1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

A B2 story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by stridor, Sep 7, 2013.

  1. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    I realize that there is an excellent B2 thread on the go. Anyone who has waded into it can't help but be amazed by the amount of information that was exchanged last year. The problem is that the thread is no longer very active and I had uncertainty whether a new entry would even get noticed. Or that's how I feel anyway...if a moderator would like to move this to that thread, I would understand.
    My story starts with a history of ailments, Bipolar Disorder, eczema, psoriasis, folliculitis, seb-derm, lattice degeneration (holes in retinas), moderate+ tinnitus, hyperplastic polyposis (colon removed this year), CCSVI (chronic cerebrospinal venous insufficiency, Hg toxicity....and after unsafe amalgam removal I added ME/CFS, thyroid and adrenal failure to the list.
    After a tough 11 months of chelation - with any activity triggering post-exertional fatigue. I tried some mB12. My tongue swelled, developed fissures and became sore as blazes. I interpreted this as a sign that my body was rejecting the new treatment and stopped. I didn't have much in terms of improvement - I was on folic acid at the time - I had no clue what I was doing and this was months before 23andme = C677T ++
    Fast-forward to July 2012. I had diabetes insipidus and was peeing 20+ times a day (too fogged to keep track of it) - up 4-5 times a night. By this time, I had to return to work because the insurance company thought that I was malingering. I was unable to stand and think at the same time and was sent home "incapable". This inability to stand was ruining my life. I found out that it was part of ME/CFS and was related to a "measurable change in circulation" to the brain. I thought what the blazes does that mean.
    I knew people with MS had problems with the veins in the neck so I got tested for it and had bidirectional blood flow on the left side. I was on-line whining about all of the strange problems I had methylation was pointed out to me again....as well as the symptoms of B2 deficiency.
    I started mfolate 1 mg and mB12 1 mg and took 100 mg B2. A couple of weeks later the symptoms of B2 deficiency came back - different this time though. I had angry capillaries circling the corneas, cracks at the corners of my mouth, rash on my nose, cheek and left jaw line and a rash on my wiener. I realized that I wasn't peeing yellow with the B2 so I took more and more. I didn't know that it could take a couple of weeks for improvements to be noted. I decided to take it until my urine turned yellow.
    I took 18 capsules the first day and 16 capsules the next. On a whim, I tried some probiotics and just like that things settled down. I take 1+mg daily by needle and 100 mg 3 times daily otherwise. When my urine starts to clear I take a couple of probiotics. I am obviously going to have to go onto a regular regime. I also do not absorb mfolate worth a dang and take it sublingually.
    Any decrease of B2 - 200 mg a day for example, and I get parathesia along the left jawline where the majority of the rash was.
    As I said, I have gut problems and had a diseased colon removed.
    In the end, mB12 took me from being a basket-case sitting at home to being able to return to work and being put in charge of my area. BTW the diabetes Insipidus improved within days of starting the methylation supplements.
    Anyway, I don't want to drag this out as I am uncertain how much interest there is in B2 anymore. brad
    ACE Del16 ++ AGT ++ COMT ++ MTHFD1 ++ MTHFD1L ++ (x2) C677T ++ MTRR ++ (x2) NOS2 ++
    NOS3 G10T ++ TCN2 ++ TYMS ++
    BHMT R239Q +- CBS +- (x4) DAO +- FOLR2 +- FOLR3 +- (x2) FUT2 +- GAD1 +- (x7) TCN3 +-
    MTHFRD1 +- (x2) MTHFS +- NOS3 +- (x3) PEMT +- (x3) SHMT1 C1420T +- SLC19A1 +- (x2)
    VDR Bsm +-
     
  2. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    Well done for figuring out what the issue was for you! Sounds like you must also have an understanding Dr. who is prescribing the vitamin injections.

