BCAAs reducing PEM

[SlamDancin]

@Mary So glad to hear they’ve given you such sustained benefits that’s impressive. I also have been seeing IV “post-Myers cocktail” with Glutathione has also given a few patients I’ve been speaking to some sustained, albeit less than what they’d like, benefits. I believe that has more to do with getting strong AO’s like GSH into the mitochondria. You’ve tried so many things, I might as well ask if you’ve ever been able to try IV nutrients as well?

Do you remember Jesse that used to post here?
He was doing alright on IVIg and the IV nutrients but apparently had such drastic benefits from plasmapharesis ($$$$) that he was able to return to work. That would be an interesting follow up,
I’ll see if I can get in touch privately and see what I can find out and post publicly. It’s rare to see such a drastic remission but it’s a very hard procedure to get. Again sorry, I will do a little more research and see if I can’t tie the two ideas here together. I’m a little scatterbrained because some of these neuropathies are even less understood than ME/CFS seemingly and the treatments are Rituximab, Cyclo and IVIg. I feel like this a merry go round of treatments I can’t get that may or may not help rare underlying conditions that may or may not be culminating in ME/CFS, or does it simply mimic the symptoms to fit the diagnosis of ME. I’m going to end this stream of conciousness by just saying to @Mary
I’m glad you’re still doing well on the regimen you
created for yourself. There’s a lot of power and courage in that!!

 

[Mary]

I do have trouble with large capsules...lodging in the throat..so That part concerns me.

When my phosphorous is low, pills get stuck in my throat - it's called dysphagia. I just did a thread about phosphorous and mood and fatigue here. Ordinarily I'm able to swallow pills just fine, but when I start having trouble, for me it's a sign that my phosphorous is low again.

surely I'll live.

I hope so! (I'm sure you will! )

Yeah, maybe the plain unflavored bulk BCAAs are the way to go for you - good luck!

 

[Rufous McKinney]

I just did a thread about phosphorous and mood and fatigue here.

I read that, and thank you....seems like I eat alot of the phosphorous foods....

Regarding necks which contain throats....I choke on tiny pills too. My whole neck is out of alignment, and I feel its caused by this physical- alignment problem. I have a large adams apple sticking out: it did not use to be there, I'm a female.

the first paragraph of a famous New Yorker article on Gerontology- starts with the Choke.

 

[Rufous McKinney]

Yeah, maybe the plain unflavored bulk BCAAs are the way to go for you - good luck!

I'm trying to psych myself up for the Bitter Choke. I'm going to try dissolve first in small amount of warm water, then dilute and chug- see what happens.

 

[Mary]

Do you feel like BCAA’s drop your blood sugar significantly, especially when you take them first thing in the morning?

No, they don't seem to drop my blood sugar at all.

do you have muscle weakness, especially in the limbs, hand or feet? Neuropathy that you know of? Have you ever tried IVIg?

No, I don't have muscle weakness and no neuropathies that I'm aware of. I've never tried IVIG though have thought about it a little mainly because my immune system is weak. I get sick every time I crash, I used to be sick for weeks at a time after crashing but andrographis has helped me a lot with this. But I have to take it almost daily. My WBC has been low for over 20 years. But I'm getting by with the andrographis so have not thought too much about it.

You’ve tried so many things, I might as well ask if you’ve ever been able to try IV nutrients as well?

No I haven't. Part of it's cost. Any doctor who would do this, I'd have to pay out-of-pocket for, and I'd have to pay out-of-pocket for the IV's. And I'm pretty sure I"m getting a lot of the same nutrients on my own. Like thiamine has helped me a lot, though it led to hypophosphatemia (refeeding syndrome) so I've had to start taking a monosodium phosphate supplement, but that's okay, it's working. Things like that. I take a high dose sublingual B12 and that works, methylfolate (which revealed hyperkalemia so I take potassium daily which has helped a lot). and other things, the BCAAs, P-5-P, creatine hydrochloride I won't do a whole list here but I think it's a pretty good regimen. When I'm not sick or crashed, I feel fairly well, only my energy envelope is just too small and won't increase no matter what I've tried.

Do you remember Jesse that used to post here?

I do remember Jesse, and I have heard he's back at work. I didn't realize he did plasmapharesis, it sounds like it's very expensive though. So it sounds like you have major issues with neuropathies, and i don't though we both have ME/CFS. There are so many variables with this illness!

