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A Little Poisoning Along the Road to ME/CFS
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Doing the protocol - extreme reaction to A-B12. Advice needed!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Linda, Apr 1, 2011.

  1. Linda

    Linda

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    Hi,

    This is my first post here. I need some help, information, advice from anyone who has experience of this protocol and B12's.

    I have had a really bad reaction to taking only 1x half of country life AD-B12.

    The story is: I have had CFS for several years was feeling physically much better but still had a foggy head and cognitive problems. Thought I'd try the Protocol.

    Since the beginning of CFS I've been taking; a solgar multi-vitamin (containing 400mcgms folic acid), minerals, 100mg sam-e, Betaine, 100mgs P. serine, 1000mgs O3, !00mgs B complex (with 400mcgms folic acid). Along with all supplements needed for mitochondrial function after this was tested very low.

    I can't take GSH or NAC.

    I began adding 1 x H-B12 and then 3 weeks later added a pinch of crushed Folapro.
    This was O.K. for almost 3 months then I decided to add only 1 x half AD- B12.

    By the end of that day I was experiencing severe headaches. But I feel it is muscular as the muscles on my head and face feel sore,as if they are on edge, with the skin sensitive to touch. Blurry vision, earache, anxiety, feeling hyper. All of these are new syptoms. With a mega foggy brain and cognitive problems worse than before.

    I stopped the B12's and Folapro.

    That was 7 weeks ago and I still have these awful symptoms.

    I'm sure the answers are probably somewhere on this forum but my concentration is now so poor its difficult to wade through the info. so would be grateful for any input.

    Could anyone tell me why this might have happened? If there is anything I can now do to calm the situation?

    Would this be start-up or detoxing after 7weeks or JUST a bad reaction?

    If it is a start-up response would resuming the B12's and Folapro ease the situation or exacerbate it?

    Would a B12 be absorbed without the folates?

    I hope someone can help me with this. I'm really worried!!!

    Wini.
     
  2. Joopiter76

    Joopiter76 Senior Member

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    Did you already take an form of B12 before the country life A-B12??
     
  3. L'engle

    L'engle moderate ME

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    Could be the folic acid in the Adb12? Maybe an dactive folate would help but I can understand your reluctance to try more things. Good luck.
     
  4. Freddd

    Freddd Senior Member

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    Hi Wini,

    It sure sounds like a paradoxical folate deficiency reaction. Read http://forums.phoenixrising.me/show...ucing-deficiency-called-quot-ddtox-quot/page4 and then lets talk about it. Unfortunately Country Life dibencozide has folic acid in it. I'm trying a different brand for my next doses but it may take a couple of months before I can really say anything about it, or I may know right away. The folic acid from all your sources could be entirely the cause of the problem. Yesterday I eliminated folic acid 100% from my daily intake.
     
  5. Linda

    Linda

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    Yes. I was taking 1 x Perque (hy-B12) daily for 3months but these syptoms only started after the half x AD-B12.
     
  6. Linda

    Linda

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    Hi Fredd,

    Thanks for replying to my post so quickly.

    I have read the page you suggested, understanding is more difficult. From what I can understand, to put it simply, Folic acid competes with Folates for absorption and utilisation.

    So it could be that I'm taking too much folic acid but why would I feel OK with Folic acid and 3 months on Folapro only to feel dreadful after one half of A-B12? Why would these reactions not occur prior to the A-B12?

    Could you tell me what a 'paradoxical folate deficiency' is and why it would happen? and also why it would continue for 7 weeks? Surely the affect should slowly subside?

    I also have a very bad reaction to P-5-P could this be linked?

    I started taking high dose B complex for mood and also becuae I've been a vegetarian for 15 years and felt I needed extra B's but will look for one without folic acid now.

    Hope you don't mind all the questions!

    Wini.
     
  7. Freddd

    Freddd Senior Member

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    Hi Wini,

    So it could be that I'm taking too much folic acid but why would I feel OK with Folic acid and 3 months on Folapro only to feel dreadful after one half of A-B12? Why would these reactions not occur prior to the A-B12?

