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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Are LCF dose and potassium demand related?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by PatJ, Sep 10, 2015.

  1. PatJ

    PatJ far and free I gaze

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    For those who are on Freddd's treatment, when taking L-Carnitine Fumarate and requiring extra potassium, have you noticed if the potassium required increases with a higher LCF dose?
     
  2. Johnmac

    Johnmac Senior Member

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    Good question (tho I don't know the answer).

    This description of the Freddd Protocol says K deficiency comes from 'healing'.
     
  3. SJB944

    SJB944 Senior Member

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    I found that initially after introducing L-Carntine (Freefrom base liquid) that the need for potassium definitely increased, and I think was dose proportional -- but I titrated up from very tiny amounts.
     
  4. PatJ

    PatJ far and free I gaze

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    I was on Freddd's B12 treatment from October 2014 to June 2015. I took 855mg of LCF in a split dose to avoid anxiety. At this dose I needed around 3.6-4 grams (elemental amount) of potassium powder per day. This amount didn't change in the entire 9 months.

    As a side note: I found that there is a difference for me between taking potassium powder vs. tablets. At one point I ran out the powder and had to rely on tablets, but it took 30% more to have the same effect as the powder (based on elemental amount of potassium.)

    In June I stopped the treatment because I had a massive, and apparently permanent, OI increase that has left me bed-bound for much of each day. I don't know if it had anything to do with Freddd's treatment but I stopped it just in case. When the OI increase hit I wasn't able to get to the potassium for many hours and had hypokalemia symptoms like severe nausea and lower body muscle convulsions (not just twitching). I'm now more wary about having to rely on such high inputs of potassium. I don't know what would have happened if I had been incapacitated for a longer period of time and had gone into severe hypokalemia.

    The high potassium demand may be associated with healing but I think it's also a sign of something far out of balance.

    I'd like to be able to take LCF again but want to minimize the reliance on potassium if possible. The potassium demand is also linked with using methylb12. If I try again I may use hydroxycobalamin and low dose LCF to see what happens.
     
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  5. Johnmac

    Johnmac Senior Member

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    I'm on the liquid too @PatJ . (I had big anxiety problems with LCF.)

    What dose are you on now?

    How long did it take to get there?

    Any effects that you can specifically put down to the carnitine?

    Any tips generally?
     
  6. PatJ

    PatJ far and free I gaze

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    When I was taking a full 855mg capsule of LCF per day I had to take 3.5-4g of potassium powder per day. A few weeks ago I tried a small amount of LCF powder again for a few days. I took maybe 1/10 of a 855mg capsule per day. Potassium demand kicked in within two days. I had to take an extra 1.5 grams per day, on top of the approximately 750mg that I take daily with an electrolyte mix. Even though I stopped taking the LCF after a few days, 3 weeks ago, I'm still having to take extra potassium (down from 1.5g to 1g now). The demand takes a long time to wear off.

    I don't think the potassium demand is linear based on LCF dose. For me, a little LCF can kick off a large demand for potassium.

    The demand is related to methylB12 as well. I tried HydroxyB12 for a week and didn't notice an extra need for potassium. Then I took methylB12 and suddenly the potassium need increased, even though I hadn't taken any LCF for 1-2 weeks.
     
  7. Irwin

    Irwin

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    I also feel this. My K demand skyrocket using methyl b12.
    Do you feel the same benefits using HydroxyB12?
     
  8. PatJ

    PatJ far and free I gaze

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    No. I don't notice anything from HydroxyB12. I feel generally better with methylB12, including more stable emotionally.
     
  9. PatJ

    PatJ far and free I gaze

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    @Johnmac, were these questions for me, or for SJB944 who you quoted in your message?
     
  10. Johnmac

    Johnmac Senior Member

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    For you Pat, if you don't mind. Tho I guess the first question doesn't apply now.
     
  11. PatJ

    PatJ far and free I gaze

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    I don't mind at all, I just wanted to make sure I wasn't answering a question aimed at SJB944.

    What dose are you on now?
    I'm avoiding LCF again for the moment while I wait for the potassium demand to fade.

    Otherwise each day I still take the following supplements from the treatment:
    * 1mg B12 Infusion
    * 800mcg Solgar Metafolin
    * A mix of Source Naturals coenzymated B vitamins
    * Potassium (amount varies at the moment while the LCF induced demand fades)
    * 25mg Zinc picolinate

    I also take Dibencozide every few days. The amount varies because the little Dibencoplex pills don't split evenly.

