Starting Freddd's protocol - a few questions

[Kitsune]

That might be a blood sugar drop causing an adrenalin rush. I wake up at 3-3:30 am every day because my blood sugar starts to drop at that time. I have to eat by around 4 am or I start to feel dizzy, hot, shaky, and confused. Then I need to eat roughly every two hours to keep my blood sugar up through the day. I go to bed at 7 pm to compensate for getting up so early.

Have you tried eating a small protein and fat meal just before bed to see if you sleep longer?

Ah yes, I didn't want to get too sidetracked into this here. I see where you're coming from. First of all, I just want to say I'm sorry you are suffering from these symptoms; I know it makes everything worse when you're sleep deprived.

However, in my case it's a definite shift of my body clock, versus a blood sugar issue (which I have experimented with in the past, regardless, by eating just before bed, eating when I woke up in the night, etc). When it's at its worst, I get crushingly sleepy in the evening, say at 7 or 8 pm; can't concentrate, can't do anything, just want to put toothpicks under my eyelids - because if I go to bed earlier, I just wake up even earlier in the night. At 3 or 4 am I'm wide awake, and if I do get back to sleep, it has no beneficial effect. I then feel tremendously jet-lagged the next day. The last time this happened, just before I started treating it with melatonin, I was barely able to function at work. A long time ago I invested in lots of SAD lighting equipment, even wandered around with a visor in the evenings, but it didn't help. Thank God the melatonin does, though of course it doesn't address the root cause.

Interestingly, while I was having a Google tonight, I discovered that lithium is important in regulating the biological clock (as well as B12, which I knew). More interesting still, I read that lithium enables the body to utilise folate and B12. That's something I hadn't come across yet here - though once I do a search for it (thanks for the link above), I find that it's been discussed in numerous threads. I've got some on order now; apparently 1mg or so is considered a healthy dose at the level of a micronutrient, as opposed to the comparatively huge doses used in psychiatry.

 

[PatJ]

When it's at its worst, I get crushingly sleepy in the evening

We're at different ends of a spectrum. I don't get sleepy. I lie in bed until I lose consciousness but the actual feeling of sleepiness is missing. If I get very little sleep then I'm even more tired and brain-fogged the next day but not sleepy.

I've been taking Lithium Orotate 5mg for about a month. The only improvement I've noticed is slightly improved mood. Hopefully it will work better for you. I think I've read that low vitamin-d can degrade sleep.

I take 0.5 mg melatonin to help with sleep (a larger dose didn't work as well), along with Enzymatic Therapy Sleep Formula (or herbal Nighty Night tea), and some magnesium. I plan to try time-release melatonin to see if helps me to stay asleep longer. I often wake in the night, change position, and go back to sleep. I haven't had a "sleep like the dead" sleep for more than a decade. And since I don't have a feeling of refreshment from sleep, and because each time I wake I feel almost fully alert, I have to check the clock when I wake to see if it's time to get up. I miss normal sleep. I miss normal everything.

 

[Irwin]

Unless Jarrow is effective again then you'd be better off with Country Life. It's not quite as good as Enzymatic Therapy but it works and may be comparable in price to Jarrow. You might also want to try a bottle of Enzymatic Therapy to see if there's a noticeable difference in effectiveness vs other brands.

Usually I trust Jarrow's brand, I think I'll try Jarrow first then switch to country life if it shows no effectiveness, but many thanks for the answers.

That might be a blood sugar drop causing an adrenalin rush. I wake up at 3-3:30 am every day because my blood sugar starts to drop at that time. I have to eat by around 4 am or I start to feel dizzy, hot, shaky, and confused. Then I need to eat roughly every two hours to keep my blood sugar up through the day. I go to bed at 7 pm to compensate for getting up so early.

I also have this symptom. I dream that I'm flying like a soul in my room then I feel a horrible fear and I wake up with brain zaps. Niacin really help me with that, but a teaspoon of honey before bed is more effective, you should try.

 

[PatJ]

but a teaspoon of honey before bed is more effective, you should try.

Thanks for the suggestion, but any simple sugars cause my blood sugar to spike and then crash a short time later. My bedtime meal needs some fat and protein for longer digestion and slower blood sugar rise.

