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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. wiltedflower77

    anxiety, food intolerances, cbs and sulfation

    @racerbiker39 I am having similar problems too for 2 years now. I've cut out all high thiol foods and can't do Epsom salts either. The only helpful thing I have to suggest is you could try taking more molybdenum (up to 1000mcg ) to help with the sulphur pathways. There is a lot of info on...
  2. wiltedflower77

    Nicotinamide Nausea & Liver

    Thanks for your replies both. @Eastman I only take half or quarter a 250mg nicotinamide at the moment. I just thought it strange that just one pill gives me nausea, which is why I thought maybe I have a slow detox pathway 1. Niacin( nicotinic acid) speeds up pathway 1 so I may try that and see...
  3. wiltedflower77

    Freddd protocol - when to start Carnitine?

    What exactly is the carnitine supposed to help with? Is it for mitochondria? I tried it for a few days it helped my ibs constipation but floored my mood which I think is to do with it turning into acetyl choline?
  4. wiltedflower77

    Nicotinamide Nausea & Liver

    Hi everyone, Wondered if anyone could help me understand my reaction to b3 niacinamide (nicotinamide)? If I take 250mg I feel more tired which I know could be to do with its effects on gaba and serotonin etc etc. But I also feel slightly nauseous and lightheaded. I have read that nicotinamide...
  5. wiltedflower77

    Mitochondrial supplements worked great then stopped...why?

    Thanks for the info Jim ☺
  6. wiltedflower77

    Mitochondrial supplements worked great then stopped...why?

    Thanks for replying @Kathevans glad it is helping you.
  7. wiltedflower77

    L-carnitine is working for me.

    I am going to try aceytl carnitine. Does anyone know is it best to take in between meals with just water or take with meals? Found conflicting advice online. Thanks
  8. wiltedflower77

    Mitochondrial supplements worked great then stopped...why?

    Hi I know this is an old post but trying to find out whether acetyl carnitine is better absorbed taken with a meal or on empty stomach? I thought aminos were supposed to be taken without protein but Dr myhill says take carnitine with meal I think. Thank you
  9. wiltedflower77

    Best doc in UK?

    Forgot to say haven't tried Phenergan or syndol but do take diphenhydramine (spelling may be wrong) which is nytol and benylin and is an antihistamine to help me sleep. It does help but feel bit groggy next day. Wouldn't want to take it every night.
  10. wiltedflower77

    Best doc in UK?

    @burgeo10 thank you for letting us know how you got on. Sounds like it was fairly positive. Hope the aciclovir helps you. Where did you get tested for EBV? Thank you
  11. wiltedflower77

    Has anyone seen Dr Bansal or Dr Chaudhuri (UK)?

    Thanks @Cheryl M for putting your feedback on your appointment with Dr Bansal. Sounds like he treats symptoms more than anything else. I've tried most those supplements on the list too! Has been helpful to know your feedback. Trying to decide on seeing someone is very tricky when there's so...
  12. wiltedflower77

    UK Ecological Doctors on Myhills list anyone?

    Hi all, am thinking of seeing one of these drs on Myhills list has anyone seen any of them and if so how did you get on? Dr Dee Marshall Dr Bernard Willis Dr Jens Rohrbeck Dr Apelles Econs Dr Shideh Pouria Thankyou
  13. wiltedflower77

    Best doc in UK?

    Thanks for replying @Countrygirl sorry to hear how ignorant your gp is being that's awful. They can't force you to do the PACE stuff surely!! Do you know what Weir does use with some patients isnt it antiviral drugs?
  14. wiltedflower77

    UK Specialists recommendations in and around London?

    Why does no one ever review doctors in the UK ? @Fat Viking ? Very difficult trying to decide on which Doctor to see when there's no recommendations to go by. Already thrown alot of money down the drain and hard to know whether it's worth throwing more money away.
  15. wiltedflower77

    Has anyone seen Dr Bansal or Dr Chaudhuri (UK)?