    How long did it take to get there?
    I'll answer this one according to how it used to be when I was fully doing Freddd's treatment.

    Daily, I used to take:
    * 5-8mg B12
    Sometimes I would try up to 40mg in a day to see if I noticed anything new. Other than a little over-stimulation I didn't notice any benefits, but I rarely took such a high dose for more than a couple of days. I started with 1mg and went up from there over a few weeks.

    Now I just take 1mg B12 per day.

    * 8-24mg of Solgar Metafolin
    I varied the amount a lot over the months because I was learning how various deficiencies felt. I took Freddd's advice to increase the folate when folate deficiency symptoms arose. It took a couple of weeks to get up to around 12mg per day. Then I increased or decreased at various times based on need.

    I started with 400mcg Metafolin on one day, then 400mcg x 2 the next, then worked my up based on symptoms.

    Now I take 800mcg Metafolin per day and haven't noticed any folate deficiency symptoms. (Maybe they would arise again if I resumed the lCF.)

    Any effects that you can specifically put down to the carnitine?

    Potassium demand: no doubts about this effect.

    Physical energy: noticible improvement (still miles away from normal, but it was a nice boost). Maybe mental energy but I'm not sure if it's from the LCF, or another supplement, or a combination. I still have the mental energy even though I've stopped the LCF but maybe it's being maintained by the other supplements, or maybe it represents healing from the treatment.

    Insomnia: if I took it too late in the day.

    Anxiety: I started very low with the LCF because I was wary of Freddd's comment that some people started with a high dose and had a severe anxiety reaction that lasted for days. I started with a tiny amount, then worked up by taking a little more twice each day. After about a week and half I was up to half a capsule. Eventually I found that 1/2 cap was the limit for a single dose before anxiety would become a problem so I took 1/2 cap in the early AM, and another 1/2 just after lunch.

    I had some mild-moderate anxiety for the first couple of weeks but it faded unless I took more than 1/2 cap at once.

    Weight gain: roughly six pounds. See B12 comment below about why this was a good thing. I'm certain it's related to the LCF because I have now lost six to ten pounds since I stopped taking it.

    Improved cold tolerance: after a few months I wasn't cold all the time and could stand cold outdoor temperatures much better than before. Now that I've stopped taking LCF I'm not as cold tolerant.

    Hypersexual response: after roughly four months my libido kicked in like crazy. I'm working on another post related to this effect to see if anyone else has had this response. It might have been an interaction with a medication I was taking.

    Improvements noticed from other supplements

    I'll add the other improvements I noticed in case it may help you in some way:

    B12 - better vision, brighter colors, mild better mood, weight gain (nine pounds! From 112 lbs to 124 lbs in six weeks. This was a good thing since I'm male and 5'10" tall. I'm in the subset of CFS patients that usually can't gain weight. I know it was the B12 because I hadn't started the other supplements or diet changes.

    Folate - Improved mood. My old personality started to resurface somewhat, along with my sense of humor. Both had been hidden in fog for many years. This effect was wonderful and unexpected.

    Improvements noticed overall

    More relaxed, greatly reduced wired but tired feeling, improved sleep (still dismal and unrefreshing, but better), improved ability to comprehend what I read. Far better mental energy after roughly four months on the treatment. Can now think better and type long posts like this in a reasonable amount of time.

    Any tips generally?

    Always have enough potassium available. Enough, meaning an amount to keep you going for several weeks (minimum) at your current demand. After running out of potassium gluconate powder and having to rely on pills (lots of 99mg pills, 35 of them to get 3.5 grams per day) I learned a good lesson and started keeping a several month supply of the powder on hand.

    Always keep some potassium with you for emergencies if you are outside your residence.

    I've found that if I put some potassium gluconate powder on my tongue and it tastes sweet, then I need more potassium.

    I had to become skilled at knowing which supplement treated which symptom. This can be difficult when brainfog interferes with understanding. I would sometimes have severe colon pain just before a bowel movement. I thought it was related to folate deficiency but after a few months I realized it was due to low potassium (paralyzed illium on Fredd's list of hypokalemia symptoms.)

    My symptoms changed over time. I had to adapt and learn what supplement helped to resolve each new or changed symptom.

    I've found that if I don't take methylB12 each day I feel a very specific sense of loss. I might be looking out of a window at a nice view, turn away, and feel a sense of loss. I might look at a PR member's avatar and see that they haven't been around for a couple of years and feel a sense of loss. I'd like to know what causes such a specific emotional response. It's interesting that this effect is even possible. Brains and minds are subtle and curious.
     
