That's very poor quality research. There are no controls, small sample sizes, and entirely subjective outcomes. Typical psychobabble BS basically, where patients are quizzed on their symptoms after being repeatedly told to deny that they have symptoms.
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What is Methyl Trapping ?
- Thread starter Branston
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finally i found some papers and rich´s explanations and if feel he is right and fredd is wrong. just my opinion though.
you have got to love rich´s calm way of explaining things , making difficult to read studies understandable to lay people :
Protection of aquo/hydroxocobalamin from reduced glutathione by a B12 trafficking chaperone
We identified a bovine B(12) trafficking chaperone bCblC in Bos taurus that showed 88% amino acid sequence identity with a human homologue. The protein bCblC was purified from E. coli by over-expression of the encoding gene. bCblC bound cyanocobalamin (CNCbl), methylcobalamin (MeCbl) and adenosylcobalamin (AdoCbl) in the base-off states and eliminated the upper axial ligands forming aquo/hydroxocobalamin (OH(2)/OHCbl) under aerobic conditions. A transition of OH(2)/OHCbl was induced upon binding to bCblC. Interestingly, bCblC-bound OH(2)/OHCbl did not react with reduced glutathione (GSH), while the reaction of free OH(2)/OHCbl with GSH resulted in the formation of glutathionylcobalamin (GSCbl) and glutathione disulfide (GSSG). Furthermore we found that bCblC eliminates the GSH ligand of GSCbl forming OH(2)/ OHCbl. The results demonstrated that bCblC is a B(12) trafficking chaperone that binds cobalamins and protects OH(2)/OHCbl from GSH, which could be oxidized to GSSG by free OH(2)/OHCbl.
rich v k:
Hi, ukme.
Thank you for posting this. Here's what I believe it is saying:
The study involves one of the intracellular (inside the cells) vitamin B12 processing proteins, taken from the cow. It is called the CblC in the human, but is called bCblC in the cow, with the b standing for bovine. This protein serves as a trafficking chaperone. That means that it protects and conveys cobalamin (B12) between steps in the intracellular processing pathways that start with various forms of B12 received by the cell, and end with it being converted to the two active coenzyme forms, methylcobalamin and adenosylcobalamin. It is necessary to protect B12 during this process, because it is very chemically reactive, and will react with toxins and be lost if it is not protected and channeled within the proper biochemical pathways.
The authors report that the bovine version of this protein is similar to that of the human in its amino acid sequence, differing by only 12% of its amino acids.
The authors produced a large enough quantity of the pure bCblC by using E. coli bacteria to make it, by grafting the gene for the cow's protein into the bacteria DNA, and then separating the bCblC protein out after it was produced by the bacteria. They then studied it in vitro, i.e. isolated in the laboratory, rather than in the living cells of the cow. This is done because it is a much simpler chemical system, in which individual reactions can be isolated and observed.
By adding different forms of B12 to a solution containing bCblC, they found that this chaperone would bind all of them under aerobic conditions (that is, in contact with the atmosphere). (Note that the interiors of cells in the body are under less oxiziding conditions than was this solution exposed to the air, so this needs to be considered when oxidation/reduction reactions are involved, and presumably the authors did consider this.) When bCblC bound any of these B12 forms (cyanocobalain, mmethylcobalamin, or adenosylcobalamin), it removed the upper axial ligand (cyano-, methyl-, or adenosyl-) and converted them all to aquocobalamin (this is the same as hydroxocobalamin, because aquocobalamin exists in equilibrium with its dissociated or ionized state, which is hydroxocobalamin, at the pH of the cells). When these forms of B12 are bound to bCblC, they are bound in the base-off configuration. That means that the ligand that is on the other ("bottom") side of the B12 molecule shifts into a different configuration, but is still attached to the molecule.
While the B12 (cobalamin) was bound to bCblC, it would not react with glutathione. That is, it was protected from reacting (i.e. "chaperoned.") However, free (unbound) hydroxocobalamin will react with glutathione to form glutathionylcobalamin and glutathione disulfide (oxidized glutathione). This means that the aquo-/hydroxo-cobalamin is chemically reduced by glutathione and is then bound to another glutathione molecule. Glutathione disulfide is the oxidized form of glutathione. When glutathione chemically reduces another molecule, it becomes oxidized in doing so. Oxidation and reduction go hand-in-hand in chemistry, because they involve transfer of an electron from one species to another. The one that gives up the electron is oxidized, and the one that receives it is reduced. "Chemically reduced" in this case means that the cobalt ion in the cobalamin molecule is given an electron, which reduces its oxidation state. This ion can have three different oxidation states, i.e. +1, +2, and +3. When it is reduced, it is much more chemically reactive, that is to being oxidized by other species.
