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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. Creachur

    New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

    @grapes I am intrigued by the references to glutathione in this thread. I have what appears to be a shortage of adenoB12. I find NAC is sometimes very useful. Of course, one of it's actions is to raise glutathione I thought you might cover this in your posts here but, I have to be honest...
  2. Creachur

    Mitochondrial Disease

    If anyone is interested in reading an introduction by Dr Cohen on mitochondrial disease then I can recommend this classic article. It is slightly dated and changes may have occurred since it was first published in 2001. "Mtochondrial cytopathy in adults: What we know so far" (link to full...
  3. Creachur

    Mitochondrial Disease conference in Akron, OH - Fri Oct 13 & Sat Oct 14

    I saw names like Cohen, Naviaux and Parikh amongst the speakers and you don't get more authoritative speakers than that when it comes to mitochondrial disease. Did any conference papers get produced for non-attendees to see what was said?
  4. Creachur

    Transdermal B12 oils

    @garyfritz @alicec I guess I haven't been referring specifically to B12 oils. Apologies if my questions have seemed a bit off topic. I figured UV degradation (during either manufacture or application of adenosyB12) would be similar whether dissolved in water or oil. To be honest, I would...
  5. Creachur

    Transdermal B12 oils

    @garyfritz Thanks for the feedback. I wonder if manufacture is conducted away from UV light. I have to say I am a bit suspicious of a company which talks about its "Miron glass" bottles as allowing light to energise its contents: On the other hand, I am not entirely persuaded that the best...
  6. Creachur

    Transdermal B12 oils

    I wonder if, in fact, adenosyl-B12 is more light sensitive than other forms. This recent study and others like it suggests it might be. They suggest adenosyl-B12 is so sensitive that it might even be acting as a switch to protect a damaged cell from reproducing. (Or something like that, as my...
  7. Creachur

    Transdermal B12 oils

    I want to try B12 oil but I believe there are no local suppliers in the UK. Instead I might use a water based solution of B12 and mix it with skin lotion before rubbing it into the skin. I am particularly interested in taking adenosyl-B12 (from here or here) but I saw an article called...
  8. Creachur

    Depersonalization/Derealization and brain fog

    My brain fog is not only a misty hard-to-see-through sort of thing but sometimes it's like a kaleidoscope in which my senses perceive in fragmented parts. If you see what I mean!
  9. Creachur

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    As I recall, Jon Stone and his colleagues at Edinburgh are leading lights in advancing the cause of Functional Neurological Disorders in the UK. I would not be at all surprised to learn that Jon Stone et al are behind the push for NICE to issue guidelines although I haven't seen the list of...
  10. Creachur

    Adenosylcobalamin

    @alicec You make many interesting points although the biochemistry you give is still rather too detailed for my level of understanding! Thank you very much for your effort to help me understand matters. I appreciate it. That's very interesting about Freddd's condition. I appear to have a...
  11. Creachur

    Adenosylcobalamin

    @Galixie I'm too new to all this to give much considered information but in my readings to catch up I spotted the following in a book which may be of interest. It deals with some of the variations in the ways B12 is administered. It doesn't mention subligual and maybe that's because, as...
  12. Creachur

    Adenosylcobalamin

    @alicec Hi Alice. There is something I am trying to understand. I think I may have asked this question elsewhere but don't have a clear understanding.... Can I take adenosylcobalamin at the same time as methylcobalamin? I think I need to take adenosylcobalamin 2 or 3 times a day because...
  13. Creachur

    Does methyl-absorbing niacin neutralise methyl supplements?

    @pattismith I took a look at the site you mentioned and the author seems very enthusiastic! He quotes so many studies that I have difficulty assessing which of the study results are reliable and which need to be confirmed. Nevertheless he brings up a lot of topics which give a lot of food for...
  14. Creachur

    Adenosylcobalamin

    @alicec thank you so much for your reply. Your perspective on B12 metabolism is very useful because I've found the research literature on organic acidemias such as MMA can go into specifics without maintaining the big picture. Also, I'm grateful you mentioned a research paper by Quadros in...
  15. Creachur

    Can Adeno B12 convert to Methyl B12?

    That sounds like an interesting book. Is it open-access or free-access, so I can browse through a copy?
  16. Creachur

    Adenosylcobalamin

    Hello AliceC. I appear to have a type of "methylmalonic acidemia" which I find is much improved when I take adenosylcobalamin but not so improved with methylcobalamin. I get the impression you have some familiarity with such metabolic diseases. Of course, in these genetic diseases it's hard...
  17. Creachur

    Does methyl-absorbing niacin neutralise methyl supplements?

