Views on B12--Greg (B12 oils) view vs Rich Van's view--Thoughts?

[Kathevans]

Since Greg wanted me to pull back on the B2 and just work on the minerals, that's what I'm trying to do. Not that I've done much yet, but I have my molybdenum and iodine and selenium. The only one I'm not quite afraid of is the molybdenum, so I guess I'll begin with that.

My new naturopath and alternative doctor each wanted me to work on my gut first--I have a lot of strep hanging around, some other bacteria and a little fungus. To that end I've begun to follow the recommendations of the naturopath which includes xylitol, plant tannins and Uva Ursi. The doc had called in prescriptions for an antibiotic (which is what made me sick in the first place) and fluconazole (which I've avoided like the plague for the past decade or so). It's possible these old decisions didn't serve me, but I'm going to try the naturopath's approach first.

Both of them say I will feel like a different person in a month...Hmmm. It is true that the Bs are made/metabolized in the gut, right? Maybe they would work better.

Meanwhile, even though I've stopped all Bs (can you believe it? after 20 years of playing with them...), I'm still having potassium dumping. All this week I've had to take potassium at least once in the middle of each night, sometimes twice. Totally disruptive. I am taking niacin (well, I guess that's B3!) to help control what I had thought of as adrenaline surges, though as you point out, Athene*, it may be aldosterone. The niacin helped me to get about 5 hours of sleep last night. Not bad in the scheme of things. But I can't say that this feels like progress.

that would mean your aldosterone could be too low, rather than too high? That would cause palpitations, sleep disturbance, frequent peeing, thirst (not everyone gets all the symptoms, but I get those when my aldosterone is low). When this low aldosterone happens to me during my low cortisol phase I find I need more salt as well as potassium. Do you ever try a little sea salt in water, as well as just the potassium? I find it settles me.

Your analysis is spot on here. You clearly understand the adrenals so much better than I do. I've been having this frequent peeing at night, the thirst, sleep disturbances--all of it, really, for quite some time. But the solution is still the same, right? Getting enough B2 into the system that the B-12 can work properly. And to do this, I need to work a bit on the minerals, I guess. Also, yes, I do use sea salt regularly. About four years ago, I began to drink lemon water with sea salt several times a day--and to use a fair amount of sea salt--knowing this was good for my adrenals. It was around then that I slowly added the iodine to make sure I had adequate amounts.

I was reviewing earlier portions of this thread and something you said relating to this bears repeating: " Your heart problem could possibly be due to the adrenals, like you say - as you know the adrenals produce mineralocorticoids like aldosterone - especially important for fluid and electrolyte balance, and as Greg said - when we start using b12 without enough b2 in our system, we get flooded with adrenalin and this triggers massive aldosterone dumping into the bloodstream, which in turn lowers potassium. The reason is because our adrenals don't work properly after years of b12 deficiency and so they don't make enough adrenalin (or cortisol if it goes on long enough). So there are tons of adrenalin precursors hanging around which get triggered when b12 is added."

Greg did intimate that I must have turned on some MTR/MTRR++ blockages to have such an extreme reaction (he actually said I ought to use a drop or two a day to just keep things going...!). My question for the moment is, having stopped the B2, how long will it take to slow things down, or is that horse out of the gate? I'm still chugging that potassium at night. I'd like to feel more centered before adding more of other things...

I'm going to try to take an adrenal test soon. And I'm certainly going to get one of those thermometers you recommended--the Geratherm--from Amazon, to see if I can begin to learn a little more about the thyroid, as well.

Thanks for all your helpful information. I've been studying this stuff like mad for about a year and a half--and still feel like I'm in the dark. But at least I know what my doctors are talking about now and can have a semi-intelligent conversation with them. Of course, I've also accrued a few opinions and they may not like that so much!

Thanks for all your insight. It's truly appreciated.

Hands across the water; heads across the sky.

 

[Athene*]

It's up and down for you, I see, @dogged_days especially with the cortisol. Same here, since I dropped it (slowly titrated down over several months) - but for me there's a very marked difference between the high and low progesterone phases with regard to cortisol. Since progesterone makes cortisol for women, I think I may need to use a bit of progesterone cream to boost mine during the low phases.

It really is remarkable the effect that progesterone has on my cortisol and aldosterone. I'm like a different person when the progesterone kicks in terms of the adrenal insufficiency symptoms disappearing (progesterone has its own problems when it gets too high though - it needs to be just right). Did you say you were using progesterone? What dose? Cyclical or daily? I'd be interested to know whether you observe a change on the days when you're not using it, or whether you feel your dose is working for you.

We need to make sure we're not too low on oestrogen either - I think you said you were using that...I know I'm oestrogen dominant which isn't helping and another reason I'm considering progesterone.

The thing with progesterone is that it really helps the conversion of t4 to t3 as well as helping to make cortisol.
My temperature goes up several points during the progesterone phase. Of course progesterone is anti-inflammatory too.

For me hydrocortisone helped a lot at first but then it messed with my other hormone levels and I couldn't tolerate it. I ended up with too high cortisol at times - dangerously high blood pressure.. It's low normal now. The b2 has helped the adrenals and bp too.

So difficult to balance all these hormones. Women seem to have an extra burden because of the cyclical fluctuation, and from what other women have told me, when cycles end we have the same problem with bio identicals (fluctuations/finding correct levels) and if we use no hormones we're never well!, because of the strain on the adrenals trying to produce female hormones all on their own!

By the way Greg mentioned B12 Ice being used directly on eczema. They use it in Australia for sunburn and other skin irritations. I think it's the one with the curcumin in it and vitamin D. Why not ask him?

I wonder have you had your vitamin D checked recently? That can help with making progesterone. And vitamin D is hugely important in so many other ways too, especially for eczema and other autoimmune issues, as I'm sure you know.

To answer your question on doses - I use two sprays daily of Meb12/Ado mix. That's all. I was on more (three sprays daily plus a 1mg injection of Meb12 daily) but I'm similar to @Kathevans in that too much makes me produce tons of adrenalin...

I hope you continue your upward trend and get out of your current crash soon.

 

[Athene*]

Since Greg wanted me to pull back on the B2 and just work on the minerals, that's what I'm trying to do. Not that I've done much yet, but I have my molybdenum and iodine and selenium. The only one I'm not quite afraid of is the molybdenum, so I guess I'll begin with that.

My new naturopath and alternative doctor each wanted me to work on my gut first--I have a lot of strep hanging around, some other bacteria and a little fungus. To that end I've begun to follow the recommendations of the naturopath which includes xylitol, plant tannins and Uva Ursi. The doc had called in prescriptions for an antibiotic (which is what made me sick in the first place) and fluconazole (which I've avoided like the plague for the past decade or so). It's possible these old decisions didn't serve me, but I'm going to try the naturopath's approach first.

Both of them say I will feel like a different person in a month...Hmmm. It is true that the Bs are made/metabolized in the gut, right? Maybe they would work better.