They also found that bCblC will react with glutathionylcobalamin, removing the glutathionyl ligand and converting it to bound aquo-/hydroxo-cobalamin.
They conclude that bCblC is a trafficking chaperone that binds cobalamins (this was already known) and that it also prevents aquo/hydroxo-cobalamin from reacting with glutathione, which it will do in its free state.
The complete intracellular B12 processing pathways have not been worked out in detail yet, but it is known that the CblC protein plays an important intermediate role. This protein enables the cell normally to use the whole variety of forms of B12. It first removes whatever ligand is attached to the molecule, and then, using other proteins (enzymes), it normally re-forms as much methylcobalamin and adenosylcobalamin as it needs.
Some people inherit mutations in the CblC protein's gene, and this causes them not to be able to carry out this normal pathway. Freddd may be a person who has such a mutation, since he has reported that his body is not able to use cyanocobalamin, hydroxocobalamin or glutathionylcobalamin to make the active coenzyme forms of B12 effectively, so he must give his cells the active forms directly. Apparently he must give them in large dosages directly into the blood by sublingual application or injection so that enough will diffuse across the cell membranes to supply what his cells need.
The exact position of glutathione in the intracellular B12 processing pathways has not been completely worked out. It is known that glutathione will protect B12 from reactions with foreign substances, and this work shows that glutathione will chemically reduce B12. Perhaps glutathione is able to rescue B12 that has become oxidized, and then feed it to CblC so that it can be chaperoned to the next step in the pathway. This is still an area of ongoing research. I'm very interested in this, because the GD-MCB hypothesis that I have proposed holds that glutathione normally protects B12, so that when it becomes depleted, B12 is lost from its normal intracellular processing pathways, and this shuts down the methylation cycle and brings about the onset of ME/CFS. As far as I can tell, the results of this paper would not contradict the hypothesis, but I need to get a complete copy of the paper and study it more carefully, because abstracts can sometimes be misleading or leave out a lot.
Best regards,
Rich
rich v k:
Thank you. I read the full paper, and also took another look at an earlier paper that was referenced in it, from Ruma Banerjee's group:
http://www.jbc.org/content/284/48/33418.long
As a result, I think I will modify my GD-MCB hypothesis for the pathogenesis of ME/CFS a little. In the past, I have suggested that glutathione protects B12 at an intermediate stage of its processing inside the cells. It appears from the Banerjee paper that it also plays a role in helping the CblC protein to remove the ligands from methyl B12 and adenosyl B12 so that they can be reformed later in the amounts needed by the cell. Without enough glutathione, it seems to me that this part of the B12 pathway would be blocked. Therefore, glutathione depletion would still lead to a functional B12 deficiency and a partial block in the methylation cycle.
The paper you cited seems to imply by its title that the interaction of glutathione with B12 is something to be avoided. That is normally not the case, and in fact, it is very important that glutathione be present for proper B12 metabolism. In Freddd's case, he has found glutathione to be detrimental. I think the reason is probably that his CblC protein is mutated, such that it is not able to retrieve cobalamin from glutathionylcobalamin, as this protein is normally able to do, shown by this paper.
Best regards,
Rich
you have got to love rich´s calm way of explaining things , making difficult to read studies understandable to lay people :
Protection of aquo/hydroxocobalamin from reduced glutathione by a B12 trafficking chaperone
We identified a bovine B(12) trafficking chaperone bCblC in Bos taurus that showed 88% amino acid sequence identity with a human homologue. The protein bCblC was purified from E. coli by over-expression of the encoding gene. bCblC bound cyanocobalamin (CNCbl), methylcobalamin (MeCbl) and adenosylcobalamin (AdoCbl) in the base-off states and eliminated the upper axial ligands forming aquo/hydroxocobalamin (OH(2)/OHCbl) under aerobic conditions. A transition of OH(2)/OHCbl was induced upon binding to bCblC. Interestingly, bCblC-bound OH(2)/OHCbl did not react with reduced glutathione (GSH), while the reaction of free OH(2)/OHCbl with GSH resulted in the formation of glutathionylcobalamin (GSCbl) and glutathione disulfide (GSSG). Furthermore we found that bCblC eliminates the GSH ligand of GSCbl forming OH(2)/ OHCbl. The results demonstrated that bCblC is a B(12) trafficking chaperone that binds cobalamins and protects OH(2)/OHCbl from GSH, which could be oxidized to GSSG by free OH(2)/OHCbl.
rich v k:
Hi, ukme.
