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Genius Wanted ~ Anyone have a big picture theory?

Catseye

Senior Member
Messages
109
Location
SW Florida
susan and mitochondria fuels

Susan,

I did an amino acid profile a few years ago, but it's kind of a waste. I started taking lots of aminos long before I knew it was LG causing everything. I still take lots of them.

While people are contemplating or doing their gut fix, there are ways to increase energy considerably by taking the supplements involved in the Krebs cycle. I took all the mitochondria supps I could get my hands on and they got me out of bed. I also took all the neurotransmitter precursors which helped me google for answers.

Lots of the supplements intersect and the most important ones for energy and other things are the following. We are deficient in nutrients because digestion isn't working. Look at the supplements as concentrated food. Give the body what it's starving for and it will be able to function better. You can't take everything but this is the minimum. If you just take a few of these you might not get the results you want. I played around with a few things here and there but it was only when I took them all at the same time that I got dramatic results.

Mitochondria

Mitochondria are rod-shaped organelles that can be considered the power generators of the cell, converting oxygen and nutrients into adenosine triphosphate (ATP). ATP is the chemical energy "currency" of the cell that powers the cell's metabolic activities. This process is called aerobic respiration and is the reason animals breathe oxygen. Without mitochondria (singular, mitochondrion), higher animals would likely not exist because their cells would only be able to obtain energy from anaerobic respiration (in the absence of oxygen), a process much less efficient than aerobic respiration.

Incidentally, when your mitochondria are damaged and starved for the chemicals they need and/or your oxygen transport ability of your blood gets too low, the cells will start anaerobic energy production. When you can't move and you're convinced your next breath is going to be your last, this is what is happening. When metabolizing glucose aerobically, the cell's mitochondria obtain 36 ATP's per glucose molecule, but anaerobically, the cells only produce 2 ATP's per glucose molecule. This explains a lot, huh? If your energy can get so depleted that you're floored, you have mitochondrial malfunction.

Mitochondria are the sites of respiration, and generate chemical energy in the form of ATP by metabolizing sugars, fats, and other chemical fuels (including coq10, carnitine, ribose, B vitamins and magnesium) with the assistance of molecular oxygen.

supps I use for mitos:

Krebs Cycle Chelates, a chelated mineral supp by Enzymatic Therapy

Country Life Coenzyme B Complex Caps - contains bioactive forms of some B vitamins, this means liver doesn't have to convert them, remember liver is struggling and is responsible for many of our symptoms

Coenzyme Q10 - part of the energy cycle, mitos need these and esp the heart which has more mitochondria concentrated there than anywhere else, that's why it keeps beating while the rest of our body crashes - use in gel cap form NOT powdered capsule, is better absorbed that way and this is very important, I was using 100 mg gelcaps up to 6 times per day

Magnesium malate, taurate, glycinate are the forms of magnesium to get, they are better absorbed, magnesium oxide is useless, stay away, it's used in laxatives because it passes through the body, crappy vitamins like Centrum and One A Day have it as their sole source of mag, get a good vitamin from the health food store, Source Naturals makes Magnesium Malate which is my favorite - it contains malic acid which helps with the energy cycle, too

Alive Whole Food Energizer multivitamin or any good one from the health food store

folate - bioactive form of B9, is not the same as folic acid, hard to find, holistichealth has folapro, take 1/4 pill per day to start

nadh - involved in energy production, another bioactive form of B vitamin

acetyl l carnitine - amino acid involved in energy cycle, bodybuilders use it a lot, I got a lot of tips from bodybuilding websites, acetyl l carnitine is the more absorbable form of carnitine

ribose - a sugar made by the body, use caution if hypoglycemic, I was using 5 g in the morning and evening but you could try a few 500 mg pills

