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Wrong Diagnosis Site - Fredd's Protocol

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Everyone has stinky pee after eating asparagus. The ones that think they don't just can't smell it in their own pee, but other people can. Yes, there was actually a study :p

Hi Valentijn,

My son loved asparagas until he was about 5 when he noticed the smell for the first time. Suddenly he "hated" it and refused to eat it ever since and he is 27 now. It's something everybody else in the family eats lots of. Onions, garlick, fish and all sorts of things affect the smell of urine. Kids can be funny. However, once the decide something like that it often sticks and they forget why they "hated" it.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
sorry Rydra to confuse you with what I was refering too.. I wasnt refering to you talking about your own case thou now you have explained you were and that you got that from your doctor (I wasnt even aware you had these issues yourself).

but that part saying it isnt possible for a person to have adrenal issues and have blood pressure going high when standing or have high BP and also have adrenal issues. .. my reference was refering to this view of what you said below.



Unfortunately that is the thing which having ME.. it often dont follow the normal medical rules that most doctors know as many strange things can be happening in the illness eg me who has had low sodium levels before, low cortisol (adrenal issues) and BP which goes sky high when i stand. There are others at this site which have ME, adrenal issues but have the high blood pressure all the time. So due to that I just got to say your doctor is wrong and there IS A CHANCE someone can have these issues with also high BP (due to the BP dysregulation etc which goes on in someone who has ME). but yeah.. low BP would be the more norm. :)

A doctor esp when it comes to ME people, should not rule out things and say there is no chance of you having something without proper tests done to rule them out

sorry i so strongly had to point that out.. im sick of doctors missing things due to lack of ME understanding which often leads to things going different to what they think could possibly happen.

...

sorry i still havent replied to your pm to me a while back. I will get there some time (I also have others in my inbox awaiting for a while to be replied to). Ive just been busy dealing with the pms currently trying to help me find good doctors or sort my meds/supplements out... its all a bit much.

anyway.. just wanted to let you know I still havent responded and will do some time.

best wishes
Tania

Hi Tania,

YOu have it pinned. All during the 80s and 90s when I was trying to get diagnosed not a single doc ever figured out anything worth figuring out about my illnesses. I was called a liar, a fake, an alcoholic (never drank more than a literal sip, couldn't tolerate it), "too many symptoms to be believable", hypochondriac, "health care workers disease", IAIYH, conversion disorder, etc.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I experience a lot of sinus pain and yellow mucous from the sinus cavity, (yuck, I know) and wonder if sinus problems exacerbate CFS? Has anyone been helped by treating sinus problems. I use the NeilMed sinus rinse but it doens't do much. Wondering about sinus surgery?

Hi Rockt,

A thick, kind of dry sticky mucous that clogs and causes sinus problems, coughs that can't cough the crud out are characteristic of tissue changes that occur in the mucous membranes when methylation breaks.
 

Pea

Senior Member
Messages
124
Fredd, what do you mean by when methylation "breaks" - when it is blocked, or when it starts?
 

Rockt

Senior Member
Messages
292
Hi Rockt,

A thick, kind of dry sticky mucous that clogs and causes sinus problems, coughs that can't cough the crud out are characteristic of tissue changes that occur in the mucous membranes when methylation breaks.

Thanks Freddd.

"Breaks" as in "becomes unblocked and starts working"? If this is what you mean, then this is a good sign?
 

Idie

Senior Member
Messages
134
Freddd,

I got back in today and was trolling around annoying everyone with my opinion for the basic reason of looking for new info. Did not find anything really new so I guess I'll just ask:

I have this great protocol which actually works. But it is 42 pills and it makes me so extremely nauseous that I can't bear it. So, I, who has all my life been extremely reliable about taking vitamins since I felt so bad w/o them, started skipping and missing. (I never missed DHEA, pregnenolone, C, E (except for a few days), cal/mag, or D). I got totally out of taking methyl supplements which I had never done in my life before!

So you know of course I started getting horrible symptoms. I cant even describe...just could not bear to be in my skin. Knew what I had to do but still cannot stomach all those pills. Here is what I am taking so far and what I feel is internal trembling. Any suggestion of what to add back next to nix it?

