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CBS revisited

freshveggies

Senior Member
Messages
196
You really need more protein than 25g. That's basically what a 4-year old needs. You are female, right? The recommended minimum for adult females is 46 grams. I probably eat 100-150 grams.

http://www.cdc.gov/nutrition/everyone/basics/protein.html
I agree, but was going with what I read about low to no protein for cbs folks. I just can't do it. I kind of thought protein might be stimulating from what I read on heart fixer. Now I am going to go up to 50mg.
 

adreno

PR activist
Messages
4,841
I agree, but was going with what I read about low to no protein for cbs folks. I just can't do it. I kind of thought protein might be stimulating from what I read on heart fixer. Now I am going to go up to 50mg.
As I understand it, ammonia production is heaviest from red meat, lighter from chicken and fish, and lightest from vegetable protein. So you might get away with eating more vegetable protein and some fish/chicken. Just remember if you rely on vegetable protein, you have to mix them so you get all essential amino acids. Rice mixed with peas or lentils should be fine, for example. I have just made some similar adjustments, like cutting out beef and changing my protein drink from egg based (ugh) to rice/pea based. We'll see how that goes.
 

dbkita

Senior Member
Messages
655
My sleep stack includes:

0.3 mg melatonin (time released)
200 mg magnesium glycinate
200 mg pharmaGABA
15 mg zinc
1 banana
6 g hydrolyzed collagen I&III powder (high in glycine)


This combination almost never fails to make me sleep, and I usually sleep the entire night. Another important thing is electrolytes. If unbalanced, or low in electrolytes, I have tachycardia and racing thoughts and can't sleep. Last night I had this problem. A glass of water with 1/4 teaspoon sea salt and 1/4 potassium citrate put my lights out.

So from the powder you get like say 1.5-2 grams and from the Mg-glycinate you get another say 1.3 grams or so. So like 3 grams total let's say?

Btw I am starting to find that the right dose of niacin is another, different "hammer" for me. So many possibilities to explore. I might try niacinamide instead. Apparently stimulates benzodiazepene receptors in the brain. Hmmm. Very different pathway than glycine.


dbkita

So inflammation makes you sleepy? This means I shouldn't take any anti-inflammatories (turmeric etc) at night? Could this also why coffee sometimes makes me sleepy? It also happens the few times I've tried methylphenidate. The last time I tried it, just 5mg made me so sleepy I had to go straight to bed. LOL! It's a stimulant drug!

I really should stop the coffee also, I am madly addicted to it (about 2 cups per day). It's terrible for my SNS.

Yes on the inflammation. I wouldn't take the turmeric near bed. I would stay away from coffee personally. It can't be good for your SNS. Then again you have some funky love - hate relationship with your glutamate. My relationship is primarily hate-hate :)
 

dbkita

Senior Member
Messages
655
dbkita, thanks for the reply. I tried 2 mag glycinate last night and it went ok. Not sure if I should try anymore, but I think I used to take 3 at bedtime.
5htp will keep me up all night(probably because I am MAO A), not sure about tryptophan. I have not tried it yet. Zinc will keep me awake the whole night if I take it ab bed. I just am not good taking much at night or even dinner.

It has been a couple of years since I have taken a 24 hour hormone urine test. Where do you get yours.

I did a saliva test for neurtransmitters, but did it at 5:00 am. Was not happy that the test didn't offer 2 samples. One at bed time and then one when you wake early. NeuroScience was the one I used.

I might have to try breaking moly up. I think I could possible use more as I was not very high on it.

I have low DHEA and that can cause sleep issues. I just have a hard time staking it. It can be stimulating for me. And can cause nose bleeds for me. Found out it is some enzyme deficiency per Yasko book. I need to look into that more. Said something about taking NADH and d-ribose.

I took 50mcg's of lithium yesterday to help with glutamate balance and I am on the low side for hair test. It went ok so I am taking it today too.

I was going to take the butyrate in the am as I can't take stuff in the pm---sleep interference.

Progesterone can also be huge for a woman for sleep. My mom reacts bad to DHEA but wonderfully to progesterone. How much DHEA did you try? As a woman you need very little ...

50 mcg of lithium is nothing. Like Adreno said you get more than that from other source.