Meanwhile, even though I've stopped all Bs (can you believe it? after 20 years of playing with them...), I'm still having potassium dumping. All this week I've had to take potassium at least once in the middle of each night, sometimes twice. Totally disruptive. I am taking niacin (well, I guess that's B3!) to help control what I had thought of as adrenaline surges, though as you point out, Athene*, it may be aldosterone. The niacin helped me to get about 5 hours of sleep last night. Not bad in the scheme of things. But I can't say that this feels like progress.



Your analysis is spot on here. You clearly understand the adrenals so much better than I do. I've been having this frequent peeing at night, the thirst, sleep disturbances--all of it, really, for quite some time. But the solution is still the same, right? Getting enough B2 into the system that the B-12 can work properly. And to do this, I need to work a bit on the minerals, I guess. Also, yes, I do use sea salt regularly. About four years ago, I began to drink lemon water with sea salt several times a day--and to use a fair amount of sea salt--knowing this was good for my adrenals. It was around then that I slowly added the iodine to make sure I had adequate amounts.

I was reviewing earlier portions of this thread and something you said relating to this bears repeating: " Your heart problem could possibly be due to the adrenals, like you say - as you know the adrenals produce mineralocorticoids like aldosterone - especially important for fluid and electrolyte balance, and as Greg said - when we start using b12 without enough b2 in our system, we get flooded with adrenalin and this triggers massive aldosterone dumping into the bloodstream, which in turn lowers potassium. The reason is because our adrenals don't work properly after years of b12 deficiency and so they don't make enough adrenalin (or cortisol if it goes on long enough). So there are tons of adrenalin precursors hanging around which get triggered when b12 is added."

Greg did intimate that I must have turned on some MTR/MTRR++ blockages to have such an extreme reaction (he actually said I ought to use a drop or two a day to just keep things going...!). My question for the moment is, having stopped the B2, how long will it take to slow things down, or is that horse out of the gate? I'm still chugging that potassium at night. I'd like to feel more centered before adding more of other things...

I'm going to try to take an adrenal test soon. And I'm certainly going to get one of those thermometers you recommended--the Geratherm--from Amazon, to see if I can begin to learn a little more about the thyroid, as well.

Thanks for all your helpful information. I've been studying this stuff like mad for about a year and a half--and still feel like I'm in the dark. But at least I know what my doctors are talking about now and can have a semi-intelligent conversation with them. Of course, I've also accrued a few opinions and they may not like that so much!

Thanks for all your insight. It's truly appreciated.

Hands across the water; heads across the sky.

Love the Paul McCartney sentiment, Kath. Right back at ya!

Glad I might be of some help to you at times re adrenals/cardiac connection. I remember when I first crashed 16 years ago I was having constant peeing for months at a time, and frightening heart banging and breathlessness and thought I was having heart or kidney failure, not to mention the insomnia, weakness and muscle and joint pain.

By the way, If it wasn't for you and @Johnmac discussing b2 and b12oils I never would have found them so thank you too!

I'm no expert, but over the past five years in particular I've isolated a few hormone issues that pertain to women and focused in on them because of my adrenal collapse which wasn't Addisons or Cushing (so doctors weren't interested). Cardiologist found intermittent AF which later resolved itself so I was discharged. Nobody thought of b12.

I don't have formal endocrinological or biochemical knowledge but I'm good at observing my own fluctuations and monitoring things like vital signs - temp, bp, pulse. It really gives so many clues in all this chaos. It makes you feel kinder towards your malfunctioning body in a way. It's desperately trying to find homeostasis while having been deprived of major nutrients for decades because of some unlucky genetic quirk.

My body is very good at supplying me with consistent clues. Though for decades I was clueless about interpreting them. Now I match them up with the vital signs and blood tests (I insist on regular blood tests after doctors neglected so many issues for years). Low blood pressure comes with low cortisol for me and it's always to do with low progesterone (not sure where my oestrogen is just now but I know I have too much in relation to progesterone). God knows what I'll be like after perimenopause, but I intend to learn as much as possible about bio identical hormones before then. If they don't work out I read up about Maca which for some works very well. There's also pregnenolone. Whatever - I will definitely not be depriving my body of any vital hormones after all these years of nutrient deprivation...All very well for women in past centuries to live without hormones - they probably died before they realised they didn't have them!

I believe our adrenals and sodium/potassium pumps will work fine if the female hormones are not flat lined. Or falling and surging all over the place (like mine, currently). They need the essential nutrients we've been missing, of course, especially the Bs. Adrenals love the Bs.
Are you off all Bs including b12 oils? Are you not taking any b12 or Adenosylcobalamin? Maybe I read it wrong...

It's so good for me to get feedback from other women with this illness. I'm going to try a tiny bit of progesterone at certain times to help my adrenals along and I'll report back. Other things I use are vitamin C and pantetheine (not sure if it's doing anything), plenty of rest and I exercise less on low cortisol days, good nourishment etc. And I take a few days off every week from any medical reading or thinking (though that's hard when the body is acting up!).

Very interesting what you say about having 'turned on some MTR/MTRR++ blockages to have such an extreme reaction'. This is very like me. I stuck it out for 18 months of daily Meb12 injections causing horrible adrenalin rushes before I spoke to G. At times I thought I was going to die of a heart attack. Adding the 5MTHF helped briefly, but the b2 is what made the real difference. Before b2 I was unable to drop hydrocortisone by even 2mg without a crash, even while injecting Meb12 daily...

I had to back off the injections. Then I had to back off the high dose b12oil. For a while I was on less than one spray daily. Now I'm on two sprays per day (Meb12/Ado) and the adrenalin rushes have abated hugely

Personally, I would steer well clear of antibiotics and fluconazole. I see them as poison after trying them on-and-off over the years. They both decimate the gut bacteria and as far as I remember fluconazole is tough on the adrenals. Good that you have a naturopath but I would only introduce only one new thing at a time (but that's just me, from my own experience - it's too hard to read the signs of what's doing what). Niacin did nothing for me. Made me much worse. Not sure why, but @dogged_days knows about niacin. Iodine for some reason affects me very badly. I may just drop the crumb to every few days or use iodised salt if I can find it somewhere.

My OAT showed I was a bit low in good bacteria and I was having some IBS symptoms so instead of upping the 5MTHF again I recently started a probiotic called Align. So far it seems to be helping. I eat a natural yoghurt every day too. You're right - the gut is hugely important in our recovery. It's being researched a lot these days and the link between the brain and the gut is fascinating too - there are brain cells lining the gut. So going by your 'gut' instincts makes sense

 

[Athene*]

PS @Kathevans You mention minerals. Have you had a RBC Magnesium done? I'm thinking of having that. Magnesium helps to make vitamin D which helps to make progesterone and so much else...I'm late diagnosis coeliac so I was most likely low on minerals for years without knowing

 

[dogged_days]

It really is remarkable the effect that progesterone has on my cortisol and aldosterone. I'm like a different person when the progesterone kicks in terms of the adrenal insufficiency symptoms disappearing (progesterone has its own problems when it gets too high though - it needs to be just right). Did you say you were using progesterone? What dose? Cyclical or daily? I'd be interested to know whether you observe a change on the days when you're not using it, or whether you feel your dose is working for you.

