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B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. Freddd

    Freddd Senior Member

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    Hi Pam,

    There are actually 3 nutrients specifically linked with neural tube defects. The first was Vitamin E which was recognized as necessary to healthy reproduction and preventing some of certain types of problems with the fetus. Folate has been recognized for about as long but only recently elevated to front page attention. And then b12. If you were taking 500mcg and chewing, then you likely absorbed something less than 10mcg. A 5mg held for 2 hours will give you a full mg or a little better. That will make a world of difference.

    I am currently taking 8800mcg of Metafolin a day. Each one makes an incremental difference and I start developing outright symptoms at about 4000mcg which was changed 2 years ago by six weeks on glutathione precursors. At least my neurological healing is progressing again.

    People often have a physical reaction to massage such as you describe, especially those who are ill. I never did experience that but I had a whole lot of nasty symptoms and was totally flattened for 16+ years.

    You will likely do much better by increasing your b12 and retaining it as long as possible to maximize absorption. Methylb12 has demonstrated non-linear dose proportionality over a range of 1 -50,000 mcg daily. Adding the Country Life Dibencozide
    (adb12) can make all the difference in the world too.

    REASONS WHY B12 THERAPIES DON'T WORK FOR MANY PEOPLE
    Version 1.0 - 07/19/09



    1. They take an inactive b12, either cyanob12 or hydroxyb12. The research “validating” their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesn’t work, oh well, that’s the accepted therapy. There is no “dose proportionate” healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
    2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
    3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
    4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
    5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesn’t work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
    6. They don’t take BOTH active b12s.
    7. They don’t take enough active b12s for the purpose.
    8. Lack of methylfolate
    9. Lack of other critical cofactors.
    10. Lack of basic cofactors.
  2. bertiedog

    bertiedog Senior Member

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    Hi Fredd

    Many thanks for your reply. I have been doing 1000 mcg Jarrow methylB23 x 2 for 2 days but developed a horrendous migraine yesterday which meant I couldn't do anything much at all. Migraines have been a massive problem for me since I was 20 and now I am 62! I also took 1 ActFolate along with the usual 3 Basic Nutrients which also contain 500mcg calcium folate/methylfolate. I noticed during the evening a very strong metallic taste in my mouth and it is just starting up again now ( 6 pm).

    Because of this horrendous migraine I had Acupuncture this morning which has helped and I took 2500 B12 after breakfast and 1000 mcg B12 after lunch. I could put up with start-up symptoms like you mention but to be honest I couldn't put up with the sort of migraine I had yesterday if they were a side effect. I do take all the other basic supplements you mention and have done for years. I have also been taking the Jarrow B12 but not using it properly. Now it lasts over an hour!

    I have had live blood analysis in the past and it showed misshapen red blood cells and also I was told there were signs of folate deficiency too so both these problems have been with me for a very long time (since birth maybe).
    Thanks
    Pam
  3. Freddd

    Freddd Senior Member

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    Hi Pam,

    Headaches are an entire book all by themselves. I used to have "chronic daily headaches" with real killers each 2 weeks on schedule lasting 3-5 days. Working with my doctor we eventually found a combination of meds that would relieve these extreme headaches if I caught them right away. After I learned to abort these headaches the whole cycle wound down. If I didn't beat them the next killer headache came on harder and faster and was worse. If I aborted it in the first hour the next headache came on slower and was not as bad. I charted these headaches every day for 6 years. Once I had accumulated 3 headache aborts in that time my doc and I were able to look in my detailed med records what I did each time and we nailed it immediately. I was in the Phase III Stadol study. It was in that in which I found that a combination of opioids and Stadol and later Valium, with the right timing would abort these headaches in an hour and then followed by a "mini-taper" of reducing doses over the next 8 hours would prevent an immediate rebound as the meds wore off. I learned that I had to take the followup doses at 2.5 hours after previous dose to prevent the return of the headache at 3 hours after. These were caused by spasming muscles in my neck and inflamed veins in my scalp (at least). The pain was all around my head and stereo located to in my head. Both of these went away over the first year on mb12 and cofactors. Migraines can be an entirely different problem. Do your migraines respond to the migraine specific drugs?