Biotec Extra Energy Enzymes - these are VERY IMPORTANT! If you take the above substances to increase your ATP production in the mitochondria, you will crash if you don't have your antioxidant enzymes in place to scavenge peroxynitrite and superoxide dismutase - all this according to Cheney - peroxynitrite is such a destructive and dangerous free radical that it can destroy tissue, what happens when we crash (at least a mito crash as opposed to an adrenal crash) is that the body shuts down energy production to stop the production of peroxynitrite which is a byproduct of the energy cycle, the body will shift to anaerobic energy production instead of aerobic - this is when you can't move and feel like you're dying, for a comparison realize that the mitos make 36 ATP molecules per glucose molecule during regular aerobic energy production but only 2 ATPs per glucose molecule during anaerobic energy production, do not skimp on these enzymes, it could cost you a crash and you'll be reluctant to try any more supplements

Coenzyme A is another important enzyme in the body and it is involved in the transport of fatty acids into the mitochondria and also to and from cells. Coenzyme A is very unstable and is not available in supplement form. However, the precursors that your body needs to produce Coenzyme A are available. Here's my doses but do your own research at some point:

pantethine - vitamin B5 is converted by the body into this form 50mg 3x per day

pantothenic acid - is vitamin B5, 150 mg 3x per day

calcium pyruvate - 750 mg 3x per day

magnesium malate - I get different form of mag from different sources, you want 400-800 mg per day

acetyl l carnitine - most easily absorbable and usable form of carnitine, 500 mg 3x per day

L cysteine - many people use N Acetyl Cysteine because it is also a precursor to glutathione 250 mg 3x per day or more

calcium - I get from different sources, 1000 mg per day

glutathione is deficient, too, so take the precursors, no doubt everyone has heard of glutathione by now:

NAC, glycine, L glutamate (glutamic acid) - I have amino acid blends that contain the L glutamate and I'm taking NAC and glycine pills, too


These supplements should help tremendously with energy and how you feel, I still take many of these. Do not start running around if you feel good, you can still crash if you go past your point of no return. Just pay attention and increase activity very slowly. Sometimes you don't know what you've done until the next day. Keep that in mind. You can only do so much with a quick remedy like this.

All of the above are basically harmless, I'm not sure of any drug interactions but I don't think there are any. These are all things that are in a healthy body all the time. I can't experiment for you, you'll have to be your own guinea pig. I started taking most of these all at once except for the Biotec Extra Energy Enzymes, I didn't find out about those for months. There is another brand that uses gliadin for the enzymes - this is the gluten protein molecule - do not use! not worth the risk!:eek:
 

Catseye

Senior Member
Messages
109
Location
SW Florida
cj

cj,

Normal bm's really don't mean much. I had severe dysbiosis and had normal bm's. That's why this throws people. People think if you have intestinal or digestive problems, you would be experiencing bad bm's, symptoms of indigestion, stomach aches, abdominal cramping, diarrhea, etc. But that is not necessarily so. Stuff can be going in and coming out like normal and you would never know that the bad bacteria have invaded you and taken over the gut lining like a 911 hijacker. There is deadly stuff happening down there and we are clueless. Dysbiosis and/or food intolerance could also be causing your high blood pressure.

These are the kinds of things I'm going to go to school to learn how to treat. You can manipulate the body quite effectively with diet and supplements without resorting to harmful drugs.
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
Catseye,
Thanks so much for that outline. I dont know how I am going to be able to do all this stuff as my body rejects some vitamins. It did not like carnitine or d ribose. I have to introduce stuff very sloooooooly like and 1/8 a pill a day.

I AGREE wholeheartedly with you that people dont recognize they have a gut problem. 12 yrs ago when I feel ill, I did not take gut issues seriously altho Newcastle Uni had come out with testing here..I felt fine. Then I got blasto cystis homonos and for the next 3 yrs I was totally bedridden after it.. Still I thought after that was treated I did not have a gut problem.

Then In 2004 I was so ill and went repeatedly to the Doc with gut pain, loss of appetite and he could do nothing for me. A naturopath told me I had Dysbiois and I took a Thorne product and and Keffir it cleared for a time but returned. Then I did a stool test and it revealed all.

I have been going along with the right probiotics thinking now I had everything under control until this latest test. My Doc says they are behind int their testing here so the US test has picked up so much more. The nausea and body itching are driving me crazy and I have to get my treatment plan to morrow.....trouble is taking this stuff. I have to get rid of a huge dose of candida, then get the gut bacteria, then the Krebs stuff......