    I am beginning to think the only successful route for the next stage of the healing arts is admitting we still have very little idea how each person reacts to their environment, especially once we are in a state of metabolic distress -- including nutritional imbalances or deficits, synergistic toxicity (where a small amount of two bad things is worse than a lot of one bad thing), etc. The current medical model just doesn't admit these things matter much. Genetic testing can help inform this, clearly. So can better understanding of gut biome and it's role in the immune system as well as nutrient absorption. I find it fascinating that it is the combination of vitamins and probiotic that is pivotal for you.
     
    merylg likes this.
  3. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    Thanks for your reply. Yes, I did get lucky finding a Dr. He is open-minded and believes in treating people's symptoms and not lab results. He did not know about MTHFR until I came to him and predicted that I would have it and also have B12 transport/methylation problems - I didn't get it perfect but I was close. The next visit he knew about MTHFR having taken the time to learn.
    I had a (+) response to mB12 and he told me that he could help me further with injectable and when my 23andme results came in he increased the injections to daily. This was a real turning point for me.
    I agree with everything you said and emphasize gut involvement - ME/CFS, schizophrenia, autism...the gut is part of the picture. I need to find a good probiotic that is right for me. Without a colon, my situation is unusual.
     
  4. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    I had a short conversation with a Dr. I consult with about nutrition/digestion this week, one of the questions I had emailed him in advance was about whether he was aware of methylation. He actually wound up having researched it in advance ... on Phoenix Rising! So there's hope some of them are learning about this. Still stumped about finding someone local to work with on this, but have a call next week with a possible candidate.

    On probiotics: even with a colon, I've found their efficacy to be really wildly different -- due both to formulations but also where my gut was during any specific dosing. Some things that worked for me for months now provide the opposite effect (one supplment pill will make me worse for days). So I don't know if it is an issue of overpopulation, after a while, of certain types of probiotic organism, or what. Right now I'm resisting trying a new one recommended by a nutritionist -- because while things are bad, they are not as bad as they have been.

    Good luck finding a probiotic that works for you. In my research so far, on this forum, ones that keep coming up as helpful to people are Theralac (not Threelac which is different), VSL#3, Prescript Assist. My personal fave was somehing called Udo's Choice but I think that's only available in US. Not sure where you are in this big world.
     
  5. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    Yeah, it is a 7 hour round trip to go see that Dr. I did it every week in 2011 which was tough because I could hardly walk back then and the post-exertional fatigue from one outing seemed to shade into the next. Still, I made it. My GP, on the other hand, has only one diagnosis for me and that is Bipolar. He thinks that mercury, CFS, methylation is all part of some delusional process. He will not look at my 23andme results or familiarize himself with C677T even. He would say that I have not been improving my health...I am in "spontaneous remission". Once conferred with a psychiatric diagnosis, there is not such thing as a purely physical symptom ever again. Even without treatment since 2007 and no symptoms, the diagnosis sticks like stink.
    Oh well. I don't allow myself to get upset. Without adrenal function, stress comes with a price and life becomes one big "aversion therapy session" :) Losing adrenal function has made me a nicer guy tee-hee.
    Thanks for the advice on the probiotics. There will be some good stuff coming out in the next few years. This is a suspected gold mine for the pharmaceutical companies and they are pouring money into research. Here's something you probably already know.
    http://boingboing.net/2011/04/20/do-bacteria-control.html
     
    Sparrowhawk likes this.
  6. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    454
    Likes:
    236
    West Coast USA
    Crux likes this.
  7. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    How cool is that?!! Reminds me of when I was a kid on the farm moving the cattle away from the salt block so I could take a lick:)
     
    Sparrowhawk likes this.
  8. howirecovered

    howirecovered Senior Member

    Messages:
    144
    Likes:
    43
  9. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    I like your site. I think I sent you an email once, perhaps. Would it be preferable for me to make my "best possible recovery" before offering my story? I am still not sure what that is going to look like. I have about a year of chelation left to do.
    Also, I am not sure what type of stories you are trying to amass. I will not make a full recovery, if that is what you are looking for. My colon is gone and my adrenals are shot - I will be on hydrocortisone for life.
    On the brighter side, I have put Bipolar to rest and I have improved in terms of ME/CFS to where brain-fog runs at 15% of what it did in 2011.
    I am not certain that I have the methylation thing sorted out right yet. I have yet to meet anyone who I deem to be a "kindred spirit" - you know, someone on the same path as me. I have to take daily mB12 injections for example and I have to fight to get enough B2 into me. As you likely know, B2 is part of energy production and while my methylation SNPs are troubling, my mitochondrial are likely worse and I have yet to tackle them.
    So you see, I do not identify myself as having optimally recovered yet. I have made vast improvements but still have some mileage to cover. It's up to you. We could talk now or in several months when I have made further inroads on my remaining issues. brad
     