Thank you for making this connection for me. I am in the dark and after reading your words I see the connection. I take progesterone 20 days out of the month. I often can't hold out those ten days and cut it to five. I'm calmer with it. That's all I can say. I have adrenalin issues, again. Not insomnia, but weird waking. My starting the potassium again due to heart palps was to try to avoid taking cortisol, which like you, caused problems with the oils on board. But maybe it was about aldosterone? Frequent urination, sleep disturbance, adrenalin. For me, in the last five years I mitigated heart palps by increasing thyroid and/or cortisol. I've always had too low BP and that's what worked. Not now. When I take cortisol it is definitely causing the erratic stuff you are talking about. On that note, I aggressively took FMN this week between my b2 oral doses and noticed a huge improvement for hours at a time. I need SO much more than anyone around here I can tell. Maybe I'll lower to 2 squirts mb12 p/d.

By the way Greg mentioned B12 Ice being used directly on eczema. They use it in Australia for sunburn and other skin irritations. I think it's the one with the curcumin in it and vitamin D. Why not ask him?

So this is very much and has been an autoimmune response I've experienced for years. Let's giggle for a moment or else I'll die. Since embarking on the metals removal, I've got athlete's foot, the very same warts on my hands resurfacing that I had 35 years ago (not the periungual, fortunately) and the exzema around the nostrils (which started mainly after dropping cortisol). But the worst symptoms recently, aside from the cfs stuff, cognitive, and severe depression is this problem with subluxation. Ligament laxity. Nothing stays in alignment. This week I've awakened to severe neck pain nightly. I've never experienced something so acute. I woke to a back issue yesterday and I can't breathe because my ribs are killing me. Then this morning I felt it move into my hips. It's constantly changing but the neck symptoms have been there since starting the metal. The symptoms are insane right now. All I can't think is chelate! I suspect the neck to be metals toxicity. And metals are moving and shifting throughout my body for three years (when I started removing them), and that's as long as I've been having these severe subluxation issues. I've got to figure out the silly watch I bought with vibration timer. I digress.

God knows what I'll be like after perimenopause, but I intend to learn as much as possible about bio identical hormones before then. If they don't work out I read up about Maca which for some works very well. There's also pregnenolone. Whatever - I will definitely not be depriving my body of any vital hormones after all these years of nutrient deprivation...

Well, I'm there (post peri) and at this point I have no intention of stopping them. I agree. If you've never felt these hormones all your life, they really make an impact. I never had them I realized, after I got them into my body. I never felt good, ever. I take them all except estr. I also take progenelone. I mentioned the estr gave me issues, but that was several years ago. Have not had a test in a while. Consumed by the metals, really.

My OAT showed I was a bit low in good bacteria and I was having some IBS symptoms so instead of upping the 5MTHF again I recently started a probiotic called Align.

Coincidentally I got a probiotic last night, as I've been having gut issues. I don't do them regularly, after I healed the ulcer I wanted my body to take over. I'm going to maintain my low 5-mthf dose and see if the pro-b helps.

Thank you for making things make sense. Thank you for taking the time to carefully respond. I thank you so much for your kindness. I wish I could comprehend things better right now. It's tough to be one's own doctor when one is this compromised. Argh. I feel trouble on all fronts right now, so what else is new? But I will continue to learn and share what I know or experience.

 

[Athene*]

You're very welcome @dogged_days And thank you too - it's great to be able to see the same effects in other women. Of course when progesterone is too high it raises cortisol too much and the symptoms of high and low cortisol can be very similar so we need to be careful.

I never did any chelation because I would worry about my body's ability to detox. When one is b12deficient for years the glutathione can be low, as you probably know, so then would that not mean we cannot detox properly even if we do take chelating agents, no? To be honest you know more about chelating than I do, but for now my instinct tells me to avoid it, for myself.

Sorry to hear about your current pain. I don't know much about subluxation. I was curious and a quick Google brought this up, below. It seems to be related to a deficiency of whole food vitamin C and minerals. Are you careful to keep up with your minerals? Many of us with this disease are mineral deficient because b12 deficiency lowers stomach acid, making it difficult to break down minerals in our food. I have to be careful also because I was undiagnosed coeliac for years, and that impedes mineral and vitamin absorption too.


https://www.seleneriverpress.com/nutrition-and-the-chiropractic-vertebral-subluxation/

 

[dogged_days]

Then I had to back off the high dose b12oil. For a while I was on less than one spray daily. Now I'm on two sprays per day (Meb12/Ado) and the adrenalin rushes have abated hugely

Thank you for helping me through this transition! Saturday I reduced mb & adeno oil to 2 doses per day. I crashed Saturday really badly, but Sunday was better. I had been on 2 x 2 doses a day all week; I think it was too much. I dropped the HC completely based on your discussion of aldosterone. I’m taking potassium to stave off the heart palps. My neck is a little better after that event, but will take a week to go away. I was only able to do 25 mins in the FIR sauna, so my adrenals are quite busy off having board meetings. It’s not a bad sign that I can’t do a long period at this point. The transition will take some time. I think this week will be better at lower doses and dropping the cortisol completely. Getting off the adrenalin kick! Thanks for the valuable input. Here’s to a better week with no more crashes.

 

[Athene*]

Hope things will go well for you @dogged_days It's a slow process I'm finding, but definitely an upward trend. Still on b12/Ado oil x twice daily and b2 150mg daily.

Just to update about the probiotics - I had to stop taking them as they brought back an old problem I haven't had for years - reflux. I got stomach pains too which disappeared after I stopped taking them. I tried it a few times but the same thing happened. I'm guessing it was creating too much acid (reflux), but not sure why. I suppose it will take time to heal our stomach lining as well our adrenals with b12 treatment. I'm fine with natural yoghurt daily though, so that will have to suffice for now.

I'm still off cortisol but I have to mind those adrenals very carefully or they complain, as you know! I got too ambitious and did 30 minutes fast walking (felt amazing!!) instead of gentle walking the other day and I paid for it next day with weakness and sweats and low blood pressure. But then like a miracle it all picked up again the next day whereas in recent years I would have had a full blown crash after any kind of exercise (and would have been on the couch or in bed, not out walking in the first place!).

Slowly, slowly does it...I must remember that...

I do find the progesterone helps, especially if I've overdone things, but I'm not really using much, just a tiny dab. It got rid of the burning skin that I was getting after exercise or when in the sun (a sort of mild rosacea that I got once before years ago for a while).

My sleep is fantastic these days, like you, fingers crossed it lasts, 7 or 8 hours per night, though I can't sleep until 3am. Working on that.

I know that methylation won't work if thyroid hormone is insufficient and neither will it work properly if adrenal hormones are insufficient, so I'm having to look after those two endocrine glands very very carefully. B2 helps a lot. Interesting you find FMN version helps. Greg is adamant it's 'clipped back' to plain b2 in the gut. Others here have said they've noticed it helps them.

