• Welcome to Phoenix Rising!

    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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Search results

  1. A

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    PACE cadets...? Because they're out of touch with reality if they think PACE can stand up to scrutiny.
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    IVF /fertility treatment effect on energy

    @Belgiangirl, did the IVF drug you took contain Human Chorionic Gonadotropin (HCG)?
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    Strange reaction to probiotics, any ideas?

    Hi @mrquasar, Do the probiotics you take contain any Aspergillus derived ingredients? We were discussing possible allergy to fungus derived ingredients in another thread. I just googled cheese and aspergillus, but didn't check the pages that came up, but just wondering if this might be...
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    Article Severe ME Day of Understanding and Remembrance: Aug. 8, 2017

    @Jody, beautifully written. :cry:
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    Skyrocketing BP and HR after eating

    @Forbin, I think I've read that high fructose corn syrup is also loaded with sulfites(?) so that could be a double whammy if you're sensitive to them.
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    What are the tests available to measure Glucagon?

    Hi Peyt, this site mentions that glycogen storage disease can be a reason why patients develop hypoglycemia during a glucagon stimulation test. From page; "Hypoglycaemia may occur in: phaeochromocytoma, insulinoma, after prolonged starvation (> 48 hours) or glycogen storage diseases (inability...
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    Ketogenic diet-MCAS person who may be salicylate intolerant.

    Yeah, I think that's paracetamol, which is different. But don't quote me on that... Glad you have some safe foods to eat. Baked potatoes...yum... I think peas are low salicylate, but high copper. I eat them anyway, cos I like them. :-) A lot of personal care products are high salicylate too...
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    Ketogenic diet-MCAS person who may be salicylate intolerant.

    Hi @Misfit Toy, I wrote this, then forgot to post it...oops... I could never understand why I felt better when I ate crap, until I realised I have a salicylate sensitivity. High salicylate foods definitely make me more irritable, and spaced out, insomnia and restless legs are worse too. Do...
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    Medical Officer for England respond the MEA's petition

    What a shame we couldn't hire a flash mob to form a circle on the steps of parliament, and pass a life sized stuffed toy deer to each other...while wearing ME is not MUPS t-shirts...and chanting, "Your guidelines suck, stop passing the buck!
  10. A

    Cheeks are always red, is it a symptom

    That could be an alcohol flush, or a reaction to sulfites which most wines contain, as a preservative. Lots of other foods and beverages contain sulfites, like dried fruit, coconut, many processed products, etc.(Sulfites are a trigger for some asthmatics too.) Exercise does cause mast cells to...
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    Just had my first serious allergic reaction

    You forgot tornadoes...
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    C3 and C4 complement levels in MCAD?

    @TrixieStix, Glad to hear you are making progress. Sorry if I've got this wrong, but I think you mentioned kidney disease in your family? You've probably seen this already, but in case you haven't, it mentions reoccurring bacterial infections, and renal failure; Complement Factor H Deficiency...
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    Just had my first serious allergic reaction

    It's so annoying, that one, isn't it. Equally annoying is when you ask the seller what these "natural" flavors are, and they can't tell you, but assure you that they are harmless, because they're "natural."
  14. A

    Just had my first serious allergic reaction

    If anyone thinks enzymes grown on fungus may be a problem for them, please be aware that sometimes they can be used in the manufacture of seemingly harmless foods, like brown rice syrup. (Aspergillus.)
  15. A

    Cheeks are always red, is it a symptom

    I do get this, but it's not constant. Facial flushing can be a symptom of mast cell disorders. Also a response to sulfites in foods and drinks. Then there's the Lupus butterfly rash, which can apparently(?) just be reddness, without an actual rash. Edit: Also, if I eat too many high sulfur...
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    Just had my first serious allergic reaction

    @bspg, sorry to hear you had to go through this, but glad to hear help was at hand. I agree that the enzymes are a red flag, I think(?) it depends what they are derived from eg, a fungus, which might be a problem for some people.
  17. A

    Help - Angioedema Reaction to Antiobiotics - may need to go to ER for antiobiotic IV

    Very glad to hear that @Jennifer J, hopefully the worst is over. :thumbsup:
  18. A

    Help - Angioedema Reaction to Antiobiotics - may need to go to ER for antiobiotic IV

    So sorry to hear this, @Jennifer J. I don't have anything useful to say, just a :hug:
  19. A

    Comment by 'antherder' in 'Trip to the neurologist'

    Cheesus, cockwomble is a new word for me too! Thanks for introducing me to it. Sorry you had to encounter one, but glad you stood your ground.
  20. A

    Stubborn Gastritis Symptoms - and where to look next

    Me too. I've read that this can be related to allergic conditions. Something to do with cross reactivity between foods/pollens. @Booksellercate, it might be worth looking into allergic conditions, like mast cell disorders, if you haven't already (there is a separate forum here about them). Also...
  21. A

    Nausea and Today's A&E experience

    Does she know you were given a fluoroquinolone for your pneumonia? From what I've read, it appears that symptoms/side effects can be delayed, so the connection isn't always made that they may be antibiotic related.
  22. A

    Is Poop Doping the Next Big Thing?

    Or they might recruit dung beetles to do the dirty work for them...
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    I feel like giving up on life

    @Konflict, I don't have any advice to offer on those tests, but just hoping the appointment goes well for you.:-)
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    Adding Vegetables and Herbs to Diet

    @bdonovan, a lot of those veggies and herbs are high in salicylates or high in sulfur, which could cause gut symptoms if you are sensitive to them.
  25. A

    Chocolate - likely to be causing 'wired but tired'?

    I know of someone who did discover that chocolate was the apparent cause of their heart symptoms. Anecdotal, of course.
  26. A

    Chocolate - likely to be causing 'wired but tired'?

    I like the taste of chocolate, but it makes me feel rather ill. I'm very sensitive to caffeine, and can't drink more than one cup a day, but definitely don't get the same reaction. Chocolate is apparently high histamine, high salicylate, and high copper, so I suspect that may be why I react so...
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    If the Norway Rituximab trials are a success - Will it be available worldwide?

    Exactly. The stigma is still going to be the biggest barrier to treatment, in my opinion. Whenever I've mentioned research in the past, it has always been to my own detriment.
  28. A

    If the Norway Rituximab trials are a success - Will it be available worldwide?

    I'm wondering whether the Fluge and Mella Rituximab ME trial would be common knowledge yet within certain medical disciplines. Or is it too early for that? Does anyone know? Would most oncologists know about it? What about immunologists? Rheumatologists? Or would they only be aware of it if...
  29. A

    Cleanliness in between showering

    Apple cider vinegar mixed with water is a good anti-bacterial to use with a cloth, and doesn't need rinsing like soap. I use about half and half - just be sure to patch test it first to see if your skin approves of that ratio. I know ACV doesn't agree with everyone (it's too hard on my stomach...
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    Study The Wild Animals and You Will Improve......

    I always thought bears ate porridge... Although this bear clearly feels the need to supplement his diet with brownies; http://www.bbc.com/news/world-us-canada-39865062