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Methylfolate side effects what happened

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Relentless1k, Dec 9, 2015.

  1. Relentless1k

    Relentless1k

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    So having CFS/ME i decided to try Fredd's methylation protocol. (Methylfolate, methylb12, adenosylb12 + cofactors)

    The B12 gave amazing results sublingually compared to oral that i always used to take it. (Had top end of reference range with 1000mcg oral daily 1 year ago, went down to mid range. Now 900+)

    But i assume its the folate that caused me problems: First it caused major anxiety and nausea, tremors and sweating. Which went away. A day or two later i start developing rashes, breathing problems and histamine issues from histamine rich foods, heart palps, rapid heart and POTS (ive never had that)

    3-4 weeks later, ive discontinued using any folate/b12 over the RDA and only every second day to prevent symptoms. But i still have all the symptoms. I started taking allegra, cromolyn, quercetin, gynostemma and immune modulator by life extension.

    Still react weirdly to foods with breathing problems and rapid heart. Palpitations are gone with taurine and potassium. Rashes are gone

    But i still have asthma symptoms nearly all day even on allegra and cromolyn + congested nose 24/7.

    If anything methylation should reduce histamine? Im lost, doctor is clueless as well.

    Never had this problem with folic or folinic acid or methylb12 without methylfolate. I have no issue with SAM-e or TMG either..

    The rashes were on the legs if that makes a difference. Huge ones with hives under them.
    I didnt have histamine issues prior to methylfolate (except for seasonal allergies but nothing for the rest of the year)

    I havent taken any for 2 weeks (i take folinic now to meet RDA or just eat enough leafy greens) but the symptoms are still here. Rapid heartbeat and extreme breathing problems.
    Im 20. I also dont tolerate exercise now and get out of breath from barely walking. (3 months ago i was working out mildly and cycling semi often with no issues) Now i get huge pulse (100+ and out of breath from walking down the stairs)

    Ive never had problems with spinach, avocado etc now i cant eat them at all.. Milk makes me nearly ready to go to the ER because i cant breathe at all and feel extremely weird.
     
  2. Kathevans

    Kathevans Senior Member

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    It sounds as if you may have gone too high too fast.

    How much of each supplement were you taking--particularly the Methyl B12 and folate? Have you had genetic testing? It can offer some illumination as to which might be harder for you to tolerate and possibly why.

    I'm sorry to hear your reactions have been so extreme; but I'm glad you're working in concert with your doctor to try to figure this out.

    Take care.
     
  3. Oberon

    Oberon Senior Member

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    What's your current methylfolate dosage? I've been having a very similar issue with histamine reactions since starting Fredd's protocol. I've been following Fredd's paradoxical folate deficiency advice and have been ramping up my dosage, which I believe may be helping me (unsure as of yet). Other's recommend to do the reverse and back down on dosage.
     
  4. ahmo

    ahmo Senior Member

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    I used to get histamine reactions sometimes when increasing folate. They were short lived, nothing like what you're having. I'm sorry I have no advice for you. It's likely that there are snps that do and don't benefit from folate. Right now, we're stuck with trial and error. Look on Ben Lynch's site, including the long comments sections.

    http://mthfr.net/taking-folate-and-feeling-badly-methylation-requires-balance/2011/11/15/

    http://mthfr.net/methylfolate-side-effects/2012/03/01/

    http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
     
    Last edited: Dec 10, 2015
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  5. Relentless1k

    Relentless1k

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    @Kathevans I do well with very high doses of mB12, and have done that on and off for soon 2 years. Folate dose never went above 1200mcg in a day and i only did it for less than a week.. I will get genetic testing done in the start of 2016, in the meantime ill just research this subject more.

    @ahmo Thanks for the links, very helpful! :) I'll retry folate in the future, from reading here i think i should likely fix my gut and balance out other things first. (Alltho i have been supplementing all nutrients for months so there is not any deficiencies)


    @lakesarecool I never went above 1200mcg folate a day and i could only do it for like 3-4 days before all this set in. I have read about the paradox folate deficiency but just adding 400mcg will cause me too much anxiety and tremors + heart racing (i dont have low potassium) so i stick to the just supplementing 400mcg in a b complex every few days. (jarrow B-right that now has 400mcg methylfolate instead of folic)
     
  6. Kathevans

    Kathevans Senior Member

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    Seeking Health B-Minus is a low Bs complex that has no methyl donors. It does have a relatively high dose of niacin, however...
     