Thank you for posting this. Here's what I believe it is saying:
The study involves one of the intracellular (inside the cells) vitamin B12 processing proteins, taken from the cow. It is called the CblC in the human, but is called bCblC in the cow, with the b standing for bovine. This protein serves as a trafficking chaperone. That means that it protects and conveys cobalamin (B12) between steps in the intracellular processing pathways that start with various forms of B12 received by the cell, and end with it being converted to the two active coenzyme forms, methylcobalamin and adenosylcobalamin. It is necessary to protect B12 during this process, because it is very chemically reactive, and will react with toxins and be lost if it is not protected and channeled within the proper biochemical pathways.
The authors report that the bovine version of this protein is similar to that of the human in its amino acid sequence, differing by only 12% of its amino acids.
The authors produced a large enough quantity of the pure bCblC by using E. coli bacteria to make it, by grafting the gene for the cow's protein into the bacteria DNA, and then separating the bCblC protein out after it was produced by the bacteria. They then studied it in vitro, i.e. isolated in the laboratory, rather than in the living cells of the cow. This is done because it is a much simpler chemical system, in which individual reactions can be isolated and observed.
By adding different forms of B12 to a solution containing bCblC, they found that this chaperone would bind all of them under aerobic conditions (that is, in contact with the atmosphere). (Note that the interiors of cells in the body are under less oxiziding conditions than was this solution exposed to the air, so this needs to be considered when oxidation/reduction reactions are involved, and presumably the authors did consider this.) When bCblC bound any of these B12 forms (cyanocobalain, mmethylcobalamin, or adenosylcobalamin), it removed the upper axial ligand (cyano-, methyl-, or adenosyl-) and converted them all to aquocobalamin (this is the same as hydroxocobalamin, because aquocobalamin exists in equilibrium with its dissociated or ionized state, which is hydroxocobalamin, at the pH of the cells). When these forms of B12 are bound to bCblC, they are bound in the base-off configuration. That means that the ligand that is on the other ("bottom") side of the B12 molecule shifts into a different configuration, but is still attached to the molecule.
While the B12 (cobalamin) was bound to bCblC, it would not react with glutathione. That is, it was protected from reacting (i.e. "chaperoned.") However, free (unbound) hydroxocobalamin will react with glutathione to form glutathionylcobalamin and glutathione disulfide (oxidized glutathione). This means that the aquo-/hydroxo-cobalamin is chemically reduced by glutathione and is then bound to another glutathione molecule. Glutathione disulfide is the oxidized form of glutathione. When glutathione chemically reduces another molecule, it becomes oxidized in doing so. Oxidation and reduction go hand-in-hand in chemistry, because they involve transfer of an electron from one species to another. The one that gives up the electron is oxidized, and the one that receives it is reduced. "Chemically reduced" in this case means that the cobalt ion in the cobalamin molecule is given an electron, which reduces its oxidation state. This ion can have three different oxidation states, i.e. +1, +2, and +3. When it is reduced, it is much more chemically reactive, that is to being oxidized by other species.
They also found that bCblC will react with glutathionylcobalamin, removing the glutathionyl ligand and converting it to bound aquo-/hydroxo-cobalamin.
They conclude that bCblC is a trafficking chaperone that binds cobalamins (this was already known) and that it also prevents aquo/hydroxo-cobalamin from reacting with glutathione, which it will do in its free state.
The complete intracellular B12 processing pathways have not been worked out in detail yet, but it is known that the CblC protein plays an important intermediate role. This protein enables the cell normally to use the whole variety of forms of B12. It first removes whatever ligand is attached to the molecule, and then, using other proteins (enzymes), it normally re-forms as much methylcobalamin and adenosylcobalamin as it needs.
Some people inherit mutations in the CblC protein's gene, and this causes them not to be able to carry out this normal pathway. Freddd may be a person who has such a mutation, since he has reported that his body is not able to use cyanocobalamin, hydroxocobalamin or glutathionylcobalamin to make the active coenzyme forms of B12 effectively, so he must give his cells the active forms directly. Apparently he must give them in large dosages directly into the blood by sublingual application or injection so that enough will diffuse across the cell membranes to supply what his cells need.
