3 weeks into Fredd's protocol - is this normal?

[bishbosh]

Hi all
I started Fredds protocol at the end of April, but wasn't aware of the folic acid issues so I switched to the non-folic acid varieties of folate & adb12 only 3 weeks ago. I had very few side effects/symptoms while taking folic acid; since switching, the side effects/symptoms have been unpleasant.

I immediately noticed a difference between the Metafolin and Actifolate; I started using the same quantity of Metafolin as Actifolate and it knocked me flat. Metafolin is far more potent for me. Is it a good sign that the Metafolin knocked me flat?

The last 3 weeks have been very rough. I've cut my doses of mb12 and metafolin way back but I'm exhausted all the time. I'm using the Jarrow mb12, Source Naturals adb12 and also using all the co-factors outlined in Fredds revised protocol post including potassium.

So far;
- more headaches and migraines which are unrelieved by even strong NSAIDs.
- very poor energy, needing to rest a lot.
- my skin sometimes feels like its crawling.
- skin; dry and lots of boils/breakouts.
- temperature fluctuations; sometimes I'm frozen solid no matter how many layers I wear; other times I'm too warm
- sweating (unusual for me)
- an odd echoing sensation in my head

The migraines and headaches seem to respond to SAM-e (800mg). Can someone tell me what that means - I'm not sure how to interpret it?

I guess I'm just wondering if I'm on the right track here.

In my years with CFS, I have tried a lot of treatments. Some of them made me feel very ill from day 1, yet I stuck with them because I thought it was just a detox period.

However, they caused lasting damaging effects from which I never recovered so now I'm very wary of treatments which make me feel bad from the outset.

A lot of people seem to report improved energy in the early stages; this has not happened for me - just the opposite in fact. So far its all been unpleasant and exhausting. I'm willing to stick it out if there are going to be benefits, but it'd be nice to know that I wasn't doing myself further harm.

How long can I expect the unpleasantness to last? How long before I should be re-assessing whether I'm doing the right thing?

thanks

 

[LaurieL]

Bishbosh,

The country life ad b12 has folic acid in it. Source Naturals Dibencozide does not and seems to be quite comparable.

So it would seem if you are taking the country life, you are still then getting folic acid.

The headaches are a positive rxn in that it tells you, you do indeed have a deficiency in either the active b's or the folate. But it is difficult to tell which or both, since you are doing all three. Did you start them all at once? Once you get those headaches, that should be your upper limit and back down a little so the headaches don't become so severe that you cannot function. Stay at a dose high enough to initiate some rxn but low enough to allow your body to come online as well as function. Then increase from there. It sounds as if you are doing to much all at the same time. Doing them all at the same time, makes it difficult for you to associate what symptoms with what you are taking as well.

Some of your symptoms you listed above is also what I experienced. Any drooling when you sleep? Some of those sound like neurotransmitter issues quite similar to what I have been going through, some of which I still am.

Laurie

 

[Mary]

bishbosh - I'm wondering if you might need more potassium. I initially had better energy for several days on Freddd's protocol, but that soon gave way to very heavy fatigue for a couple of days, until I figured out I needed more potassium. I did not do well with the Actifolate.

Here's a link to more symptoms of low potassium (including dry skin and headaches):
http://www.nutritional-supplement-educational-centre.com/symptoms-of-low-potassium.html

I think it's possible the Metafolin hit you so hard because it started working so well, which could cause a sudden increase in the need for potassium. And if you are still low in potassium, you will continue to be extra tired.

I totally empathize with your concerns and hopefully Freddd will weigh in on this issue.

Mary

 

[bishbosh]

Thank you both for your advice. I'm currently taking 6 x 99mg potassium daily (split into 3 doses). Do you think I need more than that?

I'm hoping that the reason Metafolin knocked me flat is just what you said Mary, that its a sign its working for me. Its hard to know though. Thanks for the potassium link; its the best link I've seen so far.

Laurie, sorry, I wasn't very clear earlier. I started out with COuntry Life adb12 but switched to Source Naturals 3 weeks ago; I've checked and none of my supplements contain folic acid, NAC or glutathione.

However, I take your point that maybe I've done too much too soon; I think you're spot on. I thought you were supposed to start them all at the same time so I started them all on low doses. I have a feeling its the Metafolin; when I switched to it from Actifolate, I started on the same dose I'd been taking of Actifolate and it was THAT which knocked me flat, so I think Metafolin is the culprit.