I have nothing good to say about serum or saliva neurotransmitters, about they only good is if they show you have serotonin overload in the periphery or something like that. They have little to no value in my eyes.

Butyrate is in a holding path on my list :)
 

adreno

PR activist
Messages
4,841
I have nothing good to say about serum or saliva neurotransmitters, about they only good is if they show you have serotonin overload in the periphery or something like that. They have little to no value in my eyes.

I agree with this. I am skeptical of hair test, but even a urine or serum test will only measure peripheral levels of neurotransmitters, and not CNS levels where it really matters. Also, we have to remember that the neurotransmitter levels vary between different regions of the brain, so you might have low levels in one region, but high in another. So basically these test are not very useful. Perhaps for measuring NE levels in the periphery (for POTS diagnosis) they might have some use.
 

adreno

PR activist
Messages
4,841
So from the powder you get like say 1.5-2 grams and from the Mg-glycinate you get another say 1.3 grams or so. So like 3 grams total let's say?

Btw I am starting to find that the right dose of niacin is another, different "hammer" for me. So many possibilities to explore. I might try niacinamide instead. Apparently stimulates benzodiazepene receptors in the brain. Hmmm. Very different pathway than glycine.

Yes on the inflammation. I wouldn't take the turmeric near bed. I would stay away from coffee personally. It can't be good for your SNS. Then again you have some funky love - hate relationship with your glutamate. My relationship is primarily hate-hate :)

Yeah, I think 3g of glycine is just about right. I do feel a slight stupor in the morning. A cup of coffee and I'm out of it, though.

I will try your B3 suggestion. I do not like niacin (flush), but will try some extra niacinamide before bed. What would be a good dose, 250mg? Perhaps picamilon would be better?

The reason I got into NE (coffee) was that Mirtazapine abolished my POTS. Being an alpha-2 antagonist, it causes NE release in the LC. I've later tried an NRI (reboxetine) but it didn't have this effect. I tried cutting out coffee for a year at least, but didn't feel much better. That first cup after a year was like speed, lol. I found it really improved POTS, but when the effect wore off a few hours later, I had a severe crash, with shaking and leg weakness. It was very similar to the crash I get when HC wears off after 3-4 hours. So maybe the effects of coffee is from boosting cortisol, I don't know. Or maybe it's the DA I need, and not the NE. Maybe too much DA is converted to NE in my case.

I will try to reduce to one cup in the morning. That might actually have some benefits, as it will boost NE and cortisol in the morning, thereby helping to correct circadian rhythm, along with melatonin at night. On my saliva tests, my cortisol was flatlined the whole day, no real variation. But that afternoon cup I have (maybe when my cortisol starts to run low) is likely bad for me, and I usually regret having it, as I often end up with more anxiety and brain fog, sometimes even sleepiness. In any case it seems my ratio of cortiol to NE is skewed. Is it possible that I can improve my cortisol levels, if I bring down NE? Does the high NE somehow contribute to depleting cortisol?
 

freshveggies

Senior Member
Messages
196
Progesterone can also be huge for a woman for sleep. My mom reacts bad to DHEA but wonderfully to progesterone. How much DHEA did you try? As a woman you need very little ...

50 mcg of lithium is nothing. Like Adreno said you get more than that from other source.

I have nothing good to say about serum or saliva neurotransmitters, about they only good is if they show you have serotonin overload in the periphery or something like that. They have little to no value in my eyes.

Butyrate is in a holding path on my list :)

I have tried as little as 5mg. Low DHEA equals bad sleep. Just wondering why I don't react well. Seemed to messs with my sleep more.

I have to have enough estrogen for progesterone to work otherwise the P over-rides the E

Have taken lithium for 2 days and I am doing ok on it.

Have you studied any about Butyrate?

Think I might have uncovered something ---ever since I started taking calcium d-glucarate, my breasts have been sore and then I can't take the right amount of hormones. I thought maybe my body needed less hormones and that is why I was getting the soreness, but I am thinking that the calcium d-glucarate deactivated my thyroid meds and I am showing my iodine deficiency. I am very deficient and am getting close to supplementing, but in the past it has caused me to not sleep at all. I have since found a very low titration schedule to start.
It is so hard to add new things to the pile when i already don't sleep. I will never know what is working.