Can I ask how much b2/or FMN do you take now, and also what your dose of progesterone is?

 

[dogged_days]

@Athene. Sorry I’ve been so busy this week with work. Going to bed very early. Daily, I’ve been taking 2x b2 @ 100mg (solgar), and 3 x 25mg coenyzmated b2 (source naturals), and ¼ teaspoon progesterone at the strength listed as “60 gm CMPD prog 100mg/gm CR.”

I’ve been weak, exhausted, and sore. I’m not as cold this week maybe (?), as I can really notice now when I swing into cold periods; it’s always the left side of my body that gets cold, specifically limbs get icy and stay that way for hours. The FMN really puts a dent in the cold. However, temps still swing wildly around 3 degrees a day. I was freezing just now, and I just took 2 FMNs and it only took 30 minutes, and I’m warming up. I feel I need the FIR sauna when I’m cold, it seems like my detox ability has these cycles, where everything slows. I have to push things along, nothing is holding. I need to help my liver more; I haven’t given it the attention it needs. I’ve been completely off hydrocortisone for one week, and on 2 ad/2 mb doses of the oils. So I’m seeing exactly what my adrenals are doing on their own. Adrenalin is better, much better. I had one period of heart pounding last night, but that was likely work stress. It was a really rough week. Most prevalent symptoms this week are exhaustion, like a zombie. Emotional and pretty depressed. Peeing all the time, all the time, all the time...and all during this time, creeping weight gain (since starting the B protocol in March, ten pounds in 3 months…went hypo…?).

On the exhaustion, I go back to @Kethevans comment:

Meanwhile, even though I've stopped all Bs (can you believe it? after 20 years of playing with them...), I'm still having potassium dumping. All this week I've had to take potassium at least once in the middle of each night, sometimes twice. Totally disruptive. I am taking niacin (well, I guess that's B3!) to help control what I had thought of as adrenaline surges, though as you point out, Athene*, it may be aldosterone. The niacin helped me to get about 5 hours of sleep last night. Not bad in the scheme of things. But I can't say that this feels like progress.

To which you had previously replied (which Kathevans referenced):

I was reviewing earlier portions of this thread and something you said relating to this bears repeating:

Athene said: Your heart problem could possibly be due to the adrenals, like you say - as you know the adrenals produce mineralocorticoids like aldosterone - especially important for fluid and electrolyte balance, and as Greg said - when we start using b12 without enough b2 in our system, we get flooded with adrenalin and this triggers massive aldosterone dumping into the bloodstream, which in turn lowers potassium. The reason is because our adrenals don't work properly after years of b12 deficiency and so they don't make enough adrenalin (or cortisol if it goes on long enough). So there are tons of adrenalin precursors hanging around which get triggered when b12 is added."

I’m trying to read up this now. I want to understand how I can smooth all this out. What happens after the aldosterone dumps into the system? Massive exhaustion? Then things start to smooth out? I have been taking potassium, but it’s not helping my energy. I know my BP is up since starting the protocol, and that’s a good thing for me, as I’m always low. It’s quite a transition to feel your BP increase. It’s hard on the body and it feels very foreign to have it come “up to operational function,” so to speak.

But i’s just like a roller coaster, exactly like a roller coaster. I’ve had one good day on this b protocol, so far. Wondering when I’ll have a few more. In thinking about Freddd’s protocol, which I have left, since starting the oils, there is no way on earth I could introduce LCF into this mix at this time. I tried a while back (before the oils). I would not recommend it for people who have been on as high at 25 mgs HC. The adrenals need to regulate on their own after that long, and that takes time. I was cortisol depleted, however, so this is an uphill climb and not like someone who still had some cortisol? Months of transition are required… Maybe the oils would make LCF easier, I don’t know, but according to what I’ve read here, Greg feels we don’t need it. The body will start making it. Wonder how long that takes, and what gets in the way of that….if LCF is the “energy giver…”. I wonder if it would help and wonder if I need to address other things in the methylation pathway. It’s just thought, as right now I’m really focused on other things. I’d need a test to go further, at this point. I’m just going to wait it out. Thanks for the advice to lower the oils. I think it’s working! It’ll just take time. Just wish I had energy. Can't you tell I'm so impatient? Sheesh. It's funny.

.

 

[Athene*]

Thanks @dogged_days Good to know the doses different people are using. I was just looking at your advice today on another thread re Apple Cider Vinegar and Celtic salt for gut health and it reminded me to buy some ACV. I ran out ages ago. I don't use much salt, except on food (Mercola's Himalayan), because I don't want to raise bp.

I think if we take a lot of b2 we can deplete b6, so I'm adding in some of that for a while.

I'm similar to you right now. Have come off hydrocortisone and finding it a struggle by times - seems to alternate with a good week followed by a tough couple of weeks (hormone cycle I think).

Like you, I get weak and cold on the bad days and can't go out for walks on those days. I was doing much better until the allergy season arrived. I have dreadful hay fever now and it always hits my adrenals hard.

Do you get hay fever or dust allergy (I have that too)? I only realised recently how that can impact the adrenals.

Same thing happens if I get glutened which I have a suspicion might have happened a couple of weeks ago...but it could just be the hay fever.

re LCF - I've been taking 100mg daily since my Freddd protocol days, though you're right that Greg says we'll eventually make our own. I can't tolerate any more than 100mg (I divide an 800mg capsule). Given what you say, I might drop this.

It's such a long drawn out 'cure' isn't it? I do so well when my adrenals are improving (and as a result the thyroid med gets into the cells), but right now the hay fever is a problem, but I haven't crashed, just slowed. Before this summer hay fever would wipe me out - total crash.

I wonder if us folk can take antihistamines or do they affect methylation? Don't worry if you're busy or tired. Someone else might chime in about allergies etc.

You're amazing to hold down a job like you do. I work at home but take on much less than I used to. I had to do an 'all nighter' last week to finish a report I had procrastinated on for months, so that hasn't helped.

Currently I'm on:

-Meb12/Ado oil x 2 daily

-5MTHF 15,000mg daily (any less and I start to get epithelial issues. I was cutting down before allergies brought down the adrenals, but will have to stay on this dose for now). I used to be on 40,000mg daily on Fredd P

-B2 (ordinary form) 150-200mg daily broken into 4 doses. Might try your FMN (thanks for info)

-Potassium 900-1,200mg daily (potassium gluconate). I needed 3,500 daily on Fredd Protocol

-B6 50mg daily (since yesterday)

-Biotin 600ug daily (I know you take a lot more. My biotin was ok on OAT test)

-B-Complex Low dose that Fredd recommended (Nature Made) divided into two doses daily

-LCF 100mg daily

-Vitamin C 2000mg daily plus orange, blackberries, other food sources

-Vitamin E (Gamma E, Jarrow), one most days, and Krill oil (Jarrow), and Magnesium Glycinate (Doctor's Best)

-t3 75mcg daily (3 x 25mcg doses)

Gave up zinc because it lowers cortisol as far as I know

Gave up hydrocortisone (determined to stay off it. Fingers crossed we will manage to do this!!)

