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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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HPA Axis Reboot.

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Yes, shame isnt it? For me i had to actually have some improvement before i could take the coq10 - reacted weirdly to it, but now have been on it for about a month. I do daily MB12 injections and they have been the best thing i have done by far. I had to half the prescribed dose as it made me feel nasty - excitotoxicity type symptoms, but now i feel i cant live withpout it. I think for me it gives me a good antioxidant 'cover'. I also benefit from vitamin c and selenium together. Supposedly very magnesium deficient - but 2 years of supplementation doesnt seem to have done anyhting.

The gains i have made with the b12 seem to have tapered off and though they have mainly held i am not going forwards anymore - sort of stuck (at one point i was hoping it would be a cure and that maybe i really 'just' had pernicious anemia or something but no such luck!)
All the best, Justy.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Yes, shame isnt it? For me i had to actually have some improvement before i could take the coq10 - reacted weirdly to it, but now have been on it for about a month. I do daily MB12 injections and they have been the best thing i have done by far. I had to half the prescribed dose as it made me feel nasty - excitotoxicity type symptoms, but now i feel i cant live withpout it. I think for me it gives me a good antioxidant 'cover'. I also benefit from vitamin c and selenium together. Supposedly very magnesium deficient - but 2 years of supplementation doesnt seem to have done anyhting.

The gains i have made with the b12 seem to have tapered off and though they have mainly held i am not going forwards anymore - sort of stuck (at one point i was hoping it would be a cure and that maybe i really 'just' had pernicious anemia or something but no such luck!)
All the best, Justy.

Justy... our bodies seem very alike... I benefit from vit C, selenium and B12 injections.. and dont get any benefit either from magnesium. If you find anything else which helps you, please let me know as I'd be very interested seeing we are finding so many similarities and I suspect other things which help you.. may help me too.

Another thing which benefited me (so so many other things havent) was undenatured whey (but I then developed a bowel intollerence to it after a couple of weeks.. but that made me feel so much healthier when I was able to take it). The undenatured whey I tried was called Pharmafood complete undenatured whey (it had immunoglobins and trace elements and vitamins in it too). Dr Cheney used to say that not all wheys brands were equal hence why Im sharing the brand in case you want to trial it.

ps I forgot to say that Im now got the same happening with the B12 injections. Thou it did improve me.. things there are now stuck and I cant get further improvement from it.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Just want to bump this thread and report that I drank rooibos around the clock over last weekend, and it definitely has appeared to reboot the HPAA in some respect. My energy is definitely different, can't assess the full effects yet, but at times when my cortisol is naturally high - in the AM and then rising up again in the evening - it often feels like I don't even have CFS anymore. Very strange.

My body still feels sore and tired, but even that has improved somewhat. More importantly, the PEM doesn't seem anywhere near as bad, although I haven't really pushed yet to find out where the limits might be.

When I started drinking the rooibos on Saturday, after a while I felt very relaxed, in kind of a good mood, lower anxiety, etc. I kept drinking it all day and all evening, a full glass of about 8-10 oz. every couple of hours or so, and then drank a big glass before bed.

The next day there seemed to be some kind of rebound, or perhaps the ACTH had not come up yet, and I was kind of irritable and short tempered most of the day. I took some kava which seemed to help, and just kept drinking the tea, trying to ride it out. By evening I was feeling better again, and then drank more before going to sleep.

Monday I woke up and that's when I noticed that I felt completely different. Energy definitely has shifted, and the change has persisted since then. Some nights I'm only getting 3 or 4 hours sleep (b/c of insomnia issues, not the rooibos), and yet when I get up, I don't feel totally trashed like I normally would. I hardly notice a difference from when I get 6-8 hrs., in fact, which is very unusual for me.

So something is definitely going on, and it's going to take some time and activity to gauge the full effects. I think it's possible that the HPAA only got reset part way, and I'm thinking about doing another round in a couple days after I get some things done that I need to take care of. Perhaps it would take multiple rounds of suppressing the adrenal output, going through the low ACTH period, and then getting the rebound again when hopefully the HPAA resets itself at an even higher level each time.