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  7. Freddd

    Freddd Senior Member

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    Hi Relentless,

    I know this isn't going to agree with many but for instance if you were to take 7.5 or 8 mg (the minimum Deplin dose) and the symptoms broadly decrease for 4 or 5 hours and then starts coming back stronger, you are seeing the effect of 7-10 "interior triage levels" as it is often called in journal articles. A small dose turns on one or two levels but makes worse deficiencies after on all the rest. The deficiency symptoms approach zero as the daily dose approaches 30mg across 3 or 4 doses. They symptoms are sticking around because they are deficiency symptoms. You could even have potassium deficiency because of one or two levels that have started cell production. These symptoms listed below show the common symptoms caused in this way. The more methylfolate you take the fewer folate deficiency symptoms and the more potassium deficiency, about the 3rd day after starting. This worked for me and many others quite well. You will know in 1 to 3 days, methylfolate works very fast on these things. Personally if I could know, up or down about something in 3 days, I would. I worked it out the long slow hard way the first time because of so little available and so expensive. At 28.8 mg daily I have one barely perceivable folate deficiency left that shows up every couple of weeks. These symptoms reflect by long term learning. Lot's of people said lots of things. However, fast titration of Metafolin works well and nothing else worked at all as far as getting rid of all those histamine and inflammation things. One also needs some LCF or ALCAR (person dependent) to get startup in several triage levels so non-folate symptoms remain.


    Version 1.4 09/25/2015

    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

    There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

    IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

    Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

    Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

    Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


    Group 2a - Both

    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


    Group 2b – Either or both

    Headache, Increased malaise, Fatigue



    Group 3 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels


    These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

    Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


    Old symptoms returning

    Edema

    Angular Cheilitis, Canker sores,

    Skin rashes, increased acne, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,


    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
    Headache, Increased malaise, Fatigue


    Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

    Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


    Longer term, very serious

    Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




    Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
     
    Last edited: Dec 18, 2015
  8. Relentless1k

    Relentless1k

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    So i should actually just try to get the folate dose up really high fast, instead of going slow?
    I never took more than 1200mg and not at once, and had the issues stated in the original post.

    Not sure if i want to take the risk of taking those crazy amounts, how would i know if i should or should not attempt it?
     
  9. Kathevans

    Kathevans Senior Member

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    The one caveat I have is whether most of your snps are in the folate cycle--MTHFR--or in the Methionine cycle--MTRR and MTR. The former has methyl-folate as a cofactor or helper, and the latter has methyl B12. This seems to relate to which you take more of. And I know you haven't had the test yet.

    For me, finding the balance between MeB12 and Folate has been a major challenge. It may be because I began with a problematic folate insufficiency (for me) because of the B-complex I was taking (Country Life Coenzyme B had 800mcg Folate to 500 MeB12--never mind the fact that this 500mcg was taken orally and therefore hardly absorbed at all).

    My symptoms were horrible pain and muscle spasms that my neurologist simply wanted to give me pain killers and muscle relaxers for. That was a year ago now. It took me about six months to get off the b-complex. I know this sounds ridiculous--it certainly does to me--but as I had no idea what I needed, I only knew to stop and try to become balanced with a basic B--no methyls--before trying to add them again. Think pain, exhaustion, depression. Horrible.

    The road is still bumpy for me, but I do see progress. I'm taking roughly 5,000 mcg of MeB12 and have increased to about 1200mcg of Folate and I'm always pushing something.

    For some of us it just isn't easy--but perseverance has paid off for many.

    Reading the experiences of others has really helped me...and slowly beginning to learn how to read my body.
     
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  10. Freddd

    Freddd Senior Member

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    Hi Kathevans,

    Well, here is the thing, if indeed it is refeeding syndrome and most levels are giving you deficiency symptoms, then the effects will go away rapidly with increased dose. Only you can decide which theory to believe. Another difference, you will have a good idea in a day and know without doubt in 2 or 3 days. The smallest dose of Deplin (7.5mg) which is pure Metafolin, has "No side effects different from placebo", same as 15mg and 30mg doses. Also according to the studies, 15 and 30mg were more effective than 7.5mg. The hypothesis of maintaining the deficiency symptoms is that they can last for years and years and allow more damage. I choose to believe the hypothesis that lead to my healing. I went up much more slowly because of scarcity and expense., I suffered from unnecessary folate deficiencies for 8 extra years. After the glutathione damage I wanted to stop the increasing damage as quickly as possible. With my MeCbl, the folate made significant noticeable difference in hours. My Angular chielitis would stop burning pain in a few hours and no longer be open sores in 3 days. IBS was gone in 5 days, the returned asthma and allergies faded in a day. Widespread inflammation and pain started decreasing in hours. During the folate deficiency I put on 3 pounds of water a day starting in hours. It started pouring out of me in hours and I lost typically 1-2 pounds of water per day, after that cause healed starting in a few years, but after edema became an indicator rather than a constant symptom it was most useful. It took some years until it healed in the first place. You of course need to use your best judgement as to what works for you. Having the folate deficiency symptoms on the list is no joy. Response is very fast. Maximum intensity of these deficiency symptoms appears to be in the under 4mg per dose level. However, serum level decreases so deficiency effects can start going away in hours but start getting worse again in 8 hours.