    This is a question I had also, why did the folic acid in the Country Life dibencozide have so much more effect than the oral dose in B-Right. My possible answer was "sublingual absorption" getting the folic acid directly in the blood stream as well as all that got swallowed. By bypassing the digestive system the Metafolin I took to compete in absorption wasn't even a consideration.

    Generally the only noticeable effect of adb12 is "energized" as the only reaction it engages in that is quickly perceptible is producing energy in the mitochondria. As a vegetarian l-carnitine fumarate might make a huge difference in the energy generation as well, as it did for me after 20+ years as a vegetarian.

    Could you tell me what a 'paradoxical folate deficiency' is and why it would happen? and also why it would continue for 7 weeks? Surely the affect should slowly subside?

    A 'paradoxical folate deficiency' is a folate deficiency that is triggered by what would normally be thought of as providing folate. That's what makes it paradoxical.

    why it would continue for 7 weeks? Surely the affect should slowly subside?

    I stopped the B12's and Folapro.

    That is you answer. The deficiency has never been corrected and deficiencies that are not corrected just keep on going. It's a methylation block in a bottle. Folic acid, in susceptible people causes a methylation block in 2 hours or less that continues and gets worse until you put a stop to it. For me, and I have been through maybe 100 such cycles, at least 10 of then in the past 2 years since the glutathione kicked it off in a big way, it takes a lot of Metafolin to reverse it along with sizable doses of mb12. To end the deficiency induced by the glutathione took a single dose of 4800mcg of Metafolin. When I was taking 800mcg per day of folic acid it took 8800mcg of Metafolin each day, timed carefully in regards to the folic acid, to get me out of the deficiency and turn methylation back on. Methylfolate is the only form of folate that penetrates the blood brain barrier. Once you don't have the folate in your brain mb12 doesn't work either for many of it's functions. This affects mood and neurology and everything.

    My experience of taking the large dose of Metafolin is that the folate deficiency symptoms started going away in a couple of hours. Then when I took a sizable dose of mb12 a few hours later, my regular 10mg injection, I had some degree of startup responses all over again.

    Since stopping folic acid 100% 4 days ago my neurological healing has started up with more intensity than I have seen in years.

    With preloading with 3 Metafolin tablets prior to the 3 adb12 tablets the effects of the folic acid were limited to about 8 hours for me.

    I also have a very bad reaction to P-5-P could this be linked?

    That is difficult to say. I personally have never been able to notice the difference between b6 and p-5-p, but then that has always previously been affected by folic acid.

    I started taking high dose B complex


    Doesn't this have folic acid in it too? Then you wouild already be preloaded with folic acid and the small amount added might have put you over the top. If you are still taking folic acid in the b-complex that could also be maintaining you in the deficiency.

    I'm switching to the Douglas Labs B-complex with Metafolin in it. Right now I just bought a b-complex without folic acid or cyanocbl to tide me over until I get the Douglas Labs product.
     
  8. Linda

    Linda

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    Morning Fredd,

    Thanks again for answering so quickly. Its great to have someone who is so knowledgable to ask for info.

    It is quite difficult to understand how a deficiency can be triggered by providing what the body needs!

    Also, why such a tiny amount (100mcgs of folic acid in half A-B12) should trigger this, its almost like this 'flicked a switch'.

    Prior to starting this protocol I felt physically fine only cognitive difficulties. Now I have the physical symptoms again especially pain in head muscles and I wondered if that could be the A-B12?

    Could this also be a detox reaction?

    I know you can't actually advise me to take anything but you obviously think starting the Folapro and B12 would help?

    When I started Folapro I could'nt manage a 1/4 so over the 3 months took a pinch. I will start as before and see how I go.

    I know there's a big debate about which is the most effective B12, as I'm slowly managing to get through some threads. I would like to try the M-B12 but still have a few amalgam fillings to be removed and am a little worried about trying it. If I was to try it what would be the starting dose? Can H-B12 be taken with this?

