text: B12 for probably non-ME/CFS symptoms | Page 8 | Phoenix Rising ME / CFS Forums
  gary, you can still increase you folate. It's way lower than the B12. I don't know which was most instrumental, but the B12/folate at a certain point eliminated my insomnia, after a lifetime.
  ahmo, Jul 6, 2014
  I thought it was *supposed* to be way lower. OK, I'll try that. Thanks @ahmo!
  garyfritz, Jul 6, 2014
  gary, look at the pdf linked in my signature. Near the beginning Freddd talks about ratios.
  Yes, and on p. 2 he says 800mcg folate per day. I'm already over that so I figured I was on the right track.
  Of course, he also says 1mg of mB12 and 1mg of adB12. Is mfolate supposed to be roughly the same range as b12?
  And on p.3 he says to titrate folate until healing kicks in and then insufficiency symptoms go away, 1600mcg - 20mg -- but I haven't gotten any healing symptoms yet. Guess maybe I should keep boosting it until I feel something. He says at 1200-3000mcg I should start needing potassium. (Typo, BTW -- p. 3, 2nd paragraph, should be 1200-3000mCg, not mg)
  I've been taking my folate WITH my mB12/adB12. Your PDF says to take the folate separately. Geeze it's not hard enough trying to work out the dosages, there's fussy timing too...
  @Gary, I'll check that discrepancy. My understanding is that the most recent advice was to take B12/folate near the same time. Mfolate and B12 are not exactly the same, but in some sort of dynamic balance. A few pages in you'll see reference to ratios, and a few paragraphs about that.
  In your case, if insomnia is now the biggest symptom, then you might try increasing folate. Your opening post:
  I have nearly all symptoms of hypothyroidism except weight gain -- my weight hasn't fluctuated more than +/- 4-5 lbs in the last 40+ years. I'm pretty thin, 6'4" and 175 lbs. Other than that I have low energy, low body temp, cold sensitivity (though that seems a bit better lately), dry/flaky skin, brittle nails, high cholesterol, thinning hair, low libido, the works. My TSH/etc are borderline low, but I never responded to any of several thyroid supplements (Synthroid, Westhroid, etc).
  Are these things ongoing? is RLS the only thing that's shifted? and better sleep?
  You've titled the thread for Non-ME/CFS. Maybe your underlying issue is closer to Adrenal Fatigue.
  Honestly, overall I'd have to say I'm no better off than I was when I first wandered in here.
  My symptoms were terrible last summer. 2-4 hours every night spent twitching and thrashing. Frequent RLS. Frequent crazy-making skin-crawling feelings during the day.
  Started taking Readisorb mB12 last summer/fall. 500mcg/day was enough to totally resolve all symptoms.
  After 6 months, I started having sleep problems again, though not nearly as bad.
  About a month ago I started boosting my mB12 doses and adding in adB12 & methylfolate.
  That seemed to help a little, but my sleep & RLS problems have continued to gradually get worse.
  The last several nights I've woken in the night and extra B12 didn't really work to get me back to sleep.
  The other things you quoted (hypothyroid symptoms, etc) are unchanged.
  So my symptoms have continued slowly getting worse since March. Other than sporadic and short-lived improvements to my sleep, I'd almost have to say I've observed nearly ZERO effects from increasing my mB12 20-50x, and adding 4mg adB12, 1mg methylfolate, and (just for the last few days) 855mg LCF! I haven't noticed any of the low-potassium symptoms, except a VERY minor tendency for my calves to cramp -- so minor I haven't even been bothering to take potassium lately.
  garyfritz, Jul 7, 2014
  I agree with pushing the methylfolate to get closer to a 1:1 match with absorbed b12. You might be absorbing as much as 5mg of b12 right now, between the two types. I'd gradually increase to 4mg methylfolate (200 mcg every two days maybe?) and see how you feel then.
  *waving from Mallorca*
  sueami, Jul 7, 2014
  So my symptoms have continued slowly getting worse since March. Other than sporadic and short-lived improvements to my sleep, I'd almost have to say I've observed nearly ZERO effects from increasing my mB12 20-50x,
  In that case, definitely try > folate. And don't neglect the potassium. I'm just finding that I'm experiencing stress in my adrenals before any other K+ deficiency symptoms.
  ahmo, Jul 7, 2014
  OK, will do. What type of adrenal symptoms do you notice? Fatigue, weakness, depression, cravings, ...?
