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Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
hi guys.
I want to give some update on the NO treatment.
I had to stop No2 black recently because I think large doses of arginine over 8 months had done something to my cortisol levels, my body started to get used to arginine also, so I was taking over 15g daily.

https://www.ncbi.nlm.nih.gov/pubmed/17510493

I dont have lactate legs anymore but stamina has been gradually decreasing...at 5pm now im mangled.
Strangely from 8am to 5pm I feel pretty good, I can do normal things, play golf, run around town,,,etc.
But whether i do nought or sweat it on the golf course, come hell or highwater at 5pm i'm roasted.
I believe my cortisol is too low upon wakening and is spent by 5pm, instead of 11pm in normal subjects.

I had a most excellent 7 months so not complaining, but typical in CFS, what you gain on one hand you lose in the other.

Keep the faith guys!
We are another day closer the cure!
Bye.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
I must admit I haven't read the whole thread, but I do need to add a note of caution here, based on a very unpleasant experience.

I tried using nitro spray and nitric oxide meds as mentioned on the first page of the thread. It was a disaster and nearly resulted in me pushing up the daisies. It caused me to experience 'crescendo' angina which was horrible.

The medical verdict is that I have an exaggerated response to NO which resulted in quite serious ischaemia of the heart. Never again!

Please take care if you are experiment with NO.
 

Dechi

Senior Member
Messages
1,454
hi guys.
I want to give some update on the NO treatment.
I had to stop No2 black recently because I think large doses of arginine over 8 months had done something to my cortisol levels, my body started to get used to arginine also, so I was taking over 15g daily.

https://www.ncbi.nlm.nih.gov/pubmed/17510493

I dont have lactate legs anymore but stamina has been gradually decreasing...at 5pm now im mangled.
Strangely from 8am to 5pm I feel pretty good, I can do normal things, play golf, run around town,,,etc.
But whether i do nought or sweat it on the golf course, come hell or highwater at 5pm i'm roasted.
I believe my cortisol is too low upon wakening and is spent by 5pm, instead of 11pm in normal subjects.

I had a most excellent 7 months so not complaining, but typical in CFS, what you gain on one hand you lose in the other.

Keep the faith guys!
We are another day closer the cure!
Bye.

Did you only have that lactate feeling in the legs ? In my case I have it in every muscle of the body, including the jaw, fingers, ect. Very disturbing.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Did you only have that lactate feeling in the legs ? In my case I have it in every muscle of the body, including the jaw, fingers, ect. Very disturbing.

no everywhere, but legs most prominent as largest muscle groups.
lactate comes from inability from cells to breathe and disperse toxins....poor vasodilation in my case.
i can easily disperse lactate from sauna, baths, hot weather etc.

now i seemed to have dropped cortisol so low, i only get relief from prednisone.(used sparingly :)
hopefully normal cortisol production will resume once i high doses of arginine stop.
 

Dechi

Senior Member
Messages
1,454
no everywhere, but legs most prominent as largest muscle groups.
lactate comes from inability from cells to breathe and disperse toxins....poor vasodilation in my case.
i can easily disperse lactate from sauna, baths, hot weather etc.

now i seemed to have dropped cortisol so low, i only get relief from prednisone.(used sparingly :)
hopefully normal cortisol production will resume once i high doses of arginine stop.

Ok, same as me. I wonder if we could have been affected by the same cause. Do you have a formal diagnosis and do you know if your ME was caused by a virus and if so, which one ?
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Ok, same as me. I wonder if we could have been affected by the same cause. Do you have a formal diagnosis and do you know if your ME was caused by a virus and if so, which one ?

I come down SLOOOOOWW with ME over 1-2 year period, not a viral onset
Yea, I have official diagnosis twice in 2012.
Hale Clinic suggested I have a strep bovis infection in spleen recurring from their super duper biores machine.
Dont know if thats legit or not
 

Hip

Senior Member
Messages
17,824
@gregh286
You might be interested to know that alpha-ketoglutaric acid is one of the Krebs cycle acids (there is alpha ketoglutarate in NO2Black®).