    Sparrowhawk likes this.
  10. howirecovered

    howirecovered Senior Member

    Messages:
    144
    Likes:
    43
    thanks Brad, I'll try you in a couple months then, kind of overwhelmed with the flooding in Boulder right now... we escaped miraculously but most of my neighbors are in deep mud with flooded basements. still raining.

    sorry to hear about your colon and adrenals. A friend of mine lost is his colon this year almost dying in the process and wrote a book about it which you might enjoy: http://trulyamazinglife.com/tptsbook (or it might be too painful for you to read).

    I'm really curious about your use of B2. my energy production is really screwed also and I'm taking very large amounts of magnesium (in addition to all the methylation supports) because it seems to boost my energy. Wondering if I might need as much B2 as you also. I see you are taking roughly 300 mg - I may experiment later with increasing a bit more... I recently increased from 50 to 100 mg after realizing it was a cousin of D-Ribose. I also increased my Ribose from 5 to 15 g a couple days ago. So many things to try.

    thanks
    -eric
     
  11. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    Yes, we have all been watching what it happening in Colorado - glad that you're fine.
    Don't be sorry about my colon and adrenals. If someone had walked up to me 10 years ago and said,"I can take away Bipolar but it will cost you a couple of body parts", I would have asked where to sign-up. Bipolar is life-limiting. Only half of our lives (at least for us rapid-cyclers) is worth living. Our illness affects everthything and everyone around us....we lose family and friends. It is not a surprise that over half attempt suicide and this disorder has one of the highest completion rates because the attempts are serious. These are not cries for help.
    The colon operation was tough. There was a couple of complications including my gut becoming paralyzed. This means that there was no place for the poisons that the liver produces to go. As they accumulate, you get pretty sick. But now, everything is working pretty good. The surgeon attached my small intestine to my rectum. I go in November to get the remaining polyps removed from there.
    I have attempted 3 times to wean off of the hydrocortisone. Not fun. It takes a couple of months to return to where I was. Right now, I don't have to stress dose if I have a busier day at work or I get bad news. My adrenals are working a bit. I will try one last time but haven't the courage yet. Crashing makes you feel like you are dying. I will try as I bring chelation to its conclusion next year. My Dr tells me that I will not succeed.
    We need something like 1.5 mg of B2 daily. Of course, that's RDA which are always too low. I take 1 mg by injection and 100 mg three times a day by mouth. If I cut back to 200 mg I start to get the angry capillaries in my eyes and a tingling/itchiness along my left jawline where the worst of the B2 rash was last Sept. Of course, I am not absorbing a fraction of what I take. My gut does not work right. I monitor the colour of my pee and when it drops I take some probiotics. I need to find a probiotic that I can take daily. Some give me gut pain. For some reason losing the lower end of the gut has changed tolerance for things at the upper end and stomach.
    Hope you don't mind me just talking here....
    Hyperplastic Polyposis is a reasonably rare disorder and little is known about it.....beyond that it is related to a problem with methylation of DNA and low glutathione. The bowels derive most of their glutathione from the bowel contents - what the liver sends downstream, and increasing levels of glutathione in the blood doesn't make much difference. This is way Gerson Therapy for cancer includes coffee enemas. The palmitates increase production of glutathione-s-transferase and so it is good for the removing toxins as well as giving gut tissues access to the glutathione it needs.
    Perhaps my gut has been starved of glutathione. There is reason to suspect that my levels are very low. Bipolar is a low glutathione condition, as is ME/CFS and I have experience with them. My need for mB12 injections daily (I learned since coming to this site) is fed not only by my TCN2 ++ ("the frailty gene") which actively transports B12 into cells, but also, glutathione is needed for the utilization of B12 once it finds its way into the cells. Rich pointed out a study that suggested this process increased effectiveness 100x !!!
    Anyway, speaking about mB12, I guess I'd better do my injection. Later, thanks for your interest. brad
     
    roxie60 and Sparrowhawk like this.
  12. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    I see I missed tying my thoughts together. My point was meant to be that if glutathione was low enough to push a disease process in the large intestine that the rest of my digestive tract might not be pristine either. I have multiple food sensitivities as most of us here seem to have. I take butylate and just started NAG and am monitoring for any indications that I am not wasting money again.
     