    Hello Pattismith. I found that Nicotinamide Riboside is far too expensive, so I turned to niacin as a second best. One research team which looked into Nicotinamide Riboside had told me that "niacin is able to increase NAD+, and therefore works to increase NAD-levels in cells similar to...
  18. Creachur

    Does methyl-absorbing niacin neutralise methyl supplements?

    Thank you to everyone (Jim, Mary, Alice) who has replied. I appreciate it. So it seems niacin (nicotinic acid) would not affect methyl groups. Also, it would probably need large doses of nicotinamide to affect SAMe enough to affect methylation. If you recall my original message, I am...
  19. Creachur

    Does methyl-absorbing niacin neutralise methyl supplements?

    I want to take niacin to help improve energy (in the Electron Transport Chain) in the mitochondria. However, I believe that niacin absorbs methyl groups. I understand some of the basic about methylation but not the details. I have a problem with lack of energy and find supplements like...
  20. Creachur

    UK source of methylfolate (other than Metafolin)

    I believe Jarrow uses Quatrefolic for its methylcobalamin. For some reason it makes me very sleepy. I tried Quatrefolic in Swanson's Ultra Folate and I would guess Jarrow would give me the same effect. I seem to need Metafolin but it's expensive so I'm wondering what generic methylfolate...
  21. Creachur

    UK source of methylfolate (other than Metafolin)

    I have been buying methylfolate (Solgar Metafolin) from Amazon UK which offered some good discounts but Amazon stopped these discounts in summer 2017. Where else in the UK can I buy decent methylfolate at a good price? I prefer Metafolin and find I do not get quite such good results from...
  22. Creachur

    Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS)

    CPT2 is just one of many conditions which can cause carnitine deficiency. If your doc was testing for CPT2 then presumably they have established a carnitine deficiency exists. There are many other important conditions other than CPT2 in which carnitine becomes severely depleted. If you want...
  23. Creachur

    Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS)

    As I understand it, ALT is a classic liver function test and is often a marker of liver inflammation perhaps from having a fatty liver. However the lab value has to be several times higher than normal for it to be significant. In other words mild elevation is not normally significant. As an...
  24. Creachur

    Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS)

    Hello Valentijn. Sorry your recent tests were not productive. I think it is relatively common for MELAS not to be diagnosed directly but for the diagnosis to be done on what might be called "circumstantial symptoms". It seems that gene problems such as m.3243A>G are not present in everyone...
  25. Creachur

    UK shortage of Solgar Metafolin?

    I buy Solgar Metafolin on Amazon UK where the price is usually discounted. Recently the price on Amazon has shot up and there are fewer merchants offering Metafolin. Is there a wider shortage of discounted Metafolin than just Amazon UK? I wonder if there was an import channel selling at a...
  26. Creachur

    B-12 - The Hidden Story

    I would be interested to know of sources of adenosylcobalamin in the UK. I am currently using Swanson "Activated B-12" which contains 1,000 mcg adenosyl-B12 (but with 1,000 mcg hydroxo-B12 which I don't actually want). .
  27. Creachur

    Active B12 Protocol Basics

    Grapes, that's a great thread and you provided direct text of some very useful info. Thank you. Trouble is that each bit I read from your initial posts makes great sense but I can't put it all together because there are so many parts. In fact, I can't even work out what to start taking...
  28. Creachur

    Anyone else have methylfolate "wear off" after ~6 hours?

    Isn't 10mg a day a bit high? I'm new to this forum and I haven't followed the protocols or advice here but found for myself that 2 to 3 mg a day was good. I kind of felt I was pushing the dose a bit too high. I'm sure Google can find examples of people taking extreme amounts but what is a...
  29. Creachur

    Why does niacinamide make me so drowsy? (After making me alert)

    Thanks for the interesting reply. The somnolence effect I get from niacinamide is so strong and isn't accompanied by the relaxed anti-anxiety feeling you get from benzos. The somnolence is a little like (but still not very close to) the drowsiness from old style antihistamines. I was hoping...
  30. Creachur

    Why does niacinamide make me so drowsy? (After making me alert)

    The strange thing is how the niacinamide starts off making me alert and then after a few hours makes me incredibly sleepy. I have a vague memory someone may once have mentioned niacinamide in connection with tryptophan but I don't know how accurate this is.