 

[Kitsune]

We're at different ends of a spectrum. I don't get sleepy. I lie in bed until I lose consciousness but the actual feeling of sleepiness is missing. If I get very little sleep then I'm even more tired and brain-fogged the next day but not sleepy.

That sounds like hell. I wish I knew what to suggest. Like you, I take 0.5mg melatonin, but that's in order to reset my body clock, not as a sleep aid. I'm in awe of just how much knowledge people have about biochemistry and supplements on this forum, and I wouldn't presume to set myself up as any kind of expert, especially as I don't know your circumstances. But if it were me, I'd look at my supplements and see if I could spot a culprit or two that was contributing to the problem; also diet, and any potential toxins I was taking in (i.e. eating, from the environment, pharmaceuticals, etc). Have you tried starting a thread about this here?

Re: lithium orotate. Hm, obviously it doesn't work for everyone. I am wondering, though, why I haven't seen it on the list of potentially helpful supplements for Fredd's protocol, if some do find it helpful, and it has an effect on methylation. Again, I'm mainly interested from the body clock regulation perspective. In the past I usually got rid of the problem with a good B-complex supplement. Four months ago, though, I got rid of sugar from my diet and have stuck to that, and it's made my symptoms worse (how's that for a reward for healthy behaviour); I think the endorphins/dopamine/higher cortisol/whatever I was getting from stuffing myself full of sweet, fatty things several times a day was doing something good for me. Now that I don't have that . . . well it's one reason why I came to this forum and started looking at my supplements again.

I miss normal sleep. I miss normal everything.

Ditto. Don't give up though. I think it's a positive thing that we're here; looking at 'alt med' types of solutions is going to go a lot further than trying to get help from allopathic doctors, IMO. I hope you feel better soon x

 

[Immunity]

Hi, guys,
Did someone try to use Niacin to turn down the methylation or whatever it is that causes a bunch of symptoms?
I took only 1 pill of MB12 a month ago! and heart palpitations / tachycardia do not go away! They started a few hours later I took that cursed pill and I couldn't sleep reading the forum to find a solution. Then took potassium and it worked fine. The thing is the need for potassium doesn't go away despite I'm not supplementing neither with mb12 nor with mfolate. Afraid to continue and afraid to take niacin. Don't know what to do

 

[Kitsune]

@Immunity, I'm no expert in this, having just started myself, but normally niacin is fine to take - why are you afraid? There is a pdf called 'Start Low and Go Slow' by Caledonia, which unfortunately I don't know how to link to (maybe someone else can help), but in it she says:

It’s highly likely, even if you’re being careful, you’ll end up overdoing it, which will cause overmethylation. For this reason, I suggest not starting methylation until you have some nicotinic acid on hand. If you get yourself into an overmethylation situation, stop all methyl supplements and let everything clear out. The methylation cycle can continue cranking on its own for quite some time (days, weeks, or months), so to get immediate relief take 50-100mcg of a slow release nicotinic acid form of niacin. “Now”* is a good brand. This will soak up methyl groups and stop the reaction. Niacin typically comes in a 500mg pill so do not take the whole pill. Only take 1/10 to 1/5 of a pill (50 to 100mg). Depending on how much you’re overmethylated, you may have to dose every four hours, or four times a day for several days or longer. Ben Lynch also mentions dosing every ½ to hour. If you get a flushing reaction, it’s harmless and will go away after a while. If you’re getting too much flushing, try cutting back on the dose size or frequency.

Maybe you will need to start on a smaller dose of meB12? How strong was the pill you took - 1,000mcg?

HTH x

 

[Immunity]

@Kitsune,
Than you for your answer and Caledonia's text. I remember reading this and that flushing thing stopped me from trying to take it because I live with this flushing due to autoimmune disorders. When I took a capsule of B-group vitamins (Pure encapsulations) that contains niacin in it it made my flushing and overall feeling worse. But i will try today with niacin only. Have got a ukrainian vetsion of it, though.
That pill of MB12 was from Jarrows, 5000 mg at once. Don't know what I was thinking of. Now it's clear vitamins are no toys.

 

[Kitsune]

@Kitsune
That pill of MB12 was from Jarrows, 5000 mg at once. Don't know what I was thinking of. Now it's clear vitamins are no toys.