  The only thing I've noticed lately is a few days of fatigue and brain fog. But I think that had more to do with holiday-weekend parties (Thursday, Friday, and Sunday ), late nights, alcohol, and especially messed-up sleep schedules, than with potassium or anything similar.
  I'm in a new phase w/ my adrenals since a major detox in May. I also stopped supplementing w/ adrenal glandular at that time. I now find tinnitus recurs when adrenals are stressed, also irritability, low energy.
  Here's some more adrenal info:
  ahmo, Jul 8, 2014
  gary, I know you don't want to hear this, but unless you stop doing stuff like this on a regular basis (and even one drink two or three nights a week negatively affects some people, I'm one), you probably won't get well. Alcohol is a major stealer of methyl groups, neuro-protective B vitamins, and some other nutrients, plus has other negative effects. Beer and wine can also come with other ingredients like certain grains or sulfites that can cause neurological symptoms in some people. It's also known to have a major impact on melatonin production (perhaps due to its impact on methylgroups and B12), thus impacting sleep. Even at levels as low as one drink.
  I still have a drink occasionally (once every few months) but it's not really part of my lifestyle any more. And I completely abstained for a long while before I was able to really take a drink again. It was a choice I had to make for my health, and it was a good one. I don't regret it and I don't miss it. The joys of regular sleep patterns far outweigh the "benefits" I thought I was deriving from drinking. You keep having problems so you might consider making a choice not to drink to see how you do with it. We're not in our 20's any more, do we really need it that much to socialize? Just a point to think about. And you have to stick abstinence for at least three months to see true benefits.
  I don't want to be a scold, but I come from an addictive standpoint, and have found that things baldly put can help with perspective. That's the plain truth.
  BTW, I'm not saying you are an addict. But I have been, and I still have, an addictive personality. At one time or another I have been addicted to almost everything you can think of. "Plain talk" is a tactic that has worked well in helping me put things into perspective. I've also seen it help others when they seem to be at a sticking point on a variety of issues, not just alcohol-related. So I use it sometimes.
  I don't mean to offend. Just please consider it. And if you don't want to do it, that's fine. Your choice. You don't need to explain why. But it's still the truth.
  @ahmo...are you salt-loading for your adrenal issues?
  whodathunkit, Jul 8, 2014
  Thanks, @ahmo. FYI you might find this interesting:
  http://www.cheeseslave.com/is-it-adrenal-fatigue-or-starvation/
  Her assertion is that the symptoms of adrenal fatigue are virtually identical to borderline starvation. She's a health coach and says she's had many clients who were doctor-diagnosed with adrenal fatigue, but when she boosted their calories &etc, all the "adrenal fatigue" symptoms went away. They all tended to be on restrictive diets, and apparently that caused their adrenal-fatigue symptoms.
  I found this very interesting since I've always been skinny (80 kg, 193 cm) and I was showing signs of adrenal fatigue. I tried tracking my calories for a month, and I found out that even though I often ate a TON of food, over time I was averaging about 1800 cals/day. And for a male of my age/height I should be doing about 2200. No wonder I never gained weight! Since then I've been experimenting with a semi-paleo approach (drastically reduced grains and sugars) and, unfortunately, I suspect my calorie intake is even lower. More chocolate!!
  garyfritz, Jul 8, 2014
  @whodathunkit, thanks for your concern. You have a very valid point. I definitely don't handle alcohol as well as I did even 5-10 years ago. 2 years ago in the midst of severe situational depression after my divorce, I stopped drinking almost entirely for a while -- it just wasn't worth it. Just one or two beers would ruin the next day. I wouldn't have any typical hangover symptoms, but I'd have much more severe depression and just full-body "feel BAD" stuff.
  But I missed it. Fine food and good beer/wine have always been a centerpiece of my social life. I have several friends I've known for 30 years who are gourmet chefs and who have over $50k of wine in their cellars. Fortunately (?) I'm not on that level, but I do really enjoy getting together with friends to cook an awesome meal and enjoy some good wine. That's how I rebooted my life after my divorce -- I joined a local "Foodies" meetup group, and now that's my main social circle. And of course there is always wine&etc at those dinners. Also I live in Beer Nirvana, with 9 microbreweries and a brewpub within 3 miles of my house. I love it!
  So not only would I be stopping something I really enjoy, I would be pulling the plug on a big part of my social life.
