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

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  1. aaron_c

    High dose vitamin B1 (thiamine)

    @godlovesatrier I'm curious to know how your thiamine experiment panned out in the end. Did you give up on it? If so what was the issue that you couldn't get past? And did the 5-HTP continue working to combat the insomnia?
  2. aaron_c

    B12 Injections vs Transdermal vs Lozenges

    @Victronix Yeah the oils seem promising as well--in theory they would bypass all the same problems that injectable B12 does. I tried to order some last year but....I can't remember if I never received any or if it was just delayed for way too long. And so I went with the injections and they...
  3. aaron_c

    B12 Injections vs Transdermal vs Lozenges

    Update: Here are my thoughts on how this fits together, including a summary of how B12 is normally absorbed. I'm posting this mostly so I can refer to it later. There's some debate about whether oral B12 is always utilized as well as injected B12 is. I know for myself injectable B12 has...
  4. aaron_c

    B12 Injections vs Transdermal vs Lozenges

    PS To be clear I don't want to sound like I'm thinking "oh I found the solution, everyone just has to inject B12 instead of take lozenges." If that were the case for all of us I think we'd know it by now. So I suspect that IF cobalamin dysfunction is a common part of our illness then there...
  5. aaron_c

    B12 Injections vs Transdermal vs Lozenges

    I've recently been exploring some B12 deficiency groups, and one thing I've seen reported by members and also one good friend of mine is that sometimes B12 injections help where lozenges do not. (I'm not saying this will be true for all of us, but it makes me curious about whether we can rule...
  6. aaron_c

    Why this reaction to CALCIUM D GLUCARATE?!?

    @drmullin30 can you say more about the potential for DIM and Ca-D-Glucarate to mobilize mercury? I knew that ALA and glutathione can bind to mercury as you describe, but I'm confused about Ca-D-Glucarate. Is it just that it spares glutathione, thereby allowing the body to resume...
  7. aaron_c

    Equilibrant Failures: Possible Causes

    @Hip I recall testing positive for high levels of candida in stool tests. I'm not sure what the most recent one would have been, but I do seem to have some sort of fungal overgrowth as I have had chronic jock itch and athlete's foot for some time now (I keep them under control with a borax...
  8. aaron_c

    Equilibrant Failures: Possible Causes

    I would like to try Equilibrant (again). Before I start modulating my immune system, however, I'd like to do as much as possible to "get my house in order." Last I heard, Equilibrant is only miraculous 30% of the time, and that probably only applies to people whose history and/or bloodwork has...
  9. aaron_c

    High dose vitamin B1 (thiamine)

    I may have answered my own question? Here's one random site that claimes Benfotiamine has five times the strength of B1. Though I don't know if that's molecule-for-molecule or mg-for-mg. https://thebenfotiamineproject.com/47/dosage/
  10. aaron_c

    High dose vitamin B1 (thiamine)

    Quick question: Does anyone know the thiamine vs benfotiamine equivalencies? Like if I'm taking 100 mg of thiamine (HCl) then how much benfotiamine would be approximately equivalent?
  11. aaron_c

    Sore tailbone anyone?

    That was my thought. Or fat-soluble vitamins like vitamin D. Or perhaps a cholesterol precursor?
  12. aaron_c

    Sore tailbone anyone?

    @Gingergrrl Tiny amounts of oral vitamin d worked for me. I take 1000 IU per day (although I also get a good amount of UV-B light to supplement that). My guess is it had something to do with the recent addition of activated charcoal to my supplement list. Calcium has worked for other people...
  13. aaron_c

    Sore tailbone anyone?

    I recently developed acute tailbone pain. To be more precise, it's pain from something just to the side of my tailbone and towards my backside. It's mostly on one side although when it gets bad it's clear that there's also some tightness on the other side. It feels like a muscle or a tendon...
  14. aaron_c

    How to Titrate to Get Out of Donut Hole Insufficiency

    Hey Yall, So I recently changed up supplements a bit including adding back magnesium after spending maybe a year off of it. Over the past week or three a muscle on one side of my tailbone has gotten quite tense and painful. I noticed that pain in that area is mentioned as a symptom of "donut...
  15. aaron_c

    Anyone have problems with Losartan?