I can deal with all that as long as I'm sure that its a sign of healing. After years of being unwell, I'll put up with anything that will result in better health. Its just that in the past when I've "stuck it out because it's a sign it's working", I've ended up doing damage that I never recovered from. I just want to be sure I'm not heading down the same path again - once bitten twice shy etc. It would be nice to have some reassurance that I cannot harm myself following the revised protocol.

Thanks so much for your help.
BB

 

[dannybex]

The active forms may be too strong for you to tolerate, as they were for me and many others -- especially the folates.

I don't know the answer, but we're all different, and if you found benefit w/the earlier version, perhaps that's what's best for you. Or start with tiny, tiny, tiny doses...

???

 

[determined]

I experienced many of these symptoms, but they were very manageable. My starting doses were so small I almost didn't believe it could be possible that 1) I had so much more energy - in fact, my CFS-type fatigue was almost gone and 2) that after the initial period of just feeling better, my tiny doses could cause so many symptoms.

I had the exhaustion (different from my normal CFS fatigue) but it felt like a normal person kind of exhaustion - like I needed a nap, for example. I had headaches, increases sinus pressure, a migraine headache (which I haven't had for a very long time prior to this) and an increase in chemical sensitivity.

I don't really see a down side to starting very very slowly on this. Keep the symptoms at a level you can tolerate. I think it's clear we can ALWAYS get much, much worse with any kind of detox. Be careful; perhaps decreasing your dose will minimize the symptoms, but it may take a while. It took a good month for me to feel the increased energy again, minus the supposed detox symptoms.

 

[Mary]

bishbosh - It's funny, because when I did Richvank's methylation protocol, it immediately made me tired and sick but I stuck it out for 3-1/2 years, off and on, thinking I was detoxing all that time. And then when I switched to Freddd's protocol, voila! suddenly no bad side effects (apart from a need for more potassium) and I felt better. But it seems to be doing the opposite with you. It could be you need more potassium, it could be you're doing too much all at once, it could be that for some reason the metafolin is not good for you. It is so hard to say.

It is important to listen to your body so I would follow dannybex's advice, try smaller doses.

One question: what brand of Metafolin are you taking? Is it Solgar or Folapro or something else?

 

[kurt]

bishbosh - what type of magnesium are you taking? These B12/methylation protocols can force metabolic processes, and if we are not supporting those processes well enough can be depleting. I mention magnesium because that is important for many of the reactions to work right.

What I would do in your shoes is set up an 'elimination' type of trial starting with tiny doses to find out exactly which supplement 'changes the game' for you in a negative way. Sometimes it is the wrong supplement, other times it is the wrong dose. When you force metabolic processes dose is everything. Then at times you are missing some precursor. The critical ones in my experience are magnesium (I use only the mag chloride form), vitamin C (required in methylation), B6 (the less active form, not 5p5 which overdrives my system), and multiple b12 forms (including mB12, aB12 and hB12, optionally even some cB12).

Also, how well are you hydrating? Are you taking electrolytes? Starting up the methylation and NO cycles (Fred's protocol supports NO more in accordance with Pall's protocol than Rich's) is going to be a bad experience if you don't have enough hydration to move those toxins out.

 

[Freddd]

Hi all
I started Fredds protocol at the end of April, but wasn't aware of the folic acid issues so I switched to the non-folic acid varieties of folate & adb12 only 3 weeks ago. I had very few side effects/symptoms while taking folic acid; since switching, the side effects/symptoms have been unpleasant.

I immediately noticed a difference between the Metafolin and Actifolate; I started using the same quantity of Metafolin as Actifolate and it knocked me flat. Metafolin is far more potent for me. Is it a good sign that the Metafolin knocked me flat?

The last 3 weeks have been very rough. I've cut my doses of mb12 and metafolin way back but I'm exhausted all the time. I'm using the Jarrow mb12, Source Naturals adb12 and also using all the co-factors outlined in Fredds revised protocol post including potassium.

So far;
- more headaches and migraines which are unrelieved by even strong NSAIDs.
- very poor energy, needing to rest a lot.
- my skin sometimes feels like its crawling.
- skin; dry and lots of boils/breakouts.
- temperature fluctuations; sometimes I'm frozen solid no matter how many layers I wear; other times I'm too warm
- sweating (unusual for me)
- an odd echoing sensation in my head

The migraines and headaches seem to respond to SAM-e (800mg). Can someone tell me what that means - I'm not sure how to interpret it?

I guess I'm just wondering if I'm on the right track here.

In my years with CFS, I have tried a lot of treatments. Some of them made me feel very ill from day 1, yet I stuck with them because I thought it was just a detox period.

However, they caused lasting damaging effects from which I never recovered so now I'm very wary of treatments which make me feel bad from the outset.