    Do you have acutely sore neck muscles?
  4. bertiedog

    bertiedog Senior Member

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    Hi Fred

    My migraines only slighty respond to Imigran or other triptan. Sometimes if I take 50 mg Sumatriptan together with Veganin I might have a little success at stopping it develop further. Yesterday I fogot to take the Veganin in the morning when I took the Sumatriptan but took Asprin and it hardly lifted at all, in fact as the afternoon went on the pain just got worse and worse. By then the Veganin only very slightly took the edge off it. When I went to bed it was still horrible but managed to sleep for a few hours when I took a small amount of Rivotril which got me back to sleep till 5.20 when I took another 50 mg of Sumatriptan. This eventually worked after I had gone back to sleep for 2 hours and this is a pattern by the time the 2nd day comes the Sumtriptan works to get rid of it. However often another migraine tries to start up on the other side. When this happens I go for Acupuncture because it usually brings it to a halt the next day. Otherwise they just go on for days I they make me loose the will to live!

    I do have very tight sore neck muscles as well as knots on my shoulders and back. Nothing has got rid of them for any time despite lots of massages, Osteopaths etc.

    I should have mentioned that my adrenals have been trashed by this illness and I am on complete replacement steroids, 5mg Prednisolone plus 2.5mg hydrocortisone x 2 each day and I also have Hashimotos thyroid disease and take a bit of thyroxine but also T3. BTW I loose salt I guess cos of the adrenal problem so have also to take 1/2 tab fludrocortisone so I can hang on to some salt. This has stopped the severe POTS I used to get.

    I also add Potassium because it was found intracellularly I was low on it (as well as zinc and selenium).

    Thanks
    Pam
  5. Freddd

    Freddd Senior Member

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    Hi Pam,

    What country do you live in? Are the muscles so tight that your neck is forced into a reverse curvature?

    These very tight and painful neck muscles in me had a combination of causes, as did all my muscle pain. There was a CNS contribution apparantly caused by lack of cobalamin in the brain and spine. Then Mb12 and adb12, omega3 oils, l-carnitine fumarate and some other cofactors all made contributions. I no longer go through the ceiling if somebody presses on my neck muscles and no longer have the headaches. It took several years plus high dose mb12 to penetrate the CNS to end most of those those different muscle pains and problems. The pain I have left in muscles appears to be related to the CNS neurological damage that varies precisely with my leading edge indicators of mb12 effectiveness.

    Hashimoto's is a b12 deficiency triggered autoimmune disease.
  6. bertiedog

    bertiedog Senior Member

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    I live in the UK.

    Actually I test low in everything, latest one was Vitamin D, below reference range despite 3000 iu daily so have recently started using sun beds for a very short time to try and raise it in the hope my immune system will become stronger. I have a more or less permanent sore, red inflamed throat.

    My neck is sore and tight but no curvature, I tend to push it forward and have to remind myself to tuck my chin in. It would be wonderful to get rid of those sore muscles!

    Does the metallic taste tend to go on for long? When I was mercury poisoned I used to get this but haven’t had it for years.

    I have ordered the carnitine fumerate and also the AdnB12 plus the B complex. I did take acetyl L carnitine at 1 gram daily but I don't think it did anything much for helping me to sustain energy in my muscles.

    I do remember the extra Bs tend to overstimulate me and cause bad insomnia. There are active Bs (around 25 mg of each) in the Thorne Basic Nutrients I take so I guess I might not need extra?

    Pam
  7. Freddd

    Freddd Senior Member

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    Hi Pam,

    Acetyl l-carnitine didn't do anything at all for me either. Puzzling. I tried each form and a couple of mixes. Nothing from any of them except fumarate, and that was intense for 3 or 4 months. I started at something like 125mg and went up from there.