    So you have the predicted symptoms from that size dose but would rather believe the stories that more will increase the deficiency symptoms in a linear way which makes it terrifying. For me basically intensity-symptoms decreased by 50% with each doubling. So I went from lots of folate symptoms to less bad symptoms to fewer symptoms to intermittent few symptoms to no symptoms based on dose. I don't have FMS or CFS or congestive heart failure or MCS or IBS or asthma or seasonal allergies needing antihistamines. Each person can only demonstrate the results for themselves.

    You can know in two days at the doses tested for Deplin that it works, or not, for you. You can try a 1 hour titration interval, try a second 1200 mcg after 1 hour and another 1200 mcg in another hour and so on while watching what happens. Anything from increasing dose will be gone in 12 hours from the last dose. What will increase, as deficiency symptoms start turning to reducing symptoms, more potassium is likely to be used.generally after 2-3 days. To find out what worked for me I had to try all sorts of doses. That is the only way you can know. Lots of people have had most excellent results with higher doses and suffered indefinitely with lower ones. Frequency of taking Metafolin is important. It takes me a lot more total Metafolin to stop the same symptoms with 2 doses per day, they come back twice a day instead of steadily decreasing. You might even try 400mcg 3x per day if that isn't how you are taking it and then increase each dose by 400 mcg each day and in a few days you will know whether it works for you or not. You may even get a better effectiveness from 200 mcg 6 times per day and increase from there. Perhaps you merely have a short serum halflife of the methylfolate. Without trying the various things you won't find out how your body works. That will keep the total dose the lowest for a given effectiveness. It takes a 50% or more increase to be potentially noticeable as far as I can tell. Metanx, for reducing homocysteine, contains MeCbl, P5P and 5mg of Metafolin.. Pick a method that you won't have a panic attack about. Watch the symptoms on the list.

    Each person can only find out by trying in our do it yourself nutrition. I eat no folic acid, no white flour products, no vitamin cereals or drinks etc because folic acid affects me so badly. Folinic acid is even worse. For instance I found that 800mcg of folic acid daily could block about 10x as much Metafolin from working and folinic acid could block 20x as much. I have no idea if you are taking those or how they are affecting you. I also react badly to vegetable folates whether extracted into pills and bought or in the organic vegetables from my garden. I am also badly affected by NAC or glutathione, which can cause the same symptoms of extreme folate deficiency. People without all those problems have fewer less severe folate symptoms and more effectiveness of folate at lower doses. The problem is the 8 or so separate "triage" levels (compartments) which is why a person can heal in some places and get worse at the same time.

    There are lots of genetic polymorphisms affecting folate. The CblC disease I was diagnosed with probably contributes to my problem as it causes low cellular folate, a natural result of the methyltrap the genes can cause. Good luck.

    A note, the horrid spasms are usually caused by low potassium for me and many other folks here.
     
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  11. Relentless1k

    Relentless1k

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    @Freddd Thanks :)

    If i test my genetics, will that be able to tell if i need high doses or if i could heal on RDA level doses?
     
  12. Freddd

    Freddd Senior Member

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    Hi Relentless1k,

    I don't think that the interpretation of the genetics is there yet. If it was you would see all those people trying to do it that way hitting home run after home run with their healing. The genetics is very complicated and while they can tell you some things.

    For instance, the CblC polymorphisms are still being mapped. The number are unknown and as is remarked on the symptoms are "very heterogeneous".

    One of the characteristics is that electrolytes don't stay balanced, all sorts of automatic balancing things in the body don't work, many of the sufferers appear to need a specific carnitine as a vitamin and getting the precursor amino acids do no good because the body can't synthesize the form of carnitine it needs. Cellular folate is low and a person usually needs both active b12s even though the "official B12" for it is HyCbl, even though it works poorly for most with this disorder. If they could. They can't even figure out that AdoCbl and MeCbl and methylfolate works massively better, that folic acid doesn't work for many and even can damage them.

    Part of the problem is that most of the research and interpretation was done on CyCbl, HyCbl and folic acid and the active forms react very differently. The active forms appear to make most vitamins and other things work far more powerfully. So many things appear to need less quantity than is put in many b-complexes. It's difficult to find a b-complex with low enough doses and the right balance. The active forms also are much more predictable in what they will do and how they will affect the other b-vitamins.

    Maybe in 10 -50 years we might be able to interpret that information from the genes but I wouln't bet my life on them now.
     
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  13. Kathevans

    Kathevans Senior Member

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    I'm working on my response...when I can figure out what, exactly it is! I'll be back with you shortly. Thanks, guys!
     
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  14. Kathevans

    Kathevans Senior Member

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    @Relentless1k I have been consciously and actively working on this methylation protocol only since this past summer; @Freddd has been at it for many, many years. The genetic testing at 23andme gave me a concrete, scientific theory to hold on to and the interpreted results don’t run counter to what Freddd has to say, really. But Freddd has gone beyond basic recommendations to mega-solutions for what, let’s face it, are mega-glitches in our lives.

