Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Starting Freddd's protocol - a few questions

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Kitsune, Oct 25, 2015.

  1. Kitsune

    Kitsune Senior Member

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    Hi, I hope it's OK that I've put this in a new thread. If it would be better for me to post questions like this in an existing thread, someone please point out an appropriate one and I'll stick to that.

    Anyway, I didn't know what methylation was until I found this forum not long ago. I was working on 2 things: improving my existing supplement regime, and taking natural antivirals. I found some good advice about supplements to take in the threads about methylation and was just about at the level of having all the basic co-factors in place, and thought meB12 would be a good thing to add, though I didn't intend to actually go through with a full methylation protocol.

    However, I've been taking 1000mcg meB12 for a week and have found a need to supplement a bit of potassium at times. Today I was feeling quite sleepy, then started to get dizzy and had some mild heart racing. Potassium seemed to mostly mitigate this (just a 400mg dose). But it frightened me - if I'm only taking the 1000mcg of meB12, it looks to me from what I've read here that it could be enough for me to need ALL the methylation supplements in place - and on top of this, I have some adB12 on order.

    So maybe by default I've started something I need to do properly. I've got the recommended gamma E on order now, and the Solgar methylfolate (at the moment I'm getting what I think may be vegetarian folate from my multi and B-complex - not the same thing, I know, though at least it's not folic acid). But I'm still frightened about a few things.

    It looks like I could end up having to take massive amounts of methylfolate, which must be expensive. I could try asking my doctor for a deplin prescription, especially since he knows I've had depressive symptoms in the past, though I don't know if this is generally available through the NHS.

    I guess I'll be OK with keeping a bottle of 200mg potassium tablets around for when I need them? I just hope I can learn to recognise deficiency symptoms for this and differentiate them from deficiency symptoms for other things, like the methylfolate.

    Is Freddd around these days? If I got myself in trouble and was really ill, I hope I would be able to come here and get some support. It looks like there are a lot of friendly and knowledgeable folks here, though it doesn't look to me like Freddd's been active lately.

    If anyone else has any advice, I'd be keen to hear it. Thanks!
     
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  2. Mary

    Mary Senior Member

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    @Kitsune - both MB12 and methylfolate can induce a potassium deficiency, because, as I'm sure you've read, they cause cells to start behaving properly and dividing, etc., and this can require a lot of potassium. 400 mg. of potassium is not very much. The daily RDA is 4000 - 4500. When I started taking methylfolate (I had already been taking MB12 for several years), my energy initially increased and then I was hit by severe fatigue and lethargy, which turned out to be low potassium. I titrated up to 1000 mg. of potassium a day and have pretty much taken that ever since, in divided doses throughout the day. So if 400 mg. potassium alleviated your symptoms, that's great. You could very well end up needing more once you start the methylfolate. You shouldn't take a large amount of potassium all at once - you need to work up gradually to your optimum dose. I got up to 1000 mg. over 3 days I think. Anyways, I would definitely keep your potassium around and probably just keep taking it, at least for now.

    Why do you think you could end up having to take massive amounts of methylfolate? I take 1600 mcg. of methylfolate (2 x 800 mcg. tablets, in two doses) plus 5000 mcg. MB12. I don't think you need to worry about needing deplin, at least not right now.

    Re potassium: I learned I had had chronic low potassium before even starting Freddd's protocol, only I didn't know it. I would just get this awful fatigue (different than crashing - PEM) and never knew what caused it or what made it go away. But when I started the methylfolate, that same fatigue came back with a vengeance and suddenly I knew what it was. people with CFS often have trouble with low potassium, its part of everything, I don't know the chemistry.

    I haven't seen Freddd on the board for awhile, I don't know if he's still here -
     
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  3. helen1

    helen1 Senior Member

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    @Kitsune, have you read the methylation documents in Caledonia's and ahmo's signatures? If not, please do, they will help you immensely to navigate methylation successfully. I found Caledonia's 'Roadblocks to successful methylation' I think it's called especially helpful.
     
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  4. Kitsune

    Kitsune Senior Member

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    Hi Mary,

    I've certainly read that potassium is needed at the beginning of the methylation process. So is this (the 1000mg a day) something you've found you have to carry on with indefinitely? Can I ask how long you've been doing the protocol?

    From reading other posts, it looks like particularly when people get into the larger B12 amounts (aiming for 20mg or so I think?), sometimes they end up taking similar amounts of methylfolate.

    I'll certainly keep an eye on the potassium, thanks. Hopefully forewarned is forearmed.
     