    Hi @Bunchy just wondering if you saw either of these Doc's and how you got on? I'm currently looking to see someone in the UK. thankyou
  16. wiltedflower77

    Best doc in UK?

    @Countrygirl what did Dr Weir do then exactly if you don't mind me asking? I am trying decide who to go and see too.
  17. wiltedflower77

    Dr Apelles Econs

    Well done for biting the bullet and booking the appointment. I've emailed 6 ecological Dr's all from the Myhill website and am just getting replies and then figuring out which one would be best suited for me. Good luck with your appointment, hope it goes well.☺ yes finding answers is not easy in...
  18. wiltedflower77

    Dr Apelles Econs

    Hi @Hilary sorry for late reply. Dr Econs does sound like he may be able to help. It's interesting on his website it says 80%, of people CFS have history of classic allergies. That's definitely true for me. Just a bit hesitant to try his clinic because my food gut problems are not allergies...
  19. wiltedflower77

    POTS and sport drinks, how to use them

    Thanks for your replies. @JaimeS which electrolyte drink do you take or make? Do people just buy potassium chloride as a powder and add it in? I used to drink coconut water but makes my stomach worse now.
  20. wiltedflower77

    Interested but wary about mucuna pruriens.

    Thankyou @Hip I am just going to pm you I hope that's ok.
  21. wiltedflower77

    sulfur & methylation doctor/practitioner

    Anyone know of or been helped by a doctor who knows about sulfur intolerance and methylation issues? Tia
  22. wiltedflower77

    sulfur & methylation doctor/ practitioner

    Does anyone know of or been helped by a doctor with knowledge of sulfur food intolerance and methylation? Tia
  23. wiltedflower77

    What supplements can help if you don't tolerate sulfur (B1, B7, MSM, taurine, onions) well?

    Hi I know this is an old post. Does anyone know if there is a doctor who knows about sulfur problems other than Dr Andy Cutler? It's too complicated to try and treat myself I'm going round in circles. Thank you anyone.
  24. wiltedflower77

    POTS and sport drinks, how to use them

    I know this is an old post but just wondered if anyone knows if all electrolyte drinks/powders have an alkalizing effect or is it just the bicarbonate form ones? I tried 1 tsp of electrolyte powder in glass water and drank in one go then got diarrhea about 1 hour later after my breakfast. It...
  25. wiltedflower77

    Interested but wary about mucuna pruriens.

    @Hip sorry me again! Do you get saffron which has 'whole ground stigmas' or 'extract standardised to 2% safranal'. ? Thank you
  26. wiltedflower77

    has anyone seen Dr Stewart in Sussex (UK)?

    No I don't have EDS thankfully. I have lung conditions, and an immune deficiency called SPAD (specific polysaccharide antibody deficiency). None of them cause me fatigue though as they're all well managed and under control. Hope you find something that helps your symptoms a bit. I know it's a...
  27. wiltedflower77

    Interested but wary about mucuna pruriens.

    Thanks @Hip I may try the saffron. The amisulpride sounds really good but I probably wouldn't tolerate it. Since cfs I've tried 12 anti depressants and all made me feel physically worse. Even just 10mg of prozac. Before cfs I was on seroxat for 10 years.
  28. wiltedflower77

    Interested but wary about mucuna pruriens.

    @Hip do you find the saffron gives you glutamate anxiety problems? I may try it but don't do too well with excess glutamate. Can't take glutamine because of that. What do you think of rhodiola for helping dopamine and serotonin? It's supposedly Mao & comt inhibitor? Sometimes I take it I...
  29. wiltedflower77

    Naltrexone in the UK

    Thank you @Hip for the dopamine list. Thanks for a lot of your posts that I've read too. Very informative and relate to them all. ☺
  30. wiltedflower77

    Naltrexone in the UK

    Thanks @charles shepherd I know no drug is risk free. It's the last thing I wanted to do try medication for cfs but after 7 years of Dr's naturopaths, nutritionists, homeopath,etc and not feeling any improvement I am feeling like anything is worth a try right now. It's good they've done one...