    I don’t want to hijack your thread, (she said as she temporarily did just that!). But many of our issues are similar. Folate has caused histamine reactions in me, as well as anxiety and breathlessness and exhaustion worse than it was prior to taking so much folate. I’ve had a rash on my chest for over a year and my face breaks out in small bumps over my nose that seem to disappear briefly when I up my folate. I feel comfortable with the potassium gluconate powder I take 3x/day, roughly 900-1000mg, and add another dose if I feel my heart fluttering.

    In the end you, like each of us, will have to do the hard experimentation that may lead you out of this quagmire.

    I hope some of my questions can be a guide to you as well.

    @Freddd It’s not that I don’t agree with the Refeeding Syndrome. I’ve been following that thread with interest (http://forums.phoenixrising.me/inde...induced-deficiencies.41605/page-2#post-674866 )

    But I am so sensitive to so many things I haven’t been sure I was operating as fully as I could with what I have been giving my body in the way of methyl donors.

    As to Supplements: I’ve read many past threads on B12 and Folate and devoured @sheclimber’s terrific “My Understanding of Freddd’s Protocol.” My sensitivities showed themselves early with the Basic Cofactors:

    Zinc, more than a drop (1.1mg) at a time gives me symptoms—I’m up to 16mg/day

    Selenium, a drop (33mcg) makes me sleep one night, wide awake the next

    Vit C, I tolerate 1,000 w/bioflavs + rosehips, but so far haven’t worked on liposomal which was overstimulating at night.

    Even my low lower Bs I wonder about. Seeking Health’s B-Minus complex has high 180mg Niacin which may be problematic. The others are 25mg or lower.

    In your post, you’ve made me think about the number of times a day I take folate and MeB12 (currently only twice: morning and afternoon)—and after a terrible reaction last night where I was totally unsettled with a wild mind and tight face muscles, I began to wonder today if my body wasn’t running out of both MeB12 and Folate.

    My introduction to the Deadlock Quartet was rocky.

    MeB12 - The first 1/8 tablet I took last spring, before titrating my way off the Country Life Co-Enzyme B Complex caused atrial fibrillation and a trip to the ER. It resolved within a couple of hours on its own, but I know this is the basis for my reluctance to go too high too fast. I tolerate 3-5,000mcg/day, though if I take it too late in the day, it disturbs my sleep. I know studies have shown it can alter/decrease the release of melatonin and the last thing I’ve wanted is to upset my already fragile sleep.

    Methyl Folate- Recently I’ve pushed up to 1,200 mcg/day, but today, inspired by some of your comments – “You might even try 400mcg 3x per day if that isn't how you are taking it and then increase each dose by 400 mcg each day and in a few days you will know whether it works for you or not.”—I upped to 1,600 in 2 doses. Not as dramatic an increase as you suggest, but it was a first step. My nose didn’t start dripping until about 5:00, and given that it’s been drippy pretty much daily for a year, that says something…! I did have a few twinges of Dupuytrens Contracture, a tangling of the fascia in my hands at 4:00, but then that disappeared. I’ve had an aching hand for days now.

    Given my symptoms last night—I’m beginning to think I simply needed both MeB12 for my wild, unquiet mind, and the Folate for my tightening facial muscles and tense body. And perhaps a dose of potassium to boot. But it was 11:00 at night and my husband had had a particularly long day traveling and I just wanted to go to sleep. Unfortunately, I couldn’t even manage to do that. So, I got up, took 100 mg of Niacin and had the flush hit me about an hour later, after I’d given up on it and taken 2.5 mg of valium, my go-to drug of choice. I managed to cobble together about 6 hours of sleep.

    AdB12 – I began with ½ Dibencoplex by Anabol Naturals one day back in November with no MeB12 or Folate that day, to see how I reacted to it. It made me so anxious I spit out the last of it. I felt a heavy chested exhaustion, aching thumb (old inflammation/tendonitis), weak, aching back (standard folate deficiency) and dripping nose! In the middle of the night as I lay awake, my face muscles felt as if they were scrunched in a fierce scowl (another folate deficiency symptom, I’m pretty sure).

    I tried a three day run of AdB12 a week ago at 1/8 tablet/day in the a.m., didn't have any of the above symptoms, and took my MeB12 and folate with lunch. For two days I had amazing blocks of sleep 4 hours one night and 3 the other, added to my shorter nighttime naps. The third night I was overwrought and used both potassium and niacin to piece together 4 hours of sleep. (Are you beginning to see my pattern here?! My escape from feeling totally out of control?)

    Over those three days I missed increasing Folate symptoms: more and more soreness/inflammation/ more breathlessness/increasing loose stool and IBS/ increasing runny nose and sneezing/ increasing depression. Looking back, I was only taking a single dose of either 800mcg or 1,000 mcg of Folate each day. That was certainly part of the problem.

    I started a thread on this - http://forums.phoenixrising.me/index.php?threads/adenosyl-b12-driver-of-folate-needs.41685/ where I compiled my thoughts and wondered whether, like B2, AdB12 can also be a driver of Folate needs, because that feels like exactly what I experienced.