Am considering using more progesterone to help raise cortisol. (which one do you use or where do you get it - if you get a chance sometime to let me know), but not sure yet. Apparently it doesn't convert to cortisol in everybody.

If anything strikes you as not a good idea, or if I'm leaving out anything, do let me know

P.S. Have you seen the excitement on the forum about Ron Davis, a respected scientist who seems to be getting close to solving ME? I'll see if I can find the thread. It does seem very similar to what Greg is suggesting, particularly with reference to an energy generating problem involving the citric acid cycle (which I have on my OAT). Greg says B12 & Ado & B2 should eventually sort this out, so am hopeful for this, like the rest of us on this thread...
Now, if only the adrenals would play ball....

PPS Interestingly Ron Davis' hypothesis, based on what he's found so far, is that biotin may be one of the key supplements, so that makes sense for you, though mine was ok on OAT - maybe it needs to be higher...

 

[Athene*]

For any b12 oil folks that are interested and @dogged_days (as I mentioned in our chat):

Here's some info re scientist Ron Davis who is saying similar to Greg re Citric Acid Cycle and B12 deficiencies
http://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/

I find this very reassuring i.e. that other scientists are looking at this too. Hopefully they'll all get their heads together to find a quicker cure someday...

There's a thread on it too, below. Interesting that b2 isn't mentioned as far as I can see. Hopefully Greg is ahead of the game there! Biotin & B12 metabolism are mentioned. As is CDR (on the thread, as a possible precusor to all this):

http://www.sciencedirect.com/science/article/pii/S1567724913002390

Davis uses a high tech sampling method calling 'metabolomics'. How I would love to do that test! They were looking for a cohort of volunteers (who'd pay for the test to fund the research as far as I can make out). Not sure if they're currently doing that...

http://forums.phoenixrising.me/inde...-shows-problems-with-energy-metabolism.45018/

 

[Kathevans]

@Athene* I’m tickled you got my reference! As to so much else here, I hardly know where to begin-

It’s been a busy week with one graduating niece and one visiting, and apropos of all this health stuff, a back and forth with Greg that seemed to be new, or at least, struck me at a deeper level.

Once again trying to understand the adrenal-thyroid connections and the effects of various vitamins and supplements. Greg’s words follow:

“The key is to get your B2 right and if you are having over-stimulation of the thyroid it says that this still isn't right. Theoretically only iodine will over-stimulate the thyroid, unless you don't have the rest right.

Firstly, you need iodine to make T4. You need selenium (from the brazil nuts) for the enzyme to convert T4 to T3. Once T3 has turned on the enzyme riboflavin kinase, then you need molybdenum for the enzyme to convert FMN to FAD. It is FAD that you need for MAO to control the adrenalin once it is over-produced.

What you need to do is to do is to get FAD right, so that MAO is right, so that when you release adrenalin, you can control it. You need to slowly get rid of the back-log of adrenalin precursors, and then you won't turn on aldosterone production in a mad rush when you dump adrenalin. The aldosterone is what produces the potassium issues, so you will know when you get this all right as your need for potassium will drop.”

I still feel that thyroid is not a problem for me—all tests fall smack in the middle of the ranges. And I have taken 3 drops of iodine a day (about 220mcg) for years because I use sea salt without iodine.

That said, my adrenals when tested last year were flat-lined from morning till night. So there was a problem there. No doubt the high levels of B-12 that I took—up to 6,000mcg/day and then the B-12 Oils pulsed (only 1 squirt when used)—was likely enough to stimulate the adrenals into the cycle of releasing adrenaline and/or adrenaline precursors. Over the last month my sleep has been erratic with more nights of 2-4 hours of sleep which is ridiculous—and still feeling hyped-up all day. As if I were on speed. The need for higher potassium didn’t kick in till the beginning of June, and then it became persistent. Ironically, it became more pronounced as I tried to wean myself off the B2 and B-12 as per Greg’s instructions.

I thought I was doing well enough with selenium—which was confirmed by a blood test last week: Se114 mcg/L in a Range of 63-160 mcg/L—so right in the middle. (btw, my rbc magnesium was done at the same time, @Athene* and is 5.0 mg/dL in a Range of 4.0-6.4, which seems ok). I am still eating those three Brazil Nuts most days. I’ve also added in about 2.5mg of Manganese, which figures large on the ‘B2 I Love You’ thread and was a bit low on an OAT Test from years ago. All that was left was molybdenum—and given this idea that it was the molybdenum that actually would stop or counter the effects of the adrenaline—it made sense that this would be what I focused on.

I’ve used it now only two days running. Not much, right! But the effects were instant and strong. After using 1 drop (25mg), I needed an hour long-nap (I seldom can sleep during the day), and by dinner I was exhausted. I began to wonder if it was nothing but adrenaline I’d been running on. After dinner I could hardly stand and fell into bed early and sleep by 11. I was up and down to pee as usual, but in the six hours prior to waking for an extended period I didn’t need any potassium (I’d been taking at least 2 doses each night). And I was still exhausted in the morning when I could no longer sleep.

In any case, after that strong reaction, I backed up to 1/2 drop on day two, still felt pretty exhausted, and today only took ¼ drop with dinner—to be on the safe side. No potassium at night at all since starting the molybdenum.

I may have to go slow with this, but I’m happy with the results as it means I’m making FAD, tamping down the adrenaline, am better able to sleep at night and less in need of potassium. All good.

I’m going to just feel my way as to amount and how long before I begin taking B2 once again. I took a small amount of B-12—almost nothing—a couple of days last week and one of them it instantly shot up my potassium need that night. So, I’m really going to try to get the molybdenum on board first.

With the new naturopath I’ve gone to, I’m also doing an intestinal cleanse as I mentioned and have so far started a natural anti-bacterial (xylitol) and Uva Ursi for whatever that’s for. I need to add Plant Tannins this week as well, then I’ll do this for a month, and theoretically, this ought to help my gut absorption of the food I eat and the supplements I take.

All to the good.

I felt weak in my legs yesterday and this morning, maybe a little shaky, but felt stronger by this afternoon and went for a walk.

In the blood work I had done last week, we tested both B-12 (now down to 1097; it’s been as high as <5,000) and folate 19.8 ng/mL where Normal=>5.4. Interestingly, that seems a little high to me and I think it’s a result of taking less B-12, which, because of my MTR and MTRR snps means that I need more B-12 to allow my cells to absorb the Folate…

@Athene* I have to say I was dismayed to read that zinc lowered cortisol, as I’ve been taking about 25 mg/day in divided doses. I was doing this not only as per the Fred protocol, but also because zinc is the cofactor for the BHMT gene which I am homozygous for. BHMT is what completes the short route around the Transulferation Pathway, according to Yasko, I believe. I hope that it’s helping me, rather than causing more problems…

All the talk about hormones is also freaking me out a bit. I haven’t had any for years… Maybe I ought to return to the gyn, get re-tested and have a talk.