The Krebs cycle acids are: citrate, isocitrate, alpha-ketoglutarate, succinyl-CoA, succinate, fumarate, malate, oxaloacetate. Replenishing any one substrate will replenish all of them (as they are all interconverted to each other in the Krebs cycle).

If you read Dr Sarah Myhill's research on mitochondrial disfunction in ME/CFS, she says that some ME/CFS patients have a shortage of Krebs’ cycle substrates, and their health is improved when they take these substrates.

In particular, she says that ME/CFS patients who benefit from supplementation with Krebs’ cycle substrates are Group A2 ME/CFS patients.


The reason I mention this because perhaps you are a Group A2 patient, and perhaps you felt better from taking the arginine alpha ketoglutarate because the alpha ketoglutarate is supporting your Krebs cycle. In which case, some of the other Krebs cycle acids might also be of benefit for you.
 
Last edited:

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
@gregh286
You might be interested to know that alpha-ketoglutaric acid is one of the Krebs cycle acids (there is alpha ketoglutarate in NO2Black®).

The Krebs cycle acids are:
alpha-ketoglutaric acid, malic acid, fumaric acid, succinic acid, citric acid, pyruvic acid, pantothenic acid. Ref: here.

If you read Dr Sarah Myhill's research on mitochondrial disfunction in ME/CFS, she says that some ME/CFS patients have a shortage of Krebs’ cycle substrates, and their health is improved when they take these substrates.

In particular, she says that ME/CFS patients who benefit from supplementation with Krebs’ cycle substrates are Group A2 ME/CFS patients.


The reason I mention this because perhaps you are a Group A2 patient, and perhaps you felt better from taking the arginine alpha ketoglutarate because the alpha ketoglutarate is supporting your Krebs cycle. In which case, some of the other Krebs cycle acids might also be of benefit for you.

thanks hip.
i actually dipped pretty heavy in late august.
i think 7 months of heavy duty aakg upset bcaa homeostatis.
in any case i started high dose amino powder around 2 weeks ago and wow....
.was.like rocket fuel.
i think anyone who didnt try high dose protein powder its really worth a go.
 

Helen

Senior Member
Messages
2,243
The Krebs cycle acids are:
alpha-ketoglutaric acid, malic acid, fumaric acid, succinic acid, citric acid, pyruvic acid, pantothenic acid. Ref: here.

If you read Dr Sarah Myhill's research on mitochondrial disfunction in ME/CFS, she says that some ME/CFS patients have a shortage of Krebs’ cycle substrates, and their health is improved when they take these substrates.
FWIW Rich Van Konynenburg had noticed the same. As you know, but not new members here, he got hundreds of lab reports re: the methylation cycle and also others covering the substances that are involved in the Kreb´s cycle from ME/CFS patients. I had a talk with him when he visited Sweden, and he recommended me to try L-carnitine and adenosylcobalamin and be sure to get enough with magnesium (beside other substrates). At that time they really helped me, and I can still feel if I have forgotten to take the AdCbl. ( I´m not sure that Rich ever posted about the Kreb´s cycle and these thoughts as there were no studies on this).

His opinion was based on the fact that an improper methylation would cause deficits in the Kreb´s cycle.

He was also concerned about people who were vegetarians as they might have problems getting enough of the so important amino acids, according to him.
 

Hip

Senior Member
Messages
17,824
@Helen
According to Myhill et al's studies, it's only a specific subset of ME/CFS patients that are deficient in the Krebs cycle substrates: the Group A2 patients.

(In biology, a substrate is the molecule that an enzyme acts on).

I have just been reading through all Dr Myhill's papers in this last week. She uses the "ATP Profiles" test to see what is going on in your mitochondria, and then groups patients according to their specific problems. In this way, she identifies three main groups of patients: Group A1, Group A2, and Group B.
 

frederic83

Senior Member
Messages
296
Location
France
I found some relief with citric acid (lemon juice, high dose), years ago. I tried malic acid with minor benefit and it was hurting my GI track.
I was able to find online Alpha-ketoglutaric Acid, fumaric acid and pyruvic acid (as calcium pyruvate). I don't know where to find succinic acid.
I will give a try to the Krebs cycle supps.
 

sflorence

Senior Member
Messages
134
I found some relief with citric acid (lemon juice, high dose), years ago. I tried malic acid with minor benefit and it was hurting my GI track.
I was able to find online Alpha-ketoglutaric Acid, fumaric acid and pyruvic acid (as calcium pyruvate). I don't know where to find succinic acid.
I will give a try to the Krebs cycle supps.