A lot of people seem to report improved energy in the early stages; this has not happened for me - just the opposite in fact. So far its all been unpleasant and exhausting. I'm willing to stick it out if there are going to be benefits, but it'd be nice to know that I wasn't doing myself further harm.

How long can I expect the unpleasantness to last? How long before I should be re-assessing whether I'm doing the right thing?

thanks

Hi Bishbosh,

The ENTIRE set of basic supplements are needed. While the answer is often POTASSIUM POTASSIUM POTASSIUM, and appears to be so here, other deficiencies can occur very rapidly as well. 600mg a day of potassium may be less than half of what you need to take. That it was triggerred when you started the Metafolin is a key indicator. Metafolin was being effective as compared to the other folates which were not. That immediately starts cell reproduction which causes plunging potassium.

 

[bishbosh]

So I think what you're all saying is good advice; I need to back way down to much lower doses. That's what I'll do. And thanks Kurt for the hydration reminder; I could stand to improve my water intake so I'll do that too. I'm using the -ate forms of magnesium; citrate, aspartate, fumarate, malate, total intake nearly 750mg daily split into 2 doses. I'm also taking Vit C - 3g daily, calcium, zinc, selenium, iodine, Omega 3, Gamma-E, carnitine fumarate, D3 5000iU and a B complex which contains no folic or B12 (Biocare B-Plex).

Most of these I was already taking before starting the Metafolin, so I think they're OK.

Mary, I'm using the Solgar Metafolin. The key from what you're all saying is tiny, minuscule doses to start with.

Fredd, thanks for interpreting the events for me. Its what I had hoped you'd say, but its really good to have you confirm it.

You've all helped point me towards a sensible approach, reduce the doses way down, try more potassium and try your idea of an elimination approach. Thank you all very much; I really appreciate the advice
BB

 

[Freddd]

So I think what you're all saying is good advice; I need to back way down to much lower doses. That's what I'll do. And thanks Kurt for the hydration reminder; I could stand to improve my water intake so I'll do that too. I'm using the -ate forms of magnesium; citrate, aspartate, fumarate, malate, total intake nearly 750mg daily split into 2 doses. I'm also taking Vit C - 3g daily, calcium, zinc, selenium, iodine, Omega 3, Gamma-E, carnitine fumarate, D3 5000iU and a B complex which contains no folic or B12 (Biocare B-Plex).

Most of these I was already taking before starting the Metafolin, so I think they're OK.

Mary, I'm using the Solgar Metafolin. The key from what you're all saying is tiny, minuscule doses to start with.

Fredd, thanks for interpreting the events for me. Its what I had hoped you'd say, but its really good to have you confirm it.

You've all helped point me towards a sensible approach, reduce the doses way down, try more potassium and try your idea of an elimination approach. Thank you all very much; I really appreciate the advice
BB

Hi BB,

I'm not sure about the "reduced doses" approach. I do want to say that I have found only 2 brands of mb12 that are "5 star" and that applied to the other 4 testers as well. On the ranking there was 100% agreement on 5 star and zero star brands and only minor disagreements on 1.5 or 1.75 stars or similar minor differences. Some other brands are totally ineffective or ineffective in some ways. Also, continuing to starve the body for methylb12, adenosylb12 and methylfolate delays healing allowing damage to continue advancing and prolonging and even intensifying startup responses. By not having Metafolin available and not taking adb12 for the first nine months, my muscles didn't start healing until after 9 months into the program. Taking only 1mg of sublingual mb12 daily stretched out the startup responses for months until I titrated up to 15-25mg daily, then the startup leveled out and disappeared in a week after several months of massive startup. It took more than a year to feel up to rehabilitation and become less fragile to "over-doing". It took 5 years to make a start on the CNS which continued to deteriorate up until then.

 

[bishbosh]

Hi Fredd
I can confirm that I'm using one of your preferred brands of mb12 (Jarrow) as per your revised protocol, thank you for mentioning it. Can I ask why you recommend both Jarrow mb12 and the Enzymatic Therapy b12 infusion?

I've decided to back off the mb12, adb12 and metafolin for a few days. Its just too much for me at the moment and I need to let things settle down and start at a lower, more manageable dose. Or rather, that is what I hope I'll find when I restart them. I'll restart mb12 in a few days at a lower dose, then introduce the other 2 within a few days, so I wont be without them for long.

When you refer to your "start up responses" are you talking about unpleasant detox-like symptoms such as I described or do you mean the improvements that you noticed in your exercise tolerance and reduction of symptoms?

