REFEEDING SYNDROME - The clues to healing via induced deficiencies

[Richard7]

re gums and teeth I found that using these soft toothbrushes used in the way demonstrated on this site helped https://www.orawellness.com/video-tutorials/how-to-brush-your-teeth-to-reduce-gum-disease/

they have extremely soft bristles that get into all sorts of painful places and clean them out so that they can heal. Brushing with them was not fun, but I no longer have pockets at my gum line so it was worth it.

I also have been using vitamin K and have gone from having teeth that were transparent/translucent for their upper third in early 2015 to having teeth that look like teeth. My dose has varied depending on how much money I have had etc. I am currently on 15mg/day taken with a meal that contains a fair amount of fat. I have at times been up to 45mg/day which I understand is the clinical dose for osteoporosis.

I take vitamin D and A as I feel I need them.

 

[xrayspex]

basil has vitamin k....I put a bunch of fresh basil in smoothies

also I stopped using electric toothbrushes like sonic care....now my dentist that I trust says they wreck your gums over time, which i agree

 

[Kathevans]

My dentist recommends a water pick...

 

[Chocolove]

Note: There is a big difference between vitamin K and vitamin K2. K2 is more often found in animal products. It's worth checking out.

 

[Chocolove]

Brushing with them was not fun, but I no longer have pockets at my gum line so it was worth it.

I also have been using vitamin K and have gone from having teeth that were transparent/translucent for their upper third in early 2015 to having teeth that look like teeth. My dose has varied depending on how much money I have had etc. I am currently on 15mg/day taken with a meal that contains a fair amount of fat. I have at times been up to 45mg/day which I understand is the clinical dose for osteoporosis.

I have had extremely good results healing gums by swishing around liquid olive leaf extract in my mouth. Olive leaf extract is an excellent microbial with very high levels of antioxidants, which is extremely gentle on the delicate injured tissues. It healed my mouth in a remarkably short period of time.

What I used:
https://smile.amazon.com/s/ref=nb_s...efix=barleans+olive,aps,198&crid=5URGA9C84DG5

If I need an internal anti-microbial OLE is high on my list.

It's really great to hear about the recovery of your teeth.

 

[Richard7]

@Chocolove oddly enough I used to use olive leaf extract as a kind of bitter.

I bought it to deal with the flu, and found that it seemed to make me feel quite a bit better for a while, and then once it was in the cupboard I used to take a tiny fraction of a teaspoon before eating and sucked on it/rolled it around in my mouth till I felt it having that bitter kind of impact you get from dandelion greens etc.

I might have been helping my gums by accident.

 

[BBQGirl]

@alicec @MacGyver

@Freddd Thank you for providing this broad context in which to understand puzzling phenomena.

I have come to realise that the most likely explanation for what has been happening to me over the past year or so is a gradual depletion of one or more nutrients and for months I've been casting around fruitlessly trying to identify what these might be.

Since one of the worst parts of my decline is worsening brain fog it has become increasingly difficult to think my way out of the problem.

It has been mainly my experience with the deadlock quartet that convinced me of the depletion idea. I've certainly gained considerable benefit from it but only for a time. Invariable it has felt like something else kicked in and shut down the whole system.

It was in the context of B6 that @MacGyver made me think particularly about boron (see his post here). At about the same time I caught up with this thread and have been able to put my boron experience into a better context.

I have been taking a trace mineral preparation containing 0.75 mg boron for a long time but within a short time of swallowing 3 mg (as boron glycinate) I felt a remarkable clearing of the brain fog and increase in enthusiasm and drive. This lasted only an hour or so so I took more, getting the same clearing though gradually diminishing. I ended up taking 15 mg the first day and have continued this dose.

Interestingly after about 4 days I got virtually no effect from the boron and imagined that I had satisfied that depletion and now something else was kicking in - but what?

I considered all the minerals. I don't think copper is likely since I have an elevated non-ceruloplasmin copper and have to take a fair amount of zinc to keep this under control (currently 50 mg/daily). It is time to get more tests so I will check this. As for the others, nothing stands out as obvious and I would have to order stuff in (just happened to have the boron on hand) but I will certainly do some experimentation in future.

I returned to thinking about B2 and B6 since I had bad experiences with reducing the dose of these. At least at this point increasing B6 is a bit problematic but increasing B2 has had a profound effect. Again after taking 100 mg riboflavin (in addition to the usual 35 mg R5P) I experienced a remarkable clearing of the brain fog, increase in enthusiasm and drive and perhaps a slight improvement with the eyes. I added more but it is early in this experiment so I can't report anything else yet.