Over the years we take this pill and that pill, but it is never synergistically.....always only PART of a treatment process as we never stumble on any Doc who can give us the full treatment plan, who has the expertise to order the right tests, then understand them!!!! then give the right treatment. ...always dyke plugging.

The test results are really so complicated it is diffficult for a normal person to understand them.

What do you eat for breakfast....steak and veges.?...:seems nothing else to eat.
 

Catseye

Senior Member
Messages
109
Location
SW Florida
Susan, for supplement sensitive liver

What kind of symptoms do you get when you take certain vitamins? And what vitamin sets you off? Just the carnitine and ribose? Did you try acetyl l carnitine?

It's likely that your liver is supersensitive to everything because it's been overwhelmed, mine was too. Have you tried any liver cleanse pills? I like Ultimate Liver Cleanse and Chinese bitters. Chinese bitters is a mixture of gentian root and bupleurum root. I buy tincture bottles of each. One dropperful of each in a glass of water and drink. It tastes awful but it gives relief pretty quick. I was doing that 3 times a day a long time ago. My liver is doing much better now. Now I just take an Ultimate Liver Cleanse once in awhile, like if I have to take a pain pill.

I should have probably added digestive enzymes to the above. You will alleviate much of the liver's burden if you just take digestive aids. Betaine hcl is a beet derived form of the same kind of acid the stomach uses. You only need acid to digest fats and concentrated proteins like meat, fish, chicken and eggs. So take betaine hcl with every protein meal and take digestive enzymes with EVERY meal. Betaine hcl usually comes in 650 mg pills. I was taking 3 of these with a protein meal when I started. Now I only use one. Try one and if that doesn't burn, then try 2 the next day with your protein meal. If that doesn't burn, then try 3 the next day with your protein meal. When it gives you heartburn, then back off to the lesser dose. I was taking just one betaine hcl pill when I ate raw nuts. I found that raw nuts would really bother my liver without the betaine hcl and digestive enzymes.

If you take digestive enzymes, betaine hcl and clean your liver up a bit for a few days with the cleanse pills or the bitters, you should have no problem with the supplements.

I was very lucky to find Dr. Farr. He does the individualized treatment like we all need. I think it's vital to have an expert. Otherwise you could just linger on forever like this, guessing about everything and trying every naturopathic diet you come across. I improved a good bit by myself with supplements, but I was still driving blind.

Breakfast for me is a fried egg with runny yolk, a small piece of rotisserie chicken and lately, broccoli. It's almost always egg, chicken and veggies. All the old breakfast foods are out: cereal, toast, pancakes, waffles, pop tarts, oatmeal, sausage and gravy biscuits, breakfast burritos, hash browns . . . too bad, I'll probably never have them again. I've relearned food and its preparation and there's no going back. We have been soooo lied to about everything - food and medicine included.

I miss desserts after dinner at restaurants. Those are forever gone; too much sugar, bad food combining, etc. I used to love creme brulee, all kinds of mousses, gateau l'orange, cheesecake, key lime pie, OMG I'm just torturing everybody, aren't I? And now I see that restaurants offer these little shot glasses of different desserts so you don't have to decide between two favorites! Those would have been right up my alley. Now I see them as "not worth the risk at all".:eek:
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
results of aminos/hair analysis

Catseye,
It is nausea that stops me from taking a lot of stuff....incredible burping. Literally some of the attacks make me feel I am going to die and come in kind of waves. They can come by taking vitamins/drugs or just by themselves....3 1/2yrs now.

The medical doc/naturopath says my results are the worst he has ever seen in a CFS person.....27 abnormalities out of 40.....my chemistry is just not working.......not methylating. With neurotransitters they are like a basin with the the plug pulled out and the tap continually running, they are having to grab onto anything they can to continue their exhausted supply.