  13. howirecovered

    howirecovered Senior Member

    Messages:
    144
    Likes:
    43
    You could write a book... so many challenges, like being stuck in a maze I suppose.

    Your story is an amazing testimonial for probiotics - I'll keep taking them even though I don't have any indication they help me.

    I also have tried unsuccessfully to get off cortisol. Have been using isocort for seven or eight years cumulatively. What form do you use?

    Should I get the 123andme test? Has it made a significant difference for you? Up to this point I have preferred to spend my money on supplements which are probably costing me $300 a month...
     
  14. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    I have viewed it as peeling an onion. Each layer is a eureka moment. There was Q10 producing bipolar symptoms that led to my glutathione theory and NAC which was confirmed 8 months later in a study. Thought that I had the answer. More symptoms led to my testing for mercury ah-haa! Now I know what is lowering glutathione and giving me Bipolar symptoms; more symptoms and it was on to methylation and I knew why I accumulated mercury which lowered glutathione which gave me Bipolar symptoms. Then it was 23andme and now I knew the genetics behind the methylation which hoarded the mercury that decreased the glutathione that gave me Bipolar. Of course, it wasn't to be that simple and I got to factory in the colon problem and ME/CFS along the way.

    The thing is that I figured this out with an Axis I disorder, depression and faulty memory. Makes me kind of think that my GP wasn't trying very hard :)
    I have been pushed to write a book. My thing is that I have donated most of my nearly 60 years to methylation/mercury/mitochondria and do I want to live this for another 5 years, dragging my poor wife along with me? And then there is all the money that would flow in, changing my lifestyle....:)
    I could find no place that suggested that probiotics were even needed. It was gut instinct (word selection intentional as I think that the gut has a lot to say about these kinds of choices) that drove me to take them. I like human-derived but they are not easy to find in Northern Ontario.
    I take cortef = hydrocortisone 25 mg a day. 5 when I awake and 5 with breakfast, 5 at lunch, 5 at 4 pm and 5 at bedtime.

    23andme allowed me some bragging rights. I predicted based on my reaction to mfolate and mB12 that I would be MTHFR C677T or
    677/1298 compound hetero. I was C677T and it made my Dr pay closer attention to what I was saying.
    I also predicted MTR but instead got MTRR x2 (not the more serious ones) and TCN2 which isn't spoken of much here but is also known as "the frailty gene". Just as it sounds, it has a real ability to contribute to ME.
    Seeing my results the Dr said, "now, I know what you need" and increased my mB12 from twice weekly to daily and I went up the ladder 2 rungs.
    So yes, I guess I think that it is worthwhile....but not necessary. I just bought 3 tests for sick siblings and will see if we can sort out some of the mitochondrial stuff. Wish there was a site for that. .....just came to me that this site should have a separate spot for mitochondrial SNPs as I think that the real impact of MTHFR is in the mitochondria and that most of us will have problems. My mito panel is worse than methylation and you can see by my signature that is not insignificant.
     
    roxie60, Sea and Sparrowhawk like this.
  15. howirecovered

    howirecovered Senior Member

    Messages:
    144
    Likes:
    43
    funny about figuring out your health mystery with all of the brain fog, I can identify! I've had a few of those doctors that could not have been trying very hard either.

    I admire your foresight not to be dragged into writing a book - you make a great point about not dragging it out another five years. also I doubt there's a lot of money in it :D

    have you been able to notice differences in probiotics or is the human strains thing a theoretical preference? wondering what brands you like...