The exact position of glutathione in the intracellular B12 processing pathways has not been completely worked out. It is known that glutathione will protect B12 from reactions with foreign substances, and this work shows that glutathione will chemically reduce B12. Perhaps glutathione is able to rescue B12 that has become oxidized, and then feed it to CblC so that it can be chaperoned to the next step in the pathway. This is still an area of ongoing research. I'm very interested in this, because the GD-MCB hypothesis that I have proposed holds that glutathione normally protects B12, so that when it becomes depleted, B12 is lost from its normal intracellular processing pathways, and this shuts down the methylation cycle and brings about the onset of ME/CFS. As far as I can tell, the results of this paper would not contradict the hypothesis, but I need to get a complete copy of the paper and study it more carefully, because abstracts can sometimes be misleading or leave out a lot.
Best regards,
Rich
rich v k:
Thank you. I read the full paper, and also took another look at an earlier paper that was referenced in it, from Ruma Banerjee's group:
http://www.jbc.org/content/284/48/33418.long
As a result, I think I will modify my GD-MCB hypothesis for the pathogenesis of ME/CFS a little. In the past, I have suggested that glutathione protects B12 at an intermediate stage of its processing inside the cells. It appears from the Banerjee paper that it also plays a role in helping the CblC protein to remove the ligands from methyl B12 and adenosyl B12 so that they can be reformed later in the amounts needed by the cell. Without enough glutathione, it seems to me that this part of the B12 pathway would be blocked. Therefore, glutathione depletion would still lead to a functional B12 deficiency and a partial block in the methylation cycle.
The paper you cited seems to imply by its title that the interaction of glutathione with B12 is something to be avoided. That is normally not the case, and in fact, it is very important that glutathione be present for proper B12 metabolism. In Freddd's case, he has found glutathione to be detrimental. I think the reason is probably that his CblC protein is mutated, such that it is not able to retrieve cobalamin from glutathionylcobalamin, as this protein is normally able to do, shown by this paper.
Best regards,
Rich
- Messages
- 9
true. can´t argue with it. but all the people i know who recovered from cfs, used some type of intervention that calmed the brain. i think you are too caught up trying to justify that CFS is a physical condition.understandable, but a hindrance nonetheless.just because dr´s don´t understand what psychosomatic really means, it does not mean that the brain nervous system and body are not connected and that interventions aimed at repairing that disturbed / traumatized part don´t work. the brain and limbic system are physical are they not ?? rewiring pathways that are keeping us stuck in a fight flight type response is a physical intervention. my girlfriend had brutal severe cfs for 7 years and cured herself using mostly psychotherapy -- ( by the way she has comt++ )- still today though- when she gets stressed she has a flare of symptoms or catches flu´s more easily. i cured myself so fast using AMRTR (gupta) but relapsed, that was not the fault of myself or the techniques i used but an outside factor. The amygdala retraining worked . annie hopper is trying to get funding for a study evaluating her method DNRS by calgary university using brain imaging. you will have to wait for the results and stay sick or give it a shot and maybe improve or recover fully. first you will have to let go of your bias though. people here are following guys like fredd for years spending a fortune on supplements, but are reluctant to try out the "limbic system hypothesis" and its proponents methods. even though you can find 50 people who recoverd with it in just 20 min of searching on the web.
concerning myself:
once my fluphase is better i will get back 100 percent into DNRS training, TRE´s and gut health. i will keep taking long route support: mb12 , m- folate ALCAL carnitinefurmarate energy : coq10,nadh vit c , and short route : tmg, phpholipids but also whey .i will take sam-e during infections as well as humic acid.
but i will not spend hours thinking about wether a slight change in symptoms was caused by the supplements -- why : because it drives the nervous system causing more symptoms ! and because i have mtr and mtrr mthfr so i allready know that i need b12 and methylfolate. because there is no clear method except rich´s dosing scedule out therei will follow his recommendations. ( I just take more methylb12 beause of my mtr mtrr. ) i inject 5mg or use 5mg sublingually ) also i will continue to follow the FAST TRACK DIET because i have sibo . this is really fucking with my brain and symptoms.
but: i know that if i can retrain the brain again as i did in 2009 , all the other stuff will start working so much better or simply go away: that´s the power of epigenetics ! its the power of brain neuroplasticity . check out annie hopper DNRS . u only have about 300 dollars to loose and 1-2 hours a day. u will see effects or not . if not leave it , if yes stay the path and maybe recover.