Since this improvement or whatever happened seems to be persistent, and because of the pattern it took, I feel reasonably sure that neurohormonal effects are responsible and not some antioxidant or other effect of the tea. And if the HPAA functioning is stable now at the higher level, I hope that more rounds would have the same effect and increase the HPAA set-point even higher, although I suppose it's also possible that the benefit topped out from the one trial, whether b/c it's all the steroid suppression the tea is capable of producing, or because that's the most my HPAA can be reset now b/c of damage over the years, etc. But now we know that the rooibus inhibits the steroid output at least somewhat, and it's virtually impossible in that case for there not to be effects on ACTH, so I'll just have to see what the next round brings. Maybe it would take longer on the tea this time, with the apparently higher HPAA set point.

To make the tea, I took an old glass coffee-maker coffee pot, put about 5-6 hefty tsps of loose rooibos in a cloth tea satchel, and put that out in the sun for a few hours. It makes a very deep-red, deep tea-color tea, it's really beautiful, and tastes great. :- ) So after taking care of some things over the next couple of days, it's on to round two. I'm sometimes posting status updates in my profile if anyone wants to check there, also.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Update on what I'm noticing: the day-to-day energy seems to be greater, more endurance throughout the day, more energy in my body when I wake up and later at night, when cortisol is naturally going up.

I went out yesterday to do some things, though, and got that weirdly, almost kind of spaced-out kind of fatigue that often comes as you're going into a crash. It came on relatively sooner than usual, too. I normally don't feel that way when going out and doing stuff - I think adrenaline kind of keeps me going until I can get home and rest again.

But in this situation, even though I was able to make it through and didn't really have any feeling of being near a crash, I was still more in that "pre-crash" zone than I usually am after that amount of activity. When I got home, I felt really "neuro-wiped" and had to just rest/sleep for a while. After waking up and then hitting the early evening hours, I felt relatively back to normal pretty quickly again. Strange! Never been like this before. I really don't know what language to use to describe all these different state variations, so I hope all that makes sense on some level.

Anyway, a lot of this could have been because I only got 3-4 hrs sleep the night before, or possibly b/c I took some eleuthero for the first time that day since these changes from the rooibos, and maybe it had some kind of adaptogenic "balancing" effect that actually took me down a few notches.

It seems more the case, however, that what might have happened is that, as adreno suggested, the ACTH receptors got desensitized, so that during normal, around-the-house activity I'm relatively okay b/c I'm in the safe zone, but then when there's an increased demand for cortisol, the ACTH can't signal for enough adrenal output. If that's the case, I wouldn't really know what to do to fix it other than to wait to see if it improves again on its own, perhaps try higher doses of adaptogens (eleuthero, withania, ginseng), or if nothing else works, perhaps take a quick taper of steroids.

So, I think I'm staying off the tea for now until I can restore this more toward normal again, in case the tea would make me worse in this new way. I like some of the changes in basic energy, but I don't like this apparent less neuro-reserve change. Seems like one step forward and two steps backward right now. Or possibly the other way, but I only want steps forward, none of these backward steps. ;-)
 

richvank

Senior Member
Messages
2,732
Hi, jeffrez.

For what it's worth, the GD-MCB hypothesis proposes that in ME/CFS, glutathione is depleted in the hypothalamus and pituitary, among certain other organs, tissues and cells. This interferes with the ability of the pituitary to produce enough ACTH, and to secrete it in a normally regulated manner. The result is that in a "mature" case of ME/CFS, the cortisol levels are low, and the diurnal variation of cortisol levels is abnormal, usually too low in the morning, and in some cases flat throughout the day.

In my view, the way to fix this is to correct the low glutathione, and the way to do that is to lift the partial methylation cycle block. We have lab evidence from our clinical study that shows that the methylation treatment does raise glutathione.

Best regards,

Rich
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Hi, jeffrez.

For what it's worth, the GD-MCB hypothesis proposes that in ME/CFS, glutathione is depleted in the hypothalamus and pituitary, among certain other organs, tissues and cells. This interferes with the ability of the pituitary to produce enough ACTH, and to secrete it in a normally regulated manner. The result is that in a "mature" case of ME/CFS, the cortisol levels are low, and the diurnal variation of cortisol levels is abnormal, usually too low in the morning, and in some cases flat throughout the day.

In my view, the way to fix this is to correct the low glutathione, and the way to do that is to lift the partial methylation cycle block. We have lab evidence from our clinical study that shows that the methylation treatment does raise glutathione.