    Honestly all of the SNP discussion goes right over my head because I haven't taken the time to sort any of it out. But if I get my test done, I hope you'll help me analyze it:) I am totally certain that the epicenter for my issues are the mitochondria because I started losing energy about 32 years ago when I was around 12...
     
  16. Violeta

    Violeta Senior Member

    Messages:
    564
    Likes:
    213
    I hope you don't mind me adding a comment here, but something that helped greatly with my methylation problems was choline. I tried it as a result of reading Chris Masterjohn's articles on fatty liver. Here's one in case you're interested. http://www.westonaprice.org/health-issues/nonalcoholic-fatty-liver-disease I actually saw in improvement in my health before I was done with one bottle of choline/inositol. Before I took it I had to devide my Thorne Methyl Guard capsules into 5ths in order to not get sick. Also as a result of the choline I start to digest my food.

    About the same time I realized that I had a lot of symptoms of porphyria, and that porphyria symptoms were very similar to methylation issues. I found out as much as I could about porphyria and did the politically incorrect treatment of eating dextrose(glucose), and saw another big improvement in my health.

    I just realized the other day realized that the need for potassium, which I have seen spoken of at this forum but not on this thread, is related to methylation issues and porphyria issues.

    The reason I bring these two things up is that most people who are working on methylation and mitochondria issues don't realize the value of choline or glucose. Choline for the liver and glucose for the mitochondria. I've been slapping myself in the forehead because of looking at pictures of the Kreb's cycle, seeing that glucose is what is used as the source of energy, but taking 6 months to realize that I need to be providing it in the very simple form so that my cells can get what they need.
     
  17. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    [
    Honestly all of the SNP discussion goes right over my head because I haven't taken the time to sort any of it out. But if I get my test done, I hope you'll help me analyze it:) I am totally certain that the epicenter for my issues are the mitochondria because I started losing energy about 32 years ago when I was around 12...[/quote]

    I haven't done a round of human-derived since the operation. Have to find a supplier. I had a round of Genestra HMF that I did well with and would like to try it again.
    I got my 23andme results and ran them through Sterling's app at MTHFR.support. That was $20. I spent another $50 and had Sterling explain my results to me. 1 hour by phone. That gave me a good foundation to build on.
     
    howirecovered likes this.
  18. howirecovered

    howirecovered Senior Member

    Messages:
    144
    Likes:
    43
    thanks Brad, i'll try it soon:)
     
  19. howirecovered

    howirecovered Senior Member

    Messages:
    144
    Likes:
    43
    I'll check it out - it's been on my list to add for a long time, but I react or used to react badly to it. As if it were coffee. Used to be very hard on my adrenals. Recently I started eating one egg every day and so far so good. I may add another and see what happens.
     
    merylg likes this.
  20. stridor

    stridor Senior Member

    Messages:
    336
    Likes:
    222
    The reason I bring these two things up is that most people who are working on methylation and mitochondria issues don't realize the value of choline or glucose. Choline for the liver and glucose for the mitochondria. I've been slapping myself in the forehead because of looking at pictures of the Kreb's cycle, seeing that glucose is what is used as the source of energy, but taking 6 months to realize that I need to be providing it in the very simple form so that my cells can get what they need.[/quote]


    It is always interesting to see how each of us has to find their own path back to wellness. I take choline as well in the form of sunflower lecithin = 4 caps daily. How much do you take. I have wondered about this because I was told to take lots but don't know what that means.
    Sugar/blood sugar maintenance was a big problem until I started methylation. It wasn't that my blood sugar was dropping - my glucometer readings were in the low normal range, but I had all of the signs and symptoms. For some reason my brain just refused to function unless I had lots of it around. I would say that I am pretty normal now. I don't sense that I am getting spikes and troughs. I worry about anything that pushes my mitochondria because I crash with CoQ10, carnitine, ribose - anything that is supposed to help ME/CFS. Now to be fair, I haven't tried any of these since started on the high dose mB12 maybe things have changed....and maybe not. I had my familiar fibro pain when trying to do a bit of exercise this morning.
     

See more popular forum discussions.

Share This Page