  This past weekend was unusual -- I don't normally go to 3 parties in 4 days!! It's typical for me to have a drink or two, 2-3 times a week. Most research says that's actually GOOD for you.
  But that's for "normal" people. I understand the issue with alcohol and methylation. Those of us with The Genes may have to be more careful with booze.
  Lately alcohol may be messing up my sleep more -- not sure -- but the combination of the alcohol, the late nights, and the sometimes totally-messed-up sleep can really knock me out. On Saturday (after parties Thurs & Fri) I didn't feel bad, but I felt veerrry low-energy and fuzzy-headed. I didn't have anything to drink yesterday and I slept better last night. Hm.
  I'll track this a bit closer and get a better feel for how it affects me. Then it might be smart to abstain for a while, as you suggest. I hope I could eventually get better and return to some of my old habits -- I enjoy them.
  @garyfritz: as I said, you didn't need to explain. It's your choice. You're an adult so you recognize choices have consequences. Good luck.
  Edited to add: FWIW, restrictive calories never caused my adrenal fatigue issues. Never had too much problem with restrictive diets...in fact, the opposite. I was much too laissez-faire in my food choices and lifestyle habits. I've been formally diagnosed with hypoadrenism and been treated by a doctor for it. Even got some hydrocortisone for it, although I chickened out of taking that. But that's how badly flatlined my cortisol was.
  My adrenal fatigue issues were caused by poor lifestyle choices, period. Drinking, eating junk food or lots of simple carbs like pasta or rich, sugary desserts, not sleeping, burning the candle at both ends, etc., will crash your adrenals more surely than any restrictive food regimen.
  Also edited to add: just wanted to clarify that I don't want to be construed as harshing anyone's mellow, or whatever. But what I'm saying *is* the truth.
  And FWIW, I very much enjoyed my partying lifestyle, too. Socializing, drinking, and food have been very, very big parts of my life. Drinking in particular I was very good at for quite a long time. I didn't choose the lifestyle I have now because I am a natural Puritan and enjoy spending nearly all of my disposable income on my health instead of on the finer things in life. I chose the lifestyle I have now because I figured out if you don't feel good mentally and physically, pretty much nothing else matters, and even if you can't entirely achieve perfect health and well-being, it's definitely worth striving for.
  Good news is that if you can reconstruct your health, you may be able to back to a moderate version of what you could get away with in your 20's. As I said, I can take a drink now and then with no ill effects, even though I find I just don't really want to any more. I've found I enjoy leaving my methylgroups and adrenal function intact more than I like alcohol. Feeling healthy and sleeping well becomes addicitve, too. And it's perfectly possible to truly enjoy being around people to socialize without indulging in more than a bite or a sip or two of whatever's on the table, just for the taste. It's usually the whole glass or two of wine or beer, or the whole piece or two of cake or pie that causes the problem, not a couple of bites. One strategy that helps with this is to eat a big healthy meal before you go out.
  Bad news is that if you reconstruct your health, get cocky, and go on a big dumb old person's binge, you can undo almost all your hard work and have to start all over again. I've done that, too. Did it a couple of years ago, in fact. I had worked very hard on my health for over a year, lost 40lbs, looked great, and felt even better. I had basically restored my adrenals. Felt like I was in my 30's again, if not my 20's. It was that good.
  Then one of my oldest friends had her 50th birthday party. A lot of fun people showed up that I hadn't seen in a very long time. We partied like it was 1983 all over again. Party started at noon on Saturday, and we all crashed at about 6a Sunday morning. That little episode set me back so far that I still haven't entirely recovered from it, and it's been over two years. I was actually pretty okay in the couple days immediately after the party, and I even congratulated myself on escaping without the big hangover. But then in subsequent weeks it became abundantly clear that I'd really done some damage to myself again. Energy went down, exercise tolerance disappeared again, depression returned, sleep patterns disrupted, junk food cravings came back, etc. I didn't go entirely back to square one, but I was close enough to kiss it. Call it square three, which was bad enough.
  Point being, I guess, is we all just have to decide which opportunity cost we're willing to pay. Good health is definitely the scarcer, more valuable commodity.
  whodathunkit, Jul 9, 2014
  sueami and ahmo like this.