    I live in the UK and we don't have the help, tests or availability of supplements as you have in the USA. Mostly you have to go-it-alone. Some supplements I get from 'iherb'. They have a Thorne B Complex without folic acid.
    It has; Folate, as calcium folate 200mcgs and 5-Methyl-tetrahydrofolate 200mcgs, also A-B12 200mcgs and M-B12 200mcgs.
    Do you think this is OK?

    Last question! If A-B12 goes into the mitochondria will it help to heal them? I have been taking A-L-Carnitine for ages but it does't seem to make any difference. I will try the L-fumarate.

    Sorry, a lot of questions again Fredd!

    Thanks, Wini
     
  9. Freddd

    Freddd Senior Member

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    Hi Wini,

    Also, why such a tiny amount (100mcgs of folic acid in half A-B12) should trigger this, its almost like this 'flicked a switch'.

    The "flicked a switch" is exactly my experience with the folic acid, especially in the adb12 tablet. I think that it may be related to direct sublingual absorbtion of the inactive form, though I am just hypothesizing.

    calcium folate

    That is basically folic acid bound to calcium. It would dissociate back to folic acid in solution as far as my understanding is. In any case it is for all intents and purposes folic acid. I'm switching to the Douglas labs with no form of folic acid at all. In the meantime I have switched to another brand without any folate or cobalamin at all that I bought at a pharmacy.

    There is absolutely zero reason to think that a couple of amalgams would cause a severe mercury problem. What they can cause is panic reaction due to fears. While they could produce a level of mercury totally undetectable 30 years ago and which now can be seen with extremely sensitive instruments it is perhaps 1 billionth of the potentially toxic level.

    It is quite difficult to understand how a deficiency can be triggered by providing what the body needs!

    The problem is that for 20% of people genetically, folic acid can't be converted at all. For another 30% only a little can be converted. For the other 50% the natural ceiling on the amount converted may not be enough. For some and maybe all, folic acid and folinic acid appears to compete with and/or block methylfolate activity.

    The studies on Metafolin show the difference very plainly. For the doses used in the study the Metafolin produce serum methylfolate levels 7 times higher on average than the same amount of folic acid. For 20-50% of people that would be up to infinitely higher as the amount of folic acid converted approaches zero.


    I know there's a big debate about which is the most effective B12


    No, there isn't any such debate. Some maintain that mb12 is way too effective. My suggestion for those that believe such is to take tiny amounts to limit it to the amount of activity of hycbl converting to mb12, maybe 10-50mcg a day. A quarter of a 1mg tablet chewed and swallowed would achieve exactly that and avoid the big inrush of diffusion by making it all go through the digestive system and active transport system. In some percentage of people that would be almost completely ineffective, just like swallowed Hycbl.
     
  10. Linda

    Linda

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    Hi Fredd,

    Thought I would come back and let you know how I'm doing.

    I stopped the B-complex and Multivitamin containing Folic acid immediately, also Sam-e and TMG. Then started taking 1/4 twice daily of Jarrow 1mg Methyl-B12, 1 Hydrox-B12 and a pinch of crushed Folapro on 7/4/11 and by 14/4/11 most of my symptoms such as head pain, foggy brain, earache and skin sensivity had reduced by 50% with depression and anxiety almost gone!

    I have now increased the Methyl-B12 to 1/2 x 2 daily. I still have a headache but more tolerable. I feel this is due to the Folapro as it's similar to when I first tried it last year. I shall reduce this slightly. Trying to get the same size pinch every day is difficult.

    Should I keep increasing both slowly and add in Adenosylb-B12? (but not Country life)

    I'm not sure whether to contiue with the Hydroxy-B12 and if it's wise to add in the Sam-e and TMG?

    You've mentioned the need to take potassium in other threads but I can't find the dose. How much do you suggest?

    Finally, I want to thankyou so much for your help. If I had not posted here and had your reply I would have continued to avoid b-12 and folates believing they had caused the problem and the dreadful symptoms would have continued. Now I don't feel so desperate.