Thonre Basic B 2x/day
Soloray cal/mag 4 pills (should be 6 but all I manage is 4)
sublingual D3 (5000 on alternate days 10,000 - this is prescription)
2g C
1g E
1 curciferous vegetable from LEF (anti-cancer)
Olive Leaf Extract (big diff between cant live with myself vs I can)
75mg DHEA
30 mg pregnenolone
some amount of estrogen shot in rear by doc every 6 mos.
50mg progesterone (just started today - it is prescription TBD test next week if I really need it)
300mh benfotiamine
K2

That's it. I sometimes take P5P, mfolate, TMG to see if it makes me feel better but it doesn't
so I haven't worked back up to taking it daily yet - I know I need them. I proved I did not
need the sublingual B12 (hcy test perfect either way - as long as I take the p5p, mfolate, and tmg).
I don't seem to need aB12 (uMMA perfect, makes no diff to me when I take it either).
I proved I do not need carnitine (blood test) when I get my p5p, mfolate, tmg).
Not on your protocol, but I also proved I dont need Yaskos charcoal and yucca (serum ammonia tests).

I am reluctant to just take everything - I want to add things back slowly.

The thing that is bothering me is internal trembling. It is something I have suffered from
lifelong but in the past only during PMS. Menopause is PMS forever. I have not suffered
from it for the most part under the full protocolm, but even then on occasion I did (just
much less frequently). So not sure I have a good handle on it really. What, besides, everything
would you specifically add back / try next?

Thanks.

Rydra

Paradoxically as I ask this question I do feel more peaceful, so maybe it was just amount of time back on active B's, but I don't think that's all there is to it. I also drank a boatlaod of milk today and maybe - well dairy is one of the top 5 sources of potassium in the American diet, so that's a possibility. Not sure of anything. I don't have this one nailed. Thanks

Dear Rydra,

I had to drop you a note to say that I too have the internal trembling and I have had it every since I began the protocol. It feels like a tuning fork in my body. Sometimes it is very pronounced and sometime not so much but it is almost always there. I have tried stopping and starting so many things and still it persists. I tired increasing my metafolin (I currently take 800 msg) to two of the 800 mcg and within three days, I got very dizzy and had to stop and go back to the 800 mcg. When we were posting on wrong diagnosis I raised this issue of internal tremors but no one seemed to have any answers. I wanted you to hear that I have the same thing too and mine has not been a result of stopping the protocol. It feels like I'm missing something or not getting enough of something or the balance is wrong. If we could figure this one out I would be dancing in the streets! The constant tremors are not only annoying they are worrisome.

Idie
 

Pea

Senior Member
Messages
124
Rockt, continue to look for causes/solutions for your mucous before you resort to the sinus surgery - I have heard it can cause scar tissue and you end up with worse problems.

Look into apple cider vinegar "with the Mother." Make sure it doesn't conflict with anything you're taking or have, but it can get rid of inflammation. Of course also make sure you're drinking enough water.

I'm interested in the mucous thing because my friend who I'm helping with methylation gets the head/throat mucous so we're trying to figure out what he has going on - if it's a food reaction, or some immune thing. The mucous actually got a bit worse the day his new less folic acid/more folapro regime seemed to kick in, so I'm hoping it's a good sign. In a different post, mucous change is mentioned as a good sign that things were moving along!

There may be different triggers for you causing this mucous - i.e. dairy, gluten, wheat. All my life I had no problems other than a mild sinus headache when a weather front moved through, but then I inhaled moldy wood chips & had terrible mucous; had to go on methylprednisoline to clear it as I kept waking up not breathing. I did it a 2nd time thinking the chips were OK, but the inflammation happened again. [Was tested by an allergist and nothing came up, not even mold].

I take an apple cider vinegar pill every day now for sinus. Couldn't remember why I was taking it, LOL until I started looking into this for my friend.

I also get more mucousy when I have dairy, never noticed that until recently. I switched the milk in my morning coffee to coconut milk and don't need to take a decongestant. I'm not giving up my beloved cheese, however!
 

Rockt

Senior Member
Messages
292
Rockt, continue to look for causes/solutions for your mucous before you resort to the sinus surgery - I have heard it can cause scar tissue and you end up with worse problems.