So I definitely seem to fit with category 8 but am the opposite of category 7, at least where B2 is concerned.

Without complicating this post further I'll just say that experiments with increasing methylfolate and/or methylB12 at the same time as I was experimenting with boron makes me think that much of the effect is actually due to facilitation of methylB12. Of course there is also likely to be an effect of boron itself but it is hard to pinpoint this. Need to do more reading.

I suspect B2 will not be the end of this journey - there are probably other things which have become depleted and will soon show up.

Thank you SO very much for posting this and the link to @MacGyver post (even though I had read his post before I totally forgot about it!) Like you I seem to be slowed down or not continuing forward like I think I should. It seems every time I add a new nutrient (selenium, manganese, boron, B1 or B2 etc) I can start methylation very well but then the party is over in 1-3 days usually. And no I am not mistaking the first start up flush/ rush (for lack of a better term) for just slow and steady workings. I have an acute awareness for my potassium needs and it goes from incredible need to zero, beyond my normal food intake.

I had been waiting for my boron to arrive with the intentin of taking more. I got a super start up with just 3 mg, then I only had 1 left and that did nothing for me the next day. I took 3 yesterday with no affect. Then I happen to re read this post again and also MacGyvers and figured I would take some P5P, R5P- boron, and magnesium for good measure and WHOA nellie, it took just a bit for me to realize what was going on because it was just a nice slow and steady rise in my mood, motivation and thinking. AND the amazing thing to me is that I had not yet taken any MFolate or B12 yet!

I had just about given up on taking any more R5P (in any form) since all I do now, is immediately lose it the next time I pee even when taking as little as 6 mg. But this time, voila! No losses at all. I just KNEW i was not yet tanked up on it, I was just losing it because I could not use it. I was somehow very malnourished (thinking leaky gut?) and I started losing the B2 pretty quick comapred to the other B's that I have been taking individually to see their effect/ cause/ result etc. I only took 6 mg, but am going to go take more, now that I see I am using it for more than expensive toilet water coloring LOL

Though it does kind of dishearten me in wondering what kind of combonation it is going to take next time when this stops working, like all the other things These combo's are something I know less than nothing about and sadly my brain does not work so very good most days to try to figure it out. Everyone here has been so free with their ideas it is SO wonderful I am very thankful for that. If I could only remember a fraction of what I read I'd be dangerous.

Take Care, Ginger

 

[Athene*]

@Kathevans Hope things are improving. You mention sunflower lecithin. Just to say I've been taking a daily tablespoon of sunflower lecithin powder for the past year or so. I don't get any gallbladder pain anymore but I do wonder if I'm taking too much or too little. How much is a good dose I wonder? It says 1 and 1/3 tablespoon on the box. I remember @Freddd saying that inositol can overdrive methylation. Would that happen with the lecithin (contains phosphatidyl inositol) Freddd?

I have been where you are with the insomnia and palpitations, Kath. Things are better now but my circadian rhythm is all over the place. My potassium need is up to 3g daily again because I'm (at last!) able to tolerate vitamin D3 without constant thirst and peeing and aches and pains. The calcium and boron have helped me tolerate D3. Now I need lots of magnesium which the D3 is using up fast. I feel my energy coming up again in the past week or so which is a relief.

Your salt seems low. I find I need plenty of salt with the potassium. The potassium need is driving me crazy. It's been two years on the 'protocol' and it keeps going up as I add each new thing. I'm on the complete set of supplements Freddd uses now including some Cod Liver Oil for the natural vitamin A which helps with the D. Fingers crossed...

I have had huge healing (bedridden before found Freddd's advice). Just need to titrate up on the dibencozide and LCF in order to tolerate more exercise.

You mentioned before you're not on LCF. Is it because of potassium demand? (It increased my demand massively)...

I wish we had more stable electrolytes and I do hope you're ok.

 

[Kathevans]

@ Athene Indeed, things are much better. I've added Sunflower Lecithin--the current tab is a Whole Foods brand which has 1200mg in it. I take one a day and currently am not taking Inositol, though I have some... Could be running up a deficiency, I know!

But what I discovered that really works and helps all around is B1. Not regular Thiamin HCL, which I'd tried about six weeks or so ago, but Allithiamine by Ecological Formulas. Well, I must preface this by saying that first I got off the Adenosyl B12 on a daily basis--the Transdermal Oils, which as you pointed out perhaps on another thread, and as Fred has pointed out as well, may have been somehow blocking the methyl B12. Once I did that who can say what might have worked? But it was the Allithiamin that I started to take at about 6mg doses several times a day. Immediately my potassium needs plummeted and my palpitations became less and less frequent. I also noticed that I felt instantly 'over-methylated' and began to lower my folate dose to see how I felt.