Today is the first day of no calcium d-glucarate. I painted iodine on my breasts and it helped with the soreness.
 

dbkita

Senior Member
Messages
655
Yeah, I think 3g of glycine is just about right. I do feel a slight stupor in the morning. A cup of coffee and I'm out of it, though.

I will try your B3 suggestion. I do not like niacin (flush), but will try some extra niacinamide before bed. What would be a good dose, 250mg? Perhaps picamilon would be better?

The reason I got into NE (coffee) was that Mirtazapine abolished my POTS. Being an alpha-2 antagonist, it causes NE release in the LC. I've later tried an NRI (reboxetine) but it didn't have this effect. I tried cutting out coffee for a year at least, but didn't feel much better. That first cup after a year was like speed, lol. I found it really improved POTS, but when the effect wore off a few hours later, I had a severe crash, with shaking and leg weakness. It was very similar to the crash I get when HC wears off after 3-4 hours. So maybe the effects of coffee is from boosting cortisol, I don't know. Or maybe it's the DA I need, and not the NE. Maybe too much DA is converted to NE in my case.

I will try to reduce to one cup in the morning. That might actually have some benefits, as it will boost NE and cortisol in the morning, thereby helping to correct circadian rhythm, along with melatonin at night. On my saliva tests, my cortisol was flatlined the whole day, no real variation. But that afternoon cup I have (maybe when my cortisol starts to run low) is likely bad for me, and I usually regret having it, as I often end up with more anxiety and brain fog, sometimes even sleepiness. In any case it seems my ratio of cortiol to NE is skewed. Is it possible that I can improve my cortisol levels, if I bring down NE? Does the high NE somehow contribute to depleting cortisol?

250 B3 should be fine. That is what I have done a couple of nights. The effect is not as pronounced as taking say 150-200 mg or so niacin. Ironically one night I accidentally took 400 mg niacin and freaked thinking I would flush like crazy, but funnily enough as the burn came ... I passed out ... so can't tell you how bad the flush was since I was asleep :)

Anyways it can't hurt to try. If it does not work it does not work, right?

It is hard to say why coffee is good for you in some ways. You seem to straddle a difficult precipice with your neurotransmitters. Like I said you have love-hate relationship with glutamate while I have a hate-hate relationship with glutamate. On the other hand I have lived on norepinephrine all my life. To me a cup of coffee is like injecting rocket fuel in my veins. Too much. On the other hand my uncle uses coffee to go to sleep. Go figure. We are all very different.

If your cortisol levels are flat then your adrenals are sluggish either due to stress or poor HPA signaling or immune system override. Uncontrolled chronic NE is often (don't want to say always) a sign of he immune system hijacking adrenal output, since again it cannot otherwise do its job. The other way to get to this point is via neurotransmitter deterioration that essentially let's the NE beast out of its chains and again the immune system takes advantage of this.

The question is where you are at in either process. Are you on the up-slope where the adrenals are under siege but still somewhat responsive or on the downslope where not only cortisol but all or most adrenal products are too low and the immune system has won. Then SNS emergency dominance becomes the body's baseline and NE is king. That is not a good place to be in, trust me; where inflammation is sky high and you are exhausted but the NE is rampaging around like crazy because your body thinks it is the only way to survive.

That being said you seem to have some room to maneuver here. Remember though lot of healthy people get into trouble with afternoon coffees. n

Also remember TMG preferentially results in higher NE to DA ratios based on studies that look at their respective metabolites. No one knows why for sure I think, but the evidence is there. Still 500 mg is probably ok and you have CBS / BHMT needs.
 

dbkita

Senior Member
Messages
655
I have tried as little as 5mg. Low DHEA equals bad sleep. Just wondering why I don't react well. Seemed to messs with my sleep more.

I have to have enough estrogen for progesterone to work otherwise the P over-rides the E

Have taken lithium for 2 days and I am doing ok on it.

Have you studied any about Butyrate?

Think I might have uncovered something ---ever since I started taking calcium d-glucarate, my breasts have been sore and then I can't take the right amount of hormones. I thought maybe my body needed less hormones and that is why I was getting the soreness, but I am thinking that the calcium d-glucarate deactivated my thyroid meds and I am showing my iodine deficiency. I am very deficient and am getting close to supplementing, but in the past it has caused me to not sleep at all. I have since found a very low titration schedule to start.
It is so hard to add new things to the pile when i already don't sleep. I will never know what is working.