Last edited:
Help!
I'm absolutely desperate for help right now. Can anyone help with advice is proven safe and effective?
I almost died from severe methyl trapping with meth12 injections 3 yrs ago, it activated all of my tick-borne infections, CV Immunodeficiency, etc. of which I am still recovering. I've been on a methylation protocol since then. About 2 months ago my Dr. raised me from 5mg 5-MTHF to 50mg 5-MTHF (no B12 at all, I have the B12 mutation). I felt amazing for a while, then started to get some weird acute symptoms, then things got progressively worse and if I didn't know what was happening, I'd be in the ER right now, but I know they can't help and could only make things worse. I have severe neurotoxicity and neuroexcitation, that create almost constant seizure like episodes, adrenal storms, zero sleep and all these symptoms.
It's getting progressively worse, I have a severe autoimmune, immune and biochemical reactions. I've been taking Niacin for days and I'm only getting worse.
Things are progressing exactly as they did three years ago, which caused severe brain damage, body damage, an explosion of serious tick borne infections, mold, etc. I was half dead for three years. I'm a vibrant 37 year old woman normally. I haven't slept in two days, I'm now consistently flooded with neuroexcitatory chemicals and I can't stop it no matter what I do, the second my body falls asleep I get woken up with a huge surge of adrenaline. And this happens all throughout the day when I'm awake. I'm experiencing rapid nerve damage, cognitive disfunction, metabolic dysfunction, etc, etc. Nothing I take, nothing I do helps. It's at an uncontrollable point now. I can't walk, I'm losing my vision. I need help. I have to stop this immediately because if I don't I'm going to end up dead or exactly where I was three years ago, almost dead, and I cannot and will not live through all of that again.
I would be endless grateful for any help.
Thank you so much!
I'm absolutely desperate for help right now. Can anyone help with advice is proven safe and effective?
I almost died from severe methyl trapping with meth12 injections 3 yrs ago, it activated all of my tick-borne infections, CV Immunodeficiency, etc. of which I am still recovering. I've been on a methylation protocol since then. About 2 months ago my Dr. raised me from 5mg 5-MTHF to 50mg 5-MTHF (no B12 at all, I have the B12 mutation). I felt amazing for a while, then started to get some weird acute symptoms, then things got progressively worse and if I didn't know what was happening, I'd be in the ER right now, but I know they can't help and could only make things worse. I have severe neurotoxicity and neuroexcitation, that create almost constant seizure like episodes, adrenal storms, zero sleep and all these symptoms.
It's getting progressively worse, I have a severe autoimmune, immune and biochemical reactions. I've been taking Niacin for days and I'm only getting worse.
Things are progressing exactly as they did three years ago, which caused severe brain damage, body damage, an explosion of serious tick borne infections, mold, etc. I was half dead for three years. I'm a vibrant 37 year old woman normally. I haven't slept in two days, I'm now consistently flooded with neuroexcitatory chemicals and I can't stop it no matter what I do, the second my body falls asleep I get woken up with a huge surge of adrenaline. And this happens all throughout the day when I'm awake. I'm experiencing rapid nerve damage, cognitive disfunction, metabolic dysfunction, etc, etc. Nothing I take, nothing I do helps. It's at an uncontrollable point now. I can't walk, I'm losing my vision. I need help. I have to stop this immediately because if I don't I'm going to end up dead or exactly where I was three years ago, almost dead, and I cannot and will not live through all of that again.
I would be endless grateful for any help.
Thank you so much!
- Messages
- 9
first : who is your dr? and what does he say ?? what is your diagnosis? what are your basic symptoms? how long have you been ill for ? which treaments have you tried and whixh ones worked? did you undergo antibmicrobial therapy for your "tick borne infections although you do not mention a tick bite" ?
did u improve on the methylation protocol? after your first episode?
how could you be sure it was the methyl b12 in the first place? who diagnosed you tickborne infections?
why do you think a bacterial infection would flare up from methyl b12?? this is only true for certain herpes viruses as far as i know ? ebv for ex.
why did your dr ramp up the 5l-methyl-folate 2 weeks ago ? 5mg is allready quite high in my opinion.
and why are you not taking the b12??
which mutation do you have mtr? mtrr ? bhmt? comt? cbs ? mao ? others ..??
what else happened in your life these last 2 weeks ?
did u have a tick bite? did you have a severe physical stressor or psychological stresss?
try not to interpret to much into what you are experiencing. try and stay as calm as you can.
go see a dr and ask him if he can prescribe a benzodiazepine for a few days. if they help you may be suffering from something related to anxiety !!
then try and find the reasons for what is going on.
have u stopped the methyl-folate ??
really : try to stay calm - don´t panic. nerve damage doesn´just occur out of the blue! there is probably no permanent damage done !! most things can be corrected!!