I'm still in the experimentation phase, but initial results are heartening (really!). My daily Allithiamine dose ranges from about 50-60mg. I actually raised my daily multi-dose to an entire Seeking Health B-Minus, which gives me a total of 20-25 mg of the lower Bs, which I divide into 2 doses. I seem to feel better on this baseline of B1,2,3 (50mg/day of the niacin)6. I'm still futzing with the Folate, which I've been supplementing at around 7000-10000mcg/day, while the potassium is holding at 3100-3500mg/day.

And my sleep has improved markedly. Although broken, I seem to get in 4-6 hours a night which I can function on. Still I depend on 1/4 Ambien two or three times a week--which I wish I didn't.

If I over-do the Allithiamin/ and or the Folate now, I get over-stimulated, and possibly have too much detoxing. I wake at night drenched in sweat, my head is itchy. I've had red splotches on my face at either side of my nose sort of where the sinuses are--on another thread @Asklipia pointed out that she had I believe what was mercury blotches, though others have said that the Allithiamin detoxes other metals. I am certainly dealing with some mercury issues and who knows what else. My next alternative doctor's appointment isn't till the end of October...

The LCF I'm a bit wary of because it may have caused some palpitations--and I am just relieved at the moment to have them somewhat under control. No heart medications. Also at about 3500mg of potassium, I've got some hefty reflux going at night. I'm not anxious to need more...

It's just so hard to see all the interactions here; but it is amazing to see how things shift when a deficiency, like thiamin, is addressed. But the worry is there too--what else am I short-changing? I do have the Boron on my supplement shelf. I just haven't tried it yet.

It's a tightrope walk!

(Oh, yes the Cod Liver Oil is one of those things I've been on for years. Maybe it's why it was possible for me to titrate up on the D3 and K2. I'm holding those steady at 2,000 D3/day; 200 K2, I think it is. I use NOW's Liposomal Spray. My vitamin D levels went from a below level 24 (in a range of 33-96 ng/mL) to 47, which is actually reasonable. For the winter months, though it might be good to raise it some...)

 

[Athene*]

Relieved to hear you're okay, @Kathevans. The electrolyte chaos always worries me. Yes, so many deficiencies - impossible at times to keep track. I'm glad you've found something that helps. At the very least it will give you a break and allow you to rest for a bit. The Alliathiamin was fantastic for me, but alas only briefly and I ended up with even worse potassium demand. It may be different for you.

I'm not doing too badly with potassium now. And I've managed to titrate up to to 2/3 of an LCF capsule (which I was never able to do before) since taking the vitamin D, calcium, boron & extra magnesium about two weeks ago. I've no idea how I'm managing to tolerate the LCF. It's a mystery to me, but thankfully it's giving me more energy.

The waking at night drenched in sweat and itchy scalp you mention always signals low cortisol for me, but that could be completely different for you. It's always followed by hair shedding a few hours later and next day, which makes me so fed up! It seems to have improved lately, but we'll see...

Can you say which Cod Liver Oil you use?

 

[Kathevans]

@Athene* I've always used Garden of Life liquid Cod Liver Oil which I get from iHerb. Not a bad taste at all, minty in fact, and no burping taste. A teaspoon also has about 5,000 units (?) of Vitamin A.

My red splotches, whatever they were, are clearing up, but I will say there is something, perhaps in the active form of the B1 or B1 in general, that is over stimulating, and that--I think--has upset my stomach. I think I've read that thiamin produces hydrochloric acid in the stomach, so perhaps that's it. I've been holding it at 50mg (over the 25mg in my B-complex) per day, and trying to take it mid-day, but the mucus in my throat persists. Which could be taking other supps in the middle of the night or drinking the potassium (still at 3100-3500mg/day)...a problem for compulsive people like me.

Once again last night I tried refeeding Folate to see if it would get rid of my IBS, which persists, particularly towards the end of the day, making it seem that something has run out. But taking more--in 2 increment's of 800mcg earlier in the evening, and finally 2400mcg at about 2:00a.m.--made that situation increasingly worse, and made me feel overwrought and shaky. If as Fred says, the body will respond to the most needed item when you 'refeed' the correct item, which I have experienced, then,as I noted down in a note to myself, folate is not the answer.

Hardly a heart flutter, though, and I'm grateful for that. Though I have noticed more aching in my hands--the Dupytrens contracture--so something is missing. Maybe it's all the Adenosyl B12! WHich I have remained off as a daily supplement. Well, this makes me think that perhaps I ought to return to, at the very last, the sublingual on a daily basis, or more often than once a week.

