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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. S

    Elevated uric acid

    Thank you @triffid113 for all the handy information about what you can do yourself for insulin/glucose issues! The thing about vinegar is interesting. Do you think apple cider vinegar is a good thing to incorporate? It seems to have many other benefits too for peptic issues/viral stuff etc. I...
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    Elevated uric acid

    Thank you everyone who contributed to this thread. I'm really grateful for the engagement and sorry that I haven't been able to participate in it as much as I thought I would. I think I just figured out the answer to my own question as I recently found out through a couple of blood tests that I...
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    Elevated uric acid

    It’s very normal. Just… a regular diet 🤷‍♀️ I have a BMI of 19. I eat two-three times a day. Vegetables, some carbs, some meat, mixed up with vegetarian dishes. Rarely drink sodas. Mostly water. I do drink a lot of caffeine. I don’t think it’s my diet. Or rather, I’m convinced it isn’t. Today...
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    Elevated uric acid

    Thanks a lot for your reply! Yeah I figured the diet explanation was a bit oversimplified. Especially since it doesn’t line up with the way I eat at all. And I found out about the uric acid before my first Covid infection. It’s just that I’ve read that it has to do with purine metabolism or...
  5. S

    Elevated uric acid

    Hi everyone! 👋 Discovered that I have elevated uric acid without being in the risk demographic (older, male with metabolic syndrome, big consumer of alcohol/meats). I’m the opposite of all of those things. I know gout and elevated uric acid may sometimes be genetic, but with the state of my...
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    12-Hour Saliva Cortisol Testing

    Tysm @BrightCandle for digging out your old test results! It's interesting to see what results others got. I'm sorry it didn't provide any insight for you though. I'm not sure it did for me either, other than the indication that I'm high more so than low as I previously suspected. I knew there...
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    12-Hour Saliva Cortisol Testing

    I took the plunge and tested my saliva cortisol levels. I know 12-hour salivary cortisol levels don't say much but I wanted to get a grip around if my cortisol is high or low or normal or whatever the results would show. I've always suspected my cortisol was low due to my ME/CFS symptoms and...
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    Recently had my first MRI (awaiting results question)

    Thank you for getting back @lenora! I'm really glad you got help for your mental health issues. That's important to look over too. Though I actually feel the best emotionally I have in years (which doesn't mean perfect because it's still straining physically and mentally to be chronically ill)...
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    Recently had my first MRI (awaiting results question)

    Hi again @lenora, I took a little break from the forum for awhile, but I'm really sorry to hear about your neurologist. I've never had a close relationship to a doctor like that and I don't think I ever will. But finding one that feels like family must be really helpful. Even worse losing them...
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    SIBO, Cholestyramine, Bile Acids And a Nervous System Gone Haywire

    @Outlaw, thank you so much for that theory! It's very possible. That was exactly how it felt. Some type of herxheimer reaction. But it was extreme. I felt so bad mentally and physically. Mentally it felt like all my GABA had been swiped from my body and my natural ability to calm myself was just...
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    Recently had my first MRI (awaiting results question)

    Thank you so much @lenora and @BrightCandle. I thought so myself. Somehow I found it hard to believe that they hadn't discovered the smallest bleep or spot of anything. Just knowing my brain. It feels fried. That doesn't have to translate to visible cues on an MRI but I do want to take part of...
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    Recently had my first MRI (awaiting results question)

    Thank you @hapl808! And while I do understand where you're coming from, my situation was getting unbearable before booking the previous appointment. I've been slowly drowning for the last couple of years. So even finding out about having Hashimoto's was a big breakthrough and I wouldn't have...
  13. S

    Recently had my first MRI (awaiting results question)

    For @Zebra, @lenora and anyone else interested: My MRI was clear and the result actually felt worse than I thought it would, because now I'm back to having no clue how to proceed. I asked "was it clear, clear - like zero findings at all?" and my doctor said yes. Somehow I doubted that a little...
  14. S

    Recently had my first MRI (awaiting results question)

    Thank you and of course! I hate when there’s no follow up in threads. My appointment is this Thursday. But I’m counting on it being nothing since that’s the drill with me (or us). Gosh, please be something treatable!!! Or just something. I never get used to the hopelessness of having no answers...
  15. S

    Recently had my first MRI (awaiting results question)

    It’s good that you’ve had a bunch of things checked out, but I know that with every clear test the further your heart sinks. Even worse when appointments make you crash. My symptoms are not as severe anymore so I can do appointments and tests physically without major setbacks, but it’s still...
  16. S