Look into apple cider vinegar "with the Mother." Make sure it doesn't conflict with anything you're taking or have, but it can get rid of inflammation. Of course also make sure you're drinking enough water.

I'm interested in the mucous thing because my friend who I'm helping with methylation gets the head/throat mucous so we're trying to figure out what he has going on - if it's a food reaction, or some immune thing. The mucous actually got a bit worse the day his new less folic acid/more folapro regime seemed to kick in, so I'm hoping it's a good sign. In a different post, mucous change is mentioned as a good sign that things were moving along!

There may be different triggers for you causing this mucous - i.e. dairy, gluten, wheat. All my life I had no problems other than a mild sinus headache when a weather front moved through, but then I inhaled moldy wood chips & had terrible mucous; had to go on methylprednisoline to clear it as I kept waking up not breathing. I did it a 2nd time thinking the chips were OK, but the inflammation happened again. [Was tested by an allergist and nothing came up, not even mold].

I take an apple cider vinegar pill every day now for sinus. Couldn't remember why I was taking it, LOL until I started looking into this for my friend.

I also get more mucousy when I have dairy, never noticed that until recently. I switched the milk in my morning coffee to coconut milk and don't need to take a decongestant. I'm not giving up my beloved cheese, however!


Thanks Pea.

I definitely think sinus issues make things, CFS-wise, worse. Whenever I experience mental PEM, the sinus pain is worse, (it's not tremendous pain, just a constant sore pressure). Funny though, I went to an ENT about a year or so ago and he said my sinuses weren't "that bad" and to just keep using the NeilMed sinus rinse. I do that but it doesn't help much. An MRI showed the presence of cysts in my sinus cavities but the ENT didn't think much of that either.
 
Messages
514
Dear Rydra,

I had to drop you a note to say that I too have the internal trembling and I have had it every since I began the protocol. It feels like a tuning fork in my body. Sometimes it is very pronounced and sometime not so much but it is almost always there. I have tried stopping and starting so many things and still it persists. I tired increasing my metafolin (I currently take 800 msg) to two of the 800 mcg and within three days, I got very dizzy and had to stop and go back to the 800 mcg. When we were posting on wrong diagnosis I raised this issue of internal tremors but no one seemed to have any answers. I wanted you to hear that I have the same thing too and mine has not been a result of stopping the protocol. It feels like I'm missing something or not getting enough of something or the balance is wrong. If we could figure this one out I would be dancing in the streets! The constant tremors are not only annoying they are worrisome.

Idie

Idie, I'm sorry you have this symptom. I do not always have it so I think I will eventually be able to find out what causes it. It is very hard for me though because I have so many genetic defects that 1 change can throw me into a completely different state (such as from high blood pressure to low blood pressure), each with it's own emergencies to figure out. It is not so simple as stopping/starting one thing, getting one symptom. If I stop one thing I may sudeenly need 3 other things or die (and restarting the thing I stopped wont fix it until I get those 3 other things). It's a state machine and when something throws me into a different state, the way back is not always the same thing.

Maybe I'll do some research. I am just so swamped right now that just now I havent the time.

Regards
Rydra

P.S. 'Determined' triggered a memory on another topic that might pertain:
Here is what I wrote there:

Determined, I have noticed such things in the past - in my case with inflammation - In fact - I'll have to tell this to Idie - internal trembling would go away as well as any joint pain if I were fighting off a cold - leading me to believe these were caused by inflammatory cytokines which in the event of an actual infection went off to fight THAT instead of me. So...I would guess that chemicals cause inflammatory cytokines for you and I'll bet strategies against those might do the trick. But what are such strategies? Well one is high dose omega-3 (like 7-9g/day) as these use up the enzymes required to produce inflammatory cytokines. When I had a horrible new allergy develop last winter I found 20 Spirulina pills woul do the same thing. Neither is fun as it's so much. There are herbs that are supposed to help with inflammation, thus must target those cytokines, like curcumin. However if you are on meds, and you are, these strategies can be dangerous. Omega-3 thins the blood. I don't know what spirulina does but you can bet there are a lot of constituents in at, any one of which might interact with your meds. Curcumin interacts with 50% of the medicines on the market via CYP3A4...it will PREVENT you from eliminating any medication which is supposed to be cleared via CYP3A4 (50% of the drugs on the market) and this will cause their levels to rise to where they could be toxic. So many herbs do just this sort of thing that I would never take any herbs if I were on drugs. As to blood if your drugs thin your blood or affect clotting this is also something you need to do only under a doctor;s care. For someone NOT on drugs, the above are things I might look into.


