mention. It sounds familiar though maybe not quite the same.
  17. L'engle

    Seeking Recommendations for Vasodilators Effective in Treating ME/CFS

    I do feel much better and less achy after a hot bath. It doesn't make me able to go out and do things but it creates a restful and refreshed feeling. Almost like a healthy person when they are just going to spend an evening not doing anything.
  18. L'engle

    Brain Sensitivity / Headache without the pain

    That sounds like a good description.
  19. L'engle

    Brain Sensitivity / Headache without the pain

    Yup that sounds very familiar. Worsens into an actual headache if I push to keep doing cognitive things but my brain stops working anyway so pushing through it just becomes useless floundering.
  20. L'engle

    ME as a permenant damage to the central nervous system

    It's probably immune based as a start but then as we are forced to overdo things and keep upright postures etc, damage could occur. When I collapsed at work 15 years ago, I felt a "clunk" or "thunk" feeling in the back of my head a few seconds before having to sink to the floor. I was...
  21. L'engle

    ME as a permenant damage to the central nervous system

    I tend to agree. Sometimes I think my body might be able to improve significantly but brain fog and other neurological symptoms it seems less likely. The long covid brain scans are showing damage at a small scale and I think this will be a most likely diagnostic for us as well.
  22. L'engle

    I have more sense than a team of Neurologists

    :bang-head: :bang-head::bang-head:
  23. L'engle

    My son has been sleeping 14 to 16 hrs a day

    How did you treat it? I think my mum has this.
  24. L'engle

    My son has been sleeping 14 to 16 hrs a day

    Yes, short grain brown rice is much easier to eat than long grain. Cal-rose rice or others like that are good. Long grain brown rice can be hard to stomach.
  25. L'engle

    My son has been sleeping 14 to 16 hrs a day

    Same.
  26. L'engle

    My son has been sleeping 14 to 16 hrs a day

    Melatonin would likely make him even sleepier. Maybe he just really needs sleep for a few days to finally get over the crash from the overnight appointment. Is he bothered by how much he is sleeping, or is he just very out of it?
  27. L'engle

    Biomarker study MedUni Vienna

    Though I do think researchers are making great efforts. They just rarely get the funding to continue with the larger studies that are needed.
  28. L'engle

    Biomarker study MedUni Vienna

    How many times have we heard 'possible biomarker'.
  29. L'engle

    Why is my fatigue down while I have my menstrual period?

    Might be worth trying zinc as a simple way to balance estrogen dominance. Definitely good to get tests and find out as much as you can!
  30. L'engle

    Severe LDN side effects continuing even after stopping the medication?

    Operator overloading has its uses, in IT and elsewhere. This is off-topic, and not something we're going to solve here.