    You may be getting the metallic taste because taste is coming back. Another posibility is that at a certain stage of deficiency and/or healing we get false tastes, false smells, false sounds visual intereference and sensations that don't exist in our feet and so on. Most of these things appear to fade by three months or so and a real improvement around 9 months as many tissues are significantly healed and muscles are becoming normal and some neurological healing has occurred. Of course results vary and the count can start all over again when additional critical cofactors or other things holding up some healing are added. Good luck when everything gets there.
  8. Freddd

    Freddd Senior Member

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    Hi Pam,

    I also forgot one important thing about the metallic taste. It can be from an abcess that has a drainage hole through the gums into the mouth from an inadequate root canal or a developing problem, or gum infections. These reactivated infections in previous root canals are more frequent than many people realize. Some dentists just don't do good root canals. Having to do redos on root canals and other things was one of the qualitative aspects my software used in scoring providers.
  9. bertiedog

    bertiedog Senior Member

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    Hi Fredd

    I had to have a root canal tooth removed plus the teeth either side cos they got infected too but that was over 3 years ago. I have found out what the metallic taste/burning in my mouth was, I had yet another throat infection. This has been a nightmare since before Christmas, I just cannot get rid of it despite lots of antibiotics.

    I had a telephone consultation with Dr Myhill, my CFS doctor on Monday and she is thinking I might be full of viruses so she wants me to take Acyclovir to see if there are benefits and maybe to take it long term. In the meantime I am taking Eryrthromycin again for a week and then will start the antiviral.

    She is a great proponent of improved methylation so she will be quite happy with what I am taking.

    BTW the AdenB12 came yesterday so I started this along with 2500 mcg methylB12 and one casule of the carnitine fumerate along with my usual supplements which included 800 active folates. I have been feeling terrible since last week because of the throat infection and haven't been able to do anything much but I noticed a difference within an hour from when I took the AdenB12 and carnitine. I had some energy which lasted for the rest of the day.

    However I couldn't get off to sleep till gone one and only after some clonazapan. Was awake again by 5 took my usual steroid/thyroid meds and went back to sleep around 6,30 but just for an hour and a half. Again I felt a lot better this morning energy wise and this afternoon managed to go out for a short walk but of course the energy soon ran out and now I am back to aching.

    I haven't added any B Right yet cos I want to sort the sleep issue out. There is a good amount of active Bs in the my basic supplements so I will probably try just half a capsule of the B right once the sleep settles down. Is it ok just to take 2500 methylB12 plus the 3000 AdenB12? I wouldn't say I have noticed anything bad from these just the sleep thing.

    Many thanks

    Pam
  10. Freddd

    Freddd Senior Member

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    Hi Pam,

    For effectiveness the l-carnitine fumarate needs to be taken on an empty stomach 30 minutes before or two hours after food. The mb12/adb12 should generally be taken for a couple of hours in the morning because of the timing of the melatonin generation more than 12 hours later. The b-right will help these things work correctly. Don't predicate it on the sleep issue because you may never get the sleep issue resolved otherwise. The sleep issue will solve itself with the timing of supplements and when you reach equilibrium. In research what has been found is that people tend to sleep slightly shorter times of more refreshing sleep with mb12 and that it takes a few weeks to generally settle down to the pattern. The level of b12s you are taking sounds just fine. You might increase the mb12 or add a second dose 4-6 hours after the first dose. This could help it reach equilibrium sooner. It doesn't increase peak but it stretches out the time for diffusion into the tissues when done as a second dose. Metafolin also helped normalize my sleep. As you are clearly having an effect you would be well advised to have potassium at least on hand and be taking some unless you have known high potassium.
  11. undcvr

    undcvr Senior Member

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    Ive been wondering abit too about why carnithine in that particular form is so effective compared to its other forms as well as carnithine by itself. I am guessing that fumarate takes the carnithine directly into the Krebs energy cycle to be utilised. That was one of the initial theories behind binding minerals to citrates too. That citric acid being part of the Krebs energy cycle would preferential take up the acid, along with the mineral bound to it to be utilised. The same theory applies to fumarate, acetates, etc. That plus the fact that there might be an active transport mechanism for them specifically in the gut ?