(P.S. I am not saying that I have ever tested any of the above things for getting rid of internal trembling...but those things do get rid of sinusitis crabbed up head and/or joint pain, so maybe would also work for internal trembling. I do not feel entirely peaceful but since the day of my post above I have not have internal trembling. I want to say that I also added CLA to my protocol that day as I read we dont get it in our milk etc anymore, I also took 1g omega 3 to go with it and I drank a lot of milk. Those were the new things I did that day and since. But I cannot rule out that 3 days before that I restarted my olive leaf extract and maybe that did it over time. It is really hard to say.

Rydra

Ok, here's a study about CLA:
Conjugated linoleic acid reduces body fats and cytokine levels of mice. (PMID:12036077)
Akahoshi A, Goto Y, Murao K, Miyazaki T, Yamasaki M, Nonaka M, Yamada K, Sugano M

In order to discover the effect of CLA on the body fat size and serum cytokine levels, four groups of male mice were fed diets containing either 1% linoleic acid (LA) or conjugated linoleic acid (CLA) with or without 0.2% sesamin for 8 weeks. The weight gain and feed efficiency were significantly lower in the CLA groups. CLA significantly reduced relative weights (g/100 g body weight) of epididymal and perirenal adipose tissues, in particular the former. Concentrations of serum TNF-alpha and leptin were significantly reduced by dietary CLA. Sesamin did not show additional effects in all of these parameters. There was a positive correlation between cytokine production and body-fat reducing potential of CLA. These results indicated that mice appeared to be a hyperresponder to dietary CLA insofar as the reduction of body fat size is concerned.

---

I started aking it 2x/day (Jarrow) because I think Life Extension said it causes production of ANTI inflammatory cytokines. Inflammatory cytokines dysregulate the methyl cycle I believe (dont know exactly which enzymes are affcted by which cytokines and I dont beieve science knows that yet anyway).

So I am now thinking that it might be the CLA helping me out. CLA, fyi, does not help you lose weight - it just redistributes your weight to muscle instead of fat. You are supposed to take much more to do that - like maybe 5 pills a day. But I am not very good at anything that requires more than twice a day.

Ok, I checked LEF - they say 4g/day. It turns out LEF was not my source - my actual source says 3-6g/day. Both sources say it lowers cholesterol and stops insulin resistance. Oh, I di dnot find that it increases any anti-inflammatory cytokine, I found it is a COX-2 inhibitor (like curcumin and many other things...meaning like any other COX-2 inhibitor it can make your stomach bleed). Now I am going to refresh my memory because there was something that increased anti-inflammatory cytokined (PGE1)? Maybe GLA? Yes, GLA is needed to produceGE1 which creates anti-inflammatory cytokines. My book says deficiencies of biotin, B3, B6, magnesium, or zinc can prevent you from making PGE1. Well I have tried that evening primrose oil and it never did anything for me. Of course evrything could be in a synergy and I am certainly taking different supplements now that in the past.

Anyway, not sure if CLA helps internal trembling. It may be that any COX-2 inhibitor does and I have an array that I sometimes take - which couldbe why I sometimes have this problem and sometimes not?