Muscle testing has been invaluable to me in helping to figure out what is good for me and what isn't, and how much of what to take. There's still a lot of trial and error but overall I think I've done pretty well with it. I don't think I could have gotten to where I am without muscle testing. Let me know if you'd like to know more --

 

[Rufous McKinney]

Muscle testing has been invaluable to me in helping to figure out what is good for me and what isn't, and how much of what to take.

Do you have a particular muscle testing method that you use?

I should try this more- I seem to be somehow not very good at accessing the effects or introducing stuff.

I have added: the baking soda first thing in some water. Wonder what thats doing?

I got ribose. Can't tell anything.

I'm so off my protocols after the stomach flu- I'm not even on the chinese herbs I've taken for 10 years. Maybe its good, this break in taking stuff.

Its all just a big running together blurr. Better just- seems elusive.

 

[Mary]

Do you have a particular muscle testing method that you use?

I do. I came up with it after having muscle testing done successfully on me by chiropractors for several years. They helped me so much, e.g., with weak adrenals, got my digestion sorted out - I had several digestive problems that are resolved (sluggish gallbladder, toxic liver, low stomach acid). My digestion right now is good.

Have you ever had a practitioner of some sort do muscle testing on you? I don't recommend anyone try to do it on themselves initially. It can be subtle and there are things to be aware of - e.g., your mental state can affect the outcome! If a person wants a particular result badly, they'll get it, but it may not be accurate. So you have to empty your mind of all expectations when doing it. There's also something called reversing polarity where strong is actually weak and vice versa. I used to do MT on my sister and sometimes we'd get puzzling results until I remembered to check her polarity, and voila! She'd be reversed a lot.

I'd suggest watching some youtube videos about it, and try to find someone knowledgeable who can do it with you. They can check all your supplements and also the doses you're taking. And then after awhile, you might give it a try yourself. I press on one of my fingers while doing the testing, sort of a surrogate arm. There are several different techniques for doing it.

 

[Rufous McKinney]

I'm so off my protocols after the stomach flu- I'm not even on the chinese herbs I've taken for 10 years. Maybe its good, this break in taking stuff.

Mostly I'm focused right now on trying to eat...and trying to get in more vegetables and still I can't chew much.

I have managed to eat some more vegetables than normal. So thats supposed to lead to a fantastic result.

 

[Rufous McKinney]

They can check all your supplements and also the doses you're taking

so do you take, say : one capsule of the new thing you wish to try and "muscle test that"?

Or are you using the whole JAR of capsules and testing that? Does that matter?

If someone is helping, you can introduce blinding- like put the thing your testing into a plain container, so nobody knows what is being tested.

How many tests do you run at one time?

How do you test dosage? By having the product in differing dosages?

 

[Mary]

Or are you using the whole JAR of capsules and testing that? Does that matter?

I generally hold the whole jar and see if I go weak or strong.

After first determining that someone tests strong for something, then I generally have them hold one pill/tablet, test, if they go weak, then add another, and keep adding until they test strong. Again, this is not the initial testing to see if they test strong for a certain substance.

Yeah, you can do blinding even by yourself. When I'm trying something new and I'm unsure I'm about my results, I'll often go see my chiropractor and just double check and see what result he gets, and the vast majority of the time, we do get the same results, which is encouraging.

I run as many tests as I want at one time. I'll test several different things individually if I have several different things to test. It doesn't seem to make any difference.

But I will stress again that I strongly recommend someone new to this have someone knowledgeable and experienced to do it for you, until you begin to get a real feel for how it should work.

btw, I didn't "believe" in muscle testing the first time I had it done. It was brand new to me. But I'd been getting sick for 7 years with NO help from several different doctors, so I had nothing to lose except $50 so was willing to give it a try. I've seen several people say they don't "believe" in it so they won't try it. Well, belief has nothing to do with it. I was desperate. It was non-toxic and not too expensive - I really had no expectations of it, but thought what the heck, and am so glad I did.

 

[Rufous McKinney]

I've done it occassionally over the years. I also at times use a pendulum.... And there was no doubt we needed that jar of peanut butter, we found miraculously in Oaxaca Mexico.

So I think there is something to it, and its worth investigating..

Any chance you have Virgo energy? (your incredibly astute...at this stuff).