    Recently had my first MRI (awaiting results question)

    Same here! My PEM can also get pretty extreme. My ME/CFS symptoms (I say symptoms since I'm not officially diagnosed) has gone from moderate/severe to mild/moderate and that's great but I just have all these things wrong with me from metabolic stuff to my nervous system and hormones but nothing...
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    Recently had my first MRI (awaiting results question)

    Thank you so much for replying @lenora! I can't believe I missed your response since I didn't see it at first. Only now after a night's sleep. I'm actually in a larger city but we don't have private healthcare here so perhaps you get a little faster care when going privately. So you're...
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    Recently had my first MRI (awaiting results question)

    Well, that's a good point but easier said than done sometimes! Right now I'm mainly worrying that it will be nothing since I'm tired of experiencing all the symtoms I do, and getting small indications of things wrong without ever getting conclusive answers. It would help a ton to have something...
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    Recently had my first MRI (awaiting results question)

    Totally understandable @BrightCandle! And that's awful. I was thinking something like posting it online too and asking some forum dwelling radiologists to take a look. I think I've seen them do that sometimes. But I know what it's like to just give up hope and feel defeated at the thought of...
  20. S

    Recently had my first MRI (awaiting results question)

    Sorry to hear that @BrightCandle. It's so frustrating to never find anything when you're ill, even though it's also a relief when it's nothing serious. You could possibly ask for the scans and get a second opinion by someone? I've read posts by people with e.g. MS when researching how the...
  21. S

    Recently had my first MRI (awaiting results question)

    Right before Christmas I had my first MRI of the brain. The nurse said that the results would be available around a week later. Five days after the MRI I got a letter from my doctor with a time for a new appointment to their office two weeks later. Usually your results should be available...
  22. S

    What's your morning cortisol?

    Hi! Thank you so much for your reply @Shanti1 Yeah, that's what I thought as well. 280 sounded normal (or on the lower side since it's supposed to be the highest in the morning as you say). I found it here: https://www.ouh.nhs.uk/biochemistry/tests/tests-catalogue/cortisol.aspx and saw the...
  23. S

    What's your morning cortisol?

    Hi there! Has anyone had their morning cortisol tested? And if so what was the results? I had one that came back low years ago but it was then retested and came up normal. The last one came up at 280 (ref range 135 - 540) so I thought it was fine. I am however right now being evaluated for...
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    Innocent Heart Murmur Causes

    Thank you so much for that ambitious post @Garz. I learnt a lot! I had only ever read about acute (immediate danger) and subacute endocarditis and it always says something along the lines of "if untreated, can become fatal within six weeks to a year." So I just assumed it couldn't really...
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    Innocent Heart Murmur Causes

    Hi @Zebra and thank you for your thoughtful message! It’s not so much that I’m worried about my heart. It’s more ... I wonder if it could possibly explain things? But I feel like anytime I try to inquire about something from a doctor I just get scoffed at since nothing’s ever anything. I’ll...
  26. S

    Innocent Heart Murmur Causes

    Thank you so much Garz! A doctor did mention endocarditis as an option once but quickly brushed it off. Wouldn't that be visible on an echocardiogram though? I had one of those and they didn't report any issues. However, after my doctor brought up endocarditis and I read about it a bit I also...
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    Innocent Heart Murmur Causes

    Thank you for the suggestion! Magnesium deficiency would make sense since I have a lot of neurological symptoms as well (RLS etc), but according to my serum magnesium, I'm not deficient. I however know there are some debate on deficiency on a cellular level, but any time I supplement (topical...
  28. S

    Innocent Heart Murmur Causes

    Hello there! Lately I've been thinking about the fact that I've had an "innocent" heart murmur for several years. I've had an ultrasound of my heart and they didn't find anything structurally wrong at the time and hence the murmur was labelled innocent. That however doesn't mean that it's...
  29. S

    Does anyone know something about bile acids?

    Thank you so much again for helping! I will try to answer as well as I can! My Pancreatic Elastase was surprisingly high. It was > 500 (ref. > 200 mcg/g). My Secretory IgA was also at a good(?) level 123 (ref. <=885 mcg/g). I think that makes pancreatic insufficiency less likely. Is that...
  30. S

    Does anyone know something about bile acids?

    Thank you so much for providing your thoughts on my situation! That’s super appreciated and helpful. The Comprehensive SA indicated dysbiosis. I had a very low Firmicutes/Bacteroidetes ratio (often seen in Inflammatory Bowel disease, which I nevertheless don’t have as I’ve had multiple...