OOPS! I am editting this the next day to say: FORGET IT. I DISCOVERED I AM CATCHING A COLD so that is why my internal trembling stopped...there is something else for the inflammatory cytokines to attack. However I still think this is a clue. I think - odd as it may seem - that internal trembling is caused by inflammatory cytokines. So things that stop them (there are many) would be likely to help it. Pay attention to if your trembling goes away when you have a sore throat or are fighting infection. In the meantime, you could try 9g omega-3 as this will prevent inflammatory cytokines (this is just a test - nyou can find a way you like to do this better later). Now O-3 works by suppressing formation if inflammatory cytokines (because it uses up the enzymes needed to make them) so it WILL NOT TAKE DOWN CURRENT INFLAMMATION from pre-existing cytokines. So it may take up to 3 days to work. If you can verify it is caused by cytokines, you can try various herbs which suppress various cytokines to see if there is a less-pill way to take care of it. I am not sure - it is only a thought. DHEA reduced/eliminates TNF-alpha which may be why it helps prevent dysregultion of the methyl cycle. Curcumin suppresses some cytokines or other, so does milk thistle. Many, many herbs do this. It is extremely likely that a given herb will interact with a given medication if you are on any...suppressing clearance of the drug until it builds up to toxic levels. So please do not think I am suggesting herbs - you are on your own trying that. It's just an idea that might be useful.
 

brenda

Senior Member
Messages
2,270
Location
UK
Hi

I am back and planning on doing either Rich`s or Freddd`s protocol as I am stuck with my Lyme treatment and hope that this will be the key. I started Freddd`s once before but felt thatI was not ready for it so stopped it and have been treating my thyroid and adrenals since then and doing some killing I hope with rife.

So now I am preparing myself. This is what I am taking :

Jarrow BRight one a day
Jarrow methyl B12 one quarter of 1gm increasing to daily
Selenium 200mcg
curcumin 500mg
D3 5,000iu
Pureway C 2,000mg
molybdenum 150 mcg
PepZinGI
Jarrow Dophitus EPS one at night
Nature-Throid one half grain
pregnenolone
Rhodiola
Ashwaghanda
Samento 6 drops

apple pectin
clay
barley grass dried
chia seeds
fresh veggie juice

Recent blood test shows

potassium 4.8 (3.5-5.5)
sodium 142 (135-145)
chloride 105 (96-106)
urea 5.9 (2.5-7)
creatinine 67 (50-110) was 107 5 years ago
bilirubin 7 (0-17)
ALT 27 ((0-40)
Alk Phos 130 (35-120)
total protein 73 (60-80)
albumin 44 (34-50)
globulin 29 (20-32)
Alk Phos 130 (35-120)
SRP 6 (0-10)
creatine kinase 57 (0-170)
WBC 8.8 (4-11)
HB 13.3 (12-16)
platelet 269 (150-450) 327 5 years ago
RBC 4.76 (4.1-5.1)
Haematocrit 0.406 (0.35-0.45)
MCV 85.3 (82-98) 89 5 years ago
MCH 27.9
MCHC 32.8
red blood cell width 14.6 was 12.9 5 years ago
Neutrophil 4.6 (1.7-7.5) was 3.7 5 years ago
Lymphocyte 3.1 (1-3.2)
Monocyte 0.7 (0.2-1)
Eosinophil 0.4 (0-0.5)
Basophil 0.0 (0-0.1) was 0.1 "
ESR 19 (0-20) was 21 "

Organic acid test from Metametrix 2 years ago showed

Citrate >2000 (56-987)
Sulfate 744 (690-2,988)
Energy Production Markers Very High
Most other markers High

I am wondering what I can take/take away to help my body prepare.

I have Hashimotos, late Lyme with early dementia symptoms, Corneal erosions, (DES)

Any advice appreciated

rydra that seems to be a lot of pregnenalone you are taking
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi

I am back and planning on doing either Rich`s or Freddd`s protocol as I am stuck with my Lyme treatment and hope that this will be the key. I started Freddd`s once before but felt thatI was not ready for it so stopped it and have been treating my thyroid and adrenals since then and doing some killing I hope with rife.

So now I am preparing myself. This is what I am taking :