I see what you're saying about making sure I'm taking enough mb12, adb12 and metafolin to make sure healing takes place, but I guess I'm trying to balance my desire for healing healing what my body can tolerate right now, and it seems my body's limits are low.

thank you again; I really appreciate you taking the time to offer your advice.

 

[Freddd]

Hi Fredd
I can confirm that I'm using one of your preferred brands of mb12 (Jarrow) as per your revised protocol, thank you for mentioning it. Can I ask why you recommend both Jarrow mb12 and the Enzymatic Therapy b12 infusion?

I've decided to back off the mb12, adb12 and metafolin for a few days. Its just too much for me at the moment and I need to let things settle down and start at a lower, more manageable dose. Or rather, that is what I hope I'll find when I restart them. I'll restart mb12 in a few days at a lower dose, then introduce the other 2 within a few days, so I wont be without them for long.

When you refer to your "start up responses" are you talking about unpleasant detox-like symptoms such as I described or do you mean the improvements that you noticed in your exercise tolerance and reduction of symptoms?

I see what you're saying about making sure I'm taking enough mb12, adb12 and metafolin to make sure healing takes place, but I guess I'm trying to balance my desire for healing healing what my body can tolerate right now, and it seems my body's limits are low.

thank you again; I really appreciate you taking the time to offer your advice.

Hi Bishbosh,

Can I ask why you recommend both Jarrow mb12 and the Enzymatic Therapy b12 infusion?

They were the two most effective brands and they are somewhat different from each other. Each one can produce differential effects over the other for some or are imperceptibly different to other people. They appear to have some fundamental differences from each other qualitatively. There are many unmarked versions of mb12 produced by various bacteria used in brewing it. These differences are entirely un-researched.

When you refer to your "start up responses" are you talking about unpleasant detox-like symptoms such as I described or do you mean the improvements that you noticed in your exercise tolerance and reduction of symptoms?


Startup responses can start within 5 minutes of putting one of the mb12 under your tongue or lip. People that have none of the b12/folate deficiency symptoms on the list have no response at all. The most common startup responses are increased feeling of energy which some respond to with anxiety. The vervous system starts working more vigorously. ALL sensory phenomina increase in intensity including pain and the feelings of a damaged nervous system. Muscles that are in an "exhausted contraction" for years, painfully so, suddenly have ATP being made in their mitochondria and the contractions are no longer exhausted. These are not to be confused with the spasms from low potassium. Most all symptoms are perveived to be more intense from this. Nerves wake up that haven't worked for years, quite unpleasantly usually. Sudden induced deficiencies pop up usually with nausea, fatigue, headaches, depression, "Mr Hyde" end of personality changes, and maybe 3 dozen more symptoms. Potassium and folate deficiencies account for perhaps 3/4 of these symptoms. However, almost any of the b-vitamins especially (water soluble) can go deficient in days. Minerals can get really out of whack very quickly. Startup symptoms from mb12 and folate fade away in a few days after discontinuance of mb12 and Metafolin. Induced deficiency symptoms stay and stay and stay, even getting worse, and go away slowly if at all. Induced potassium deficiency symptoms and induced folate deficeicny symptoms are typically called "detox" symptoms. "NAC detox reaction" is induced folate deficiency. "Glutathione detox reaction" is folate deficiency reaction. "Whey detox reaction" is induced folate deficiency and if any of these go away on their own it is generally slow. "Folate detox reaction" with folic acid, folinic acid and/or vegetable source food folate are all paradoxical folate deficiency. It appears that over 90% of people trying active b12 will have potassium deficiency symptoms well above the 3.5-4.0 that is the "low" limit. I have them at 4.2 or so. It often takes a LOT more potassium than people are inclined to take. 100-600mg on a daily basis wouldn't put a dent in mine. However, 400-600mg will raise serum level for a few hours and stop most of the low potassium symptoms within 60 minutes. That's a good test for what they are. A 4800mcg dose of Metafolin will make a noticeable change in deficiency symptoms starting within hours. However, these symptoms will return quickly if the needed amount is not maintained.

The symptoms I have included here are less than 5% of the possible symptoms people come up with from these two deficiencies. The body has adjusted to functioning, sort of, with a reduced level of b12 and folate. It tends to overshoot. Have you ever lived in a steam heated uninsulated house built in the 20s? A thermostat set to 72 degrees maintains the temperature in the 68-75 degree range with under and overshoot. It appears that the journey to "normal" goes through overshoot" with b12. If you stop it every time you have any overshoot, it never gets back to normal. It stays in starvation mode.

I just want to add that your symptoms you mentioned a few posts ago appear to match a pattern of a mix of low potassium and startup "overshoot" responses and possibly some folate deficiency.