Today is the first day of no calcium d-glucarate. I painted iodine on my breasts and it helped with the soreness.

You have to be really careful with T4 meds and calcium since they can greatly alter uptake of the medications.

I have studied butyrate some and it seems interesting on multiple levels. Just haven't gotten to taking it yet. I tend to set up a queue and methodically take time to evaluate if something works or not. My bathroom closet is replete with cast-offs that don't work but for each five that don't when one does that is still a huge win.

I have learned some patience with supplements considering my own poor judgment in the past. Like I said I was way overmethylated for 2 years and paid quite a toll for it, not realizing what I was doing until I took time to sort it out.

Given my reflux I am thinking the zinc-carnosine is high on my queue. Also the lithium depending on what my incoming labs say. I also need to work in carnitine-fumarate at some point. Without it I think I am kidding myself about my Krebs cycle.
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
You mention sleep issues, but do you have lots of pain or intense periods of mental over-focusing? Mood swings? Night sweats? Racing thoughts? Heart palpitations? There are multiple things that can hit sleep. The biggest enemy is usually norepinephrine. Next is high cortisol at night. Then probably glutamate-gaba imbalance. In others it is sugar metabolic issues. Others it is pain. Overmethylation can do it too. There are many ways to end up at a "wired, but tired" state.Even hyperthyroid will keep you up. The list can be very long. I have probably missed about a dozen other somewhat common causes. A lot it comes down to hormones or neurotransmitters. Of course that is true of many things.

Hi Dbkita,

I once worked with a neuroendocrinologist in California, so I "recognize" some of the language you use. I've gone through your posts with interest and would love to hear your thoughts on norepinephrine.

My illness began 5.5 years ago due to a massive thyroid storm, after a doctor gave me thyroid hormones despite being hyperthyroid (don't ask, lol). I accidentally took a whopping amount (equivalent of over 7 grains Armour), and literally overnight I went from being an active young guy to completely incapacitated. It feels like my body is stuck in a state of excess norepinephrine, which eventually wore me down to the point where I'm currently homebound.

You know how when you exercise, you can feel your heart pounding in your chest? I feel that all the time. And not just in my chest, but in my left arm, left leg, and left side of my neck. If I lay down and put a pillow on my chest, it bounces up and down with each beat. I also tend to feel hot even though my body temperature is low. So these signs point to adrenaline, but at the same time, my blood pressure and heart rate are on the low side, which doesn't fit. I also don't have any emotional anxiety or pain, and my plasma catecholamines are not high.

My understanding is that norepinephrine is a back-up system that the body uses as a compensatory mechanism when energy production is hindered. It's like a raging bull that needs to be controlled. Signals that can balance NE include serotonin (SSRI, 5-HTP, tryptophan), dopamine, GABA (benzos, GABA analogues), taurine, glycine, cortisol, T3/T4, DHEA, pregnenolone, progesterone, and testosterone.

I tried hydrocortisone for awhile, which helped somewhat, but I chose to discontinue it because I didn't feel stable on it. I also tried taking an SSRI for a couple months (Lexapro), and there was one day where the heart pounding completely disappeared, but unfortunately the effect didn't last. Beta blockers had a mild benefit, as do benzos. I haven't felt inclined to continue any of these pharmaceuticals long-term because the benefits weren't particularly impressive.

So these experiments indicate that NE might be the culprit, but it's not 100% guaranteed. You seem to be familiar with this area. Do you think adrenaline is the issue? If so, are you aware of any other ways of reducing it? I'm wondering if Lyrica is worth trying, since it's been used for people with familial dysautonomia. Besides adrenaline, can you think of any other signals that might be playing a role? A lot of people talk about glutamate toxicity, but I don't think it's a major issue here.

You seem to be well-versed in this area, and I'd appreciate any input. Thanks! :)
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
Given my reflux I am thinking the zinc-carnosine is high on my queue. Also the lithium depending on what my incoming labs say. I also need to work in carnitine-fumarate at some point. Without it I think I am kidding myself about my Krebs cycle.