  Just saw my MD. She looked through my SNPS and said it would take her a while to digest them all, but her advice was:
  * Drop ALL the methylation supps I've been taking. She follows Lynch's advice, and she said we should "prime the pump" some more before trying to launch methylation. She said the fact that I've seen almost no effect from all the methylfolate / adB12 / LCF supports the idea that my system just isn't ready for them yet. She said normally Lynch would say 6 months of priming, but since I've been taking mB12 for almost a year, she expected that would shorten to 2-3 months for me.
  * Switch to injected IM mB12. Her nurse showed me how to inject myself with 0.1 mL of mB12. I'm not sure how much mB12 is in that dose, but the MD said it should hopefully last me 3-7 days. She wants to hear back in a few days to see how I responded to it. (Unfortunately I won't get my personal bottle of B12 for a week or two, so I might have to go back to the MD's office for a few boosters.) Interestingly the nurse had never heard of wrapping the syringe in foil, etc, to totally protect it from light. I'll be more particular with my bottle & syringes. (Though I've never figured out how you're supposed to read the dosage if the syringe is wrapped in foil...)
  * She wants me to take 1 mg/day of lithium (as orotate), and some NeuroMag. I think these also come from Lynch's protocol. I've taken lithium orotate before, without any effect, but the MD said "but then you didn't have your methylation straightened out." We'll see.
  * When I asked, she agreed with @whodathunkit -- she said "no, alcohol is not your friend right now." So at least for now I'm off the sauce, doctor's orders.
  * @liverock, I asked her about the H Pylori. We were already long past my allocated appointment time by that point so we didn't talk much about it, but she said a "positive titre" for HP is about like a positive indication for chicken pox -- once you've got it, it's always there, whether it's active or not. I got the impression she wasn't overly worried about my positive test back in 2004 because I wasn't showing any active symptoms, so she figured it was dormant/gone just like chicken pox goes dormant. I asked about testing to see if the infection was active but we didn't get very far on that. Next time.
  So I'm eager to see how the injected mB12 works for me! I got it about an hour ago and so far I don't feel anything. I still have low-level skin-crawling / muscle tension going on. We'll see how it gets me through the night tonight.
  garyfritz, Jul 9, 2014
  Well, #%@$%!!
  I don't know what went wrong, but that B12 shot yesterday didn't work AT ALL.
  I stopped taking all the methylation supplements as my MD said -- methylB12, adenosylB12, methyl folate, LCF -- and relied on the shot. From what others have said, I expected to feel wonderful. Unfortunately I didn't feel any different at all. Worse, in fact, without the steady influx of B12.
  All afternoon/evening I had muscle/nerve tension and RLS. When I went to bed I got an hour or two of sleep, then I woke up with the worst twitching/thrashing torment I've had in a year. After over an hour of that I said "enough!!" and took a few shots (maybe 1-2mg) of Readisorb methylB12. My body calmed down almost immediately, but not enough to sleep. Still some edginess and RLS. After another hour I took a 5mg sublingual methylB12. That helped a bit more but I still couldn't sleep. After another hour I got desperate and took 2mg of adenosylB12, and either that did the trick or the attack had "worn itself out." (It was almost 4am by then. These attacks generally keep me awake from about 1-2am to 4-5am.)
  I don't know if the B12 got exposed to too much light, or what. I've sent the MD a message to ask if we should try again.
  garyfritz, Jul 10, 2014
  So, I think Freddd writes about what happens to Mb12 if it is not properly stored. I think it might degrade to cyanocobalamin, or maybe hydroxo. In any case, if your nurse had no idea about proper storage of it, you might have had an essentially inactive shot, or worse, cyanocobalamin, which is quite deleterious to ppl with methyl cycle blocks. I don't have good computer access right now or I'd look this up but you might find details of it in Ahmo's compilation.
  I wouldn't give up on the shots just yet, but I def would ask about the preparations and storage of it to make sure it's fresh and undegraded.
  Sorry that was such a disappointing experience.
  sueami, Jul 11, 2014
  Ya, disappointing, but just a setback. My MD said "Hm, maybe your body needs more support than most in this process." So she told me to go back on my B12/etc, and I'll continue with the shots. With my B12/etc support, I didn't have 8 hours of uninterrupted slumber last night, but I got a good night's rest. I'll keep up with that and hope that the B12 I get (for doing my own shots) will make a bigger difference.
  The only detail I've been able to find about light degrading B12 is a reference to an article: http://forums.phoenixrising.me/index.php?threads/jarrow-did-it-change.18154/page-7#post-308531