    In that case, the carnithine fumarate bond would be strong enough to not dissociate (high dissociation constant) and the molecule is taken up and into the bloodstream intact. Its the only reason I can think of. Acetyl carnithine isnt really used for energy production, in fact there is a paper somewhere that says that too much ALC can be counterproductive to the energy process. If you take that supplement it would be in hopes of getting past the blood brain barrier and into the brain where it is utilised, supposedly for cognitive functions.
  12. h4house

    h4house

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    Current version of protocol

    Hi,

    A friend of mine has been suffering from CFS/ME for many years +10 plus at least. It appears been caused by a severe anaphylactic reaction to a particular class of antibiotic. Unfortunately she was given the same drug on two occasions...the first time she had to be resucitated, the second time she was airlifted to hospital.

    I have two questions...

    1. Do the experts on this site feel that anaphylaxis could cause a B12/Methylation issue.

    2. I've been trying to find an up-to-date version of the protocol. The only concise version found so far is on the wrong diagnosis site (http://forums.wrongdiagnosis.com/showthread.php?t=62327&ktrack=kcplink) dating back to '09. Found a post by Cort trying to verify the current protocol, but no reply. Is there an more current version somewhere that I have missed?

    Many thanks for your time.
  13. Freddd

    Freddd Senior Member

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    Hi H4house,


    Do the experts on this site feel that anaphylaxis could cause a B12/Methylation issue.


    I can only answer for myself and I am by no means an expert on anaphylaxis. In talking to thousands of people over the past 8 years what I have seen is that almost any type of stress on the body can tip some people over the edge into the b12 deficiency and methylation shutdown. We see physical injury is often the key in FMS. Half a dozen viral or bacterial infections have been associated with triggering the descent into CFS. I experienced both of those. I have also talked to people in which the stress appeared to be vaccine becasue it puts a sudden stress on the immune system, not because it is any specific vaccine.

    Anaphylaxis is an interesting suggestion. SPECULATION! As mb12 and mfolate deficiencies (even borderline) increase the over the top responses to things, from skin irritation to Multiple Chemical Sensitivity to allergies and asthma and autoimmune responses, it conceivably could play a part here too. Then the response depletes the already borderline Mb12/mfolate to below a certain level and they crash and can't get back without supplementation.

    That would be following the same pattern as seen in other situations, just with a different stress.


    Found a post by Cort trying to verify the current protocol, but no reply. Is there an more current version somewhere that I have missed?

    If I had seen Cort's post I would have responded. However, the basic protocol hasn't changed. There has been several possible titration patterns talked about. The biggest single change I have made is to take the Metafolin at the same time as I start some sublinguals and/or inject. This times the 3 hour metafolin peak to coincide with the mb12/adb12 peaks and appears to work some increment better. Most of the other differences have been around understanding why glutathione (precursors) can stop and rapidly reverse healing and induce immediate deficiencies (methyl-trap) in mfolate, mb12 and slightly slower appearing deficiencies in adb12 and why not all mb12 is created equal. Also, I have returned to my practice of the earliest years of taking a mix of mb12s every day. I am currently taking in addition to my 3 x 10mg SC injections daily, 3 x 1mg Enzymatic Therapy mb12 and 3 x 5mg Jarrow mb12 and 3 x 3mg Country life adb12 all together as a single 3hr dose timed for peak with 3 metafolin and an injections so they are all carried together in diffusion into the CSF. This has finally started to overcome the neurological deterioration induced by the glutathione.

    I am preparing a new version of the symptoms list (expanded), and will also do an updated version of the protocol with the tweaks in it along with a version of a decision tree for fine tuning.
  14. PokerPlayer

    PokerPlayer Guest

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    I have a couple questions.