Sushi
Moderation Resource Albuquerque
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- 19,935
- Location
- Albuquerque
There are many threads on amygdala retraining. Go to search in the top right corner of the screen and enter that topic to find the threads. Then you can add your thoughts and experience to an existing thread.
- Messages
- 98
@ahmo @Freddd (Freddd, you previously helped me on BrainTalk Communities years ago!) I am back again after another long break due to recurrence of uveitis (inflammatory autoimmune eye disease). It was the first time it came back in 2 years, so I have to limit my time online. I appreciate any help you can give me about the following questions. Have missed your input and positivity! I am copying Freddd just in case I might get lucky enough that he sees this, in case you don't know some of the answers to my questions.
I have been faithfully continuing Freddd's protocol and have been slowly but surely getting better! I decided against the hydroxy shots and will eventually do methyl shots, but for now taking a ton of Enzy's. Wasn't able to increase as fast as you did, but was inc at least 3x/month and will try to step that up. After 10 months on FP, I am currently taking total per day: Solgar MF 3,800mcg, Enzy MB 9,000mcg, AD 3,000mcg (can only tolerate Source Naturals), Dr's Best LCF 1,000mg. I take the MF and MB 3x/day and LCF 2x/day empty stomach in divided doses. Also take the other primary recommended supplements, including at least 900mgs potassium daily.
Questions:
1. I take AD daily, but started with a crumb taken with pm MB and slowly titrated up. I now need to figure out how to slowly decrease the pm MB taken at the same time as AD, because Freddd says they are absorbed better when taken apart. If I completely stop the pm MB dose abruptly, I think that will affect my healing (and might cause a crash), because I really only started seeing a lot more healing recently when my dose got higher. Any tips on how to do this? I was thinking that whenever I am increasing the a.m. and afternoon MB doses, I could slowly decrease the pm MB dose by the same amount, until I am only taking AD at the pm dose. That seems to be the best way to not affect my total daily MB intake without repercussions. That might take awhile though. (I am much more sensitive to AD than to MF and MB, so I think I am much better off taking smaller doses daily than a big dose weekly.)
2. My energy really drops until I take my afternoon LCF (after the AM dose wears off)! Is that something to be worried about? I wish I could take more, but not sure if that's safe. I only weigh about 95 to 100 lbs normally. BTW, it took 9 months of titrating to be able to take a whole capsule of LCF without feeling jittery/edgy, but now I don't know how I could live without it.
3. Still cannot add in SAM-e yet and not sure how to titrate that up. Five months ago I tried a 400mg Natures Made tablet twice and had terrible reaction, even though I used to take 800mg daily for years (until I started reacting to it when Costco changed from 200mg tablets to 400mg tablets about 5 years ago). The odd thing is that while I had severe brain fog/fatigue for the first 24 hours, the next morning I woke up with all this energy and started cleaning the kitchen for the first time in years! When I took the 2nd tablet later that day, I crashed again, and was better the next day, but didn't have as much energy as the first time. I gave up after that. Caledonia had a few ideas about titrating, but I thought you weren't supposed to cut up these tablets.
4. While searching on the forum I saw a posting you did on pyroluria. I think you may have asked me if I might have that once, and I didn't think so then, but after reading more details, I think I do! My look-alike sister thinks she has it too and probably my daughter somewhat. So last night I decided to try taking a 30mg zinc citrate capsule. Since the beginning of the protocol, I have been trying to add in zinc (the only mineral I was still missing from the protocol) with no luck. I tried different brands of both zinc picolinate and zinc citrate with bad reactions. Much to my surprise, last night I tolerated the same Solgar zinc citrate I had tried several times before with no problems! I'm taking this as a sure sign that some of my sensitivities are dissipating thanks to FP!
My question is, can you recommend a B6 or P5P that I can take, and the dosage? I have only been taking a low-dose B-complex per previous FP recommendations, so how much B6 I would be allowed to take? One website recommended 100mg for pyroluria. My B-complex has 10mg B6 and 10mg P5P, but I only take a 1/4 capsule a day to stay low-dose on the other B's.