    Looking over your exhaustive symptoms list, Freddd, Version 2 – 01/09/2014 (if there’s an updated post, I’d love the link), I know that my first fibromyalgia symptoms were ‘lack of muscle recovery after exercise,’ and ‘exercise debilitates, etc’ Thus it seems that AdB12 is very important for me.

    So, in relation to both MeB12 and the AdB12, I need to up my Folate. Are they both drivers?

    Should I take the MeB12 and AdB12 together in the morning? Both of them lined up along my gum line?

    That third time per day--or possibly more--I’m going to have to build up my courage. Bedtime is already fraught. No doubt that's part of the problem...

    Another frequent reaction may relate to folate or MeB12, though it’s possible it’s just blood sugar. At dinner time only, I sometimes feel anxious after I start to eat. It passes, sometimes not until after dinner. Sometimes it’s accompanied by pvcs (premature ventricular contractions of the heart, little skipped, or actually extra beats).

    I’m hoping it isn’t a reaction to the folates in my vegetables. That isn’t the sort of reaction you have, is it? Or is it possible that even if it were this sort of reaction, what I really need is more MeB12 to handle the folate I’m ingesting?

    Finally:

    L-carnitine fumarate. I’ve got it, but haven’t tried it yet—I’ve been too engaged with trying to figure out the first three.

    Diet: I’ve been gluten free for over 6 years (I do eat gluten free oatmeal occasionally by Bob’s Red Mill), lots of vegetables (so I hope the folic acid there isn’t a problem), lots of meat and poultry, and eggs, and try to keep my carbs relatively low, which is to say around 100. I do have mouth issues/tongue fissures, which react to more or fewer carbs, so I don’t know what I would eat if I had to cut out vegetables. I allow myself a little rice and potatoes at this point to keep on some calories as I stopped nuts (with the exception of sunflower and pumpkin seeds, the first high in zinc, the second in copper!) because of high oxalates when I was so out of wack last winter. I suspect this has improved now, though, with the B6 and MeB12.

    This is long and probably tedious, but I fully appreciate your comments of last night which have made me bolder in terms of the amount of folate I’ve taken.

    Now we’ll see how I sleep tonight…and if I don't, whether I'm bold enough to try some bedtime MeB12 or Folate...

    Thanks.
     
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  15. Freddd

    Freddd Senior Member

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    Hi Kathvans,

    I don't see how a completely on topic post is hijacking a thread. And I have to say, I find all the information and patterns of responses fascinating. I am self confessed data geek.

    Balance, a multi substance, balance is very complicated. There are hundreds of variables which makes the combinations almost endless unless one sees the patterns. I find it is easiest if one gets a reliable continuous healing with the most predictable items before testing all the folates for instance to see what they do. You have lots of symptoms. I used to have heart arrhythmias. I found that not enough potassium could do it. I also found that B-complex once a day caused them for some hours every day, about 18-20 hours after my last dose of b-complex. I also had a 24 hour pain cycle with maximum pain at my b-complex single dose. That disappeared with twice a day.

    Once you learn your body's responses you will be able to compare folate effectiveness. I don't know which polymorphisms causes reactions to veggie folates, folinic and folic acid or variants (ie calcium folate or folinate). So if you are going along well and your folate deficiency symptoms suddenly flair after a garden feast, several times, confirms for you vegetable folates cause partial methylation block. A certain amount can be enjoyed with some increase with Metafolin. I like to eat these things. I worked hard to grow them. I didn't like those results. Such is life. If you steady everything and let it settle in all these symptoms go away, sleep cycles are normalized pretty well and so forth. If you have anxiety it is likely a good idea to microtitrate with the liquid freebase carnitine from Jarrow. That was quoted around here somewhere. A search for "microtitrate" will likely find it. This starts at 100 mcg, below the point of reacting with greater anxiety and worse and allows a person to work up to a fully useful dose over time. Carnitine is very dose responsive.

    Level of methylfolate in serum affects serum halflife of both kinds of B12, loosing more faster if folate is low. I inject a lot because of the combination of things. It is always visible in my urine if I am low on folate and can be low enough in my urine with enough folate. I have watch the correlation with symptoms cycles and colorimetry of my urine, for 8 years or so. With folic acid, 2.5mg injected subcutaneously was visible in 2 hours. With 400 mcg of methylfolate that went immediately to 4.4 mgs of MeCbl injected sc. With 28,800 mcg of methylfolate even 10 mg 3 times a day may be invisible some days and again, I have a 2 week cycle in which my folate fall;s no matter what I do so far. It's visible. That is the last sign of lowering folate I have left. AdoCbl makes ADT with the help of carnitine but also needs methylation along the weay but doesn't drive methylfolate. Neither does MeCbl. I have done injection trials from 1mg to 100mg as single injections and as high as 60mg 3x per day. Folate needs are almost the same from 100 mcg to 100mg. AdoCbl turns on healing in several of those levels. This certainly kicks up the need for mfolate but it doesn't drive it. B1, B2 and/or B3 appears to drive the folate. Deficiencies of at least one of them includes folate deficiency symptoms that folate can't fix without the B1 I think it is.