 

[Rufous McKinney]

Yeah, maybe the plain unflavored bulk BCAAs are the way to go for you - good luck!

Well, that was much ado about nothing...I just placed one teasp of BCAA powder into some warmed water, then diluted it with some room temperatured- about 1/2 a cup....and just drank it and it was fine...could hardly taste it.

Thanks Shoshana for the warming tip...it dissolved well that way.

 

[ellie84]

Very interesting thread. When I used to go to the gym, my dietician suggested taking BCAAs to counteract the drop in blood sugar I used to have sometime after about 1 hour from starting physical activity (I suffer from reactive hypoglycemia). And it was working. I must say BCAAs are the only supplement, of the dozens of supplements I tried in my life, that ever had a tangible effect (besides one other, which had an effect, but not the desired one).
I don't know what's the physiological mechanism under this and I never actually measured my blood sugar in the process, but I'm pretty sure BCAAs help regulate my wonky glucose metabolism. If I ever manage to go back to the gym again I could do an empirical test with the glucometer.
However, thanks to the information in this thread I want to try taking BCAAs for muscle pain. This might be TMI, but yesterday I had to do an abdomen ultrasound so on Sunday I had to do an enema (sodium phosphate) and I don't know what happened, but as soon as I stood up from the WC my usual back pain was higher and yesterday I woke up with my whole body hurting a lot, like when I had DOMS from the gym, and it's still all sore. I started taking BCAAs today... hope they help, because the painkiller I have at the moment has never done anything for me.
(Still wondering what does sodium phosphate in my butt or an enema have to do with muscle soreness at all. My body is strange, very strange! )

 

[Rufous McKinney]

I don't know what's the physiological mechanism under this and I never actually measured my blood sugar in the process, but I'm pretty sure BCAAs help regulate my wonky glucose metabolism.

I think I noticed that effect as well. If I take some, I can go about another hour without having to eat again...I seem to nibble constantly...and my Blood sugar is erratic again, carbs and guests and PEM.

so I was taking it because in theory,BCAAs may reduce some of the Tryptophan in the Brain not breaking down problem, so there is a bit less PEM, and symptoms are less intense.

I had alot of worsening neurological type symptoms that seemed to improve on BCAA's..like tachycardia, lighthead and dizzy, even tho my BP is high...ears ringing...helped with some of that, feel a bit less poisoned.

 

[Wayne]

I need a little help. I "seem" to recall somebody made a rather remarkable post (not sure if on this thread)about their father who started taking Leucine. As I recall, this man was in his upper 80's, and was taking it for some kind of medical reason. What I remember most was that this elderly man noticed a significant improvement in cognitive function from taking it--although that was not his original intent in taking it.

He didn't really have dementia to begin, and kept himself quite busy cognitively as he aged. But adding Leucine ended up being a big boost for his cognitive function. I've thought about that post several times since reading it, but can't find it in my Bookmarks, or when using the advanced search function. Does anybody else recall this post? And... would you know how I might be able to locate it? -- Thanks!

 

[Rufous McKinney]

I "seem" to recall somebody made a rather remarkable post (not sure if on this thread)about their father who started taking Leucine

I think I recall that as well....a few months back..sounds familiar.

 

[ellie84]

Guys... I took BCAAs for 2 days and today I forgot. And I think I forgot because yesterday I read in the enema leaflet that it can cause hypokalemia, so I bought a potassium and magnesium supplement and within 1 hour of taking it I felt better. This morning I've taken it again and again I felt less sore. So I guess all that muscle soreness was caused by potassium loss from the enema? I wonder if it has always been this the cause of at least some of my muscle pain.
However, I will try to remember taking BCAAs.

 

[ellie84]

Can one take BCAAs when eating or is it useless? I always forget about stuff that has to be taken before eating and I don't have regular meal times, so I can't set an alarm.

 

[andyguitar]

Can one take BCAAs when eating or is it useless?

No it is not useless. Best NOT to take them after about 6pm as they can keep you awake.

 

[Rufous McKinney]

Can one take BCAAs when eating or is it useless? I always forget about stuff that has to be taken before eating and I don't have regular meal times, so I can't set an alarm.

I'm often forgetting which is who...but the BCAA-s are best taken by themselves...so they absorb ...then eat something say an hour later (I eat something every 2-3 hours...most of the time...nibble nibble)