    Like I said, I've done those blood tests a few times(my ND insisted, for exactly the reason you point out). In spite of my 2.7 grams of daily supplemental potassium that I take to eliminate the muscle-aches, blood potassium has always tested as normal. So my understanding is that science tells...
  16. aaron_c

    Anyone have problems with Losartan?

    While we're on the subject I'll also mention that Losartan seemed to cause weight gain for me, but only when I was taking malic acid too. Once I stopped the malic acid--which had never caused weight gain before--the weight gain faded away rather quickly.
  17. aaron_c

    Anyone have problems with Losartan?

    I had horrible muscle pain as well when starting Losartan. I wound up fixing that problem by taking more potassium. As I understand it Losartan is actually supposed to increase potassium but my take at this point is that it's based on an incomplete understanding of how Losartan works. In any...
  18. aaron_c

    New, Inexpensive CBS Ammonia Fix

    For better or for worse I never actually had salycilate sensitivity that I was aware of. I just had a general branfog-type symptom that was removed by taking large amounts of molybdenum and then later by taking boron, which I assume was due to difficulty converting sulfites to sulfates. I you...
  19. aaron_c

    New, Inexpensive CBS Ammonia Fix

    Hi Calexis, I can't recall whether I started molybdenum or TMG first, I started them around the same time. I don't take either now, and I consider the dose of molybdenum I was taking to be at least somewhat dangerous in retrospect. I think I appeared to need so much because I was a bit boron...
  20. aaron_c

    Sunlight and Vitamin D problems

    Many of us with ME/CFS get quite tired from vitamin D (and sometimes that means sun exposure). I wrote a post about it here you might find useful. Since I wrote that post I've confirmed in another way that high TGF-beta is involved as I lately had an issue with this kind of fatigue and was...
  21. aaron_c

    Oxymatrine: What to expect with fatigue and how long? (And my on-going journey, info and questions.)

    @Jennifer J Unfortunately I never figured out what was causing the insomnia or how to quash it, I had to stop the equilibrant because it was so bad with just a tiny dose. But please tag me if you figure out something that helps you, I'd be curious to hear!
  22. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    Huh. Selenium and iodine I can understand, if you don't have those then you can't produce thyroid hormone and then you won't produce the ATP you need to phosphorylate riboflavin or adenylate FMN. Not sure where molybdenum fits in. I found what might be Greg Russell-Jones' page, and...
  23. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    Molybdenum causes pain for you? Interesting (and I'm sure, horrible). Can you say more?
  24. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    As I understand it, molybdenum (as Molybdenum cofactor aka MoCo) is used but not used up by SUOX. I do think I've read people say that depending on diet they needed more molybdenum in order to deal with sulfites, and I trust those reports. Andrew Hall Cutler in Hair Test Interpretation...
  25. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    The point I was making and which @Gondwanaland was replying to was that I'm concerned I'm molybdenum toxic--I have too much molybdenum in my body. My concern wasn't that I have too many sulfites which need to be converted to sulfates.
  26. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    I'm still not seeing the connection. It seems like you're saying that sulfates chelate molybdenum or otherwise increase molybdenum excretion, do I have this right?
  27. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    Does sulfur chelate molybdenum? I haven't heard this. No, I don't get any pain from boron, copper, or molybdenum. But luckily for me, pain isn't generally one of my symptoms.
  28. aaron_c

    Boron, Molybdenum, SUOX and Sulfites. (The Boron Fix for Sulfites)

    @Kathevans Unfortunately, while stopping molybdenum was enough to ward off the boron insomnia for a few weeks(?), in the long run the boron insomnia continued to build. Luckily, I found that copper worked to fix it, presumably by chelating some molybdenum. That said, I can only take so much...
  29. aaron_c

    Emperor CDC’s New Clothes

    I think there's a very important distinction we need to make between the ME definition we use for research and the ME definition the government disseminates to clinicians. It's necessary to exclude people with comorbidities like depression from research into ME, at least until we have a...
  30. aaron_c

    Soundtrack of your CFS life…

    Two of the verses might not fit us, but hopefully someone will write alternative lyrics before the next round of protests. Also I know many of us may not feel we're able to build our life back up "brick by brick." I guess I was just happy to hear a song on the radio saying anything honest...