It also recommends evening primrose oil, but I don't tolerate that at all, so hopefully that is not essential. I used to tolerate borage oil but that started bothering me several years ago. I could try again if you think it might help.
5. FYI, my snp's are below. I've seen people include those at the bottom of their postings in a signature of some kind. Can you tell me how to do that? Thanks for all your help!
COMT V158M rs4680 AG +/-
COMT H62H rs4633 CT +/-
VDR Bsm rs1544410 CT +/-
VDR Taq rs731236 AG +/-
MAO-A R297R rs6323 GT +/-
MTR A2756G rs1805087 AG +/-
MTRR A664A rs1802059 AG +/-
BHMT-02 rs567754 CT +/-
BHMT-08 rs651852 CT +/-
CYP1A2 164A>C rs762551 AC +/-
CYP1B1 R48G rs10012 CG +/-
CYP2D6 S486T rs1135840 GG +/+
CYP2D6 2850C>T rs16947 AG +/-
GSTP1 I105V rs1695 AG +/-
SOD2 A16V rs4880 AG +/
NAT2 R197Q rs1799930 AG +/-
Hover over your username above right, then click signature (on computer)
- Messages
- 98
Thanks a lot for info! Will try it after I post this to you. Might take me awhile because I can't see very well. I had to take a long break from the forum recently because of a recurrence of uveitis (serious inflammatory autoimmune eye disease that already caused blindness in one eye), and being on the computer can trigger it.
@ahmo suggested in the past some things I should contact you about, coincidentally, but I never had a chance to before I had to take a break. I need to reacclimate myself to what those questions were, but I hope you don't mind if I write you again on this thread. I think it had something to do with how to back down off Freddd's Protocol if it got to be too much, because you had to do that once, is that correct? I don't think I'm there yet, but there are times when I get a little scared about how much stuff I am taking, and how would I safely back down if I wanted to cut back, or if I couldn't go on because of a crash, etc.
I'm not very good at navigating the forum because of my eye issues. For example ahmo once explained where I should go to follow current posts under our main heading, especially pertaining to Freddd's Protocol, but I can't remember how to do that. I'm not even really sure what our main heading (category) is, but I think it is something to do with Detox. Also what is a sticky thread? Sorry to be so ignorant, but I originally found this forum through postings I found on Google searches, so I didn't start at the beginning probably like most people do. I'm really rusty at being on the computer due to the eye thing, and things have really changed a lot online over the years when I couldn't be on the computer.
If you know the answers to any of the other questions I asked @ahmo in my previous post above that you replied to, I would really appreciate it! I have not heard back from her yet and in the past she usually responded within a day or two. Can you suggest a better way to contact her besides this thread? Hopefully she will see my post here. She is so great and really helped me a lot when I first got on the forum. She explained things in a way that really resonated with me, and I enjoyed our communications. I listed @Freddd on the chance I might get lucky enough for him to respond. He was taking a break from the forum when I started FP. Over a dozen years ago, he helped me a lot on a different forum, and at that time he was also the go-to person who knew everything!
@ahmo suggested in the past some things I should contact you about, coincidentally, but I never had a chance to before I had to take a break. I need to reacclimate myself to what those questions were, but I hope you don't mind if I write you again on this thread. I think it had something to do with how to back down off Freddd's Protocol if it got to be too much, because you had to do that once, is that correct? I don't think I'm there yet, but there are times when I get a little scared about how much stuff I am taking, and how would I safely back down if I wanted to cut back, or if I couldn't go on because of a crash, etc.
I'm not very good at navigating the forum because of my eye issues. For example ahmo once explained where I should go to follow current posts under our main heading, especially pertaining to Freddd's Protocol, but I can't remember how to do that. I'm not even really sure what our main heading (category) is, but I think it is something to do with Detox. Also what is a sticky thread? Sorry to be so ignorant, but I originally found this forum through postings I found on Google searches, so I didn't start at the beginning probably like most people do. I'm really rusty at being on the computer due to the eye thing, and things have really changed a lot online over the years when I couldn't be on the computer.
If you know the answers to any of the other questions I asked @ahmo in my previous post above that you replied to, I would really appreciate it! I have not heard back from her yet and in the past she usually responded within a day or two. Can you suggest a better way to contact her besides this thread? Hopefully she will see my post here. She is so great and really helped me a lot when I first got on the forum. She explained things in a way that really resonated with me, and I enjoyed our communications. I listed @Freddd on the chance I might get lucky enough for him to respond. He was taking a break from the forum when I started FP. Over a dozen years ago, he helped me a lot on a different forum, and at that time he was also the go-to person who knew everything!
ahmo
Senior Member
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Hi Surfbaby. Sorry to hear of your eye problems, but also happy to hear you're having success w/ FP.