Best regards,

Rich

Ideally that would seem to be the best approach! Just can't handle the 40 BPM heart rate and massive depression I get from 5-MTHF. Sensitive to the smallest amounts, like even 1mcg. Other than reducing the dosage to ridiculously small quasi-homeopathic amounts, any suggestions?
 

adreno

PR activist
Messages
4,841
Ideally that would seem to be the best approach! Just can't handle the 40 BPM heart rate and massive depression I get from 5-MTHF. Sensitive to the smallest amounts, like even 1mcg. Other than reducing the dosage to ridiculously small quasi-homeopathic amounts, any suggestions?
Did you try folinic acid?
 

richvank

Senior Member
Messages
2,732
Ideally that would seem to be the best approach! Just can't handle the 40 BPM heart rate and massive depression I get from 5-MTHF. Sensitive to the smallest amounts, like even 1mcg. Other than reducing the dosage to ridiculously small quasi-homeopathic amounts, any suggestions?

Hi,jeffrez.

That's really unusual, in my experience. As you probably know, high-dose 5-MTHF is sometimes used to treat depression (a la Deplin).

You might try folinic acid instead of 5-MTHF. Also, you might try testing to see if there are some deficiencies in other vitamins or in essential minerals.

Best regards,

Rich
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Yes, I've tried folic acid, Thorne Folacal (folinic acid), and Metafolin, all w/same effects. Strangely, I take B-Right with 400mcg of folate & "quatrefolic," whatever that really is, and don't get any of those effects. So I've just stuck to taking that for now for folate needs. I don't seem to or think I have the folate blocking issue that Fred refers to, as logically if I get the same effect from folate as folinic/mthf, it would seem that I'm converting it and using it.

That's true about depression. Funny thing is when I first tried folate/folinic a few years ago, they fully alleviated some mild OCD I had in a matter of like half an hour or an hour, and I didn't get the depression. Something seems to have happened in the meantime that has made me intolerant to it, have never been able to pinpoint what the issue might be.

Rich, if could ask, what is the relationship between SAM-e and the folates?
 

richvank

Senior Member
Messages
2,732
Hi, jeffrez.

The folate metabolism produces methyl groups. They are transferred to homocysteine in the process of making SAMe in the methylation cycle. SAMe then distributes the methyl groups to all the reactions that need them.

The methylation cycle is coupled to the folate metabolism by the enzyme methionine synthase. Methionine synthase catalyzes the reaction between homocysteine (from the methylation cycle) and 5-MTHF (from the folate metabolism) to produce methionine (in the methylation cycle) and tetrahydrofolate (in the folate metabolism).

In addition to this direct link between the cycles, there are also some feedback regulation links. One involves SAMe suppressing the MTHFR reaction which makes 5-MTHF. This keeps SAMe from going too high.

The other involves the glycine N-methyltransferase reaction, which is used to keep the ratio of SAMe to SAH from going too high. This reaction takes a methyl group from SAMe, converting it to SAH, and puts the methyl group on glycine, forming sarcosine. Sarcosine then carries the methyl group to tetrahydrofolate, forming methylene tetrahydrofolate, which is the substrate for the MTHFR reaction, to make 5-MTHF. So this conserves the methyl group while preventing too high a ratio of SAMe to SAH.

It is thought that at least one of the reasons why the methylation cycle and the folate metabolism are coupled together is that folates are needed to make DNA, and the methylation cycle is needed to methylate DNA. It is important to keep the formation and methylation of DNA coupled, because this controls gene expression, which has big effect on the biochemistry as a whole.

Best regards,

Rich
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Thanks for that detailed explanation, Rich.

So do I understand correctly then that supplementing SAMe could possibly be beneficial while the folate metabolism is still impaired as long as SAMe doesn't go too high? Or could that provide problems of overmethylation if it's imbalanced with the amount of folates going in? Or have I gotten everything completely wrong? : P
 

richvank

Senior Member
Messages
2,732
Hi, jeffrez.

Supplementing SAMe does help some people.

I don't understand what's going on in your methylation and folate metabolism. Is there any chance that you could run the methylation pathways panel? Perhaps you could get it through Dr. Ben Lynch, even though you live in New York.

Best regards,

Rich
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Hi, jeffrez.

Supplementing SAMe does help some people.

I don't understand what's going on in your methylation and folate metabolism. Is there any chance that you could run the methylation pathways panel? Perhaps you could get it through Dr. Ben Lynch, even though you live in New York.

Best regards,

Rich

I'm seeing my alt doc in MA next week. I'll see what he has in his testing arsenal for methylation pathways. If that's not in hist toolkit, I'll check out Ben Lynch, thx.