• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. A

    Thiamine HCL powder - taste?

    Has anyone here tried pure Thiamine HCL powder and knows what it tastes like?
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    Can High Strength Vitamin B1 trigger thryoid or other endo-related issues?

    Also - does it make any sense to be doing both intermittent fasting and a strict keto diet? Both induce ketosis on their own, don’t they? Does your doc know about your diet? You might lack several different things on such a strict diet.
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    Iron deficiency in women with thyroid-specific autoantibodies 2022

    May I ask what brand you are using? I have never found iron bisglysinate in 3-figures dosages per tablet.
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    thin and limp hair

    I recommend this instagram video from hair and scalp expert (trichologist) and owner of Philip Kingsley. Blood levels required for general health is something else than levels required for hair thickness. https://www.instagram.com/reel/CgjtMkeg6D8/?igshid=YmMyMTA2M2Y= One more...
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    Teeth grinding / bruxism

    Have tried «everything» over the years. Botox in the masseter muscle is the only thing that has helped. It does not do me any favors cosmetically, though… I miss my cheeks.
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    severe head pressure - feels like head is being squeezed in a vice

    Discuss this with a migraine expert. Not just a regular doc/neurologist, but someone particularly experienced in Migraine. There are far more symptoms that can be migraine than just the most known patterns.
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    Dr Patterson on Long Haul Covid vs ME/CFS

    What brand do you use?
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    Can anybody tell me where this rash could come from? ?

    @Wanja it’s a few days since your post. Has the rash developed or does it stay the same? Skin problems is the hardest to google/self diagnose… I do even prefer a biopsy in addition to a trained dermatologist’s opinion. Particularly when it developes and/or if there are other symptoms involved...
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    Fludrocortisone side effects

    @Tella https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/florinef-fludrocortisone-for-chronic-fatigue-syndrome-mecfs/
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    Cortisol brought me back to life.

    Thank you. Do you have an example of Country and/or Brand? Can’t seem find any by searching my usually helpful resource: https://www.drugs.com/international/
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    Cortisol brought me back to life.

    Do CA always have to be compounded? Or are there any branded and ready products on the market? (Compounding is not really a thing in my area unless a larger group request it.)
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    I need to hear from people who've gotten BOTH shots of the covid vaccine

    Have you seen the poll results over at Healthrising blog? https://www.healthrising.org/blog/2021/01/28/coronavirus-vaccine-effects-chronic-fatigue-syndrome-fibromyalgia/
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    Pulse oximeter to measure oxygenation during d-lactic acidosis, air hunger, hyperventilation

    One thing that really helps my air hunger during PEM/lactic acid is vasodilation. My oxymeter do actually go drastically _down_ immediately after taking it. Then goes back to the same as it was before.
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    Pulse oximeter to measure oxygenation during d-lactic acidosis, air hunger, hyperventilation

    It does for some of us. Some not. Dr De Meirleir has adviced his patients to try out oxygen concentrators over the years. You’ll find some anecdotal experiences on this forum if you do a search.
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    Each hormone deficiency is associated with a distinct kind of fatigue. I had them all.

    You’ll find a lot of anecdotes online about a combination of T4/T3 giving better sleep and less pain than T4 alone. Google Levothyroxine (synthetic T3) or Natural Thyroid (product containing both T3 and T4). Natural Thyroid products are a lot more expensive, so that might be a factor to count in.
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    I replace ALL my hormones. This brought me back to life. But is it sustainable for decades?

    Of course. I talk about new recommendations of dosages even for those who absolutely need it.
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    I replace ALL my hormones. This brought me back to life. But is it sustainable for decades?

    I am also curious to hear more about cortisone acetate vs more common cortisones. Regardig long time use: a Rheumatologist recently mentioned that newer research shows that long time use higher than 5mg Prednisone is more dangerous than earlier assumed. A person I know with rheumo diagnosis has...
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    Anyone try green tea

    This is the answer! I drink different kinds of green tea all day. I have severe ME and I have never expected or experienced it to help my ME.
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    Anyone try green tea

    There are many types of green tea... If you want to get used to pure green tea without added taste or sweetness, Japanese Sencha is often an easy start.
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    Unrelenting Gas

    Flax seed oil could be relevant to try. (If you don’t have any issues related to this other than the amount of gas itself, I would try out different simple solution like that before starting a bigger project...)
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    N.Y. clinical trial for famotidine (Pepcid) and COVID-19

    I’ve read a lot about Pepcid in Mast Cell-realated anectodes. Covid-19 is known to cause a Cytokine Storm, something that is also found in Mastocytosis...
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    Q&A opportunity regarding coronavirus with Dr. Ron Davis.

    1. Are healthy people with recent (or previous) Epstein Barr more at risk for the severe Covid-19 course than other? 2. Sirolimus seems to be effective on Cytokine Storms in Castleman’s Disease - why is it not in the loop for testing on Covid-19 Cytokine Storm? 3. Plaquenil has been much...
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    British Shows

    @YippeeKi YOW !! It was referenced in a Lecture several years ago (bachelor level). I have never seen the actual paper myself. It focused on the predictability of the formula having an effect on the brain.
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    British Shows

    That is kind of the attraction, though. There have been research finding that Soap Opera/tv series following the same rules every time can have a similar effect on the brain as meditation.
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    British Shows

    The Hour from 2011/2012 is brilliant, still sad it was cancelled too soon. Many great british actors as well.
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    British Shows

    @lenora I understand your references, have watched most ;) Stellan - River Gillian - The fall Can also mention Collatteral and London Spy.
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    British Shows

    @Prefect I almost forgot Shetland - one of my absolute favorites of the current Shows.
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    British Shows

    @Prefect Have you watched the San Francisco-continuation of the Bletchley Circle as well? I really enjoyed Happy Valley, but a bit too heavy for me on bad days. I need to save this category for brain fog free periods, but if you are are in for the more Concentration requiring show, Line of Duty...
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    British Shows

    Same here. But I am living in a very Anglophile Country media vise, British drama is what many people around me watches for real feel good. Some favorites: Doc Martin, William and Mary, Inspector Lewis, Foyle‘s War, Cold Feet, The Bletchley Circle, Last Tango in Halifax. A few with a more...