  5. Kitsune

    Kitsune Senior Member

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    Hi Helen,

    I've been looking at those today, thanks. 2 things stood out for me personally: starting 'low and slow' so that when methylation ramps up after 6-8 weeks, the sudden detox doesn't make you sick; and getting a bottle of slow-release niacin to take if overmethylation occurs. I'm very grateful for both of those tips. Fortunately I don't have to worry about taking prescription meds as well, and as far as the testing goes, I'm going to hope for now that I will get on OK without it as it would cost £££.

    By the way, I don't suppose you could tell me how to tag someone in a post, could you?
     
  6. Mary

    Mary Senior Member

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    I started Freddd's protocol about 5-1/2 years ago. I had already been taking 5000 mg. of MB12 for several years because my levels were undetectable on hair analysis. A few days after starting methylfolate, my energy picked up noticeably - it was great, and then a few days later hit a brick wall - low potassium. And I would say yes, I think I need to keep up the low potassium indefinitely, probably until a solution is found for CFS. As I said in post above, I had had symptoms of low potassium prior to starting Freddd's protocol, only I didn't know what it was. Since regularly taking a potassium supplement, I have not experienced that particular horrible fatigue (though I still crash). There's something wrong with the way my body utilizes potassium - this is very common with CFS - and taking the supplement is extremely helpful. And it's cheap. Ideally I would get enough potassium in food but it can be hard to do and many foods high in potassium are also high in sugar. So this works for me. Several on this board take more than I do. I'm not recommending you take 1000 mg. a day - you'd have to find out what works best for you.

    Starting "low and slow" is the best advice. And definitely keep an eye on potassium. If I had not been aware that it could be a problem, I would have had to stop the methylfolate because I felt so awful.

    And to tag someone, type the @ sign immediately before their user name, like this @Kitsune - :)
     
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  7. Tammy

    Tammy Senior Member

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    @Kitsune................Do you know for sure if you need a methylfolate supplement? When I first thought about working on methylation I didn't have any testing for MTHFR so I was just going to follow what most others were doing. My new GP mentioned testing MTHFR ( I was shocked that she even knew what it was)..............anyway turns out I don't need methylfolate which is one less supplement I have to second guess.

    Also...........just wanted to mention that when I began b12........it made me sleepy.
     
  8. Johnmac

    Johnmac Senior Member

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    Agree with all the advice above. My 2c worth is that I needed to remember to increase dosage, especially of folate, as folate creates (paradoxical) folate deficiency, and staying on the same dosage keeps you in that deficiency.

    As soon as old symptoms began to reappear, I upped the folate, & they went away.
     
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  9. Kitsune

    Kitsune Senior Member

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    @Mary,

    I hope I get a similar result when I start the methylfolate. I've never taken it before. Good on you for figuring out your potassium deficiency. This whole business can take a lot of detective work, and sometimes sheer luck. In my case, what I experienced the other day was, in hindsight, a side effect of taking too much olive leaf extract, rather than a need for potassium. But I did find out what a definite potassium deficiency is like for me fairly recently; for months I would get diarrhoea (yes, I know, yuck, but I guess it's OK mention these kinds of things here) every morning about half an hour after breakfast, like clockwork, no matter what I ate. I don't know why. But I started taking psyllium husk after dinner and it seemed to break some kind of vicious cycle (I don't need to take it now and I'm still OK). However, I really felt fatigued and just generally awful, until I was browsing here one day and noticed a new post about potassium. I suddenly remembered about electrolytes, which can be thrown out of balance with the particular problem I had, and a few days of potassium supplementation really helped. I just wish there was some easy way to discover these things when they begin, but at least I realised eventually. It's something that crept up on me over time.

    By the way, the cheapest potassium I have found here is about £6 for a bottle of 60 200mg tablets. I don't suppose you've found anything cheaper?
     
  10. Kitsune

    Kitsune Senior Member

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    From what I understand, people with CFS - particularly those of us who have been ill for some time - are prone to methylation problems, regardless of whether or not we have mutations. Various things (nutritional deficiencies, pathogens, stress, etc) can cause blockages that interfere with the entire process - one of the experts here compared it to traffic leading up to a roundabout, which has knock-on effects on vehicles in every direction. I don't honestly know if a methylation protocol will help me, but I doubt it will hurt me as long as I do it properly, and it looks like it could potentially be very beneficial. I'm hoping it will give me more energy and enable me to take some supplements that I currently struggle with, even though it's likely they would help me, or they are things I used to be able to take in the past without any trouble. Since I found I was already taking many of the co-factors listed by Freddd, and had started a meB12 suppement, I thought why not follow through and do this properly. There seems to be good support here if I get into trouble.
     