The high levels of chromium, vanadium, lithium are all a response to the chemical imbalance in the body. So once that is balanced the metals will just get detoxed naturally. He formulates his own products with some of the lab recommendations....Mercury was low...so there goes the mercury theory and I have a mouth full of it.

For the candida, he too makes his own herbal formulas. These are superior to drug forms as they skim across the top of the villi in the intestine where as the herbal mix gets right down into the base of the villi to root out the candida....takes longer. He said they believe the candida diet does not work...eat what you like and get the right mix to kill it off. He said it is a difficult job when you have a compomised immune system as it can hide. he said NSAIDS, steroids anti biotics keep it alive.

He gave me a new kind of enzyme to have with meals that metabolizes food better BUT you can eat gluten and casein...it digests it...Lifestyle Enzymes. iherb.com sell some other brands...they must have DDP4 in them as that is what does the trick I think with the gluten.

It has been very worthwhile doing this amino profile as it has brought up remarkable stuff. However he does not have the stool test back but could still see on this test what is happening and gave me probiotics anyway. He will wait till it is in before he formulates the candida herbal mix the one to fix the biochemistry. He mainly specializes in Autism.ADHD and of course CFS with its close connection. It is good he will formulate everything in a just a couple of mixes as I wont be dealing with all these pills. His consults are cheap at $50, guess i will be paying with his mixes.
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
Athene,
Thanks for that but if I take a drug the burping becomes even worse. Its not sulphite...no eggy smell. Flagyl are tough to take. Maybe this doc might have some other miracle stuff I can take.
 

anne_likes_red

Senior Member
Messages
1,103
I haven't had time to read this whole thread

...but want to say that I think the importance of improving things in the gut can't be over estimated. And I think success with some other therapies may be limited until gut issues are addressed.

I'm doing the GAPS (Gut and Psychology Syndrome) protocol and have noticed better improvement on that than on previous various regimes (anti-candida diet, enzyme therapy....elimination diets etc...going back 25 years here.
I came to GAPS via the Specific Carbohydrate Diet, came to the SCD through Autism research and came to Autism research (years ago now) after realising many similarities with the biochemical problems of ME/CFS.

My diet won't cure me, but it seems to help immensely with pain and inflammation, and with fatigue to some degree.
 
Getting ill from flagyl = Lyme Herx

Susan,
I have heard of people using herbal treatments for giradiasis and other parasites, so it may be worth investigating. Flagy is nasty stuff for some people, my mother gets very ill from it.

Athene,

Another Lyme pointer...for your mom! When you treat for Lyme, you get a Herxhiemer-Jaricsh reaction, commonly referred to as a "herx". This is basically a significant increase of current symptoms and maybe some new ones thrown in for good measure. This is due to the die-off of the spirochete, which is nuero-toxic, or toxic to your nervous system.

Read up on Lyme, I had a major die off/ Herx while on Flagyl too. But I then felt better afterwards. And I was on flagyl for many months straight. :eek:

For others, here is Lyme Disease Doctor Guidelines link with symptoms, treatment protocols, etc.

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf
 
When on antibiotics, IBS goes away

Koan,

Antibiotics are supposed to increase bowel symptoms but when I'm on them, my bowels calm down. Being a Canadian, Medical Cannabis (Marijuana) is also an excellent treatment protocol available to you.

Lyme disease, which I have in addition to CFS causes IBS symptoms and antibiotic therapy treats this. So that is one option.

Here is link on a lady with Chron's (severe life threatening side of IBS spectrum) who uses Marijuana very effectively. Do a web search and you'll find more links.

http://www.michellerainey.com/

http://www.medical-marijuana-testimonials.org/Gastro-Intestinal-disorders-and-medical-marijuana.htm

Oh yeah, one other thing: Gluten sensitivity or whatever they call that disease. You have to stop eating gluten and your bowels calm down - could be another thing to look into. I forget the name....brain fog is taking over now.
 
Messages
66
Susan,

I did an amino acid profile a few years ago, but it's kind of a waste. I started taking lots of aminos long before I knew it was LG causing everything. I still take lots of them.

