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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. Marlène

    Severe Reaction To Niacin

    I felt like I woke up after having too much anesthetics when I took 100 mg of niacine the first time. Felt like dying.
  2. Marlène

    Low dose Naltrexone

    @jackass have you tried melatonine to sleep as well?
  3. Marlène

    feeling very bad

    Don't give up, this will pass ... too.
  4. Marlène

    Low dose Naltrexone

    If you feel depressed on LDN, my 50 cents: - you don't clear it quickly enough - your exhausted adrenals are working too hard and need some extra support - your immune system is having a hard time => sickness behavior - you were on antidepressants before and your chemistry is still too messed...
  5. Marlène

    Fed up of waking up every night at 3 am

    I got a tip and it works (sometimes): drink a glass of orangejuice + 3 grains of himalayan salt just before bedtime. The sugar is to feed the liver and the salt the adrenals at night. That way you won't (easily) wake up from the adrenaline rush.
  6. Marlène

    having the same recurring dreams

    You can't reach your goal(s) in life which is to move on, have fun, work, go on holiday, get married, have children, ...? I have something similar, I always dream I'm 6 months pregnant but then it stops. I'm pregnant forever and there's no baby. FYI: I have 3 kids and no desire whatsoever...
  7. Marlène

    Sulfite/sulfate and ammonia questions

    Who has experience doing this? Any tips on how to are very welcome :)
  8. Marlène

    Fed up of waking up every night at 3 am

    Even though I am very tired in the daytime and I do need to sleep to recuperate, I just get depressed after I get a nap :depressed: I hope it's a good sign somehow.
  9. Marlène

    Hashimoto and B12

    Thank you everyone, I will have a closer look at your information and come back soon.
  10. Marlène

    Hashimoto and B12

    So B12 deficiency can cause Hashimoto? I thought it was the other way around. This is new to me! What is LCF please? I see it everywhere. Where can I found an short explanation about paradoxical folate insufficiency? A link is enough. I appreciate your knowledge Freddd but your laps of text...
  11. Marlène

    Hashimoto and B12

    hello Ema apparently the Hashi is under control. We are seeing three doctors and they all confirm he should be feeling fine ... I will have a look at his free thyroid hormone levels. He's studying right now, don't want to disturb him to get his papers. To support the adrenals he drinks...
  12. Marlène

    Do you often need to blow your nose or have nasal symptoms?

    I remember the moment it started when I was 12. It was a cold that never stopped.
  13. Marlène

    Hashimoto and B12

    This question is for my son of 20. He suffers from Hashimoto (thyroid autoimmune disease) and chronic fatigue. We had his blood tested in every little detail and it's obvious his energy system is out of whack. His adrenals are semi-exhausted, Q10 is too low, B12 is limit, copper very low, ...
  14. Marlène

    Very sick on LDN, what to do?

    Hi, your starting dose is too high. You can even go as low as 0,10mg or 0,25 mg if needed to start again from scratch. It will take a week or two (sometimes up to a month) and then you can up to 0,25 or 0,50mg. You don't need to rush LDN, your body will be healed and it takes a lot of energy...
  15. Marlène

    Can you run ? Move quickly ?

    Before I got ill, I ran and biked regularly. When I crashed, I was in the middle of the street when the light turned red again. Real slow walker! My speech idem dito. As if I hit a invisible wall. Now I can walk at normal speed a few hundred meters and then 'the engine' refuses. Especially my...
  16. Marlène

    Extreme PEM - any experiences?

    Ouch, same story here. We shoudl stay in touch ... I have severe chronic daily headaches since the age of 6. I'm 42 now. I take Topamax 100mg to ease the pain since a few years and I eat glutenfree and avoid additives. That helps in my case. It took a few months before it helped. I also take...
  17. Marlène

    Extreme PEM - any experiences?

    @charlie1 I'm very interested in the outcome of your results. I had the same symptoms for over a year before I severely crashed. Is it especially after a mental effort? Do you have severe headaches as well?
  18. Marlène

    Extreme PEM - any experiences?

    @ charlie1 have you been tested for Addison disease?
  19. Marlène

    Low dose Naltrexone

    An interesting docu about LDN http://www.tv2.no/play/nyheter/unknown-medicine-gives-hope-to-thousands-of-patients-717059.html
  20. Marlène

    Potentially homeless after alarm upgrade

    Maybe this can help? EMF issues can be linked to vit B12 deficiency. All the best
  21. Marlène

    Do you work / have career?

    hello Antares Hi again, so sad to read you are still in this dreadful situation. If you have Crohn, did you stop eating gluten already? Have you ever heard about low dose naltrexone? Don't you have any medicine at all for your adrenals?
  22. Marlène

    The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

    Chronic Multisystem Illness I read at first, oh my ...
  23. Marlène

    Extreme PEM - any experiences?

    When I was in that same condition, my adrenals were not working anymore, I was suffering extreme orthostatic intolerance, my brain waves were about flat, I had pfeiffer, cytomegalovirus, bartonella, some other viruses as well as a severe form of chlamydia pneumonia, vit B12 deficiency, low Q10...
  24. Marlène

    Cognitive Fatigue only... while Physically Healthy. Anyone like me?

    I haven't seen your bloodwork but based upon your writings, it means your adrenals are stressed and your brain is in survival modus. That's why you don't feel tired yet. You probably produce a lot of cortisol at this moment (stress phase 2 out of 3). You have to give your brain a break (no...
  25. Marlène

    Cognitive Fatigue only... while Physically Healthy. Anyone like me?

    My son has Hashimoto (thyroid) and suffers from mental fatigue as well. It is always worse after drinking ... but we discovered it is related to gluten sensitivity now. He was prescribed: l- glutamine l-tryptophane acetyl-l-carnitine l-tyrosine taurine american ginseng DMG ginko biloba DMAE...
  26. Marlène

    Fibromyalgia solved; a pathology not in the mind (research)

    I always had "winter hands" as a teenager. They hurt soooo much. Ten years later I developed a glomus tumor in my thumb. It took them another 10 years to find out what was causing the excrutiating pain. "Glomus tumors are thought to arise from the glomus body, a thermoregulatory shunt...
  27. Marlène

    Fed up of waking up every night at 3 am

    Excellent, I can relate to that! My mind is full of ideas at night ... typical for adrenal indeed.
  28. Marlène

    Fed up of waking up every night at 3 am

    I have topamax against chronic migraines. There is a major drug interaction between these two so I have to skip this advice this time.
  29. Marlène

    Fed up of waking up every night at 3 am

    hi heapsreal, I use 1/2 of zolpidem. A full dose gives me brainfog and more headache the next day. Should I take the antihistamine when I go to sleep or when I wake up?
  30. Marlène

    Fed up of waking up every night at 3 am

    Hello zombie my saliva tests revealed I was in exhaustion stage 5, so my cortisol was very low in the evening. It does however does not give an indication what happens at 3 am. Any tips?