    Epithelial tissue, skin, entire digestive tract, vaginal, lungs, bladder are all epithelial. Look at groups 1-4 in the list a few posts up the page. Sores in the mouth of many kinds are typical of MeCbl and/or mfolate deficiencies. So if everything is running smooth and I don;t take my mfolate then in 3 days I have sores starting in mouth, angular cheilitis, IBS starts, acne type lesions, infected looking follicles etc. These can tell you just as fast if you have effective methylfolate levels in the body. There is a myth about nutrition that one only needs to get each vitamin once a day for sufficiency. That might be true for some people but almost everything demonstrates that is not so in my body. Scurvy is a similar failure of cells by lack of Vitamin C (it's an a-scorbic agent; anti scurvy) getting made and when cells start getting made, it causes needs for methylation and ATP and potassium. I've worked with lots of dentists for decades. I know some that prescribe a b-complex and C to all their patients and the difference in their gums is visible 6 months later they tell me. Any deficiency or cause of blocking cell formation will cause refeeding symptoms if the deficiency is bad enough for long enough. Anorexia for instance is a problem because of the management of refeeding isn't reliable in somebody who can't or won't eat. B12 deficiencies have a a least two forms of anorexia; one that causes basically constant nausea (I had that) and one that finds B12 containing foods taste and/or smell revolting. I lost about 90% of my sense of taste and my sense of smell got hypersensitive and altered, corrupted. There were also multi sensory hallucinations. I could smell ironed linen and a salt breeze with clam flats in my basement in the Utah desert sometimes

    An interesting aside, when I was younger before I started vitamin C I had frequent nosebleeds, one time while talking to the dean at college and another time while performing Handel's Messiah. It turns out that Rich's methylation study included quite a few people with frequent nose bleeds and that was eliminated by vitamin c in the protocol used. It looks like to me that frequent nosebleeds indicates a sort of pre-scurvy condition.

    I also would like to say that over several years after carnitine was started most of my food sensitivities went away and the IBS healed but would restart periodically with low methylfolate. Of course what I had to eliminate was white flour products with folic acid which caused the IBS in part and all foods with folic acid and CyCbl.. The only other problem I have is milk products or whey. I can eat butter and straight cream with no milk.

    This is a "game of skill" in the game of "you bet your life". I know these are high stakes, your health and life. Personally, having been in the health insurance business at many levels my entire working life I am a belt and suspenders kind of guy. Everything is carefully calculated, risks compared and payoffs compared. I have spent approximately 30,000 billable hours (however, as I can't afford to pay me my going rates or any fraction thereof it has been an expensive hobby) since 1978, full time since 2002 when I could no longer work for many reasons, figuring this thing out. My only payoff has been living and healing, and being in the best health in general in my life and what burst out of my mouth about 3 years in, right in the middle of a phone call when something happened internally and I said "Oh! I can be happy now".


    Both MeCbl and AdoCbl together seems to be just fine. On the other hand I can think of perhaps a reason or two to do them sequentially. You could do one way for a month than do the other way. And you might see which is better first or second or either. I don't know an answer. It wasn't anything I could pin down and I tried many many variations and doses. However, what I have noticed is that frequency of AdoCbl needed by various people can vary between monthly and daily for equilibrium. It can affect mood and energy. The ratio of the two in the brain appears to increase/decrease a sort of irritability. This might not be visible below 50mg sublingual doses of AdoCbl. However, they both have a short serum half-life after some fraction of a mg is absorbed. 50mg sublingiual over 4 hours or so is equivalent to a 7.5mg+ injection as far as CSF/brain penetration. The amount absorbed makes urine colorimetry very easy.
     
    Last edited: Dec 18, 2015
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  16. Relentless1k

    Relentless1k

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    Thanks for your replies, both of you :)
    Really gives me valuable insight!
     
  17. Relentless1k

    Relentless1k

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    @Freddd @Kathevans Could you help me try to figure out these symptoms?:

    • After a large meal my heart rate speeds up to 90+, and blood pressure jumps up and down between really high and really low (after eating some almonds it sped up to 120. Not allergic to almonds)

    • Generally really high heart rate (80+) and out of breath (this started like a month ago) - Its not stress or panic because Valium doesnt lower heart rate when its high. I thought maybe it was panic attacks but high dose benzo does not slow down heart, just makes me care less about the fact that its very elevated. Heart rate is very low upon wakening and when i fast.

    • I can feel my heart beating through my upper body, neck, chest and hands all day every day even if pulse rate is normal and blood pressure is perfect

    • My heart rate is slow at rest, but if i just move a bit (like change angle by 2 inches, if lying down) it speeds up insanely high for a few seconds. If i stand up it easily goes to 100+ (POTS) Lying to sitting also speeds it up tons.