    Thanks. Wini
     
  11. Freddd

    Freddd Senior Member

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    Hi Wini,

    You've mentioned the need to take potassium in other threads but I can't find the dose. How much do you suggest?

    That is a complicated topic. For instance certain diuretics can cause the excretion of considerable potassium. Some kidney problems can cause retention of potassium. The healing startup, and maybe especially with those who have a switch thrown effect with the Metafolin without folic acid can deplete serum potassium rapidly. For me tests were too far between for useful potassium management. I had to become aware of the early signs of depleted potassium. For me it can be muscle spasms while relaxed and mood changes. For many heart palpitations are a tipoff along with mood changes. I have taken every quantity between 2x99mg/day to 12x99mg per day with even 18 a few days after reversal of folate deficiency. Pay attention to your body. Lowering potassium can cause all sorts of symptoms and is one of the potentially most dangerous of the startup responses. While it is a flag raised to indicate cell formation and success at starting to heal it can also cause major problems up and including death in prolonged and extreme cases. Considering that each 99mg is 3% of daily requirement taking several a day isn't going to be a problem for people as long as they don't have kidney problems and accumulate too much potassium. I have found being responsive to what my body is doing is important. It is important to recognize what the changes are and are not. At the very least it's good to have the potassium on hand becasue once trhe spasms start you won't be able to go out to buy some and a few (3-6 maybe) tablets on an empty stomach can stop the spasms, heart palpitations, mood changes and so on in 30 minutes or less. By all means talk to your doc about it and note where your potassium levels are on your CBC. If it is above 4.5 it is much les likely to be a problem. I start having problems as it gets down to 4.2, which is above the "low" limits of 3.5-4 (depending upon lab).



    I'm not sure whether to contiue with the Hydroxy-B12 and if it's wise to add in the Sam-e and TMG?

    I don't think the hydroxycbl is going to make much difference either way. You can try a week with it and a week without it a few times and if it makes no difference there would not be much point in re-ordering it. I would suggest adding the TMG on and off for a month at a time and see if you notice the difference. It might show more difference with or without the SAM-e. It is inexpensive and that is a good reason to try it sooner than the expensive SAM-e. Add one and a month later the other or something like that. It is most important to get the basics all going so that nothing like a lack of D or magnesium or calcium can be holding things up. Get the basics going and let your body adjust and settle in a bit so you can see what isn't being helped. That can improve one's aim.

    should I keep increasing both slowly and add in Adenosylb-B12? (but not Country life)


    Sounds like a good plan. As these increase the hypersensitive responses to all sorts of things will fade.
     
  12. Linda

    Linda

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    Hi Fredd,

    Just need some extra advice please.

    Was doing well for couple of weeks but over the last week have started to feel agitated, sweating a lot, eyes blurry, muscle pains in head and neck which I've not had before but worst of all have a crippling headache that nothing seems to ease.

    I'm taking the basic supplements. I am still taking only one 1000mcg Methyl-B12 (Jarrow) and a tiny pinch of Folapro.

    Would these be linked to start-up? Low potassium? or something else. I've not added Ad-B12 yet.

    It's pretty scary!

    Wini.
     
  13. Freddd

    Freddd Senior Member

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    HI Wini,

    It sounds like low potassium. Also, you may need substantially more Metafolin. A lack of Metafolin prevents utilization of the mb12. The muscle pains, likely causing the headaches also point at lack of potassium and [possibly Metafolin. Also, lack of adb12 can cause the muscles to go into what I have called "exhausted contraction" state which is quite painful. Also, magnesium might be looked at. An imbalance between calcium and magnesium can also contribute.
     
  14. Mary

    Mary Senior Member

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    Wini and Freddd - I've been playing with potassium doses too. Wini, at one point my vision was getting blurry and I finally connected it to low potassium. An on-line search revealed that low potassium can cause blurry vision.

