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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. maz

    Ibuprofen reduces my fatigue significantly

    Ibuprofen gives me energy, a significant amount. The problem is that I have to take a lot, 800mg an sometimes it doesn't help until the second dose. I am older (62) and I am concerned about my kidney function and of course, my stomach, so I try not to use it daily. It is the only thing I have...
  2. maz

    Folic Acid Overdose and subsequent landslide

    I'm not a medical expert and not even as experienced as many on here so I can't give anty recommendations. I would suggest looking up Caledonia on here - you should be able to find her articles on methylation quite easily and get some ideas from there. I only take 250mcg I buy the 1000mcg...
  3. maz

    Ibuprofen reduces my fatigue significantly

    Don't know if anyone will see this but I too can get significant relief from fatigue with ibuprofen. I've been using 2-3 X 400mg a day for the past 5 weeks since I had a virus which caused me to crash. I already take tramadol which helps my energy levels when I'm not at rock bottom but with...
  4. maz

    Folic Acid Overdose and subsequent landslide

    Personally, I try to remember to take very small amounts of supplements to begin with to check my tolerance. Some people seem to only tolerate a crumb of some supplements. I'm not quite that sensitive but I have wished on many occasions that I could turn the clock back while experiencing...
  5. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    No, I haven't. It's really expensive to get any tests here in the UK. They have a standard batch of "tiredness" tests, eg b12, iron, thyroid, liver function. Anything else you have to go private and pay through the nose. I'm not in a position to do that, working part-time in a low paid job...
  6. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Glad to hear the mould treatment is helping you Grapes. I'm still trying with the methylation supplements, albeit low doses. However, I started a new job 3 months ago and found that quite draining so it's hard to say how I would feel otherwise. I don't deal with stress well and it's a big...
  7. maz

    Has anybody tried NAD+ for energy ?

    Like many, I am very sensitive. I'm getting fed up of trying different things. Generally, I get all the side effects and none of the benefits so I think I will stop experimenting for a while and focus on reducing my reaction to stressfull l events, which definitely makes me ill!
  8. maz

    Bacopa

    Bacopa trial did not go well.. I felt really unwell and I got major brain fog from it, worse than any usual brain fog episodes. The dumbest thing I did under the influence of Bacopa was to fill a hot water bottle, pull the fabric cover over the hole (while keeping the actual stopper still in my...
  9. maz

    Bacopa

    Thanks for replying! I have a supplement graveyard of all the things I tried but had bad side-effects and no benefits. Like many of us I'm so sensitive so I try to research side effects before I buy now. I will report back when I've tried bacopa.
  10. maz

    Bacopa

    Did bacopa continue to help? Also, was your sleep affected or do you not have any sleep issues in the first place? So many supplements make my insomnia worse!
  11. maz

    Has anybody tried NAD+ for energy ?

    I took one niagen capsule yesterday morning and still feel like hell on earth
  12. maz

    sleep meds - cant get melatonin thro NHS

    Melatonin gives me restless leg syndrome, which I am prone to. I was ok with it until I was 53. I bought it online as mentioned by others. Nytol and phenergan (promethazine) also gives me RLS but used to work. I took amitryptiline for a while a few years back and it was great at first, then...
  13. maz

    Started Methylation Supplements, Ended Up In The ER - And Symptoms Still Persist

    Swanson Resveratrol - mainly because its reasonably priced (bearing in mind I'm in England). It may be a coincidence but I can't retest it because I have had to stop all methyl supps due to other bad reactions - fierce muscle pain, brain fog and barely controllable anger which has turned into...
  14. maz

    Started Methylation Supplements, Ended Up In The ER - And Symptoms Still Persist

    Resveratrol 250 mg a day seemed to stop my anxiety/wired feeling from methyl supps. My avatar represents how I felt when I ran out of resveratrol!
  15. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Hi Grapes, its sooo hard to know what is causing individual reactions and symptoms isn't it? I just saw on Google that its not unusual for people to get increase heart rate when taking augmentin, so folate could be innocent after all. Having said that, if B3 helps, it indicates too many...
  16. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Hey Grapes, I was thinking that maybe the increased heart rate you experienced could be linked to excess glutamate. I've read in several places that many of us have high glutamate and it seems (on wiki) that folate has glutamate in its chemical make-up. I also read that resveratrol increases...
  17. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Thanks for that, I'll keep low and slow!
  18. maz

    Does anyone else have an extremely exaggerated startle response? Need help with this.