    • Orthostatic intolerance and general heart beating fast + lack of oxygen despite no heart issues and also no anemia

    • I always wake up dehydrated and am dehydrated throughout the day with more than enough water and all the electrolytes + RDA potassium. (If im sleep deprived i get extremely dehydrated for some reason) Ie: if i sleep 5h instead of 8.. Why? Had this all my life..

    • If i exercise or just walk down stairs i get really out of breath. Which is weird since i had extremely good cardio performance all life.. I could run a 10k with no effort prior to the sickness. Also was able to do high intensity workouts for 4+ hours everyday..

    • Free form amino acids make me (essential 9 dosed at 10g) feel like im dying of similar symtoms that you get from serotonin syndrome. Depersonalization, tight jaw/grinding teeth, sweating, severe anxiety, lack of coordination and spaced out, elevated heart rate

    • I wake up smelling awful every day.

    • Chronic fatigue (severe)

    • Cognitive impairment + horrible short term memory (i used to have amazing memory all my life) Got worse when i tried methylfolate

    • Anxiety and panic attacks in sosial situations (especially eating with ppl) (also triggered by amino acids. Phenibut and alcohol makes me more anxious

    • Brain fog that is constant but also gets worse after meals (unless its a lectin free meal)

    • Awful digestion, cant digest any fat nearly and protein gives me heartburn and isnt digested properly. Carbs speed up my heart by way too much.. (Blood sugar fluctuations and fasting blood sugar is flawless though)
    Very low appetite and huge nausea. I can barely eat socially due to all the nausea)

    • Exercise intolerance (nausea, out of breath, echo in ears, rapid heart, light headed)

    • Underweight even if i abuse carbs for extended periods of time (i ate 3000+ calories of high carbs, high fat, high protein for like 2 years and didnt gain weight) Obviously because my body doesnt even digest half of it.

    • I shake, have tremors and grind teeth in even warm temperatures. Is this maybe neurological damage?

    • Bad blood flow
    Im only 20, doctor cant figure anything out because all tests come back perfect..
     
  18. Freddd

    Freddd Senior Member

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    Hi Relentless1k,

    "Im only 20, doctor cant figure anything out because all tests come back perfect"


    Sounds just like me in so many ways. However, my tests were not perfect unless you call bottom of range or top of range on many things is"perfect". I had lots of symptoms and was called names and told it was all in my head because or because they in the "warning" range rather than "alert" range. So my MCV at 99.8 was < 100 even tghough warning was > 93 at that time and alert was > 100.

    I always wake up dehydrated and am dehydrated throughout the day with more than enough water and all the electrolytes + RDA potassium. (If im sleep deprived i get extremely dehydrated for some reason) Ie: if i sleep 5h instead of 8.. Why? Had this all my life..


    Please explain, do you wake up to dump urine every hour and by ,morning you are actually dehydrated or is it that you feel overly dry.?

    I wake up smelling awful every day.

    In what way bad? Like rotting fish or meat? like rotting asparagus? Like a swamp? Certain specific odors indicate metabolic defects. Or is it an odor in your nostrils or breath that nobody else can smell?

    Cognitive impairment + horrible short term memory (i used to have amazing memory all my life) Got worse when i tried methylfolate


    This one is very clear. Folate, most especially methylfolate causes neurological damage, sub acute combined degeneration is possible, from taking a folate without MeCbl. This has been warned against for something like 40 or 50 years and was the main reason that the folic acid limit was set at 400 mcg for decades.

    Very low appetite and huge nausea. I can barely eat socially due to all the nausea)


    I vomited almost every day. I spit up acid at night. I had no appetite for years. I was taking Compazine suppositories for the nausea. After I started MeCbl it stopped within a couple of days. I never, in 12 years, got another Compazine prescription. With healing also came low potassium and periodic paralyzed gut and much bloating and nausea. I have a medication prescribed, Reglan, and it has it's dangers. I increase my potassium and don't have to take Reglan often.
    • Underweight even if i abuse carbs for extended periods of time (i ate 3000+ calories of high carbs, high fat, high protein for like 2 years and didnt gain weight) Obviously because my body doesnt even digest half of it.

    Most of your other symptoms look like a mix of MeCbl, AdoCbl, l-methylfolate and L-carnitine dfeficienvies plus who know what else due to poor absorption. I lost 50 pounds of muscle by atrophy and could not rebuild it until after all the nutrients were in place. Then it went back on in a year.

    Lack of the 4 nutrients listed above can cause metabolic problems and atrophy of tissues along with other missing nutrients. I hope this gives a better idea of what could be happening.
     
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  19. Kathevans

    Kathevans Senior Member

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    @Freddd,

    Ah yes, the patterns. I’m getting better at them. And doing so with the Folate and MeB12 makes sense as you say. These are the first two items to play with.

    I find it is easiest if one gets a reliable continuous healing with the most predictable items.

    Staring at your symptoms list, I have many that relate to adequate folate levels.