Jarrow BRight one a day
Jarrow methyl B12 one quarter of 1gm increasing to daily
Selenium 200mcg
curcumin 500mg
D3 5,000iu
Pureway C 2,000mg
molybdenum 150 mcg
PepZinGI
Jarrow Dophitus EPS one at night
Nature-Throid one half grain
pregnenolone
Rhodiola
Ashwaghanda
Samento 6 drops

apple pectin
clay
barley grass dried
chia seeds
fresh veggie juice

Recent blood test shows

potassium 4.8 (3.5-5.5)
sodium 142 (135-145)
chloride 105 (96-106)
urea 5.9 (2.5-7)
creatinine 67 (50-110) was 107 5 years ago
bilirubin 7 (0-17)
ALT 27 ((0-40)
Alk Phos 130 (35-120)
total protein 73 (60-80)
albumin 44 (34-50)
globulin 29 (20-32)
Alk Phos 130 (35-120)
SRP 6 (0-10)
creatine kinase 57 (0-170)
WBC 8.8 (4-11)
HB 13.3 (12-16)
platelet 269 (150-450) 327 5 years ago
RBC 4.76 (4.1-5.1)
Haematocrit 0.406 (0.35-0.45)
MCV 85.3 (82-98) 89 5 years ago
MCH 27.9
MCHC 32.8
red blood cell width 14.6 was 12.9 5 years ago
Neutrophil 4.6 (1.7-7.5) was 3.7 5 years ago
Lymphocyte 3.1 (1-3.2)
Monocyte 0.7 (0.2-1)
Eosinophil 0.4 (0-0.5)
Basophil 0.0 (0-0.1) was 0.1 "
ESR 19 (0-20) was 21 "

Organic acid test from Metametrix 2 years ago showed

Citrate >2000 (56-987)
Sulfate 744 (690-2,988)
Energy Production Markers Very High
Most other markers High

I am wondering what I can take/take away to help my body prepare.

I have Hashimotos, late Lyme with early dementia symptoms, Corneal erosions, (DES)

Any advice appreciated

rydra that seems to be a lot of pregnenalone you are taking

Hi Brenda,

I would want to have magnesium and calcium, maybe 50mg of zinc, misc minerals, omega3 oils to 2000mg of DHA & EPA, lecithin, Metafolin, plenty of potassium on hand in case of a potassium drop. Further, if you are in the active stage of Hashimoto's, thyroid hormone can change.
 

brenda

Senior Member
Messages
2,270
Location
UK
Thanks for your reply Freddd. Is that 2000mg of both DHA and EPA?

I had a reaction to the extra B12 last night I think - unusual stomach cramps which I guess was a potassium drop so I am backing off of it till I have everything in place. I am not ready yet as I intent to follow the protocol exactly. The magnesium is a bit tricky, as the top Lyme docs say dont take it as it feeds the bacteria so I need to find out more.

I also cut the thyroid hormone today as my heart rate was up last night as well.

My main concern is my risk of heart attack on the start up as my ESR is so high and I already have had heart problems due to Lyme and have strong genetic heart issues which at age 61 is a concern. My first task is to get some weight off I think and get my diet more up to scratch. I guess a heart attack if help is at hand may be the price I have to pay to get my health up. What do you think?

ps nearly forgot, but I had two corneal erosions last night, nearly enough to put me off
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for your reply Freddd. Is that 2000mg of both DHA and EPA?

I had a reaction to the extra B12 last night I think - unusual stomach cramps which I guess was a potassium drop so I am backing off of it till I have everything in place. I am not ready yet as I intent to follow the protocol exactly. The magnesium is a bit tricky, as the top Lyme docs say dont take it as it feeds the bacteria so I need to find out more.

I also cut the thyroid hormone today as my heart rate was up last night as well.

My main concern is my risk of heart attack on the start up as my ESR is so high and I already have had heart problems due to Lyme and have strong genetic heart issues which at age 61 is a concern. My first task is to get some weight off I think and get my diet more up to scratch. I guess a heart attack if help is at hand may be the price I have to pay to get my health up. What do you think?

ps nearly forgot, but I had two corneal erosions last night, nearly enough to put me off

Hi Brenda,

The components are of the active b12 protocol strengthen the heart and reduce inflamation. Low potassium is not usually an imediate response to mb12 but rather something that develops over several days. Also, for me as I got my metabolism going better I dropped a lot of water 85 pounds, and weight 40 pounds. I would rather not see any heart attacks. One of the things that can occur with active b12 entering the system is that parestalsis starts up more strongly as muscles can contract better. A currently developing idea is microdoses of mb12 for those in very fragile condition. By this I'm tallking about literal microdoses of mb12 and adb12, crumbs, to slowly build up the b12 level in the tissues. So on microdoses a tablet might last a month. However, one would still have to watch for low potassium or folate because at some point methylation will start, though maybe limited by very limited b12.