    I've been easily startled since I was a child but much worse since having ME/CFS. However, I have noticed this last month that my reaction has reduced. Today, 2 friends jumped out at me and I barely flinched, a few days ago someone else tried to make me jump and I hardly even reacted,! I've...
  19. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    I felt crappy from the get-go when I first tried HydroxyB12 so I stopped. In hindsight, this may have been start-up but I didnt understand that then. However, having had such a good first month on Methyl b12, I never bothered going back to Hydroxy B12. My serum B12 was very high but I have...
  20. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Hi Grapes, How have you been? I found that magnesium could affect my arms going to sleep. I'm doing magnesium enemas as suggested on Dr Myhill's website, to increase uptake. I am just getting over my cold/chest infection after 18 days. I found that when I was very ill, I could take 5000mcg...
  21. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Great you're doing well now, Grapes. I got tired from lack of potassium after 3 days when I first started with MB12 and methylfolate (1 March 17). A few bananas plus potassium supps sorted that out and I was great on most days for a month after that. Then at the end of March, the wired and...
  22. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Thanks for the link for RG3 Grapes. I may give it a go later if what I am doing now doesn't work out. Although I am rather wary of Panax Ginseng, which RG3 appears to be derived from, after a bad experience with it last year - 2 days no reaction, 1 day on top of my game, 7 days massive crash...
  23. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Thanks Grapes, I was doing really well for a month on around 1000mcg mb12, 850mcg adb12 and 200 mcg calcium folinate and 400mcg methylfolate plus potassium and various other supps then, around 10 days ago, I took 2 phosphatidylserine capsules at night (probably unrelated) woke up feeling...
  24. maz

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    Hi, thanks so much for all the information Fredd and Grapes. I am having trouble getting my foggy head round it, so could I just clarify - do I take the adB12 and MB12 together or not. I am very muddled and can't figure out which of the statements below is right for escaping methyltrap: Near...
  25. maz

    Folate trap causes: b12 or methionine? Or both?

    Hey guys, what about the idea that die-off makes us feel worse before we get better anyway? I'm new on here (but had ME 11 years) and trying to do a simplified methylation protocol.
  26. maz

    Nancy Klimas video on a safe exercise program, how to do this when severe?

    I haven't seen the videos but have been trying to tone and stretch my muscles the last couple of weeks (as and when I feel able) as I was hoping it may help the terrible back pain I get when I do get some energy and tidy up a bit. I have been very gentle on myself so wondered if I could do more...
  27. maz

    My neighbor said I'm rude

    I agree, if I'm not well enough to take calls I know that anyone knocking on the door is not going to be someone I want to see (cos I don't want to speak to anyone) so I don't answer. I do try to text people to say I'm not well so will call you when I feel better and in all cases bar one, that...
  28. maz

    Neurontin

    Neurontin - bad side effects This is an old thread but for someone may come across it as I did so I would like to share my recent experience with Neurontin/gabapentin. I took 300mg at night for 4 nights. I felt very fatigued but as I have been very unstable lately, I thought I had maybe just...
  29. maz

    a quick hi , how are we all going, me first

    Hi L'engle, sorry Heaps for replying when that's not the intention of this thread but I haven't got the brain power to post "how I'm doing" at the moment - hopefully I will be a bit better tomorrow. I do want to know how L'engle is getting on with the oxygen as I recently read something about...
  30. maz

    Anyone Else get ill after exposure to sunlight - not just the heat

    I'm new to this site but have just spent a week housebound after spending an afternoon in a swimming pool (so wasn't hot) with the sun on my head. The reaction was delayed and I felt ok until lunchtime the following day. That's one of the biggest problems for me with working out what my limits...