    To follow through with yesterday’s experimentation: the 400mcg higher daily dose of Folate. I took my second 800mcg dose at 3 p.m. In spite of Folate deficiency symptoms--hand twinges, light brief anxiety during dinner, drippy nose by 6:00 worsening IBS through the evening, I thought I’d tough it out without more Folate—the chicken in me, ha, ha. I slept from midnight to 1:30 and woke with a frontal headache. So much for rest.

    I got up, took 200mcg of Folate, and began to feel it kick in, possibly a bit of anxiety (which may have been in my head). So I popped ¼ MeB12 in my mouth till I felt possibly more anxiety (also maybe in my head) and spit it out.

    I read, grew tired and climbed back into bed. I was relaxed but couldn’t sleep; my mind was working away. I had heart flutters and decided to take 300mg potassium gluconate in water. It was 5 a.m.

    I was exhausted, but the images in my mind were persistent and not leading to sleep. I’ve had this before with Trazadone where my body is quite prepared for sleep, but my mind isn’t. It becomes anxiety producing as I’m stuck in this heavy slow breathing place with my mind dancing around.

    At 6 a.m. I did what always helps. I took ¼ valium and was asleep within 10 minutes. 3 hours later I was slightly hung over when I woke.

    A quick breakfast, my supps and back to bed for an hour’s nap that left me feeling refreshed this afternoon.

    Today I took the 1600mcg of Folate in 3 divided doses, the last 400mcg Folate without 2,000 mcg MeB12, hoping that the higher level of methylfolate will help lengthen the halflife of the MeB12, as you pointed out. We’ll see if the headache returns tonight.

    I will say I didn’t have the comlete emotional centering I had yesterday when I took the two 800mcg doses of folate. I’ve had fairly constant low-level anxiety.

    I also divided my B-complex into 2 doses and will see if that affects my pain levels. Yesterday I noticed that my hip, while sore when I press, did not hurt with movement as it has for months. That was definitely the extra Folate.

    I am low on MeB12—as order from Vitacost has gone astray and is being resent. Meanwhile, my dose has to be lowered so I’ll be treading water a bit unless I can find some locally. Maybe another brand.

    Next week I’ll work on increasing the Folate and adding in the AdB12 and see where that puts me. More Folate seems to be the key right now.

    Sores in the mouth of many kinds are typical of MeCbl and/or mfolate deficiencies.

    I wish I believed all my mouth issues were related to these supps. My mouth symptoms began 20 years ago after 8 years of zantac and a course of antibiotics. It’s not thrush, though possibly some other form of fungus or bacteria. No doctor has been able to isolate or identify it as anything other than ‘normal’ mouth flora. I’m certainly hoping the folate and MeB12 will help.

    If you have anxiety it is likely a good idea to microtitrate with the liquid freebase carnitine from Jarrow.

    Yes, I’ve seen your conversation with Johnmac and taken note of your titration suggestion—and his ultimate success. So when I get this Folate and MeB12 steadied, I know what to do. (On this thread: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/page-169#post-674283)


    @Relentless1k I wish I could say more about some of your horrible symptoms.

    My most concerning heart symptoms occurred over two years ago now when Country Life changed the formulation in their Coenzyme B Complex to include 800 mcg of Methyl Folate and 500mcg of MeB12. I wasn’t observant enough at the time to even notice, and suspect this was the start of a domino effect of symptoms for me.

    It was way too much Folate for what was likely almost no absorption of MeB12 in the gut. I began to have heart irregularities, including atrial-fibrillation—but only at night, that were related to lying down. I had to sleep sitting up in a chair much of each night. I was put on a low dose beta-blocker, where I remain at this time, though the symptoms subsided once I got off the B-Complex and began separate Folate and MeB12 therapy. Now a few rapid beats is the most I experience.

    I do identify with your being underweight as I am too, and if I manage to gain weight, it’s easily lost. I believe components of the Deadlock Quartet—particularly the Ad B12 and L-Carnitine Fumarate can relate to weight gain and the addition of new muscle. I’ve suffered atrophy over the years and have damaged tendons from misuse.

    I also have hand tremors.

    I like @Freddd’s suggestion to first deal with the supplements that have the most predictable results, and these are Methyl Folate and Me B12.

    The Thread “B-12 The Hidden Story” has much good, basic information on it. You might try scanning it little by little--even going backwards for some of the more recent posts--for those that speak to your particular symptoms: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/

    I’m hoping you have a good support system around you and that you find ways to ameliorate your symptoms. It would also be nice if there was a doctor or a naturpath who could work with you and was familiar with methylation.

    Take care. Many of us have found our way out of very unpleasant physical situations.

    One other thought: why all those amino acids? Particularly with your bad reaction. Draw back, simplify. If I hadn't stopped even my B-Complex initially, I never would have been able to figure out what each thing was really doing to me.
     
    Last edited: Dec 18, 2015
  20. Freddd

    Freddd Senior Member

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