Be careful about tying the changes into thyroid. The immediate effect is usually not thyroid, but rather ATP generation or better neurology functioning. Thyroid doesn't change that fast. Trying to micromanage thyroid with dose changes doesn't work and leads to destabilization.

Is that 2000mg of both DHA and EPA?

Yes, the combined total.
 
Messages
514
Hi

II have Hashimotos, late Lyme with early dementia symptoms, Corneal erosions, (DES)

Any advice appreciated

rydra that seems to be a lot of pregnenalone you are taking

No...I am only taking 30mg pregnenolone. It is a lot of DHEA I am taking. But I cannot function w/o it. It is the only thing that will bring my bp down 30 points and keep it there and it also enables me to leave the house rather than be crippled with anxiety - one of those people afraid to leave their house. I get an extensive hormone test every year and my doctors say I am making good hormones out of it (due maybe to the DIM/I3C supplement I am taking).

If you have an auto-immune thyroid problem you should consider maxing out on selenium (Life Extension says you can take 400 mcg). Does Hashi go low then normal or does it go high thyroid? Because hgh thyroid uses up CoQ10 and I dont see you taking it. As with any auto-immune, high dose anti-oxidants are indicated. I dunno the version of C you are taking - is it a buffered C? Because C is acidic and it is not good to take a large amount of an acidic substance like that. I take ester C from American Health 2g/day. I would take som e sort of E supplement too (antioxidant).

Have you tested low in molybdenum? You shouldnt take it unless you are low. You could be high like me. Molybdenum prevents copper absorption which causes neuropathy.

We are not using B Right because of the folic acid in it. I take Thorne Basic B which is all active B's. Others take other brands. Do you have startup symptoms with this? Or no results? Just curious. Your methylation protocol woul dnot be enough to help me.

Rydra
 

brenda

Senior Member
Messages
2,270
Location
UK
Hi Freddd

The components are of the active b12 protocol strengthen the heart and reduce inflamation. Low potassium is not usually an imediate response to mb12 but rather something that develops over several days. Also, for me as I got my metabolism going better I dropped a lot of water 85 pounds, and weight 40 pounds. I would rather not see any heart attacks. One of the things that can occur with active b12 entering the system is that parestalsis starts up more strongly as muscles can contract better. A currently developing idea is microdoses of mb12 for those in very fragile condition. By this I'm tallking about literal microdoses of mb12 and adb12, crumbs, to slowly build up the b12 level in the tissues. So on microdoses a tablet might last a month. However, one would still have to watch for low potassium or folate because at some point methylation will start, though maybe limited by very limited b12.

Be careful about tying the changes into thyroid. The immediate effect is usually not thyroid, but rather ATP generation or better neurology functioning. Thyroid doesn't change that fast. Trying to micromanage thyroid with dose changes doesn't work and leads to destabilization.


I have been taking Jarrow B12 for a while, when I remembered, but stepped up the dose the last few days till I stopped. As well as the stomach cramps I started to pee a lot more and felt some stirring inside which reminded me of the last time I started taking B12 but took far too much. This has encouraged me to think that I do have the methylation block. I have a lot of water retention and look forward to losing it like you. I do think I will have to go slowly and get my nutritional status right up, though it is not bad at present especially since I gave up gluten a while back after reading that I should with Hashimotos.

I get your point though that my heart will improve on the protocol and waiting to start it for my hearts sake will not necessarily be best. I will use muscle testing carefully for everything - it has served me well in the past.

I already have to dose my thyroid according to symptoms, it is not a thyroid problem being autoimmune and the function of it changes. At present I am back on T3 alone since a blood test showed very low TSH and I dont want to get hyper. Thanks again for your imput.

No...I am only taking 30mg pregnenolone. It is a lot of DHEA I am taking. But I cannot function w/o it. It is the only thing that will bring my bp down 30 points and keep it there and it also enables me to leave the house rather than be crippled with anxiety - one of those people afraid to leave their house. I get an extensive hormone test every year and my doctors say I am making good hormones out of it (due maybe to the DIM/I3C supplement I am taking).