    I also have a blood pressure wrist cuff. I find that my blood pressure has been sort of all over the place since starting the methylfolate etc. and potassium. It's been going higher than usual (up to 142) and so I figure then that my potassium has gone low and I'll take a potassium tablet, and a couple of hours later my BP is back in teh 120s. However, sometime it goes even lower, to 110 or so but my pulse will then go up into the 80's, it seems trying to compensate for teh lower BP. So I feel like I'm doing a balancing act. I'm trying to eat foods now that have a lot of potassium because I seem to react so strongly to the tablets, even though I only take 1 or 2 a day at most. I actually started cutting them in half and that seems to work.

    Wini, one more thing - do get your BP checked. If your potassium has gone very low, it can raise your blood pressure and high BP can cause severe headaches as well as being dangerous. You can get a portable wrist cuff for around $40 at the drugstore which work pretty well.

    Mary
     
  15. Linda

    Linda

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    Hi Fredd,

    I started the potassium on 8th and have already had a big reduction in the headache, at least 70% better, but still have tight muscles on the head, my jaw joints ache a lot and forehead skin is very sensitive to touch, which I'm hoping will go as I raise the potassium etc., gradually. I only started with 1x99mg Potassium as I was worried about the sodium/potassium balance with having adrenal problems and believe you have to be careful with this.

    When I tried increasing the folates my head gets worse so,again, I'll increase gradually. I guess you have to just put up with some things and 'push through'.

    I've also added in the AD-B12 (source naturals) and have felt no affect after taking it.

    Wini.
     
  16. Linda

    Linda

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    Mary,

    Thanks for suggesting the possible blood pressure link. I'm being cautious with the potassium but when you look up the potassium content of foods some have quite a lot e.g. average banana 400mg, baked potato 300mg, you realise 1x99mg tablet isn't too high.

    I will buy a BP machine though if I can find one in the UK.

    Wini
     
  17. Mary

    Mary Senior Member

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    Wini - you're right, one 99 mg. potassium tablet is not much compared to foods like a banana etc. I know Freddd has taken quite higher doses. I just seem to react more strongly to a potassium tablet than to foods high in potassium (I have no idea why) and I just got concerned when my blood pressure went up and down so much. When my BP goes up, I am using it as an indication that I need more potassium because it does go back down a few hours later after taking a tablet, and actually think I am tolerating the tablets better than I did intially. What I don't like is that my pulse goes up when my BP goes down! It is a balancing act ...

    You can get a wrist blood pressure cuff on-line in the UK if you can't find one locally. Good luck -

    Mary
     
  18. taniaaust1

    taniaaust1

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    Pills dont just have potassium... but also have other things in them which help make the pill eg binders, fillers, colouring and sometimes preservative. Sometimes even changing a pill brand can really help. I had to do that with my magnesium.
     
  19. Freddd

    Freddd Senior Member

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    Hi Taniaaust,

    Yes, brand and type may make comsiderable difference. I find the gluconate to be quickly effective from NOW foods. The caution that applies with potassium is to take it withj a LOT of fluid and food. The reason of a 99mg tablet is to prevent the tablet from getting up against the stomach wall and killing tissue. I worked up to the dose I am at and have gone down from it many times and each time I come off a paradoxical folate deficiency period I need to increase it again from where I had gone down to. Getting rid of the folate problem could end up making a significant difference without the stop and go on the cell formation. I don't appear to react at all to potassium from food and certainly not fast enough to stop an attack of spasms. Tablets with plenty of water can do so in 20 minutes. The prescribed potassium is potassium chloride which is DISSOLVED in water to take.
     
  20. Freddd

    Freddd Senior Member

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    Hi Wini,

    I have started my trial with Source Naturals Dibencozide and it appears to be satisfactory however that is just preliminary. Around July 1st or so I will take a 51mg dose of Country Life Dibencozide to see if it makes a difference. Dibencozide may not make a noticeable difference for everybody especially if you have been taking mb12. If you have had muscle wasting and have everything else in place, and you challenge your muscles physically they can regrow and this can trigger low potassium.
     

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