I have some Calcium Pyruvate laying around, I'll give that a shot as well. How familiar are people with Alpha-ketoglutaric Acid around here?
 

paul80

Senior Member
Messages
298
@Helen
According to Myhill et al's studies, it's only a specific subset of ME/CFS patients that are deficient in the Krebs cycle substrates: the Group A2 patients.

(In biology, a substrate is the molecule that an enzyme acts on).

I have just been reading through all Dr Myhill's papers in this last week. She uses the "ATP Profiles" test to see what is going on in your mitochondria, and then groups patients according to their specific problems. In this way, she identifies three main groups of patients: Group A1, Group A2, and Group B.

Think i got this test done years ago but it doesn't say on the results anything about a group. I attached it if you want a look.
 

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Hip

Senior Member
Messages
17,824
Think i got this test done years ago but it doesn't say on the results anything about a group. I attached it if you want a look.

Didn't Dr Myhill interpret your "ATP Profiles" test results for you? I know she charges extra for the interpretation.

I don't know too much about this, but from what I can see in your "ATP Profiles" test results, I do not think you are in Group A2, the group that Dr Myhill says benefit from taking Krebs cycle substrates.

In their published studies, Myhill, Booth and McLaren-Howard found that ME/CFS patients divide into two main groups, depending on whether their oxidative phosphorylation (which converts ADP to ATP) in the mitochondria is running normally (= Group A), or is partially blocked and running with reduced efficiency (= Group B).

Then they further divide Group A into subgroups: Group A1 if your TL IN is low or normal; Group A2 if your TL IN is higher than normal. (TL IN is the efficiency of mitochondrial translocator protein at transporting ATP created in the mitochondria into the cell, where the energy of ATP is needed for cellular functioning).

You can read more about this in the Myhill 2013 paper (do a search for "A2" in this paper). Here is what they say:
Group A1: ‘no HIs’ patients appear not to suffer from substrate deficiencies in the processes leading to ATP delivery, while those in Group A2: ‘HI TL IN’ have substrate deficiencies.

Note though that your group can change over time, especially as a result of treatment.


If you look on your "ATP Profiles" test results, you see that your "ADP to ATP Efficiency" (which is oxidative phosphorylation) is 50.7%, and the normal range is > 60%. So this means your oxidative phosphorylation is running with reduced efficiency, and I think (but am not sure) this means you are in Group B.

I am not sure about your TL IN, I am not sure whether it is higher than normal, or lower than normal. You need to have it higher than normal to be in Group A2.

But I think you are not in the Group A at all; due to your lowered "ADP to ATP Efficiency", I think you will be in Group B. In Myhill 2013 they say that D-ribose is an especially important nutrient for Group B patients. I would think D-ribose would be particularly useful to take during PEM periods.

That's my best attempt at interpretation, but actually your "ATP Profiles" is the first time that I have seen an example of this test on this forum.

You can see how Dr Myhill herself interprets one of these "ATP Profiles" tests at timecode 22:58 in her video.


Here is what they say about higher than normal (super-normal) values for TL IN in Myhill 2012:
The super-normal values of TL IN for the ‘HI TL IN’ patients are most likely due to below normal ATP levels in the mitochondria due to shortage of substrate, either the well-known substrates of the Krebs cycle or those of the ETC, principally ADP and inorganic phosphate, Pi, but also the essential co-factors CoQ10, reduced Niacinamide (NADH) and Mg.
 

paul80

Senior Member
Messages
298
It was in 2012 i got this test done and i'm a lot worse now so it might not be applicable any more.

Yes there is more test results and an interpretation with a guide on what to take. I tried it for a while but it was expensive and i didn't notice any difference. Maybe it would have stopped me getting worse though.

Anyway, the test results might not even be relevant to me any more but let me know if you want the documents for your own research.