Blimey, a beginning dose like that would make me very, very ill - I'm not surprised you had a reaction! Good luck with the niacin x

 

[PatJ]

But if it were me, I'd look at my supplements and see if I could spot a culprit or two that was contributing to the problem; also diet, and any potential toxins I was taking in (i.e. eating, from the environment, pharmaceuticals, etc). Have you tried starting a thread about this here?

My sleep problems started with CFS onset in 2005. They worsened gradually so that I didn't notice the problem. Brain-fog and the slow onset of the sleep problems helped me to forget that sleep used to be deep and refreshing. I've had times with no supplements, many supplements, significant changes in diet etc. but my sleep quality has been the same.

Poor quality, unrefreshing sleep is a very common theme for CFS/ME. There are several long threads about it here, and many articles on the web about it. I've been trying various supplements and will continue to look for ways to improve sleep. I'm wary of pharmaceuticals because of my medication sensitivity and potential side-effects but might have to consider them at some point. Freddd's treatment helped a little with sleep quality but not significantly.

I've ordered some "Herbs etc. Deep Sleep" to try next. I've read in some posts that it's the only thing that has helped some people to improve their sleep.

I think the endorphins/dopamine/higher cortisol/whatever I was getting from stuffing myself full of sweet, fatty things several times a day was doing something good for me.

LDN is known for improving sleep quality and/or quantity. It effects endorphins so maybe that has something to do with the sleep effect. I'm planning to try LDN soon so hopefully better sleep will be one of the beneficial effects.

 

[PatJ]

@Kitsune Have your palpitations resolved by maintaining the higher dose of B12?

 

[Kitsune]

@PatJ I wish you well with the herbs. It's lovely when, now and again, you come across a supplement that really helps. Liquorice extract used to help me (I can't take it now). Ashwagandha is an adaptogen I've been taking for years, and I wouldn't be without it. For the record, my CFS started in 2004; it sounds like we've both been down a long and frustrating road. I've found various things to help with my sleep from time to time, and I feel sure that you will, too, if you keep looking.

I did some research on LDN not long ago. However, I doubt my GP would prescribe it for me even if I asked for it; and even though it sounds like it might give me everything I'm missing from the sugar, it also sounds like it's got effects similar to pharmaceuticals like SSRIs, in that it causes upregulation of neuroreceptors. I do not do well with drugs - every one I've tried to help with the CFS has just made things worse. That's not to say it wouldn't help anyone else, however. I hope you'll start a thread here and let us know how it goes.

Re: palpitations: Thanks for asking; I'll do a separate post below to hopefully call attention to it.

 

[Kitsune]

I'm still trying hard to balance things out. The palpitations continue to be a problem. It's hard to tell, and I know I keep changing my mind, but at least some of the time they seem to be due to low potassium. I haven't taken any meB12 today because due to my worsening sleep problems, I was going to experiment with the timing of my dose and take it just before bed, when it should produce melatonin (it doesn't seem to give me insomnia, at any rate). The palpitations began today just after lunch, along with a feeling of being spaced out and unable to concentrate very well; these continued to gradually increase in severity. I took 400mg of potassium every hour for 3 hours (total of 1200mg) and it seemed to be settling, but as soon as I ate dinner they came back; another 400mg settled them down. Is there something about eating a meal that initially robs potassium from the system, for digestion maybe?

I wonder if anyone can help me with ideas for how to balance things out a bit better. Or is it typical to need a lot of potassium in the beginning when methylation first fires up - then the need for the extra potassium dies down, at least somewhat?

Here's what I'm taking at the moment (having started methylation a couple of weeks ago), though as I said I'm still trying to find the best balance for now:

2,000mcg meB12
1,000mcg adB12 (every few days)
800mcg methylfolate (half in am, half in pm)
250mg LCF - just started
Pure Encapsulations B-complex (though I have another on order with lower doses, particularly of B1)
zinc picolinate - just started
1,000mg krill oil
5,000iu D3
800mg magnesium citrate (in 4 doses throughout the day)
18 grams vitamin C (in 6 doses throughout the day)
Lauricidin (monolaurin), 4 grains 3x a day
Ginkgo biloba
Ashwagandha

I've briefly tried a few other things, like vitamin E and ALA, but didn't notice any obvious effect and have put them aside for now so as not to make things more complicated than they already are.