I feel frustrated, it's true. Sleep is still a mystery. I fall asleep easily, but wake an hour and a half later and am awake for hours...which is generally when I give in to the Ambien.

What has the itchy scalp been associated with for you in terms of supplements? I do also feel that I have been losing more hair than usual... yikes.

I feel like I have lots of questions, but can't formulate them. They seem to reside in the realm of 'What the ... heck?'

 

[Athene*]

Thanks re CLO, @Kathevans The one I have is Nordic Naturals which doesn't taste too bad, but it hasn't got that much vitamin A so I take two teaspoons daily. Along with the titration of vitamin D3, calcium, magnesium, boron, and LCF I have a lot more energy. I'm now walking 15-20 minutes every day plus doing housework etc for the past several days. I take regular rests. I really hope it lasts. I"m on all the supplements that Freddd uses now (except for D-Ribbose - gave me gut issues, and TMG & SAM-e) and have managed to reduce folate to 20mg (was 28mg). I want to try keeping folate at around 16mg as I think Fredd does. I'm sleeping around 6 or 7 hrs per 'night' (still very much upside down, but getting to sleep an hour earlier at least).

The hair shedding has improved as well over the past week - hardly any, but we'll see...
The only supplement that ever helped me with that was methyllfolate. It was always linked to a crash for me, along with PEM, before I got settled the past week. I'm hoping it's gone away, but again, we'll see...

 

[Kathevans]

I added the Adenosyl/Methyl Oil back and in at once a day. It has completely taken away my very sore/weak back muscles, so I think it's very ncessary for me...though possibly every other day, who knows. And am still raising B1/ Allithiamin levels, though this like so many supplements has an up side with the energy it produces and a down when it over stimulates and possibly causes too much detox... It's one that I have to go slow with. My Folate needs have continued to come down with the increased Thiamin--as it makes me feel hyper and over-methylated, I lower it--and I'm not sure where it will settle. 6,000-7,000 or less? Time will tell...

Up and down sleep. Perhaps in a few weeks I'll head back to the LCF.

 

[Athene*]

Interesting re Ado. I seem to need it twice weekly but more makes no difference. I use two sublinguals 10mg each twice per week and it doesn't knock me out anymore like it used to. With the Ado in the oil it seemed to lower my b12 absorption. Maybe I've finally got enough now. The LCF full dose, which I'm on now has really helped things and quite quickly.

I'm still not sure how I'm managing to tolerate LCF since I couldn't raise by even a smidgin for two years without full collapse an unsatiable folate & b12 demand (edit: meant to say folate & potassium demand) but it's since I managed to finally tolerate D3 that I've been able to tolerate the LCF.

Now, how I'm managing to finally tolerate the D3 is a bit of a mystery, but it does seem to have been helped by upping my calcium supplement to 500mg daily, along with extra boron and K. Phew! It sure is complicated. Good luck with your own endeavours...

 

[Kathevans]

Thanks, @Athene* For the moment I'm using the Ado/Methyl Oil once every other day, and--after getting my Allithiamin up to 150mg/day, and still going--have begun to also raise the Folate again, for both pain, for headaches at night, and sleep issues. At this level of Thiamin, the pain in my calves that had begun to appear is starting to go away, as are the red rashy patches on my face, but I still have a lot of night sweats and have started to get some lymphatic soreness under my arms...

I'm just bumping along. It's amazing the level of dysfunction we get used to!

My potassium is pretty steady at 2500mg/day, and I'm not taking any at night. Many of my heart issues may have been the Thiamin deficiency. But my gut is still pretty woozy, a lot of mucus in the throat, etc. Maybe back to the Betaine which I'd pulled back on.

I ought to be doing more reading and research here, I suppose, but what I want to focus on is cleaning my house...which has fallen into disarray these last few months...! I have been taking more woods walks--at least several a week, and it feels good to be doing that. Our weather has been unseasonably warm. I still haven't put away my summer clothes... But it's New England and the cold is sure to come!

 

[Hanna]

@Kathevans I am also on 150 mg allithiamin and suffer from those calf pains too though I am supplementing in magnesium and B2 in addition to my B-complex. Before introducing the allithiamine I didn't have this issue (I take benfothiamin 100 mg/day in a B-complex). Do you link this pain to some nutritionnal specific deficiency/ desequilibrium ?
PS: I have been playing with the lipothiamin/allithiamin for 1.5 months now, so pretty new, but have experimented so far diminished POTS symptoms, so I want to continue.