While people are contemplating or doing their gut fix, there are ways to increase energy considerably by taking the supplements involved in the Krebs cycle. I took all the mitochondria supps I could get my hands on and they got me out of bed. I also took all the neurotransmitter precursors which helped me google for answers.

Lots of the supplements intersect and the most important ones for energy and other things are the following. We are deficient in nutrients because digestion isn't working. Look at the supplements as concentrated food. Give the body what it's starving for and it will be able to function better. You can't take everything but this is the minimum. If you just take a few of these you might not get the results you want. I played around with a few things here and there but it was only when I took them all at the same time that I got dramatic results.

Mitochondria

Mitochondria are rod-shaped organelles that can be considered the power generators of the cell, converting oxygen and nutrients into adenosine triphosphate (ATP). ATP is the chemical energy "currency" of the cell that powers the cell's metabolic activities. This process is called aerobic respiration and is the reason animals breathe oxygen. Without mitochondria (singular, mitochondrion), higher animals would likely not exist because their cells would only be able to obtain energy from anaerobic respiration (in the absence of oxygen), a process much less efficient than aerobic respiration.

Incidentally, when your mitochondria are damaged and starved for the chemicals they need and/or your oxygen transport ability of your blood gets too low, the cells will start anaerobic energy production. When you can't move and you're convinced your next breath is going to be your last, this is what is happening. When metabolizing glucose aerobically, the cell's mitochondria obtain 36 ATP's per glucose molecule, but anaerobically, the cells only produce 2 ATP's per glucose molecule. This explains a lot, huh? If your energy can get so depleted that you're floored, you have mitochondrial malfunction.

Mitochondria are the sites of respiration, and generate chemical energy in the form of ATP by metabolizing sugars, fats, and other chemical fuels (including coq10, carnitine, ribose, B vitamins and magnesium) with the assistance of molecular oxygen.

supps I use for mitos:

Krebs Cycle Chelates, a chelated mineral supp by Enzymatic Therapy

Country Life Coenzyme B Complex Caps - contains bioactive forms of some B vitamins, this means liver doesn't have to convert them, remember liver is struggling and is responsible for many of our symptoms

Coenzyme Q10 - part of the energy cycle, mitos need these and esp the heart which has more mitochondria concentrated there than anywhere else, that's why it keeps beating while the rest of our body crashes - use in gel cap form NOT powdered capsule, is better absorbed that way and this is very important, I was using 100 mg gelcaps up to 6 times per day

Magnesium malate, taurate, glycinate are the forms of magnesium to get, they are better absorbed, magnesium oxide is useless, stay away, it's used in laxatives because it passes through the body, crappy vitamins like Centrum and One A Day have it as their sole source of mag, get a good vitamin from the health food store, Source Naturals makes Magnesium Malate which is my favorite - it contains malic acid which helps with the energy cycle, too

Alive Whole Food Energizer multivitamin or any good one from the health food store

folate - bioactive form of B9, is not the same as folic acid, hard to find, holistichealth has folapro, take 1/4 pill per day to start

nadh - involved in energy production, another bioactive form of B vitamin

acetyl l carnitine - amino acid involved in energy cycle, bodybuilders use it a lot, I got a lot of tips from bodybuilding websites, acetyl l carnitine is the more absorbable form of carnitine

ribose - a sugar made by the body, use caution if hypoglycemic, I was using 5 g in the morning and evening but you could try a few 500 mg pills

Biotec Extra Energy Enzymes - these are VERY IMPORTANT! If you take the above substances to increase your ATP production in the mitochondria, you will crash if you don't have your antioxidant enzymes in place to scavenge peroxynitrite and superoxide dismutase - all this according to Cheney - peroxynitrite is such a destructive and dangerous free radical that it can destroy tissue, what happens when we crash (at least a mito crash as opposed to an adrenal crash) is that the body shuts down energy production to stop the production of peroxynitrite which is a byproduct of the energy cycle, the body will shift to anaerobic energy production instead of aerobic - this is when you can't move and feel like you're dying, for a comparison realize that the mitos make 36 ATP molecules per glucose molecule during regular aerobic energy production but only 2 ATPs per glucose molecule during anaerobic energy production, do not skimp on these enzymes, it could cost you a crash and you'll be reluctant to try any more supplements