Any ideas at all are welcome - thanks.

 

[PatJ]

I've found various things to help with my sleep from time to time, and I feel sure that you will, too, if you keep looking.

I will keep looking and trying new things, otherwise I'll stagnate. I've got piles of supplements that I've tried that made things worse, but a few that helped, so they're encouraging.

I've tried Licorice tea for helping OI but had to stop as my adrenals started to hurt. I've taken Ashwagandha at various times but for the most recent attempt about eight months ago I had to stop, but I don't remember why.

I doubt my GP would prescribe it for me even if I asked for it

It's possible to order it from various countries without a prescription. It's recommended for use under a doctor's supervision but some people are using it on their own. I plan to start very low (0.1mg) and slowly work upward.

I hope you'll start a thread here and let us know how it goes.

I will. I've benefited so much from fellow member's treatment reports and posts. I try to add that knowledge and help others when I can.

 

[PatJ]

250mg LCF - just started

LCF spikes my potassium demand like crazy. I think most people find that their potassium needs increase greatly from LCF. It will be interesting to see if your demand lowers when you switch to lower dose B vitamins.

When first started Freddd's treatment my potassium demand continued to increase over the first few weeks, then stabilized at 3.5 grams per day and stayed there for the rest of the nine months. For me, and some others, potassium demand seems to be related to the dose of LCF. I was taking 855mg per day in split doses.

I think I remember a post from Freddd where he says his potassium demand slowly started declining after a certain point but I don't remember how long it took.

For the heart palpitations when eating: blood is redirected to the stomach for digestion. It's a guess, but this blood redirection might be causing your palpitations. Maybe you could try: 1) Lying down after eating or 2) Eating a small meal (1/3 usual amount) to see if the palpitations lessen.

It's likely related to potassium need as you've noticed. More speculation: I've read that a low blood sugar episode uses up a lot of potassium. You've said you don't have blood sugar problems, but maybe eating and the associated increase in blood sugar involves potassium in some way? Possibly you're noticing an effect that the body usually deals with automatically but since your potassium needs are greater than normal it may not be dealing with changing potassium demand with its usual grace.

This site has a general list of possibilities for heart palpitations after eating.

 

[Kitsune]

@PatJ, thanks for the ideas; I think you're spot-on about the potassium. After the very first capsule of LCF I took, it dropped. It looks to me like I might be OK taking 400mg with most of my vitamin C doses throughout the day. I can't imagine supplementing 3.5g a day though - £££/$$$. It's frustrating that there doesn't seem to be a cheap supplier of bulk potassium out there.

Still struggling with the sleep problems. It's starting to look to me like instead of taking the melatonin at 3am, I could take my B12 then, since it causes the body to make its own melatonin. Of course I really wish I didn't have to get up every night at 3am at all to take pills, but needs must. So much experimentation at first to find out what works individually - and I haven't seen much improvement yet, apart from a bit more energy. That's something, at least, and it makes things that little bit easier, so mustn't complain.

 

[PatJ]

It's frustrating that there doesn't seem to be a cheap supplier of bulk potassium out there.

I use NOW Potassium Gluconate Powder from Vitacost. IHerb has it as well. Hopefully the shipping cost to your location wouldn't be excessive since you're listing £ before $.

If your potassium demand increases enough you may find that a midnight dose of potassium will be required. I used to take 500mg in the middle of the night to take care of symptoms that would arise.

Improvement can take quite awhile in some cases. I noticed beneficial effects immediately from the MB12 (neurological brightening) and then from the methylfolate (mood enhancement). The LCF provided noticeable energy.

I think three months is usually a good trial for a supplement or treatment so long as it doesn't have significant negative side-effects.