I guess we can only try things and try to stay on top of enough blood work to make sure we aren’t going off the tracks somewhere else.

Today I feel good about the direction I’ve been taking. The last week or so has been that same roller coaster for me. A few good days followed by a few bad days and reaching the end of the week with a big sigh. I could do with a smoother ride!

I hope you are all doing well, and making progress, however slow it may seem to be.

 

[Athene*]

Good to see the update here @Kathevans Yes, ditto re Greg info - I'd have to check since it's in an email from ages ago now, but it sounds about the same, not that I remembered most of it until you wrote it here! The thing I'm still struggling with though is that I need cortisol to be high enough for thyroid hormones to work and since I dropped hydrocortisone I feel I'm low in cortisol. I wonder what your cortisol levels are now? Maybe they're better than they were...I'm hoping mine pick up soon.

So I'm not making enough FAD yet, I think, going by symptoms. I can potter around and get out for short walks but that's about it. Anything else makes me cold and tired and achy afterwards. I have the selenium and iodine, but am waiting for molybdenum to arrive in the post. I'm looking forward to trying it given your positive experience. Fingers crossed. I do eat molybdenum foods though, so I wonder why that's not helping? Anyhow, no harm in trying the supplement for a while.

Sorry about the hormone stuff. I've been on hormone and adrenal forums for years and they always advise keeping an eye on female hormones so the adrenals don't get too stressed. They advise progesterone too, for adrenals, but I read recently that it doesn't convert to cortisol in some women, so for me I'll leave out exogenous progesterone for now, just while things are still a bit in flux. In a body that's healthy the adrenals will produce some female hormones post menopause apparently, but with poor adrenal function that may be compromised. Maybe your naturopath would have ideas about raising/balancing hormones...

Yep, zinc is another thing that's always warned against on the adrenal forums and I've read about it elsewhere. But do look into it yourself. Perhaps a small dose is ok for you and like you say, you may need it. I've tried it a few times now and it does wipe me out - half of a 22mg Solgar chelated zinc. Maybe there are better forms you could do ok with.

Glad your new direction is proving successful!

 

[dogged_days]

@Athene. Thank you for the excellent links. It is very exciting and I look forward to learning more about it. I have to say I was lost in some of it. But I am so impressed with how much knowledge there is among the members. There is so much to learn.


I cannot make a recommendation for you as I am learning from you! But-- I can list my supplements for you to see the looney bin I live in. It’s quite extensive and expensive. Whatever you can derive from it, please feel free. I am on lots of hormones and precursors. I’d love to wake up tomorrow and drop it ALL. I’ll have to reassess soon with the oils-- hopefully doing their voodoo magic on me. I never knew what any of this was five years ago, and now I’ve crafted this fine mess (I prefer to call it my current work of art…for the lack of art in my life right now). One loses one’s hobbies with this having-to-be-one’s-own-doctor-bit. I haven’t listed doses; they are just normal, and there are repeats (2x per day). Cutler protocol co-factors are buried in there, too. I can chelate now, I figured out the countdown watch. Hoping this weekend, or next.

2.5 grains NDT per day.

3:30am
Iodizyme
Selenium
Pregnenolone
DHEA

breakfast
abscorbyl palmitate (vit c I can tolerate)
Phosphatidylcholine, Calbutyrate, omega oil 4:1 (body balance)
Ubiqunol
L-Tyrosine
B2 FMN
magnesium malate
Vitamin D (5k)
Vitamin A
B2 FMN
b-2 - 100 mg
chromium piccolinate
taurine
manganese
benfotianmine (vit B-1)

lunch
abscorbyl palmitate
vitamin D (5k)
Vitamin A
B2 FMN
P5P (b6)
b-2 - 100 mg
chromium piccolinate
molybdenum
vitamin E
benfotianmine (vit B-1)

dinner
abscorbyl palmitate
calcuim D-glucarate
DIM-Plus (2x estrogen flusher)
Milk Thistle
magnesium malate
Evening Primrose Oil
biotin
Zinc (may drop)
Vitamin K2

bed
Tryptophan
Melatonin

yikes. it's like a really complicated recipe.
Progesterone is given by a doctor’s prescription where I live. My naturopath prescribes it for me. Regarding allergies, they are pretty acute, especially when I wake. My eyes are streaming tears for about 45 minutes, it’s really a very, very strong reaction. Cortisol is extremely low the morning, still. I take the zinc at night; think I’ll drop that for a bit. Cutler recommends lots of it with chelation. I am up and down in the day. I’m just not great at identifying what’s happening. I know I don’t feel good. The complexity of the ovarian-thyroid-adrenal axis really overwhelms me. Especially without the thyroid. Managing this many things is a nightmare.

Based on your discussion of folate and epithelial issues: I noticed my cuticles and nails going downhill last week. They were so pretty…my hair also turned very coarse, especially the ends (the hair can change weekly like that, I keep thinking this is metal, but I am really wondering about it as it is happening a lot).

Recall I dropped my b oils down from 4? or 3? (I can’t remember and I’m too tired to look back) to 2 doses last week? Wonder if it has something to do with that. Saturday I crashed again. I slept all day with terrible muscle soreness (what I believe is fibro re-flaring; the muscle soreness had been encroaching all week). Sunday I thought what the heck, so I increased the 5-mthf to 12 mgs (I had been on 4mgs per day). Well my body (and fingers) got really full and “un-dry” looking. My nails looked instantly healed. My system felt different. My skin felt really, really different. I wasn’t as depressed, quite honestly. I was able to do work around the house as well, but I’m not sure that had anything to do with it. I can usually get it together the next day (most of the time) after a full crash day. I had eliminated the really dry skin stuff after starting FP, but it came back in last week. It could be from dropping the cortisol...(recall the eczema flareup on my nose...), OR about 2 or 3 weeks since dropping the high dose methylfolate, OR about one week since dropping the oils dose. I don’t know which or what or all… but maybe 3 doses b per day (if no adrenaline issues) and bring the 5-mthf up until I can get back to healthy nails, my harbinger of all things it seems for me…I’ve had ugly hands all my life. I was enjoying that while it lasted. I’m not convinced I still don’t need a lot of folate after Sunday.

I didn’t resume the dose today, but am considering it, as my nails and hair are a sure sign something is up –or down and I need to really piece that together with the other symptoms for a better picture. Now I’m just blathering. Off to bed.

 

[Athene*]

@dogged_days I'm no expert We're all just learning and muddling through.

I don't know anything about a lot of those chelating agents etc.

You have pregnenolone there. I could be wrong, but from what I've read, that can convert too much to oestrogen in some women (or progesterone). It can convert to a lot of hormones as you know, and it can do it differently in each man and woman. It can be hard to predict. If you're postmenopausal, you do need some oestrogen so that could possibly be ok in your case.

The thing that puzzled me in your list is DIM. That's an oestrogen reducer. So my thinking would be that might be counterproductive post menopause. If you think you're too high in oestrogen post menopause, then it's coming from exogenous use (like preg or prog over converting), not the ovaries, if you see what I mean.