Coenzyme A is another important enzyme in the body and it is involved in the transport of fatty acids into the mitochondria and also to and from cells. Coenzyme A is very unstable and is not available in supplement form. However, the precursors that your body needs to produce Coenzyme A are available. Here's my doses but do your own research at some point:

pantethine - vitamin B5 is converted by the body into this form 50mg 3x per day

pantothenic acid - is vitamin B5, 150 mg 3x per day

calcium pyruvate - 750 mg 3x per day

magnesium malate - I get different form of mag from different sources, you want 400-800 mg per day

acetyl l carnitine - most easily absorbable and usable form of carnitine, 500 mg 3x per day

L cysteine - many people use N Acetyl Cysteine because it is also a precursor to glutathione 250 mg 3x per day or more

calcium - I get from different sources, 1000 mg per day

glutathione is deficient, too, so take the precursors, no doubt everyone has heard of glutathione by now:

NAC, glycine, L glutamate (glutamic acid) - I have amino acid blends that contain the L glutamate and I'm taking NAC and glycine pills, too


These supplements should help tremendously with energy and how you feel, I still take many of these. Do not start running around if you feel good, you can still crash if you go past your point of no return. Just pay attention and increase activity very slowly. Sometimes you don't know what you've done until the next day. Keep that in mind. You can only do so much with a quick remedy like this.

All of the above are basically harmless, I'm not sure of any drug interactions but I don't think there are any. These are all things that are in a healthy body all the time. I can't experiment for you, you'll have to be your own guinea pig. I started taking most of these all at once except for the Biotec Extra Energy Enzymes, I didn't find out about those for months. There is another brand that uses gliadin for the enzymes - this is the gluten protein molecule - do not use! not worth the risk!:eek:

Catseye,

Regarding what you've done to help yourself I have a few questions.

I see you say you are still taking many of the supplements - could you specify what you still use? How long have you been taking them?

Do you notice a change if you go without them for a day, several days? Or haven't you tried that?

How long and how severe was your illness prior to starting the supplements?

I'm just generally interested in whether supporting our mitochondria very well for any length of time can get them back to a 'healthy' enough state that some or most of the support is no longer needed.

Thanks for sharing!
Velha
 

Catseye

Senior Member
Messages
109
Location
SW Florida
what I'm still taking

Hi Velha,


I'm still taking most of these every day. I used to feel bad within hours if I missed a dose before but not now. I have tried to go without some but came back to them after a few days. Before I started heavy on the supps about 3 years ago, I was pretty much a train wreck. I would stay in bed all the time and when I had enough energy to leave it, I would invariably crash and go right back in it. My worst crashes would last about 2 months and that was 2 solid months of horrible agony wanting to die but I wasn't even capable of "offing" myself even if I decided to do that. One time I felt so good I decided to clean out the cat box. Back in bed for 2 months of hell. I guess many of us go through that really stupid phase in the beginning where we just keep torturing ourselves because we don't know what's happening.

I'm really glad I didn't off myself now, I'd much rather take handfuls of supplements than sit around feeling bad. Big deal, take a bunch of stuff the body needs anyway. I got sick at the end of 2002 and started hot and heavy on supps in 2006. I tried a few here and there before that but it was only when I started taking tons of them all at once that they really gave dramatic results. It's like taking concentrated food in a pill. Digestion isn't working so you have to take the nutrients directly or you'll starve. Well, "continue to starve" is more like it.

Regarding supporting mitochondria for a length of time to where support is no longer needed. If you take supplements, lots of them like this, and digestion isn't working, just taking what you need is probably not going to turn you all the way around. If you are not very bad off, maybe. But if you have dysbiosis and it has affected the liver's methylation cycle by causing LG, then you are over the edge and you have to fix the gut and liver. You can give the mitochondria what they need in the form of pills and you will feed them and get more energy, but it won't be ALL the energy you used to have. You can still crash and burn but it won't be as bad. I have headed off major crashes just by popping tons of pills. You will be able to do more and get out of bed, but you will still have your limits which you will probably have to learn the hard way like you did before supps.

