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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. alice111

    Why this sudden feeling of severe agitation?

    Bumping this post. I get the exact same thing @Zuriel described... comes one out of the blue and sudden :(
  2. alice111

    Flare in fungal symptoms

    hey guys, I seem to have had a massive flare up in fungal related symptoms.. toes.. and rash What could be causing this? I am eating differently.. no new meds though. Also I recently did a stool test which seemed like everything was good in that department so I'm a little confused... Any...
  3. alice111

    adderall / ritalin/ ampheta - can you take these as needed?

    well what I have found to be interesting is if i take dexedrine when I know I am going to be overexerting myself it seems like it reduces the crash significantly!! I would have thought it would be the opposite. but I have now experimented quite a few times and it is definitely the case... why...
  4. alice111

    adderall / ritalin/ ampheta - can you take these as needed?

    hey guys, just wondering for those of you who take any of the above drugs can do you take them daily or as needed? I have been taking the same dose daily for a long time, but recently realised it might be more helpful to not take it on days I know I need to rest. Is this ok to do? or is it...
  5. alice111

    Severe ME GP near Brussels?

    Yes... and he pretty much said there's nothing he can do...
  6. alice111

    Severe ME GP near Brussels?

    Hi guys, I really need your help. I have a friend who lives near Brussels (used to be a patient of KDM) and he is going downhill fast. He has no help in terms of GP, or doctor of any kind who is willing to work with him. If anyone has any suggestions or recommendations I would be so grateful!
  7. alice111

    sulfur urine smell - but feeling better??

    Hmmm thanks for the replies! So theoretically if the midodrine has my blood moving more I could be detoxing?
  8. alice111

    sulfur urine smell - but feeling better??

    hey guys! So the past week my urine has been having a suuuper strong sulfur smell which to me I associate with CBS.. however the strange thing is that I have actually been feeling BETTER... any thoughts?? is this a good sign.. eg healing? or does this mean my body is ready to deal with CBS...
  9. alice111

    Methyl folate insomnia

    @ahmo @aaron_c @Freddd How does Sam e play into this titration? It seems like the methyl folate and b12s balance each other out right? So what has to be balanced with same? Thanks so much for your help guys!
  10. alice111

    Methyl folate insomnia

    @Mary what form of b12??
  11. alice111

    Methyl folate insomnia

    @ahmo what form of b12?
  12. alice111

    Methyl folate insomnia

    @Mary @aaron_c thank you so much!!! This is really helpful :)
  13. alice111

    Methyl folate insomnia

    hi guys, So I realized I had not been taking my methyl folate (brain fog... :bang-head:) turns out it DEFINITELY helps my energy! The downside though... while I wasn't taking it my sleep was pretty decent, and now I'm back to 5am nights!! Any ideas why? What I need to titrate or increase? I'm...
  14. alice111

    What's your crash time frame?

    It is definitely frustrating, but sooooo much better now that I Know this!!! I used to think this illness was so chaotic and sporadic and I had no control, but once I figured out that (for me at least) half of it was crashing i suddenly had much more control. It does take a crazy amount of...
  15. alice111

    What's your crash time frame?

    Wow so interesting how most of you it's the next day! For me it's almost always at least 48 hours, and can even take up to five days! Does anyone else have a sort of arc to their crash? So for example day one is bad, day 2 is worse, day 3 is absolute hell, then I start to come out of it.
  16. alice111

    What's your crash time frame?

    hey guys just wondering how long it can take you to crash? Is it possible to take up to two weeks until feeling the effects? What is the longest it takes you to recover?
  17. alice111

    Antivirals and cognitive impairment...?

    hey guys! Been on valtrex for a bit now, so far everything is going pretty well, and physically I'm getting some solid improvements.. but my brain.. oh my brain.. it's not doing well... My memory has gotten really bad, I am forgetting things, and having complete black holes. Also just...
  18. alice111

    Valtrex: what should I expect?

    Just wanted to update in case anyone is looking for info about starting on valtrex. Definitely starting at a minuscule dose makes a difference. I had pretty much no reaction when doing this. I recently got a little overconfident and increased by a whole pill, wow. Really bad and weird...
  19. alice111

    Valtrex: what should I expect?

    Hey! So everything was going really really well. Just did my lastest increase kind threw caution to the wind, and jumped up by a whole tab.. :bang-head: did NOT go well, omg such wired adrenaline anxiety I had to downa fistful of benzodiazepines it was awful... but hopefull it passes!!! I still...
  20. alice111

    severe blood pooling in legs.. anyone? anything?

    And the midodrine? Do u still find it helps that?
  21. alice111

    severe blood pooling in legs.. anyone? anything?

    How severe was your blood pooling before? And did you ever try Dexedrine?
  22. alice111

    Practical ways of looking nice

    DRY SHAMPOO!!! I'm probably so late to this, but omg batiste dry shampoo bloody miracle. I love how it's marketed for "2nd day hair" but I use it for like.... 7th..8th..14th... hahaha it works miracles
  23. alice111

    Valtrex: what should I expect?

    @Thinktank hows it going on the acyclovir??
  24. alice111

    Valtrex: what should I expect?

    @Thinktank oh no! Sorry to hear that that's so frustrating! :( there's Also famvir, I don't know how it compares to the other two tho.. I'm doing ok! I havent increased again, I had a pretty bad crash so been waiting to recover. It was fully my fault hah! Anyway overall still feeling like I'm...
  25. alice111

    Valtrex: what should I expect?

    @Thinktank oh good! I hope it works out for you! Just go super slow, so far the feeling happens every some times when I increase, but it does pass! I think I increased by 1/8 every 5 days. so for example Day 1 1/8 tab once Day 6 1/8 tab twice daily Etc so literally only increasing ONE of my...
  26. alice111

    Valtrex: what should I expect?

    @Thinktank glad you asked I meant to give an update! So I'm up to 1 tab (500mg) 3 times a day. So far I'm definitely seeing improvements. I'm also having some strange things happening but I feel like that's just going to be part of the process... so far nothing that sticks around for long As...
  27. alice111

    Deteriorating

    Sorry if someone already said this, but have you tried LDN? For me it really evened things out physically and mentally. I also have a friend ho had the same results! You might want to give it a try, just start low go slow. 2.5mg is my sweet spot :)
  28. alice111

    Awareness holiday cards

    @ahmo :) Thank you!
  29. alice111

    Natural ways to raise cortisol?

    @Paralee oh that's so interesting you took it for high cortisol??! I was given it for low cortisol. I'm not expert, but from things I've read and my understanding it does help increase as it's a precursor. You can google steroid pathways in images and you can see lots of info there, how...
  30. alice111

    Cleanliness in between showering

    I don't have much to offer everyone seems to have said it all.. it's an adjustment just offer a "I feel your pain" :thumbdown: