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Bad experience with keto

Mary

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I do find a BCAA deficiency on a ketogenic diet highly unlikely, since so many low carb foods contain a lot:
Actually when my low leucine was first discovered through Nutreval testing, I was told that it was unusual to be low in leucine period. Most people aren't. And I've eaten plenty of protein for many years. I think the low leucine has to do with the screwed up metabolism of ME/CFS - our bodies just don't work like normal people's. In other words I think I was ingesting plenty of BCAAs for a normal healthy person, but it was not enough for a woman with ME/CFS.

There is no doubt that when I started taking BCAAs four years ago, within a week my crashes (which had been consistent for some 14 years) suddenly were cut in half. It was mind-blowing. I still remember the disbelief I felt when the crash started lifting way sooner than usual. It felt like a miracle. I never expected anything like this.

So when after 4 days on the keto diet, the duration of my PEM was suddenly back to where it had been 4 years ago, plus it took much less exertion to crash - my energy envelope was cut quite a bit, I find it very hard to believe that my BCAAs didn't get depleted. And I believe it was Fluge and Mella who said that women especially with ME/CFS tend to use amino acids for fuel. If this is true, and if my body was having trouble going into ketosis, and my carb intake was so low, my poor body I think was probably forced to use even more aminos than usual for fuel, depleting me quite badly, as evidenced by the longer crash which occurred when it should not have even occurred.

If I was a normal healthy person, I wouldn't need to take BCAAs at all, or most of the stuff I take just to have a bit of quality of life. But my body doesn't work right. I shouldn't have to take 10000 mcg of B12 a day to notice a difference, but I do.

I'm now cautiously considering giving keto a try again, after all the holidays, but with taking at least double my regular dose of BCAAs, plus MCT oil or something similar. Will see how brave I feel by then! :nervous:

I'm sure you've seen talk about the research showing high levels of tryptophan in the brain being implicated in ME/CFS - did you look at these articles which were in a thread linked above, which talk about how BCAAs can counter high levels of tryptophan?

http://www.ncf-net.org/forum/Fword.htm
http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=41341
http://www.ncbi.nlm.nih.gov/pubmed/11310928
http://jn.nutrition.org/content/136/2/544S.full
 
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Mary

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Hi @Wishful, no, I haven't tried them separately. I've done so well with them in combination, I don't want to mess with success. Plus there must be a reason they are taken in combination by athletes, body builders, etc.

Did you see the articles in my post right above this one? They talk about how BCAAs help with excess tryptophan and something called "central fatigue".
 

Mary

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I've been up for nearly a full day with almost no sleep and I'm finally beat enough to maybe get some shut-eye
That's beyond miserable. I've been there. When I was tapering off of lorazepam, I discovered that high dose vitamin C helps with excitotoxicity in the brain. It helped quite a bit to calm me down. I keep trying new things because so many things work for awhile and then stop, but right now I'm back to high dose vitamin C and I like it. I'm now taking 3 grams with each meal, 3 grams before bed and 3 more middle of the night.

Magnolia bark from Bulk Supplemlents is very powerful - someone I know sleeps the whole night on 1/8 teaspoon. I needed 1/8 t. 2 x a night. It worked very well for several weeks, but now is not, so am back to the vit. C. I tried other brands of magnolia bark and nothing could touch the stuff from Bulk Supplements (you can get it from Amazon Prime if you have it for free shipping). Niacin has also been helpful. I also cut my calcium in half, only take it in the a.m., and take lots of magnesium at night. And no magnesium citrate - the citrate worsened sleep. Am currently taking magnesium glycinate. I hope you get some rest! :sleep:

Also I discovered that pantothenic acid depletes taurine - and taurine is necessary to calm down the brain from glutamate excitotoxicity. I had been taking pantothenic acid for years when my MSG sensitivity developed and I only discovered I think within the last year that it may have been a big part of the problem. I stopped pantothenic acid many months ago, can't remember how long, but recently realized I don't seem to be quite as sensitive as I was to anything MSG-related. One of these days I will get adventurous and try Chinese or Thai for dinner and see what happens!

And you might find this helpful, it's calming (at least for the first several weeks . . . ): https://forums.phoenixrising.me/ind...-to-calm-balance-ans-stimulate-thyroid.52258/
 

pamojja

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did you look at these articles which were in a thread linked above, which talk about how BCAAs can counter high levels of tryptophan?

Sorry, I oversaw. That's indeed a probable mechanism.

And I believe it was Fluge and Mella who said that women especially with ME/CFS tend to use amino acids for fuel. If this is true, and if my body was having trouble going into ketosis, and my carb intake was so low, my poor body I think was probably forced to use even more aminos than usual for fuel, depleting me quite badly, as evidenced by the longer crash which occurred when it should not have even occurred.

That also brings us back to when carbs are reduced, calories do have to come from somewhere. Also in my case if I increase protein, it promptly shows up as glucose in my blood. Not so with (healthy) fats, from which I get almost 70% of my calories (I'm just moderate low-carb, not keto though).
 

Mary

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There's no convenient way to know why the coconut oil--or anything else--makes my symptoms worse. It would be different if I knew that a treatment would work after 'x days' of feeling lousier, but I don't want to take something that makes me feel lousier, for an unknown length of time, just because one or two other people say that it works for them. Yes, there's always that nagging little thought that 'maybe it would have worked if I'd just taken it for another day or two', but we have to go by our best judgement, and that coconut oil didn't provide any improvements along with the worsening of symptoms, so I'm not anxious to try it again for longer.
Hi @Wishful - the only way I've been able to do things like sticking with the coconut oil when I felt so bad at first is muscle testing. It's helped me innumerable times sort out if something was good or bad for me, what the heck was going on, how much of something to take,, etc. e.g., methylfolate made me feel great at first and then severe fatigue hit. That was pretty much a no-brainer - my potassium tanked badly, but the muscle testing helped and also helped figure out how much potassium to take. Thiamine did something similar, I felt great at first, and boom! But it felt different than low potassium, and eventually I figured out my phosporous had tanked ( has to do with refeeding syndrome).

Anyways, I know most people think muscle testing is a crock, and that's fine. I'm not going to debate anyone about it. I can't provide "proof", just my own experience. I just wanted to let you know what has let me get to where I am. If you want more info, PM me. And I always recommend someone start with an experienced competent practitioner, don't just try to do it yourself from youtube, at least not in the beginning.
 

sb4

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@Mary I would try the keto diet again if I were you with added BCAA. Although it is like you or someone similar said, the improvement only comes from BCAA and not protein shakes or increased protein intake, which heavily implies that it is the ratio of BCAA to other AA that matters.

Did you stop the BCAA during keto experiment in order to stay under protein totals?
 

Mary

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Did you stop the BCAA during keto experiment in order to stay under protein totals?
No, I didn't even think of my BCAAs as being part of my total protein! Maybe they were . . . I just kept taking my regular dose. I'm actually right now in the process of doubling my dose of BCAAs (without keto) because @ljimbo423 is having such good results with quite a high dose - 15000 or 16000 mg. I'm going up to 8000 mg (from 4000) to see what happens. Maybe I will crash less! (I wish) And Sushi takes extra BCAAs when she thinks she's going to crash.
 

Wishful

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Thanks @Mary those articles were quite interesting. I hadn't come across the term 'central fatigue' before or the involvement of 5-HT. I think it fits my observations. I'll have to play a bit more with BCAAs, particularly before strenuous physical activity.

Maybe CFS should be changed to CCFS: chronic central fatigue syndrome.
 

Wishful

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Alberta
Hi @Wishful, no, I haven't tried them separately. I've done so well with them in combination, I don't want to mess with success. Plus there must be a reason they are taken in combination by athletes, body builders, etc.

Ah, but most athletes, body builders, etc, don't have ME, so are a bad example for us to follow. The reason to experiment with them separately--other than saving money on the ones you don't need--is because maybe you need only one and the others are actually inhibiting the benefits of that one. You might even be stressing your liver or whatever with too much of something that isn't benefiting you. It's certainly up to you, but I'd certainly do the experiment if I needed to take that much BCAAs every day.
 

YippeeKi YOW !!

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That's beyond miserable. I've been there. When I was tapering off of lorazepam, I discovered that high dose vitamin C helps with excitotoxicity in the brain. It helped quite a bit to calm me down. I keep trying new things because so many things work for awhile and then stop, but right now I'm back to high dose vitamin C and I like it. I'm now taking 3 grams with each meal, 3 grams before bed and 3 more middle of the night.
Thank you for the commiseration and the “There, there…”, it does help to know that others are dealing with the same crappy, life-and-soul sucking issues :grumpy:. And I sooooooo hear you on the frustration of finding something that helps, only to have it poop out on you within days or weeks, leaving you scrambling to find something to replace it, rinse repeat, rinse repeat, rinse….o_O


Magnolia bark from Bulk Supplemlents is very powerful - someone I know sleeps the whole night on 1/8 teaspoon. I needed 1/8 t. 2 x a night. It worked very well for several weeks, but now is not, so am back to the vit. C. I tried other brands of magnolia bark and nothing could touch the stuff from Bulk Supplements (you can get it from Amazon Prime if you have it for free shipping). Niacin has also been helpful. I also cut my calcium in half, only take it in the a.m., and take lots of magnesium at night. And no magnesium citrate - the citrate worsened sleep. Am currently taking magnesium glycinate. I hope you get some rest! :sleep:
Have been circling magnolia bark for a little while now, but keep getting side-tracked as another symptom pops up, or morphs:confused:, requiring another endless round of research and prowling the web:thumbdown::thumbdown:. That, and my leeriness about adding in anything new, has slowed my response considerably. But I’ll keep looking into it, especially now with your rec, even if it only helps for a few weeks. I order other stuff from Bulk, and have 2 or 3 offers of free product in exchange for a review, which I may take advantage of when I have the time to put my response to either mag oxide or potassium gluconate into words. Generally I'm on the fence about the idea of quid pro quo reviews, though. Makes me itch:nervous:.

Not sure about niacin, am hideously reactive to all B-vits right now. Arrrgggh:depressed::depressed:.

And like you, I had to cut out calcium entirely, and have only started adding back small amounts recently, and also like you, only in the morning. Calcium triggers an excitatory NMDA response, which the glute sensitive really don’t need more of. Am experimenting right now with seeing if the boost I gave to MK7 and MK4 will somehow help usher calcium into less damaging areas, will definitely let you know how that shakes out, and if it helps :nerd:.

Started boosting my mag glycinate almost a year ago, it’s the only thing that actually helps inhibit the anxiety / panic attacks, tho not sure if it helps a lot with sleep. I take anywhere from 600 to 1000 mgs a day, in small 50 mg divided doses, many of them on an as-needed basis.

And thank you for the good wishes re sleep, I actually got a little last nite ... not enough (is there ever enough:wide-eyed:?), but enough to recharge the brain a bit .

Also I discovered that pantothenic acid depletes taurine - and taurine is necessary to calm down the brain from glutamate excitotoxicity. I had been taking pantothenic acid for years when my MSG sensitivity developed and I only discovered I think within the last year that it may have been a big part of the problem. I stopped pantothenic acid many months ago, can't remember how long, but recently realized I don't seem to be quite as sensitive as I was to anything MSG-related. One of these days I will get adventurous and try Chinese or Thai for dinner and see what happens!
I ordered taurine 4 months ago and still haven’t had the courage to pull that trigger:cautious:. Taurine is a sulfur-based amino, and I’m having a lot of dysfunction with anything sulfur. I know taurine is critical to many neuro functions and hope to screw up the courage soon. Thanks for the assist / reminder. The only pantothenic acid I would get in concentrated, non-food form would be from my B-vit, which I can no longer tolerate. At least for now. Sigh.

Not sure if you’ve had time (given the masses of research required to find ways to just dampen and slow the overt effects and systemic drags of ME/CFS) to investigate all the many, many sources of glutamate in our food supply …. have attached two links that were really helpful to me early on in terms of sorting out what I was reacting to, since I’d already cut out all Chinese, Thai, and Japanese food (sniffle, wheeze, sob:aghhh:) but was still suffering the slings and arrows of what I finally determined were glutamate reactions. Later I realized that it was much wider and deeper than just that, and that glutamate, while a contributing factor, wasn’t the final answer. Which eventually, down a long and winding road, brought me to this forum:).

And you might find this helpful, it's calming (at least for the first several weeks . . . ): https://forums.phoenixrising.me/ind...-to-calm-balance-ans-stimulate-thyroid.52258/
I really enjoyed that thread, and will give the exercise a shot when I’m not so tired and still in need of sleep. Just in case. Like you, I have thyroid issues, though for various reasons, I’m dealing with it without any of the standard thyroid meds. Long story, and this is already loooong. I have a gift.

Here are the links, probably nothing you don’t already know, but you’ve provided me so much valuable info, it would please me hugely (another good word ruined :oops:) enormously if I could give back something that was useful to you.

http://www.msgmyth.com/hidden_names_for_msg.html

http://msgtruth.org/2018/05/05/what-foods-should-i-avoid/
 

Wishful

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since I’d already cut out all Chinese, Thai, and Japanese food (sniffle, wheeze, sob:aghhh:

Yah, the loss of favourite foods is one of the many negatives of ME. I don't have a problem with MSG, but I keep finding more foods that give me problems for some reason of another. It's been many years since I had restaurant food. :aghhh::aghhh::aghhh:
 

YippeeKi YOW !!

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Yah, the loss of favourite foods is one of the many negatives of ME. I don't have a problem with MSG, but I keep finding more foods that give me problems for some reason of another. It's been many years since I had restaurant food. :aghhh::aghhh::aghhh:
I totally feel your pain:(:(. Restaurant food, takeout food, convenience food, taco trucks, pizza, packaged anything, short-cuts in cooking, long cooking times like succulent pot roasts and stews...... So effing dreary :grumpy::grumpy::grumpy::aghhh::aghhh::(
 
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Mary

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Generally I'm on the fence about the idea of quid pro quo reviews, though. Makes me itch:nervous:.
I wouldn't worry about it - free product! I've done that once or twice with Bulk Supplements, that may be how I first got their magnolia bark. As I said above, I'd tried I think 2 other brands which did next to nothing, but this stuff was amazing. But I don't have all the sensitivities that you do either, so I know it's a crap shoot for you. :cautious:

Am experimenting right now with seeing if the boost I gave to MK7 and MK4 will somehow help usher calcium into less damaging areas, will definitely let you know how that shakes out, and if it helps :nerd:.
Please do, the more info the better :)
I ordered taurine 4 months ago and still haven’t had the courage to pull that trigger:cautious:.
B
I have mixed feelings about taurine. I think it helps me initially with sleep but after a few days it gets worse. I finally realized I think it revs up my thyroid some, not positive, but I think that's what happens, which causes bad insomnia at 3:00 a.m., so have had to stop it again. So you're probably wise to be cautious with it. But it does help a lot of people ;with sleep, so who knows, it might help you - but it is powerful stuff.
…. have attached two links that were really helpful to me early on in terms of sorting out what I was reacting to, since I’d already cut out all Chinese, Thai, and Japanese food (sniffle, wheeze, sob:aghhh:) but was still suffering the slings and arrows of what I finally determined were glutamate reactions.
Yeah, I'm familiar with those :bang-head: I got to where the only things I could eat at night were plain foods I fixed myself, nothing processed, no canned foods, no sauces, things you wouldn't even think of - mayonnaise, mustard (had vinegar or citric acid), off limits. I had mustard on a sandwich which kept me up till 2:00 a.m. Anything processed would give me killer insomnia. But I had mustard on something just last week at night, and had no problem. I dared to make a green curry (with a green curry paste that did not have anything msg related) but I added some fish sauce which I have been avoiding, and there was no problem again. I am beginning to think that my msg-sensitivity may have been due to taking pantothenic acid for so many years and it might be easing - it's the first time in a long time that something's gotten better! :sluggish: But have not done the acid test yet, eating out, or just using soy sauce - I'm going to try it one of these days.

Can you tolerate vitamin C? High doses have now gotten me 2 - 3 (I forget which) pretty good nights of sleep. Here's a study which talks about how vitamin C helps with glutamate toxicity: https://www.ncbi.nlm.nih.gov/pubmed/25701025
When I first took high-dose vitamin C, it helped with sleep a lot, but then I ended up getting quite achy and tired - too acidic. So now I'm watching out for that and adding in potassium bicarbonate and/or sodium bicarb. It's a chemistry experiment! But the vitamin C really is helping. I hope I can stay on it, and it doesn't leave me drugged! I just found this thread I did almost two years ago about vitamin C ameliorating neurotoxicty. And it mentions that it might also help with MCAS - I'd forgotten about that.

Take care --
 

Murph

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I also abandoned a diet I had been following after reading about leo's success. I was eating very few carbs (i'm reluctant to say I was a full on keto diet because I did not take ketones and I also know the level of vigilance of the devotees on their carb intake is at another level).

I was also reducing total calories (I definitely lost weight, which was good.)

But I got very sick. I never get sick. But I picked up a genuine true infection which took a long time (~4 weeks) to clear.

During my recovery I had to go back to simple sugars and I was weakened at the end. I had no desire to go back to dieting! This was in July and I'm arguably still not back to my old self.
 

YippeeKi YOW !!

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wouldn't worry about it - free product! I've done that once or twice with Bulk Supplements, that may be how I first got their magnolia bark.
Oddly, it was magnolia bark I was considering trading my high-minded principles :rolleyes: in on, we seem to run on parallel tracks. I’m glad you understand the leeriness that comes with having slammed into the hot stove over and over again … will let you know when I work up the courage :nervous::nervous:, and what the results were. Any amount of sleep at all would be a blessing:angel:. I can’t take any sleep aid known to man, including every form of herb, they all clear through the same P450 pathway that clears benzos and they activate and weaken GABA while apparently throwing all their substantial weight over to glute….. life’s really a bugger. Even the old standby Unisom precipitates really ugly ME reactions :ill::ill:….. So I’m totally screwed, sleep-wise. Melatonin and mg and a wing and a prayer wheel.

I think my hesitation over magnolia bark has to do with a vague memory that it, too, clears thru a P450 liver enzyme that’s connected to GABA/Glute/benzos. Will have to redo all that research, since my memory seems to be mostly read only :confused:, and my computer is clogged and wheezing under the weight of thousands upon thousands of files dedicated to the hundreds of research projects, with the obvious effect that finding almost anything is more trouble than it’s worth :mad:o_O ….

Please do, the more info the better :)
“More” seems to be my specialty, so no worries ….. full disclosure, right down to the forms of MK7 and MK4 I use (can’t take anything in soft gels, too much glute ….. God, I’ve become the Princess and the Pea) and the times that I take it and in what amounts ….. which reminds me, damn!!! I forgot and took the M’s with my tiny dose of D3 ….. drat and damn and hellfire:fire::fire:.


I have mixed feelings about taurine. I think it helps me initially with sleep but after a few days it gets worse.
Yeah, I really wish I’d given it another few more months of careful thought before I hit the buy button. It was one of those desperation Hail Mary's that overtake me from time to time :thumbdown:. Between the sulfury issues and the other possibilities with taurine, every time I reach for the bottle with full resolve, I set it down and slowly, slowly back away …
Yeah, I'm familiar with those :bang-head: I got to where the only things I could eat at night were plain foods I fixed myself, nothing processed, no canned foods, no sauces, things you wouldn't even think of - mayonnaise, mustard (had vinegar or citric acid), off limits. I had mustard on a sandwich which kept me up till 2:00 a.m. Anything processed would give me killer insomnia.
Oh, believe me, I’ve thought of them. Perforce :(. Also ketchup. I really miss them. Also the occasional wicked pleasure of a hamburger or garlic pizza. If I told you what I’m living on right now :sluggish:……


But I had mustard on something just last week at night, and had no problem. I dared to make a green curry (with a green curry paste that did not have anything msg related) but I added some fish sauce which I have been avoiding, and there was no problem again.
That’s phenomenal :woot:!!! “Normal” people would never understand that feeling of liberation and joy :D, but I do, and so would a lot of people on this forum, and I hope it’s a permanent change, and, on the selfish side, that it holds out the same promise for me :rolleyes: …..


But have not done the acid test yet, eating out, or just using soy sauce - I'm going to try it one of these days.
If you wanna give soy sauce a shot, search out Kikkoman ….. it’s the only brand that creates soy sauce the old-fashioned way, thru relatively long fermentation and without fillers and flavorings like molasses and vinegar and 3 forms of MSG, other than the usual. I used it a lot in cooking, and would buy a couple of liter bottles and let them age til they got thick and dense with layers of flavor …. it used to be really easy to find, but has become relatively rare, at least the last time I was out and about, which was … uh, quite a while ago :redface:.

Can you tolerate vitamin C? High doses have now gotten me 2 - 3 (I forget which) pretty good nights of sleep. Here's a study which talks about how vitamin C helps with glutamate toxicity: https://www.ncbi.nlm.nih.gov/pubmed/25701025
When I first took high-dose vitamin C, it helped with sleep a lot, but then I ended up getting quite achy and tired - too acidic.
I used a lot of C early on, but tapered it back a bit when it seemed that it actually damaged sleep, partly thru stimulating my bladder at about 230 or 300 AM, so if I was getting sleep, it was interrupted by that maddening, insistent stinging pressure that just won’t go away. I still get it a few nites a month :bang-head::bang-head:, particularly if I forget and take C (or pretty much anything you can name except mag) too late. Like mag, I take it in lower doses (well, not by normal standards, about 500 mgs a dose) several times a day for a usual total of 4-5000 mgs. I’m not sure if I ever knew about its effects on glute toxicity, but I do now, and thank you!

I just found this thread I did almost two years ago about vitamin C ameliorating neurotoxicty. And it mentions that it might also help with MCAS - I'd forgotten about that.
I’ll be tearing into that link later tonight, and thanks for that. I think I read about C and MCAS, but I'm so unwilling right now to take on yet another potential set of .... uh, let's call them challenges, yeah, that's the ticket, challenges. Not problems. Challenges ... that I just kept whistling and walking on by :whistle::whistle:......

Something I’m experimenting with now, and will happily report back to you on, is New Zealand freeze-dried beef liver ….. after everything that the medical community did to my system (those bas .. tions of righteous society), it’s hard to believe that my liver didn’t take a massive whumping, and I’m embarrassed that it’s taken me this long to tumble onto that. My one concern (and I don’t think it would be a problem for you, but quien sabe, eh?) is that is only comes in gelatin caps (not soft gels at least), and at 3 to 6 or more caps a day (6 equals 1 oz of liver) that’s a lot of potential systemic poison for me :eek:. But I’m praying for a miracle, and I think I'm due…..yeah, like life works that way.

My own small triumph :trophy:: after living on no liquids other than 3 liters of water a day for longer than I care to emphasize by putting it in writing, and giving up a glass of wine with dinner :wine: (or with anything else, like a glowy sunset or a glorious piece of music), I was desperate for something, anything, different, and hesitantly tried a lovely icy cold glass of Blue Sky root beer, which has 3 ingredients: water, (the dread and ever suspect) natural flavors, pure cane sugar. I seem to have tolerated it well, and having that little treat was joy beyond description :D:woot:…… which is why I understand your triumph with the fish sauce. It's these little victories that help to keep us fighting on :ninja:.

