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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. lemonworld

    The ME Show podcast by Gary Burgess

    ive really loved the first three episodes. excited for this!
  2. lemonworld

    Tested positive on antibodies I don't understand

    @Gingergrrl No, I don't know. But my doctor might have a copy of the tests they took, so I can ask. Though out of the tests they took, I don't know which would rule out people and which wouldn't, so maybe there's no use. I wonder why we were excluded. If they think we have something else, or...
  3. lemonworld

    Tested positive on antibodies I don't understand

    My illness started with an EBV infection I think Thank you for the encouragment!
  4. lemonworld

    Tested positive on antibodies I don't understand

    @Gingergrrl No, I haven't been diagnosed with anti-phospholipid syndrome. I was just told I had those antibodies, and my doctor said she didn't know anymore about it. So I've just been reading about it online and found the term anti-phospholipid syndrome, and I'm not saying I have it, I'm just...
  5. lemonworld

    Tested positive on antibodies I don't understand

    Anticardiolipin IGM and beta2-glycoprotein IGM Tested three years appart, positive both times. My doctor said they weren't very high above the normal range, though she said she didn't know anything about it, and couldnt find much info about it other than: higher risk for miscarriage and...
  6. lemonworld

    Fall Asleep from fatigue wake up thirsty ?

    Too tired to read thread, but i have this too. I feel dehydrated and thirsty all the time, especially mornings but even right after i drink. Is it not a normal ME symptom?
  7. lemonworld

    Cheeks are always red, is it a symptom

    I think I have this too. I've been wondering if it's rosacea, but not diagnosed. It's worse on my bad ME days, but I had it before I got ME.
  8. lemonworld

    anxiety/agitation caused by LDN

    @PatJ Thank you so much! I'll take a break and then start over on a super low dose, and trying to remove the filler.
  9. lemonworld

    anxiety/agitation caused by LDN

    I think it's the 4th morning now and I'm stopping now. I can't handle this crushing anxiety and intense dreams. It's so miserable. I've seen people say it takes time to work, up to 6 months, but this is not something I can handle right now. Maybe I'll try again later. If anyone has experience...
  10. lemonworld

    anxiety/agitation caused by LDN

    Did you get anxiety from the lower doses?
  11. lemonworld

    anxiety/agitation caused by LDN

    Are there more experiences with this? I'm on day two and I have horrible anxiety (it's so bad I can't focus on anything else), unease, my heart beat feels weird, stomach ache, shallow sleep and nightmares. It's definetly the LDN causing this, as I took it for only one day last month, and got...
  12. lemonworld

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    I take 25g with four meals. I have no clue if this is a good amout though. I hope you will have good look with it! :)
  13. lemonworld

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    @TreePerson I use an unflavored one by Star Nutrition, called whey 80. I'm not sure if it's avilable in other countries and what the quality is. I take it with every meal.
  14. lemonworld

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    I seem to be helped by whey too. I've been taking around 100g (25×4) a day since april, and it seemed like an immediate improvement, that has lasted. Though April is the time of year I've gotten suddenly better in the past too, so I can't be sure if it's the whey. I was the worst I've been this...
  15. lemonworld

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    I'm confused about something. Forgive me if this is a dumb question, but if they acknowledge PEM as a core symptom, how does that even work with their understanding of the illness? If it's behavioral and false illness beliefs, how come that manifests as PEM in most patients? How come we even...
  16. lemonworld

    GETSET (white) in Lancet 22/06/17

    What? Everything about these people confuses me. It's like they say our problem is simply that we're unable to know how to live our lives. That we don't know how to shower and eat breakfast and get to work. Presenting a timetable as something groundbreaking? GET has always confused me in it's...
  17. lemonworld

    HANSON, FLUGE AND MELLA JOIN OMF SAB!!!

    This is so encouraging! Thank you :bouquet::star:
  18. lemonworld

    Red, Orange and Green wristbands- useful?

    I think this could be really useful. When I have a really bad day I'm too tired to even say I have a bad day. My familiy still can't tell by looking at me what kind of day I'm having, and sometimes it can be so overwhelming when they try to talk to me when I can't think at all. And then I feel...
  19. lemonworld

    "Young people have a better chance of recovery", how much do we know about this?

    Thank you so much for the responses! (I'm very foggy today, sorry) When I first got ill, doctors and everyone else kept saying I would recover because I was young, and I should just ignore my symptoms and push through and I would be back to normal soon. (I was an athlete, so of course that was...
  20. lemonworld

    "Young people have a better chance of recovery", how much do we know about this?

    I feel like I quite often see it mentioned here that young people have a good chance of recovering from ME. This is a phrase I often hear from people that aren't aware of how severe and chronic ME usually is, but I'm surprised to see it mentioned here as well. Is there much proof to these...
  21. lemonworld

    Medical cannabis for making existence more bearable?

    I'm not familiar with CD4/CD8, I'm sorry. I'm looking at my blood results now, and can't find something like it. Could it be called something different?
  22. lemonworld

    Medical cannabis for making existence more bearable?

    Yupp I feel the same. Hope things get better for you somehow, or that there will be things to give you strenght along the way. High five :hug:
  23. lemonworld

    Medical cannabis for making existence more bearable?

    I got ill 9 years ago, after mono. It's been a slow worsening since then. I was made to continue school, and was able to somewhat keep going, until 3 years ago. The last 3 years I've been almost completely bed bound and getting worse every month. Nothing has helped so far. I have an ME...
  24. lemonworld

    Medical cannabis for making existence more bearable?

    I'm bed bound, except for trips to the bathroom and kitchen. I can barely talk with people. I'm going out of my mind living like this. I can use the computer, but reading and concentrating is very hard, so I can't really do any fulfilling acitivites. My mental health has become shit lately...
  25. lemonworld

    How is it to be an adolescent living with chronic fatigue syndrome/myalgic encephalomyelitis?

    As someone who got ME in their adolecence, the feelings about the illness she describes from the interviews (loneliness, worry about missing school, identity etc) was true for me. Though I think that can’t be surprising. These are surely normal reactions from becoming severly ill at a young age...
  26. lemonworld

    The Lost Years

    9 years, since 14. slow deterioration
  27. lemonworld

    questions about caution with vitamin A & E

    I'm planning to start methylation and want to get the basic supplements down before then. I haven't started vitamin A or E yet, as I'm usure of what is the best way to do it or if they are safe? I see so much contradicting advice out there, and I realize there might not be a definitive answer...
  28. lemonworld

    Getting up late and the strain it causes relationships.

    @Misfit Toy Thank you for making these great topics! I love that you bring up these different challenges about the illness that maybe aren't talked about so often. And I love that you say it as it is. It gives me so much strength and motivation to know that other people face similar challenges...
  29. lemonworld

    Getting up late and the strain it causes relationships.

    This thread is golden! And brings up a lot of frustration in me i didn't even realize I had lol. This thought that people that wake up early are better than those who don't is so disgusting and unnecessary. I have gotten it so much from my family over the years, especially in the beginning of...
  30. lemonworld

    Are there instances when you can't have Rituximab?

    I'm sorry if this is asked somewhere else, but I'm wondering if there are instances when you can't have Rituximab? if you have any other health issues or conditions?