    1. I have had numerous concussions as well as many subconcussive blows from football in high school. Is there any way this could be linked to my fatigue or cognitive symptoms? I would like to say I was pretty symptom free for at least 2 years after my last concussion. I do wonder about how methylation and b12 play a role in head injuries, because it seems to be that people with concussions are "more prone" to depression and anxiety disorders, but no one can explain why. I would also like to add that I went through a 2 year period of extreme stress that could also be a large thing to blame, but I am thinking that my concussion history somehow made my body less able to cope with stressors.

    2. My symptoms (brain fog, fatigue, anxiety, depression) were clearing up pretty good on the protocol once I added adb12. However, a week later the brain fog slowly came back. I have since added the l-carnitine and d-ribose which have given me a significant energy boost and decent brain fog reduction. Tomorrow I am going to add the TMG (1 gram per day) and then maybe 4 days later I will add the sam-e (200mg). But, I have read that some people do well on higher dosages of adb12 to clear brain fog. I seem to be highly reactive to adb12, but the first week I took nothing but high dosages of mb12 and I saw a little improvement, but the adb12 was very very potent. I have read that some people have to take 3-5x 3000mcg adb12 per day to clear the brain fog. I am thinking about trying this once I get tmg and sam-e in to complete the list of co-factors.

    I already take the essentials (bright,c,a,d,etc) and 3x5000mcg mb12 1x3000mcg adb12.
  15. PokerPlayer

    PokerPlayer Guest

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    Ok, well as I said in the above post, once I started this protocol I would feel great for a week and then my symptoms would come back. I would then add in adb12, and feel great for a week and then feel bad again. Last week, I added in the l-carnitine, and I felt great for a week, but then yesterday my symptoms came back like clockwork. Today is the worst I have felt energy and muscle wise ever. I feel extreme muscle weakness, that feeling when you first wake up and you can't squeeze your first.

    Anyway, I am worried that this program may not work for me. Is getting extreme muscle weakness a bad sign and should I stop asap? I'm just a little confused and frustrated that something that could seem to work so well for 3-4 weeks could all of a sudden make me feel worse than before I started the program.
  16. Freddd

    Freddd Senior Member

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    Hi Pokerplayer,

    Let's talk about these things you bring up.

    Today is the worst I have felt energy and muscle wise ever. I feel extreme muscle weakness,

    You understand that it is quite possible to have more than one thing going on at a time. Lack of potassium could do this, extreme muscle weakness. With certain types of neurological damage muscles can feel weak yet not be. I had that for years

    I'm just a little confused and frustrated that something that could seem to work so well for 3-4 weeks could all of a sudden make me feel worse than before I started the program

    I know all about it. When the ET 1mg was suddenly out of stock all around the country after the first times I mentioned the effect and I started a different brand as I had to, it was the one that came out zero star as symptoms started coming back very rapidly and within a week were unbearable. However, there are lots of reasons for various perceived differences. One of the things to remember is that we perceive differences. When for instance a maximu8m effect for a dose or level of cofactors or whatever is reached, and things don't change for a few days, all that perceived change in energy is gone because our "base state of comparison" changes. Further if a cofactor is running out we have to make corrections. So one big thing I don't see on what you take is Metafolin or maybe more than you are taking. What about 50mg of zinc? How much D3? Enough magnesium? B-Right twice a day? SAM-e? Is the L-carnitine fumarate being taken on an empty stomach or with food? An empty stomach can make a huge difference. I titrated l-carnitine at 125mg steps up to 1000mg and then backed off to 500 wehn more made no difference. Soem people need several thousand mgs.