:hug:
Stay good !!!
 

Wishful

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If I told you what I’m living on right now :sluggish:……

Worse than nothing but cornstarch and water (made as pancakes) for many months? I was trying to avoid tryptophan, but never managed to deplete myself enough to make a difference. I did discover that if you use boiling water to mix the batter, you get a much better texture than mixing with cool water. Oh, the desperation for something with actual flavour... :nervous:

The more things I drop from my diet, the easier it is to notice even small worsenings from remaining foods. Princess and the pea indeed. I'm getting more cravings for flavour and variety again.
 

YippeeKi YOW !!

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Worse than nothing but cornstarch and water (made as pancakes) for many months?
Wow!!! That's incredibly inventive!!! And depressing in relation to the permutations and gymnastics we have to go thru to survive all this. I'm thinking of trying it :) ...

Oh, the desperation for something with actual flavour... :nervous:
I so totally hear you :woot: !!!
 

Mary

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Hi @YippeeKi YOW !! - sorry to take so long to reply, energy has been in short supply lately.
I think my hesitation over magnolia bark has to do with a vague memory that it, too, clears thru a P450 liver enzyme that’s connected to GABA/Glute/benzos.
That's rough you're so sensitive to so many things. I'm pretty sensitive, but not like you. I found this and can't make heads or tails of it, but you probably can! https://www.ncbi.nlm.nih.gov/pubmed/24005963 There are more studies about this (which baffle me as well! :confused:)
That’s phenomenal :woot:!!! “Normal” people would never understand that feeling of liberation and joy :D, but I do, and so would a lot of people on this forum, and I hope it’s a permanent change, and, on the selfish side, that it holds out the same promise for me :rolleyes: …..
I'm beginning to think my body is really starting to tolerate all that stuff after so many problems for so long, and it really seems to be related to stopping the pantothenic acid which depleted taurine . . . I bet your body will return to health, I think we all can, it's just finding the d*m pathway to it, but I think it's there.

About vitamin C (ascorbic acid) - it is making me acidic, thus achey and tired, and yet helps with sleep so much! :bang-head: So now am taking potassium bicarb and sodium bicarb (in between meals) and energy is coming back. I did try sodium ascorbate before, and it did not make me acidic, but unfortunately did not help with sleep either (found an old thread I did on this). I don't know why, it's still vitamin C. And I think the ascorbic acid is making me pee more (dang!) but I am going back to sleep with it. So it's an ongoing lab experiment.

Something I’m experimenting with now, and will happily report back to you on, is New Zealand freeze-dried beef liver ….. after everything that the medical community did to my system (those bas .. tions of righteous society), it’s hard to believe that my liver didn’t take a massive whumping, and I’m embarrassed that it’s taken me this long to tumble onto that. My one concern (and I don’t think it would be a problem for you, but quien sabe, eh?) is that is only comes in gelatin caps (not soft gels at least), and at 3 to 6 or more caps a day (6 equals 1 oz of liver) that’s a lot of potential systemic poison for me :eek:. But I’m praying for a miracle, and I think I'm due…..yeah, like life works that way.
Yeah, I think we're all due for a miracle! as if . . . I would love to hear about your experiment with New Zealand freeze-dried beef liver. I remember reading about people having good results with Nexavir but of course it's not available any more, I think. the New Zealand beef liver comes in a powder, you don't have to get it in capsule form, e.g.: https://www.iherb.com/pr/Nutricolog...VAsZkCh2dygwyEAQYBCABEgIY8_D_BwE&gclsrc=aw.ds
tried a lovely icy cold glass of Blue Sky root beer, which has 3 ingredients: water, (the dread and ever suspect) natural flavors, pure cane sugar. I seem to have tolerated it well, and having that little treat was joy beyond description :D:woot:
:thumbsup::balloons::nerd:;)