If you have an auto-immune thyroid problem you should consider maxing out on selenium (Life Extension says you can take 400 mcg). Does Hashi go low then normal or does it go high thyroid? Because hgh thyroid uses up CoQ10 and I dont see you taking it. As with any auto-immune, high dose anti-oxidants are indicated. I dunno the version of C you are taking - is it a buffered C? Because C is acidic and it is not good to take a large amount of an acidic substance like that. I take ester C from American Health 2g/day. I would take som e sort of E supplement too (antioxidant).

Have you tested low in molybdenum? You shouldnt take it unless you are low. You could be high like me. Molybdenum prevents copper absorption which causes neuropathy.

We are not using B Right because of the folic acid in it. I take Thorne Basic B which is all active B's. Others take other brands. Do you have startup symptoms with this? Or no results? Just curious. Your methylation protocol would not be enough to help me.

Rydra



Hi Rydra

When I started pregnenolone I read that one should reduce the dosage after taking it for a while and that a dose over 20mg in daily long term is use too high. I found myself that I have had to keep reducing it and not take it every day in fact I only take it once or twice a week whenever I muscle test for it and then only 5mg due to the low state of my adrenals.

I will try the higher dose of selenium. My antibodies are very high. I have problems with absorbing T4 due to my adrenals and sometimes like now have too much T4 floating around so I have gone back to just T3 for now to stop me going hyper which is too hard on my heart.

I forgot to add Pycnogenol 100mg on my list though it is pricy so I may have to drop it when I start to buy the supplements for the protocol. What I am taking, I have been on for a while and just what I thought I needed.

I am very low on Q10 but when I tried to take it it had a bad effect - cant remember much about it as it was so long since so maybe I should try again but I am muscle testing against it. The trouble with having Lyme in the picture is that the body might downregulate to stop the bacteria from taking over.

I am taking sustained release ascorbyl palmitate C and just noticed it is 1g daily not 2. I used to take ester C then read bad things about it. I was thinking myself of vitE which is the best one?

I am taking mol.after Andy Cutler said it is useful for those with mercury problems - I was poisoned with it at 5 months then had other exposures. Since I started mol a week ago my cs and allergies have got a lot worse so I wonder if this is conected.

I will change my B vits when I manage to get sorted out for the protocol. I guess I do need some tests but finances make it necessary to only do essentials. Many thanks for your reply.

Brenda
 
Messages
514
Hi
I have Hashimotos, late Lyme with early dementia symptoms, Corneal erosions, (DES)

Any advice appreciated

Just thought I'd mention that the Feb 2012 issue of Life Extension magazine has an article about magnesium-L-threonate and how it is the only form of magnesium they;ve found that can easily get past the blood brain barrier - it increases memory by 15% which make a significant difference in test subjects. It increases the number of functioning neurotransmitter release sites. Has great benefit in Alzheimer's. It says in a months' time older animals performed just as well as their younger counterparts.

Of course www.lef.org sells it.

Regards,
rydra

So, I got to thinking about this. The article talks about the NMDA receptors and how magnesium is needed for gating them and I know that estrogen (and DHEA) protect this magnesium from being stripped off (protect against glutamate toxicity, which is what happens when the magnesium is stripped off). And then I got to thinking about how I used to have a photographic memory when I was younger until one allergy season when I could not take it anymore (I have 8 box of kleenex a day allergies and I was sent to school with only a handful of kleenex that could fit in a purse - it was inhuman) so I took 20 aspirin a day and did nt care if it killed me. In fact it caused my adrenal gland to pump out cortisone which cleared up my sinusses, but it destroyed my memory. Now I know my genes and that I have trouble making enough BH4 (without which magnesium is stripped off the NMDA receptors by ammonia) and I had researched that ASPIRIN LOWERS BH4. So now I think that is the mechanism by which aspirin killed me meory and that this magnesium supplement might be the way to get it back.

This supplement sounds very useful for CFS/ME as April (or someone?) used to always say that magnesium is needed to produce/use ATP.
 

maddietod

Senior Member
Messages
2,860
If I understand correctly, this article was written by the company that sells the product.

Is there any unbiased coverage of this supplement? I have a brother in law with Altzheimer's.

Madie