The guts are preventing us from healing because they have become a giant cesspool. They are truly the center of health. That's why the medical profession won't acknowledge this and treat it - if they did, they would be treating 90% of chronic diseases, not just CFS. And that's too many drug sales down the drain. Don't think the people in charge don't know what's going on. Your doctor doesn't, but the people in charge of what he learned in medical school do. Don't be naive. All I did was figure out what was already known to others. Check it out, it's no secret, it's just hard to believe what is being done in the name of the US economy. :mad:

I don't think the mitochondria go bad, they are just starved. They can't perform because they don't have what they need. Digestion isn't working to absorb and assimilate these things from your diet so you starve. Your body is metabolizing the sugar out of the food because that is easy but all the important nutrients are just not getting through. And the gut flora are responsible for making some of the vitamins and nutrients that you need. If you have no beneficial gut flora, you will starve. Lactobacillus helps to digest dairy products, among other things, hence the name "lacto". It's very important, I have a hard time getting this guy to grow in my own gut. :(


I suspect that once the gut is healed, it is going to be more sensitive and you will have to keep constant vigil and eat right, and probably take things like digestive enyzmes forever. If you have been sick a very long time and have damaged some of your enzyme systems, then maybe you will need lots of extra supplementation forever. But that's still better than lying around dying. Get your expert so it doesn't get too expensive and lengthy. I will probably take most of these listed forever because there is no way in hell I'm taking a chance on letting this crap take over me again. After experiencing the true agony of bedridden and helpless CFS, I am so paranoid about my health I will do anything to make sure it doesn't regress.


I have dwelled on the mitochondria and neurotransmitters first because supporting them will help you get over the bad feeling so you can get around a bit and think better. But all I did was track down the nutrients that these metabolic systems needed to function. You can pretty much do that with all the metabolic systems that failed. But we can't take 500 pills a day, there's only so much you can afford and swallow. I think these are the most helpful and then you work on your gut fix at the same time.

In the beginning, I was trying one or two things at a time and I wasn't getting anywhere. That's because I needed all of these and one or two just isn't enough to make much difference. When people say that we all need magnesium or coq10, they're right. But people try them and don't feel any different so they give up. But that's because you need ALL of these to work together. We're all different, so some won't need all these but it's easier to take them all, start feeling better, and then try to see if you can ween off some of them. I guinea pigged myself with this shotgun approach and it worked. It's not like these are toxic chemicals or drugs, these are all substances natural to the body's metabolism - it has to have them. So I figured, what could happen? And what happened was that I got out of bed and felt much better. :p

Here's from what I listed that I'm still taking:

Kreb's cycle chelates, 3x per day, but lately I have tried some ionic minerals when I ran out of these, but I am ordering some more, KCC is still my favorite mineral supp

country life coenzyme Bs - still taking 2x per day

coq10 - still taking 100 mg 3x per day

Source Naturals magnesium malate - still taking 2-3x per day

(I forget a lot of midday doses because I'm feeling so good, it used to be like "gee, I'm starting to feel crappy, what haven't I taken in a few hours?" and I'd pop some pills, now it's more like I need to remember to take them)

Alive Whole Food Energizer - I use these 3x per day, I was actually using Teitelbaum's Daily Energy Enfusion for a long time but not his B capsules that came with it, that powder is great but don't take one scoop like it says, take 1/4 scooop 4-5x per day, it's better to split it up and you're less likely to get a reaction from it, sometimes it made me feel bad in the beginning, I suspect because of my poor liver without any digestive enzymes.