 

[Kitsune]

@PatJ Thanks, yes I've seen that brand of potassium mentioned. It works out to be a comparable price to what I take - bottle of 60 200mg tablets, about £6. Problem is when you have to take 10 or more in a day, that's when it adds up. I started a lower-dose B-complex today that has nowhere near the 100mg of thiamin I was taking (as well as low amounts of B2 and B6), but it doesn't seem to have made a difference. At the moment I'm having a banana with breakfast, then I seem to need 800mg at lunchtime, 400mg mid-afternoon, 400mg with dinner, 400mg before bed, and occasionally at other times too; I took 400mg at 3am last night when I had my melatonin and 3000mcg meB12. That isn't much B12, is it? Plus 1000mcg adB12 in the day. I'm wondering how much deeper my need for potassium will go as I slowly ramp up my supplement doses (don't intend to take more than the 250mg LCF for a while). It's scary, and I'm not experiencing any noticeable gains from all this yet. I do have a bit more energy and stamina, but the general leaden fatigue hasn't changed much, the brain fog is still there, and I'm rather more anxious and depressive than I was before. I tend to get SAD every winter, and that's affecting me too, I think. Starting to feel a pull toward giving up the healthy eating and going back to sugar and carbs as comfort foods, but not seriously considering that at least, as it would be disastrous on many levels.

Mind you, the other factor I'm juggling is the Lauricidin (monolaurin). I really wanted to take an antiviral to an optimal dose and stick with it, see if it did me any good. I have tried several times with olive leaf extract but it ends up making me sicker. Taking even one grain of Lauricidin was difficult at first, so very slowly I have been increasing that, but it's not enough for me to know yet whether it's something I will be able to get used to, or something my body will just keep rejecting. I feel that I can't give up on either of these things though, the methylation or the Lauricidin, because I've spent 11 years being ill and they're really the only hopes I have at the moment of getting better.

Added in edit I've found a brand of potassium gluconate powder that seems similar in weight and price to the Now brand, which is a little hard to come by here in the UK. I can see that it will definitely be cheaper to use than the tablets I currently buy, even though I believe you have to divide the dose by 6 to figure out the amount of elemental potassium. Maybe it will make things a bit easier.

 

[PatJ]

I started a lower-dose B-complex today that has nowhere near the 100mg of thiamin I was taking (as well as low amounts of B2 and B6), but it doesn't seem to have made a difference.

If there will be a difference then it may take weeks to appear. When I stopped taking LCF it took 3-4 weeks for my potassium demand to gradually diminish. It might work the same way when moving from a high dose to a lower dose of B vitamins.

At the moment I'm having a banana with breakfast, then I seem to need...

Sounds like you're getting into the flow of managing the demand. Freddd has said that it takes many hours for the potassium from food to enter the blood stream which is why supplemental potassium is necessary. When low potassium symptoms arise the body wants potassium now and, in my experience, only a supplement will deliver it quickly enough when demand is high.

3000mcg meB12. That isn't much B12, is it?

It depends on what your body needs. I tried up to 40mg on some days to see if I noticed any difference (didn't really notice anything except a little nervous energy), but usually took around 5-8mg. I think Freddd has said that a person needs roughly 1mg to get methylation going. Some people do better with more.

The idea with each supplement is to increase the dose and see what improvements arise, then decrease and see if they go away, and work out a balance point where you aren't giving the body more than it needs.

I'm wondering how much deeper my need for potassium will go as I slowly ramp up my supplement doses (don't intend to take more than the 250mg LCF for a while).

I expect it will plateau withinin a week or two. I think it took 2-3 weeks for me to hit 3.5 grams per day and stay there. My low potassium symptoms changed over time so if you get new symptoms and aren't sure what's going on then Freddd's lists of hypokalemia and insufficent folate symptoms can be very useful.

It's scary, and I'm not experiencing any noticeable gains from all this yet.

Potassium dependence can be unnerving. That's why it's so important to keep a good supply on hand.

Gains may be months down the road and gradual in their appearance. It wasn't until I was on the treatment for four months that I had a significant increase in mental energy.

I do have a bit more energy and stamina, but the general leaden fatigue hasn't changed much, the brain fog is still there, and I'm rather more anxious and depressive than I was before.

The little bit more energy is probably from the B12 and LCF. The anxiousness may be from the LCF. Split doses can help. Depressiveness, and low energy, can be from not taking enough methylfolate.

I tend to get SAD every winter, and that's affecting me too, I think.

Does vitamin D help?