    Since mb12, adb12 and l-carnitine fumarate (?) all produced effectiveness, are you including Alpha lipoic acid? D-Ribose?
  17. PokerPlayer

    PokerPlayer Guest

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    Yes, l-carnitine fumarate made a big difference when I added it last week. I had started to feel a return of symptoms and then I added the l-carnitine and it worked great. I added the d-ribose a few days after the l-carnitine. I could up the carnitine to 3 grams or so from the 1 gram I am currently taking. I take 2400mcg of metafolin. How do you feel about that dosage of metafolin?

    Magnesium-600mg, bright 2x per day, d3 5000iu's a day tested and confirmed in the upper range of vitamin d levels.

    I do not take: Sam-e or alpha lipoic acid. I just didn't see an emphasis on these, and I felt such a big difference without them that I did not think I would need them, or possibly sam-e or alpha lipoic acid may have negative effects. I could add in 200mg sam-e per day and 300mg ala sustain. What do you suggest for dosages of SAM-e and alpha lipoic acid? Should I take SAM-e and titrate up until I feel an effect?

    I do not take zinc because I took zinc for 6 months straight and tested over the range high on zinc in october 2010. I guess I could take zinc as long as I take copper with it to not upset the zinc/copper balance.

    Intuitively, it feels as though the b12 stimulates my system until my system becomes exhausted, in which it shuts down as it is now. I hope I am wrong. I will up the l-carnitine, take sam-e, and take alpha lipoic acid.
  18. Freddd

    Freddd Senior Member

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    Hi Pokerplayer,

    Intuitively, it feels as though the b12 stimulates my system until my system

    Yes, that might be such an understanding. B12 is not a stimulant. It doesn't act like one. It does largely 3 things; it causes the mitochondria to produce more energy, and there can be holdups on cofactors in that, it causes all sorts of cells to heal which rapidly depletes resources, for example potassium, zinc, c ,magnesium, A, E and everything else needed to build cells which is subject to sudden holdups by exhaustion of resources and it improves performance of the nervous system and brightens all the senses. That appears to many people as "over-driven" at first but can rapidly fade to "normal" for the present equilibrium and definitely does not maintain that ehanced brightening for long. You may be one of thise who has trouble getting enough b12 into the CNS/CSF.

    As Alpha lipoic acid improves the l-carnitine performance that might be one reason to take it among others. Maybe 4800 mcg of Metafolin will work better. Welcome to fine tuning. You have demonstrated that it works, now you need to find where all the "leaks" are.

    I would take the 4800mcg of Metafolin as 3 doses at least as it has a short serum halflife.
  19. Adster

    Adster Senior Member

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    Pokerplayer, it might be worth keeping an eye on your copper levels if you are supplementing that and taking alpha lipoic acid. My understanding is that ala decreases the normal excretion of copper. Copper becomes toxic at very low levels above normal.
  20. bertiedog

    bertiedog Senior Member

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    Hi Fredd

    Thought I would update you on how things are going.

    I am 10 days into adding the 800 mcg Metafolin, 2500 mg MethylB12, 3000 mg AdnB12 and one L Carnitine Fumerate. I have definitely noticed an improvement in energy, I don't want to sit around all the time, I need to get up and do some things.

    However I still cannot walk very well for more than 10 minutes before the energy runs out of my body, the extra 5 minutes it takes me to walk round the park on most days really takes the energy and I notice a nasty sore throat comes back with the depleted energy (this is during the afternoon).

    The only really bad day I had was when I took about 1200 mg of an antiviral called Acyclovir. It gave me a horrendous toxic feeling like I was on speed, terrible calf pains and raised heartbeats and insomnia/panic. No way will I take anymore of that I want to carry on with the methylation supplements and give it more time. I feel the Alcyclovir somehow upset the potassium/sodium balance. I do take extra potassium plus extra sea salt cos I loose salt because of adrenals that don't function (on the Pred and Fludro),

    Do you have any suggestions for additions or should I stick with things as they are. I have added 1/4 methylb12 after lunch but it didn't seem to do anything more. I also take lots of other supplements including 5000 iu Vitamin D.

    In general I definitely feel better in myself and that has to be a good sign.

    Pam

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