folate - just reordered some, was still feeling good without them but they are too important, don't want to risk it, 1/2 pill twice daily now

nadh - this one I don't bother with anymore

acetyl l carnitine - 500 mg 3x per day

ribose - I don't use anymore

Biotec Extra Energy Enzymes - I have stopped taking these but I think I'll start again just to see what happens

pantethine - 200 mg 2x per day

pantothenic acid - just what is in the Country Life Bs and Whole Food Energizer

calcium pyruvate - I don't take anymore

NAC - 600mg 3x per day

glycine - 500 mg 2x per day

glutamine - 3 grams at night and in the morning

tryosine 800mg and vitamin C 1000mg are not listed but I take them 3x per day or more, very important for adrenals

amino acid blend - when I remember

I'm also taking manganese, molybdenum, dhea, and a bunch of other Biotics Research supps that contain mixes of lots of things, even some herbs in some of them. These are all prescribed by Dr. Farr. The above were all things I prescribed myself. Some of them intersect, but he only goes by specific protocols, not by what we need in general. I think the above will help most people with low energy and brain fog. I also take my first doses of certain things very early in the morning, before I get up.

I also used to take these things in the middle of the night when I woke up feeling bad - I started this about 3 years ago. Mornings were always bad for me, I'd wake up feeling just horrible. I would have a bottle full of everything and a flashlight on the bed. I would wake up feeling bad and empty out the bottle on the bed and just select the ones I thought would help me feel better. After a while, you get pretty good at figuring out what helps and when. I was desperate to feel good. I called it "midnight pilling".

I wish I could tell you a more definitive way of doing this but you just have to experiment on yourself. That's why you should do your homework. Remember when googling to put the words "natural remedies" in your searches to help leave out the medical bs sites that will not help you and are certain to only confuse you. Remember, they have to conceal the fact that the guts are the main cause of our problems while trying to sound like they know what they are talking about.:confused::eek:
 
Messages
66
Catseye,

thank you for your response!!

I have slow onset CFS, sped up by anesthesia, pregnancy, spinal blocks (i really blame this one tremendously for depleting and damaging CSF mitochondria, slow onset seemed to start after an initial spinal block for a knee surgery). I am new to this, it really began to affect my life this past summer - prior to that I would feel tired and like doing anything other than going to work and then sitting around at home was too much effort. After that, I could get out of bed and walk around but that was about it. Bending over felt an effort. I realize this is not nearly as severe as many others, I am thankful for that and would like ot keep it from getting any worse if I can. I would guess I am a mild case right now, was probably moderate last summer.

I read as much as I could, brain fog did not help. I found out about methylation and that this was likely all going on due to damaged mitochondria. I decided to try and follow the protocol Freddd has designed and posted on the wrongdiagnosis forums. His protocol is discussed on this site under the B12/methylation section. Are you familiar? You should read his protocol and see what you think, the concept of supporting the mito is the same, but there are differences in the things he suggests and you use.

It has helped me tremendously! I am working on the nuances of what I need, and have started to figure that out enough that I now have sustained energy throughout the day to go about caring for my children.

My digestion is horrible, it went out the window when I crashed this summer. Now that a bit of my brain fog has cleared and if I can keep it that way I plan to work on my digestion. I am taking digestive enzymes but am hoping i will not need to continue. I'm not really sure what to do to help my digestion. I had a stool analysis which showed some dysbiosis, but also showed good bacteria and good enzymes. It doesn't seem to correlate with my symptoms...

Thanks again for the information.
Velha
 

Hip

Senior Member
Messages
17,824
See this new threat about Anxiety, Ammonia, and the NMDA Receptor:-

http://forums.aboutmecfs.org/showthread.php?p=28948#post28948



I posted re gut stuff in another area where anxiety (bowel/brain) is being discussed but thought I'd also post here for others like me who are overwhelmed, but heartened, by all of the info re the gut and ME :)

I'm hoping that some genius on board is able to sythesize the information we're getting. I'm not able to think my way through the various threads and theories and make sense of it all. However, my gut feeling, so to speak, is that this is pivotal to, if not recovery, major improvement of symptoms and quality of life.

Anyone care to take a stab at what this all means?

Please!

Many, many thanks!
 

susan

Senior Member
Messages
269
Location
Gold Coast Australia
Interesting article. I just had the Organic acid test and it shows high levels of amonia toxicity. My neurotransmitters are very high which demonstrates a high level of anxiety.