  11. Kitsune

    Kitsune Senior Member

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    This is something that has me a bit worried - how often to increase the dose, and by how much? I suppose symptoms should be a guide, but I'm not sure what to look out for. Some people have listed physical things like acne, which has never been a problem for me personally, though I guess it could emerge as one. Can I ask what symptoms you yourself get that point you toward a folate deficiency?
     
  12. Mary

    Mary Senior Member

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    @Kitsune - you are so right - detective work with sheer luck thrown in (if we're lucky)! I'm always trying to figure out a particular symptom - good on you for figuring out your reaction to olive leaf extract. And yes, I've had similar problems with losing potassium due to digestive problems ---- on top of a continual need for lots of potassium in general.

    My potassium is cheaper, but I'm in the U.S. so I don't know how much it would be for you with international shipping. Here's one link: http://www.iherb.com/Now-Foods-Potassium-Gluconate-99-mg-250-Tablets/764

    Another good source of potassium is low-sodium V8 juice - I don't know if they have it where you are, it's basically tomato juice with other vegetables thrown in - one glass has 900 mg. of potassium, so I often drink that in addition to my regular potassium supplement. Plain tomato juice has around 550 mg., so that's still pretty good. I have to be very careful about sugar since I'm so d**m sedentary, cannot exercise, so I avoid bananas and sweet potatoes, things like that which are high in potassium.

    Good luck with everything and keep us posted how it goes!
     
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  13. Kitsune

    Kitsune Senior Member

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    Hi @Mary, thanks for that info. It looks like the potassium I mentioned is not too much more expensive than that. I've also been wondering about having a banana a day, say after a meal, though I get what you're saying about sugar. I have to be very careful of that kind of thing too, but I can always try; a banana isn't going to hurt me, and if I get sugar cravings, I'll know it's not a good idea.

    I'm sure I'll be posting as I go along; just hoping I'll be educated enough not to do anything seriously wrong. Thanks for your help.
     
  14. Kitsune

    Kitsune Senior Member

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    Just a few more questions about starting the protocol - if anyone can help, it would be much appreciated.

    Potassium - is this something most people find they need to supplement all the time at some level, or just during periods when the body has a sudden demand for more?

    adB12 - I'm confused by all the differing guidelines on the forum. Are you meant to take it once a day, once every few days, once a week? And in what ratio to meB12? 1:3? 1:1? Or do you just try different things and find your own way?

    Any tips for recognising when you've arrived at a dose of a supplement that is optimal for you (say, 15mg of meB12)? How long is it advisable to stay on that maximum dose? And how do you know how much to then decrease until you're at a long-term maintenance level?
     
  15. Mary

    Mary Senior Member

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    @Kitsune - You'd probably be fine with a banana a day. It is good to eat foods high in potassium. I just need so much more potassium than a banana can give me, I found V8 is a good source with low calories and low sugar. If I could exercise a little, I wouldn't have to be so d**m careful about everything I put in my mouth!

    I wouldn't worry about doing something "seriously wrong" - seriously! For me, the biggest issue was potassium and because I knew about it, I could handle it. There are other potential issues, but if you go slow, you'll see how you do as you go and can tweak things accordingly. And when you have questions, come to the board --
     
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  16. Johnmac

    Johnmac Senior Member

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    Good questions @Kitsune. I asked them too, & the replies were various. Now I've finally found what works for me.

    In Fred's description of the symptoms of paradoxical folate deficiency (PFD), "return of old symptoms" is at the top of the list.

    My leading symptom was chronic fatigue. So when that returns, I ramp up the dosage, and it goes. I never had PFD long enough to get any other symptoms.

    My other roadblocks were potassium deficiency (I learned to just take K twice every day - tho the amount will apparently have to increase as increasing doses of the other supps increase K demand); and a bad reaction to LCF. At Fred's suggestion I switched to liquid carnitine, which I can start in much lower doses, and titrate up more easily because it's liquid (cutting pills into microdoses accurately being impossible).

    Not too many people get LCF reactions; but many get K deficiency.

    I have ramped up three times so far, at intervals of about 3 weeks. I haven't had any start-up side-effects of note. Energy is tons better, as are gut, cognition & mood. I have cut my adrenal & thyroid meds (HC, DHEA, T3) by two-thirds so far, since beginning the Freddd Protocol again on Aug 19. I started with 800 mcg m-folate & 5,000 mcg mB12, 3 times a day.

     
    Last edited: Oct 27, 2015
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  17. whodathunkit

    whodathunkit Senior Member

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    I've found this to be the best course of action. It's a little intimidating at first, but if you get used to and comfortable with listening to your body it gets easier.