You also have calcium D glucarate. Another oestrogen blocker. I was considering both this and DIM for myself right now. But not if I was postmenopausal. Oestrogen plummets at that stage as I'm sure you know, so you would need the oestrogen you're getting from pregnenolone or progesterone (but you probably wouldn't need both, would you?). Correct me if I'm wrong.

With oestrogen dominance, from what I understand, it's not necessarily a matter of cutting oestrogen out, but making sure that it's in a good ratio with progesterone. You do need some oestrogen. And you don't want to become progesterone dominant.

Progesterone can convert (quite a lot) to oestrogen in some women too (like pregnenolone). So if you're one of those women you would only need a little progesterone. Though in your case with low cortisol you do need progesterone or pregnenolone..

Could you be getting too much oestrogen from using both pregnenolone and progesterone? Maybe looking at that could allow you to drop DIM and calcium d gluc?

Alternatively, could you be progesterone dominant now if pregnenolone is converting more to progesterone? Progesterone is soporific. I can hardly keep my eyes open when it comes in. Could that contribute to your drowsiness? (I do understand this illness causes exhaustion too, but it's worth thinking about maybe?)

The mind boggles. Would you be able to get your hormones tested easily? Did you mention that?

DHEA can counter cortisol. You may know that. Also, if you get your thyroid and cortisol levels corrected then DHEA would normalise on its own, from what I've read. And you mentioned you were taking testosterone. But DHEA converts to testosterone (does pregnenolone do that too?), so that's worth looking at?

I must stress that this is only from my reading of blogs, forums, articles, book excerpts etc etc over the years and recently. I haven't studied any of this formally and there may be things I haven't covered or have missed (very likely).

I'm sure you've read countless sources too and you may know more than I do about lots of things.

I'm just sharing what I know, because I would have been lost without other people helping me, and I avoid medics like the plague.

Hope all is going well for you.

I got my gene data back from 23andme last week. So far I've found I'm homozygous (+/+) for both MTRR A66G and MTHFR A129C, so that would explain my need for methyl b12 and folate.

I still have to check out the other data, snps etc. I was relieved to see VDR BSM and VDR TAQ seem normal, so at least I can relax about vitamin D. I had thought I might have some lurking issue there, but thankfully not.

Have you had your gene data analysed? VDR (vitamin d receptor) could be a good one to look at (up regulated or down regulated) for you because vitamin d can help to make progesterone too and is so good for autoimmune issues.

@Kathevans I'm sure you've more interesting things to think about, but looks like I'm in the MTHFR/MTRR club, at the very least. The gods alone know what else is going on inside me...

@dogged_days How's your steroid withdrawal going? I'm finding it tough, but manageable so far. Still determined not to go back on it, and 'praying' I don't have to.

Like you, I use extra methylfolate on the tough days and it gets me through. If I'd got methyl forms of Bs into me years ago I wouldn't have needed steroids (and maybe not even thyroid med). Sigh...

Anyhow I'm still slapping on the B oils

 

[dogged_days]

The thing that puzzled me in your list is DIM. That's an oestrogen reducer. So my thinking would be that might be counterproductive post menopause. If you think you're too high in oestrogen post menopause, then it's coming from exogenous use (like preg or prog over converting), not the ovaries, if you see what I mean.

Hello @Athene. Reading your words carefully, over and over. Many aspects of the regimen are left over from before the endometrial ablation, when I was peri. But now that I am post, it looks like there could be some counterproductive supplements in there. Thank you for taking the time to try to shed some light on what could be going on. I’m thinking I can drop the DIM, Calcium D glucarate, and progenolone.

DHEA can counter cortisol. You may know that. Also, if you get your thyroid and cortisol levels corrected then DHEA would normalise on its own, from what I've read. And you mentioned you were taking testosterone. But DHEA converts to testosterone (does pregnenolone do that too?), so that's worth looking at?

I recall Johnmac dropping DHEA after dropping his HC. Think I’ll drop DHEA, as well, was considering it. I'll let you know in the coming weeks what happens.

@@dogged_days How's your steroid withdrawal going? I'm finding it tough, but manageable so far. Still determined not to go back on it, and 'praying' I don't have to.

It’s going as well as can be expected. I’m exhausted, but comparatively speaking, I can’t complain about being off 25 mgs. The cortisol is all over the place still, but I’m not going to add to it exogenously. My blood pressure is still very low. Even when it feels high and I measure it; it’s never in range, like 105 over 60. It just feels like my heart is pounding, sometimes. I’ve never even seen it near 125 over 80, much less 135 over 85, “normal range.” I’ve had low BP and electrolyte issues since youth. Very weak, sensitive to light, always picked last on the team… Something is still not right, but I’ll just keep pushing forward until I can get some tests. I am financially compromised since the dentistry. The 2x2 mb/ad oil dose seemed stable this week. No sign of adrenaline whatsoever. But zero energy. I am just exhausted! Collapsed after work every night. Waking up with severe hip subluxation (and C2 & occipital/axis - neck); that is still my biggest symptom.

Could be methylation, could be metals coming out at the 4 month mark. It’s acting like metals, since symptoms creep up on you until they peak at the 9 month mark. I just went through these cycles for 3 years, removing 5 amalgams. It was a bear. Lots of hidden infection. I’ve come to recognize the cognitive fluctuations,and I’m quite compromised right now. I burn everything I cook, leave water on, make dumb mistakes at work, etc. Some days I go straight home, can't get errands done, feel too vulnerable. Extreme social phobia for the last 3 years. Personality of a metal toxic person, if you've read anything about the subject...Lost all friends, lost precious hobbies. It's a big deal for me to reach out in a forum like this. I normally lurk. Can't even email Greg. I know we've all experienced this withdrawal, whether it's heavy metal toxicity or ME/CFS or any other illness that steals your life from you. It's a hard time right now, but I've worked too hard to get this far...to ever stop trying to get well.

Had an excellent acupuncture session. Had not had one in 3 months, I respond really well and wish I could afford it, at least monthly. Everything is out of pocket, except thyroid, unfortunately. But wow! I felt spectacular afterward. A rare moment.

Like you, I use extra methylfolate on the tough days and it gets me through. If I'd got methyl forms of Bs into me years ago I wouldn't have needed steroids (and maybe not even thyroid med). Sigh...

Truer words were never spoken! And I might have never been talked into a thyroidectomy. There are many of us who have had this epiphany...thanks to this forum, we can share these nuggets. Thank you for your continued discussions on all things B.

 

[Kathevans]

I'm sure you've more interesting things to think about, but looks like I'm in the MTHFR/MTRR club, at the very least. The gods alone know what else is going on inside me...

I wish I had more interesting things to think about!