 

[Kathevans]

@Hanna As I said above, at this point I'm hesitant to say exactly what is a result if what. But, I had taken higher doses of B12 and folate for a while, and had done the B2 titration up to 150+mg or so and come back down to about 50mg/day--which includes what's in my B-Complex.

I had tested low on NutrEval for B1 and because it initially caused heart irregularities, I avoided it. By the time I began to address it, I felt symptoms of weakness and unsteadiness in my lower legs very specifically. The sore calves came after I began the supplementation and I feel pretty sure that's a symptom that was uncovered as the healing began, as I began to refeed.

 

[Athene*]

Thanks, @Athene* For the moment I'm using the Ado/Methyl Oil once every other day, and--after getting my Allithiamin up to 150mg/day, and still going--have begun to also raise the Folate again, for both pain, for headaches at night, and sleep issues. At this level of Thiamin, the pain in my calves that had begun to appear is starting to go away, as are the red rashy patches on my face, but I still have a lot of night sweats and have started to get some lymphatic soreness under my arms...

I'm just bumping along. It's amazing the level of dysfunction we get used to!

My potassium is pretty steady at 2500mg/day, and I'm not taking any at night. Many of my heart issues may have been the Thiamin deficiency. But my gut is still pretty woozy, a lot of mucus in the throat, etc. Maybe back to the Betaine which I'd pulled back on.

I ought to be doing more reading and research here, I suppose, but what I want to focus on is cleaning my house...which has fallen into disarray these last few months...! I have been taking more woods walks--at least several a week, and it feels good to be doing that. Our weather has been unseasonably warm. I still haven't put away my summer clothes... But it's New England and the cold is sure to come!

Sounds pretty good, @Kathevans. Haha, my house is cleaner now too! (wow! aren't we exciting...)

Wood walking sounds especially lovely! I got out and about for five days in a row two weeks ago and have had to take it a bit easier since then but no major crash which is amazing and I was out today for a half an hour walk again (not too fast or strenuous just yet, but still wonderful...). The LCF has made a huge difference. I'm back up to 3K potassium since upping the LCF but feeling good. (That dratted potassium need will never go away it seems, but I'm willing to pay that price if life keeps moving on this way (hopefully!!)

 

[Kathevans]

@Athene* I'm managing the potassium in 5 double doses of about 525mg, but if I need more I'm not sure when I'd squeeze it in...

As to the house cleaning, I did manage a bit yesterday, but it felt like a push, and one of my major pain issues is my hand joints, and the Dupytrens contracture. All that gripping of the vacuum wand! The higher Folate may help with this, I have to see. Fingers crossed!!

Almost sadly, I stopped stopped playing the guitar in my twenties because after playing all my joints hurt. And I stopped studying ballet a bit later because the tendinitis in my Achilles' tendons was so bad I was hobbling across the street to avoid traffic. I'd been taking what some here refer to as fake folate, folic acid, since I was nineteen and doctors told me to take it because my mother had taken :iethylstilbesterol when she was pregnant with me...a supposed remedy for miscarriage... Then I'd had all that dental work removing amalgams unsafely at nineteen, and wisdom tooth removal at twenty-four or so with nitrous oxide. All this yielded an acute anxiety disorder at nineteen-twenty or so; with a relapse at about twenty five. So much life and joy squelched...

But yes, the walks are lovely, especially on these warm Indian summer days...

Oh, I did try 1/4 of a LCF yesterday, and only felt some fluttering and heart unsteadiness...I also have a bit of a harder, a bit faster heartbeat at night because of the Allithiamin, so I don't want to push too hard...

 

[Athene*]

'So much life and joy squelched...' Yep, @Kathevans I can only too well identify with that. Ditto with the nitrous oxide for dental work (at age 12 age 20 and age 24, each time followed by severe illness. I got over the first two but never really recovered from the last one aged 24). I didn't know then that my pernicious anaemia was beginning to kick in in too, though my MCV didn't rise to above 100 until my mid thirties, I certainly got episodes of very low B12 and folate symptoms in my mid twenties, just like I get now after too much exercise.

And yes, do go carefully with the LCF. It gives me palpitations when I increase it and I'm having to use more potassium now I'm on full capsule (855mg yielding 500mg Doctor's Best) of LCF. I'm thinking of adding Sam-e and TMG ( to see if that helps the Ado along). Then I would be on the full list of what helped @Freddd. Interesting to see if it moves things along with more ability to tolerate exercise...

Sorry to hear about the joint pain. I don't have much problem with that in general but I used to when I was hypothyroid without treatment for a few years (low in folate & B12 at the time too).