    When you ramp up or ramp down is an individual thing. I did ramped up pretty quickly, and had good luck with it. But I had to stay at the large doses (5mg injections mB12 and 40mg methylfolate per day) for months to become stable enough to ramp down. I knew I was not ready to ramp down when I tried to do so and developed deficiency symptoms. Ramping back up clears the symptoms again.

    Freddd says he likes doing adB12 once per week and taking his big dose all in one day, but I've found that I like it better a little (10,000mcg) every day (skipping a couple days per week), or every other day. I usually take about 50,000mcg/week, but spread out the dose instead of doing it all in one day.

    mB12 I must have daily. I do injections but they're not necessary. I do them because I can get them easily and they work very well for me.

    Potassium deficiency seems to be the worst side effect of doing these supps specifically to target methylation. The tolerability of side effects varies from person to person, and often controls how you increase or titrate doses.

    When you start to feel better and remain relatively stable with that feeling for a reasonable period of time. That is, you don't develop deficiency symptoms for a while on that dose. Deficiency symptoms are an individual thing. Over time mine turned out to be anxiety, some tiredness, and a general feeling of being more out of sorts than when I am on an ideal dose. In the beginning, though, I had a bunch of deficiency symptoms: potassium deficiency, insomnia, runny nose/cold/flu, lots of stuff on Freddd's symptoms lists.

    You can also use other people's dosage guidelines as a framework. For example, I still do about 50,000mcg adB12 per week. I don't know how much I actually need (might be less), but I'm not willing to deplete myself to see what my adB12 threshold is for manifesting adverse symptoms. That's Freddd's dose, and it works for me so I stick with it since he's my guru. ;)

    Recently I did discover my threshold for mB12, however inadvertently. Many of us seem to have to go high dose with most of these supps for a while, and then can step down the dose as we become healthier. This was the case with me. Lower doses are better economically, plus who really enjoys having to take all this crap every day? We do because it helps us, but most everyone would prefer to get by without it. So when I could, I stepped down my dose of mB12 and methylfolate for a while.

    But then I stepped down too much, got a little careless with dosing, and began developing minor deficiency symptoms. Symptoms went away within a few days of upping the dosage of both again. So now I know I need daily mB12 and for now, at least a fairly large daily dose of methylfolate. I think the fasting and some other strategies I've been trying may be driving the need for both. After I get stable with my weight I will try to step down doses again, try to find my "lowest ideal dose" that keeps me financially and physiologically stable and healthy.

    HTH. :)
     
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  18. Kitsune

    Kitsune Senior Member

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    Although actually, we are apparently supposed to keep the potassium separate from folate and B12, so as I take those in the morning, maybe I should dispense with the banana? I think there may have to be some leeway somewhere. I also discovered my multivitamin has glutathione in it, but it's a very good vitamin and I'm hoping that won't cause a problem.

    By the way, I went from 1,000mcg to 2,000mcg meB12 today and found I needed 400mg of potassium this afternoon; particularly after doing some mild unavoidable exercise (i.e. cleaning the kitchen) I was getting symptoms that the potassium cleared up. I'd better make sure I always keep some handy if this is going to be happening - or at least a banana :)
     
  19. Kitsune

    Kitsune Senior Member

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    @Johnmac, thanks for the info, particularly regarding liquid carnitine. Sounds like you've come a long way in just over two months. No major negative reactions to working at that pace?
     
  20. Kitsune

    Kitsune Senior Member

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    @whodathunkit, thanks - you've been incredibly helpful across lots of threads. It's good to know that I'll be able to come back to this thread and re-read the info and advice here when I feel I need to. I'm sure there's a lot of good info on the existing B12 threads, which I've dipped into, but some of them are so enormous that there's no way I could read them straight through and take much in; it would be information overload. I use the forum's search engine for specific things, but being able to ask questions about things pertinent to me in a thread like this is very useful.

    I think I've got good over the years at listening to my symptoms and feel fairly confident about that, though it might be a bit tricky to pinpoint what I might be deficient in when I start to feel worse and there are several things to choose from (potassium, folate, B12, etc). But I feel I have the courage now to do this. It would be nice if I could just get to a point, fairly early on, where the body clock dysregulation goes away, since apparently B12 helps with that. Interestingly, it's been one of my most troublesome symptoms, off and on, since I first became ill. I spent a small fortune on SAD lamps to try to address it, and sat for hours in front of them (even wore a visor), all for naught. So compared to that, paying for and taking all these supplements every day maybe isn't so bad :)
     
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