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  12. PatJ

    PatJ far and free I gaze

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    @Johnmac Tagging you just in case you aren't automatically watching this thread. I'm not sure if you know about my last reply to your questions.
     
  13. Kathevans

    Kathevans Senior Member

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    @PatJ Thanks for the lengthy post above with your responses and requirments vis a vis the supps in Freddd's protocol. I haven't tried LCF yet, but have been on the protocol a little over two months and have reached the point where I've been thinking of adding it. Individual reactions are always unique, but knowing someone else's, particularly if it's extreme, as yours seems to be for the high potassium in reaction to the LCF, is good to know. I'm not sure I could tolerate that much potassium. Right now, as I take 1.25 mg of MeB12 and 500mcg Folate, I only require about 550-750 mg of k/day in three divided doses--morning, afternoon and evening. It seems even at these doses, to make my throat phlegmy, not so different from dairy.

    One thing I do know is that I haven't reached my folate sufficiency--so maybe I should just worry about taking care of the MeB12 and Folate before moving on to something else. My body's thirst is very obvious, but if I increase too fast, the first thing to be [more] disturbed is my sleep.

    Who knows...
     
    Last edited: Oct 16, 2015
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  14. PatJ

    PatJ far and free I gaze

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    I think my potassium demand reaction to the LCF is fairly typical. I did a lot of research before starting the treatment and found that in Freddd's experience, many people needed up to 4 grams per day. Anyone needing more than that was probably taking doses of B1,2,3 that exceeded 20mg per day which drives potassium demand even higher.

    I haven't had a phlegmy throat from potassium but I take cardamom regularly because it apparently helps to reduce mucous in the body.

    Did you mean 1.25mg of methylB12? If the mcg amount is correct then you may need to focus on increasing that amount before starting the LCF. Taking B12 and folate early in the day may help to reduce sleep problems.
     
  15. Kathevans

    Kathevans Senior Member

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    I did, indeed mean what certainly appears to be the still somewhat meagre amount of 1.25mg MeB12 (I'll correct that!). And no doubt you're right as to sleep issues. I've struggled with napping through the night for way too long and already I see slightly better sleep, at least on occasion, when I bump up my levels. I am one of those people who needs to increase very slowly.

    I've been careful to keep my levels of the lower Bs very low...at the moment only about 10 mg of the active forms in 1/2 Seeking Health's B-Minus (no methyl donors)/ day. I'd like to get that up to the whole, but am even putting that off. For the moment, the only one I'm taking at higher doses is B6, which I have at about 34 mg/day in 2 doses. This seems to be called for with oxalate issues as well as sleep levels and dreaming, which I now do on occasion.

    I think you're right as to the LCF. I'm going to wait. Meanwhile, I've gotten a type of choline that is supposed to help my PEMT and BHMT (along with some zinc) to work more efficiently. And I wanted to start that sometime this week...

    Thanks.
     
    Last edited: Oct 16, 2015
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  16. SJB944

    SJB944 Senior Member

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    I've currently just stopped taking after being on it about 2 years to see what it is doing. Built up to 3 teaspoons morning and 2 teaspoons afternoon.

    I started with Fred's suggestion and diluted the Jarrows Formulas liquid -- one drop into 30 of water and took one drop a day. I then slowly increased by doubling after symptoms settled down. Then over the course of about 8 months, increased each few days by 20%. Stayed at that level until felt comfortable and then slowly increased.

    Slow is good, I found.

    The real benefit for me was being able to walk further than the letter box for the first time in 15 years. (I'd been on adb12, mb12 and folate for quite some time.)
     
    Last edited: Oct 19, 2015
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  17. Johnmac

    Johnmac Senior Member

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    Pat, thanks so much & apologies for such a slow reply. Thanks for taking the time to answer my questions & provide such a nice case history. I live in chaotic Cambodia (regular outages of everything), plus I have CFS, so it sometimes takes a while to get things done.

    I am heartened by your top dose being 5-8mg of B12. The 8-24 mg of folate is less heartening. (-: (I’m hoping to avoid going into big expenditures. And all that pill-popping is a nuisance in itself.)

    I’ve been increasing my B12 & folate every 2 weeks or more (which seems to work), so your rate of increase was much faster than mine.

    Thanks for clarifying the K demand from LCF. I shall keep an eye on that, as I am steadily increasing my carnitine.

    I also got anxiety when the carnitine went too high.

    The weight gain is interesting. I think I notice better musculature. In the past I have also gained weight from the FP, tho with all the crashes in my first attempts it was hard to really keep track of what was doing what. (I’m also male & 5’ 10”.)