In fact, I'm just trying to increase my molybdenum amount, after having started fairly low. The results are still mixed. Some much better nights interspersed with some just as bad as ever. The strange thing is that after having some recent blood work--as noted above--a bit more has been coming in, and frankly, it's just confusing. Despite the fact that I was taking a very low dose of a B-Complex - about 1/2 per day of an already relatively low (roughly 25mg/B) Seeking Health B-Minus, some of my Bs are strangely high -
Vitamin B6 My Value: 48.7 ng/mL Standard Range 2.1 - 21.7 ng/mL
Vitamin B2 THE RESULT IS >400.0 NMOL/L SEE NOTE nmo/L 6.2 - 39.0 nmol/L
Vitamin B3 (Niacin) 270 ng/mL serum concentrations may range from less than 20 ng/mL to about 30,000 ng/mL
Nicotinamide <20 ng/mL 40 ng/mL.
Vitamin B5 335 ng/mL < 275 ng/mL

So, what about those B2 and B5 (Pantothenic Acid) values!? This blood work was drawn after having stopped
all the Bs for about a week and then added B2 back in for two days. But greater than 400.0 NMOL/L for the B2? In a range of 6.2-39.0??? Jeesh. I know it's good for us to have high B12 levels--and mine have dropped precipitously since I've stopped --from over 5,000 whatevers to about 1,000. But I really don't know about B2. I want to ask Greg about this, whether the B2 levels are indicative of serum levels only, and like the B12 not indicative of cellular levels. Will adequate molybdenum be sufficient to help my body metabolize this B vitamin?

But I want to wait for my molybdenum results to come back to correspond with Greg (as luck would have it, they lost this blood sample, so I had to have it redone.) Interestingly, my sister, whose genetic profile is, of course, similar to mine, has reported her doctor told her she was low in molybdenum, so I'm thinking it will hold true for me as well. We shall see.

@Athene* Can I add one more thing for you to think about?! Just wondering if you are MAO++? That's the gene that seems to indicate a higher need for B2.

@dogged_days Oh my goodness. I feel so relieved to be on fewer supps--yet can't wait to find my way back to the B12 Oils. I really feel they have been magical in reducing pain for me (in combo with the folate, of course).

Thinking of you all, hoping your way is smoother...

 

[Athene*]

Thanks @Kathevans . I've been checking gene data for days and am seeing plus and minus signs in my sleep.
No to MAO++
Highlights so far:
+/+ for BHMT-08, CBS A360A, MTHFR A1298C, MTRRx3 (A66G,A664A, and another one I've never heard of), PEMT, SOD2, VDR taq

Thank you so much, by the way, for posting a document on a thread I found about PEMT and choline. I was taking choline bitartrate (Solgar choline/inositol) and wasn't sure if it was helping and because I was paying for so many supplements I dropped it a couple of months ago. Now I'll reconsider.

I'm taking Me/Ado B12 oils, B2, iron (food) and B6 (recent addition), among other things, so I hope I'm covered against hcy building up. It was normal a couple of years ago.

I thought it was ok to have VDR taq after reading some threads here, but now I'm not sure. I can't figure out whether I need to supplement vitamin D, or not.

I have lots more to figure out, including zinc & copper needs though as discussed I worry that zinc could lower cortisol. I do wish I could be doing something else instead of all this. I'm sure I'm not the only one.

That's curious about your high B2 result. Like you, I always question serum tests now, like my high b12 serum, but low cellular (OAT test was low).

On the phone to GPL labs about the OAT they said supplementing pantetheine can raise it very high, very quickly, and that it was okay to be high - helps adrenals.

Please do let us know here what G says about the B2 serum level.

My molybdenum is waiting in a post office I can't access until tomorrow. Interesting to note you are now raising it.

I had a great day yesterday - cleaned the whole house, stood around for hour doing shopping, went for short walk (20 mins). Felt like a normal person.

Later that evening I got cold and weak. That night I was achy, sleepless, and hot and cold.
Today I was achy and weak all day and then by 11pm felt full of energy. Now 4am and can't get sleepy and wish I could go for a walk. I even went downstairs and stood for an hour doing ironing at 3am. Still full of energy after it...

Feels like cortisol is all over the place.

Yet, it's kind of amazing that I'm making my own cortisol again, even if it's still rather haphazard...

 

[Athene*]

@dogged_days Good to hear from you. Sounds like you're having it tough. Also sounds like you are tough and refusing to lie down and give up

Please don't drop all those hormones together though. I'm impatient too and tend to drop too many things at once. Trouble is I can't tell what's causing what when I do that. So I've learned the hard way. Ideally you'd need to get hormone tests. If you can't manage that for now, maybe just drop one hormone and see how that goes for a few weeks? Some hormones take weeks to show their effects as I'm sure you've experienced over the years.

I get it with feeling vulnerable. I limit my outings on my own and don't go far from home. It's horrible to have such a curtailed life. It's incredible how you manage to get to work every day. I was working outside of home part-time until last summer and just couldn't manage it any more but I hope to get back to it soon. In the meantime I do some freelance work from home which luckily I can mostly do on my laptop.

Keep us updated on your progress here when you have the energy to do it.

Glad you're still using the b12 oils. I was considering moving up to 3 sprays daily, but I'm not sure it's necessary and it may just be panic due to my lousy gene data, which I knew would be lousy really, given the amount of stuff I take just to stay upright, and given my OAT test results, but seeing the genome printed out with all those ++ signs in so many wrong places means so much more fine tuning. It's like endless bloody homework...

 

[Kathevans]

It's like endless bloody homework...

And all I want is a summer vacation away from school work!

More when I get those molybdenum results. My reaction to it is still very strong. Curious, as Greg would say. I'm thinking I ought to take it only at night as it knocks me to my knees during the day. Yikes.

I did take my first drop of the adenosyl/methyl B-12 oils yesterday. I decided with all those high Bs, I might not be short of the B2 and so just went ahead... The good news is that it alleviated that awful tight feeling in my face for much of the day, though I had a return of the frontal/between the eyes headaches last night and this morning. And my sleep last night was not nearly as good as the 7 hours or so I was often getting with the molybdenum alone.

So, I wonder how you can tell if that wide-awakeness at night is ATP turn-on or high cortisol... Interesting about the high B5. The Seeking Health B--Minus has it high specifically for the adrenals. But I also read just this weekend that high panothenic acid reduces biotin! Well, that may explain why mine--and I think your's @Athene* has been low. So I was back on that, dividing a 1000mcg into 4 yesterday and taking 250mcg. I can't even remember why that is important to the B2/B12 synthesis, only that it is!

Thanks, Athene, for the Ron Davis links. I read some of them over the weekend and will continue with the thread here on PR. As you say, there's just so much to think about. That said, I really can only do about one thing at a time. I'm going against my own rule to be fiddling with the oils and the molybdenum at the same time, but I think my sense that I really need the B-12 may trump (ick, awful word!!) my hesitance. And yesterday was a very reasonable day for me. I was going on 7 hours of sleep, so that helped, of course. I managed to head out and do the family shopping and make a lovely salad while my husband grilled chicken. Like you, I felt normal. What a wonderful thing to be able to say. I didn't make it for a walk, though I had the day before.

I'm just waiting on some results for the moment--and will be back with them as soon as I hear myself.

Here's to more good days...