Hello all, my first post to Phoenix Rising although I have often looked at threads before. I have had an IBD - ulcerative colitis (UC) for many, many years. The fatigue is always there though. 40% of people with UC report fatigue as a consistent debilitating symptom even when not in flare, myself included, so IBD and CFS sufferers often have lots in common and maybe some of the same processes are going on in our bodies.
I have joined because I think I may be going to get to love B2 very much as well! Thus wanted to be part of this thread to keep an eye on anything that is found out and to contribute too.
My back story in case anyone is interested: Sorry if it is not form to put it here, I'm not familiar with this forum's etiquette yet.
I have had a dreadful few years of both my UC being worse than usual and all sorts of fatigue, brain fog and anxiety type problems. Was looking everywhere for what could be wrong. I work in mental health, CBT therapy, and even took myself back to therapy thinking I must have developed social anxiety - but no, the head rushes and dizziness and weakness were always there, I was just more aware of them when others were around. Finally I realised, when I came off my B-complex supplements during a C Diff infection, that these may be a big culprit in my feeling bad but I went back on them after the infection cleared, thinking after two months of eating virtually nothing that I'd need the nutrition - dizziness back. Came off them - did better again. Throughout my time on these supplements I went from just out of range at the bottom end (which is why I was advised to start them) through to just in range at the top end (NHS UK recommended ranges)
Then I came across the MTHFR discussions and saw all those illnesses in my family so decided to do a screen and found that I am homozygous for C677 at T. I then rushed in too quickly think that the methyl bs and P5P would be a great idea - once again I felt dreadful and the colitis really flared (and this has been the experience of several other posters on a colitis forum).
So a few weeks ago I went onto steroids to clear the flare and, not only did they work for that, as happens with Prednisolone, I am full of energy and all the bits of me that were not working well change, whether it is circulation, menstrual cycle or waking up at 5am instead of 5pm.
Thus I was thinking, if I am going to manage this naturally without steroid drugs that have dangerous side effects, what can I find that both enhances cortisol production in the body (as cortisol needed to dampen inflammation) and helps with colon mucous integrity. Meanwhile, I was studying the methylation cycle to understand why the protocol for MTHFR that I'd tried had been such a disaster for me and out came B2 like a beacon, flashing about how it is going to be stolen as a co-factor by the MTHFR enzyme as long as the folic acid demands it. I wondered what B2 deficiency might do in the body and have been amazed to find that it will damage mucous membranes and, according to the Baboon studies that I know were liked on this thread higher up, suppress adrenal cortex function. The baboon study used Prednisolone on the baboons and it mimicked the same effect as replacing the B2, although with different underlying mechanisms, Prednisolone is what works for my UC (but not for all sufferers by any means). Very importantly too, B2 can cause this borderline iron deficiency anaemia. I, in common with about 1/3 of UC sufferers, are always borderline anaemic, even when not bleeding from the bowel and this is very hard to treat as iron supplements tend to cause more problems than they solve in the bowel with UC.
I have been looking up many studies about the complex interaction of folic acid/folates and B2 in the bowel. You may or may not know that folate is implicated in bowel cancer, although it can be protective too, with the c677t mutation seemingly making it more likely that dangerous changes will take place, even more likely if you have mutations in the SLC19A1 folate transporter, which I do. If any other B2 lovers are interested in the research and some experiences of B2 in relation to UC, I've posted a lot on this thread...
http://www.healingwell.com/community/default.aspx?f=38&m=2990185
I plan to get a B2 blood test next week and after that will start to adjust my diet and possibly take B2 supplement to experiment. Although I am pretty scared of supplements now after what I've done to myself with my high dose B12 and folic acid. Looking around though I can't find any study suggesting that B2 can be dangerous if too high which is certainly not true of most vits and minerals. Although there could be problems with the new red blood cells released from bone marrow I have read.
For some strange reason, there seems to have been scant research put into UC and its relation to B2, some of the other B vits yes, but not B2, which I find altogether strange given what is known so far. One thing is for sure, as soon as people get digestive problems they tend to cut out all the foods that are the highest in B2 - dairy, fortified baked products, and with UC you will be lucky if you can eat many leafy greens as a lot of the time the bowel is too inflammed to take them.
So, that is all for now, I hope to be back with some news about how it is going eventually.......
Thanks for listening