Starting to feel a pull toward giving up the healthy eating and going back to sugar and carbs as comfort foods, but not seriously considering that at least, as it would be disastrous on many levels.

That's probably just a natural body response to entering a cold season. It wants to put on pounds and bulk up for warmth.

I feel that I can't give up on either of these things though, the methylation or the Lauricidin, because I've spent 11 years being ill and they're really the only hopes I have at the moment of getting better.

I don't know anything about Lauricidin but I hope it works well for you. I used to think my treatment options were quite limited but the more we learn, and the more that people experiment and share their results, the more options we all have.

It's common to have a long personal list of supplements and treatments that haven't worked. Then, finally, the right treatment is found, and someone posts a success story. I think you probably have more options, and reasons for hope, than you realize.

Have you read Erica Verrillo's "CFS Treatment Guide"?

 

[Kitsune]

@PatJ, thanks for all your thoughtful responses here.

If there will be a difference then it may take weeks to appear. When I stopped taking LCF it took 3-4 weeks for my potassium demand to gradually diminish. It might work the same way when moving from a high dose to a lower dose of B vitamins.

My new B vitamin arrived a few days ago, which I started taking yesterday morning; it's one I've seen recommended by @ahmo, mostly with 25mg of everything. (The day before, I took an old very low-dose B from the cupboard, because I just didn't want the 100mg of thiamin anymore.) So more B2 and B6, but less B1. My body's demand for potassium is still the same at the moment, though if that's how it continues, maybe I can comfort myself with thinking that the methylation process is producing new cells - that's what it uses the extra potassium for, right? By the way, my potassium gluconate powder came today. How do people here tend to take it when they're out and about - dissolve it in a bottle of water?

Interestingly, I also felt better in the evening - more alert, less tired, so I decided to try skipping the melatonin and woke at 4:30am. (I got back to sleep, as I often do, but it's that initial waking time which indicates the state of my body clock, and the extra sleep isn't very refreshing - though it often seems to produce weird and very vivid dreams for some reason.) That's just at the limit of what I find acceptable, so I think I'll carry on like that and see what happens, since the melatonin was producing side effects of its own. I can't really take any less than I do (.5mg), and sometimes I need double the dose. B-vitamins do seem to help with the circadian rhythm problems, so fingers crossed that I've found a brand that continues to make a difference. I actually felt awful yesterday while my body got used to the new vitamin, but I'm OK today. What a roller coaster.

Freddd has said that it takes many hours for the potassium from food to enter the blood stream which is why supplemental potassium is necessary. When low potassium symptoms arise the body wants potassium now and, in my experience, only a supplement will deliver it quickly enough when demand is high.

Yes, I've discovered that. I seem to be needing regular amounts at regular times, though stress and exertion increase my body's demand. Time to fill out that medical bracelet, I think.

Gains may be months down the road and gradual in their appearance. It wasn't until I was on the treatment for four months that I had a significant increase in mental energy.

Thanks for that. So it's important to persevere. I had a few very bad days and really wanted to give up on various things, but I managed to stay steady, and incredibly I feel much better today. I'm thinking it's due to the new B-vitamin, though increasing my meB12 from 2,000 to 3,000mcg may have helped too. Maybe I was taking too much folate (800mcg total) for the low B12 dose I was on? I tried taking half that much one day, though, and felt terrible.

Does vitamin D help? . . . That's probably just a natural body response to entering a cold season. It wants to put on pounds and bulk up for warmth.

With the SAD, vitamin D unfortunately has no effect, though I take it anyway. And where I used to live, in the middle of the USA, I didn't have these problems in the winter, because winters were bright, especially with the sun reflecting off the snow. Here in the UK they are utterly dismal; on top of our higher latitude, it can get cloudy literally for weeks at a time, to the point where you're driving with your headlights on at noon (as now). It bothered me the first winter I was over here, but since I got CFS it's really been hard. Still, now that I am more educated about these things and have some good supplements, I don't think it will ever be as bad again as it was the first winter I was ill and without a clue as to what was happening to me.

I think you probably have more options, and reasons for hope, than you realize.

Have you read Erica Verrillo's "CFS Treatment Guide"?

Thank you, I hope so. That looks like a good book - I will see about downloading it.