    I’ve also noticed the better libido & cold tolerance: both very welcome.

    Thanks for the tip on potassium. I’m on 7 mg B12/day & 5.2 mg folate/day, & have never had a severe K deficiency. Relatively minor ones are signalled by heart palps, which vanish as soon as I take K.

    The emotional response from missing your B12 doses is interesting. I’ve had similarly idiosyncratic things as well.

    And the effects of the DQ on symptoms varying over time is also something I’ve experienced.

    I guess you are still pretty much on the FP - except for the LCF?

    But your intensive ramping-up-then-gradually-lowering-doses phase lasted 9 months?

    Thanks again for your detail.
     
  18. PatJ

    PatJ far and free I gaze

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    You're welcome. No problem about a slow reply. CFS is often a kind of internal chaos with outages of energy and cognition, so I understand the internal side of it. I'm fortunate to live somewhere that has very consistent power, internet, and food access.

    That 24mg/day amount was quite expensive. It's near the top end of what some people need so you probably won't need to go that high. The B12 added up as well since it was 1 bottle of Enzymatic Therapy B12 almost every 3 days for awhile. I think @ahmo has found that she can reduce her methylfolate requirement by placing the tablet in her upper gum line, the way that Freddd recommends doing with B12.

    Something I forgot to mention in my post was that I also noticed a resumption of nocturnal penile tumescence (sleep erections.) I think they are an indicator of sexual health.

    I also forgot to mention that I started needing to stretch my muscles. Before the treatment I never felt the need to stretch. After roughly a month that need returned and felt good when I stretched. Now that I've stopped the LCF I rarely feel the urge to stretch.

    Basically, although I haven't been able to tolerate some of the other recommended supplements. Vitamin E gave me bloody stool, Vitamin A and D, and ALA make my symptoms worse, especially fatigue.

    I think the initial ramping up covered 1-2 months as I went through what Freddd calls 'startup'. When low folate symptoms hit I increased my dose. Then I went higher with the folate for 4-5 months before lowering it and coasting along daily at roughly:
    * 5mg Mb12 (Enzymatic therapy)
    * 12mg Methylfolate (Solgar)
    * 5-10mg Dibencoplex (I've never really noticed any difference from varying the dose of the Anabol Dibencoplex.)
    * 855mg LCF (split dose) (Drs. Best with Sigma Tau LCF)
    * 3.5mg potassium gluconate powder (Now brand)

    The total period was 9 months.
     
  19. Johnmac

    Johnmac Senior Member

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    Thanks again @PatJ .

    Would the ALA making your symptoms worse (assuming you weren't using the Cutler-style constant doses) be because it was redistributing mercury?

    I'm glad the libido's been improved: I noticed that too, & Fred has written a fair bit about that improvement.

    I found a Freddd piece recently where he said that going to 30-40mg folate won't be necessary for most people. Which was comforting. (I'm presently on 6mg/day.)

    9 months sounds bearable. Are those doses at the end the doses you are on now? Or lower?

    Thanks once again!
     
  20. PatJ

    PatJ far and free I gaze

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    I doubt it but can't be positive. I only tried a couple of capsules (R-ALA). It was mainly extra fatigue and general "blah" feeling. I've had the same effect with other supplements.

    I was glad at first as well but then it improved too much. I was so distracted with sexual thoughts much of the time. It might have improved too much because I was on a medication (dimenhydrinate) that has a norepinephrine reuptake inhibition effect. Apparently excessive norepinephrine can cause hypersexuality. I've since stopped taking dimenhydrinate (after 24 years of use) so maybe I'll try LCF again at some point to see if the libido effect is reduced.

    I'm planning to take LDN, which is known for increasing libido, so it will be interesting to see if I have a similar excessive response. Due to being focused on a spiritual path, and not having a partner, I'd rather have a normal or even below normal libido so it would be nice to find a way of reducing the effect if it happens with LDN.

    Requiring 25-40mg may be a sign that something weird is going on and driving the folate need higher than it should be. I think Freddd would say that folic or folinic acid could be blocking the uptake of methylfolate.

    I only stopped because of my sudden OI increase, paranoia about needing so much potassium, and contemplating the danger of what could happen without the potassium if I ended up unconscious or unable to communicate for a day or more.

    The doses at the end are the doses that I was at for the last 3-4 months before stopping. Now I take 1mg MB12, 800mcg Metafolin, 5mg dibencoplex, roughly 750mg potassium, low dose sublingual B vitamins, no LCF.
     

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