By the way, have you ever tried d-limonene (orange oil) for your reflux? Life Extension did a study on it.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I am curious which SNP you have for CBS that is homozygote and also what were some of the other key SNPs from your test(s)?
\

Do you have homocystinuria? What are your homocysteine levels typically? Just curious.

P5p is the cofactor for CBS so it would make sense that CBS could be upregulated by mega doses of P5p. However, the treatment using P5p is only responsive for about 50% of patients. The others go on low methionine and low protein diets and maybe try TMG dosing. Those second class of patients may react badly to methylation protocols depending on their exact guidelines.
I took the standard Yasko panel 4 years ago and am homozygous for CBS C699T +/+ and one other CBS defect. I have 3 AHCY defects, 3 BHMT defects, MTR and MTRR defects, MTHFR 1298C defect, 3 high blood pressure defects, 3 defects causing low BH4, 2 COMT +/+ DEFECTS, and miscellaneous to equal 18 defects out of 30, many homozygous. I cannot even remember them let alone list them, sorry.

I had to be on high dose B vitamins since I was a baby. My mother read up on nutrition in self-defence because I was such a sickly child. Despite taking B100 (inactive) my entire life, the only times I had homocysteine measured before discovering Freddd's protocol, it was 9.something at age 45 and 12.something at age 50. With Freddd's protocol I got it to a perfect 6.3. It is creeping back up to 9 because I often do not take my full methylation constellation of pills. I have to take 40 pills a day or health conditions arise. However I get horrendous stomach upsets from so many pills and sometimes puke, so I am no longer so compliant as to have a perfect 6.3. Either that or it is due to allergies which use up my zinc, which is needed for methionine synthase. Life Extension says that for every 3 points rise of homocysteine above 6.3, you have a 35% more risk of stroke or other cardiovascular event. I can tell you that when my homocysteine is 6.3, I can sleep on my side without crushing my veins (first time ever in my life I could do that). Homocysteine seems to cause circulation/neuropathy/blood vessel inflammation (Raynaud's) type problems for me that I can feel. I get pins and needles in my arms just from holding the steering wheel of the car, for example, when my homocysteine is at 9 instead of 6.3. etc.

I do not believe science knows the result of combining a lot of genetic defects like mine and so I advocate for everyone to test their homocysteine and their ammonia and whatever else they can in conjunction with genetic testing to sort out the combinatorial (or whatever other) issues there are which can make your actual results differ widely from what Yasko tells you is in your genes.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
You really need more protein than 25g. That's basically what a 4-year old needs. You are female, right? The recommended minimum for adult females is 46 grams. I probably eat 100-150 grams.

http://www.cdc.gov/nutrition/everyone/basics/protein.html
Cool! Thanks! I have never seen anywhere anything indicating how much protein is actually needed for health, I often only eat 40 grams. I did an ammonia test after eating 80g and verified I can tolerate that much but I am simply not a big protein eater. Just recently my father has become a kidney dialysis patient and I have learned that blood albumin should be 4.0 or greater or it sriously impacts survival (my father's is 3.4, mine is 3.9).
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
My sleep stack includes:

0.3 mg melatonin (time released)
200 mg magnesium glycinate
200 mg pharmaGABA
15 mg zinc
1 banana
6 g hydrolyzed collagen I&III powder (high in glycine)


This combination almost never fails to make me sleep, and I usually sleep the entire night. Another important thing is electrolytes. If unbalanced, or low in electrolytes, I have tachycardia and racing thoughts and can't sleep. Last night I had this problem. A glass of water with 1/4 teaspoon sea salt and 1/4 potassium citrate put my lights out.
My sleep stack:
DHEA (earlier in day - before 7pm at the latest)
magnesium citrate 200-400mg (throughout day, no more than 200mg at once)

This never fails to let me sleep. Before I discovered DHEA, then I could only sleep if no PMS and before menopause (PMS forever). The magnesium I actually take as a cal:mag citrate 1:1 pill and it helped me relax a bit, and significantly more if I took a 3x daily dose, but did never quite put me totally out w/o the DHEA. AFter menopause I suddenly (during PMS only at first) developed high bp and at that time I discovered that the cal:mag would lower my bp 30 points but only for 2 hours. So my body could not hang on to the calcium and/or the magnesium without the help of hormones.

To most of you, if your biochemistry used to work (better anyway) and it no longer does, consider your hormones.