I'm trying to recall why I suggested sregan, which I remember doing. I can't find our conversation in my list, so can't check it out.
I'm trying to recall why I suggested sregan, which I remember doing. I can't find our conversation in my list, so can't check it out.
I don't know, I've not done this. Your plan sounds good.
Don't know.
I don't use SAMe.
Great you've found some help w/ pyroluria protocol. I use Thorne p5p. I'd used B6 for years before this, but it was useless. P5P is the form I needed.
Hi Surfbaby. Sorry to hear of your eye problems, but also happy to hear you're having success w/ FP.
I'm trying to recall why I suggested sregan, which I remember doing. I can't find our conversation in my list, so can't check it out.
This blog entry maybe?
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So very happy to hear from you! I can't believe I actually posted a limerick, because that's not something I would usually try to do, and I was surprised I came up with something. I thought it would be a fun way to reach out to you, but then I worried what the members only thing meant.Hi Surfbaby. Sorry to hear of your eye problems, but also happy to hear you're having success w/ FP.
I'm trying to recall why I suggested sregan, which I remember doing. I can't find our conversation in my list, so can't check it out.
I got a little scared at the thought that I might not hear from you, because not only do I value your wealth of knowledge, but I really like your friendly, easy-going style! I do think we have things in common as far as some of our health problems. I stumbled upon some old posts about what you've gone through in the past, and didn't realize you had been through so much too. I guess we all have. I am trying to slowly reach out to others on the forum and will be able to do that more when my eyes are better. Hope I don't get a negative eye exam on Monday! Yikes!
Right now my eyes are literally crossed from posting too much because of a big flareup I had this week probably with my allergies. I tagged you on 2 recent posts to Caledonia about that, and appreciate any input you might have. I want to write you about some clarifications on your replies, but my eyes need a break for now, so I'll post as soon as I can.
I did want to mention that @sregan listed a blog post right above this post that might be why I thought you had referred me to him about how to back-off of Freddd's Protocol. I did find a lot of valuable information on his blogs (Thanks @sregan !!) However, because his doses are so much smaller than mine, and my original concern was about how to stop the protocol while doing much bigger doses, do you think it could've been someone else you told me about? Could it possibly have been @stridor ? I remember you mentioning him also. When my eyes are better, I can look back through our posts again if you don't recall.
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P.S. It's not that I'm planning to stop the protocol right away, but sometimes I think I want to remember if I might have felt better before, especially before I had brain setbacks from chelation I think there were times when I had more energy before, but then I also had a lot more down times too, sometimes for more than a day. Now I'm a little more even-keeled, and have seen big improvements with some things like asthma, and some of my sensitivities.
But there are times now when I suddenly just get so tired, more tired than I used to, but at least I'm not down for days at a time like before sometimes. LCF really helps. It's not great when that happens when I'm not home. I used to be able to go for quite a while without eating when I wasn't home, but not anymore. It's kind of a mixed bag, but I still feel like it's in favor of FP. It would be nice to have a plan just in case I want to take a break, but I think stopping abruptly would cause a major crash.
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Oh, I am really taking a break after this! After I wrote you, I ended up taking the Klinghardt questionnaire and had a borderline score: I might have it, I might not have it.
Klinghardt recommends so many supplements, but I thought I would start with these 3 primary ones: Solgar zinc citrate 30 mg, Pure Encapsulations P5P 50 mg, and Nutricology GLA Borage Oil (instead of evening primrose oil that I've had problems with) after this allergy flare-up is over.
What supplements do you take for pyroluria, and how many milligrams of each, especially zinc and P5P? If it's not essential, I might skip the Borage Oil because I've had some reactions to that, but I used to tolerate it years ago. Willing to try again.
About the P5P, do you think 50mg is too much? The only reason I was going for Pure Encapsulations instead of Thorne (33.8mg) is because I already take their B-Complex, so I am used to their P5P. That much B6 seems to contradict the rule about taking low doses of B's in B-complex and in general on FP, but do you think it's OK for purposes of pyroluria? Do you know if B6 increases the need for potassium like the other B's do?
Also I recently saw posts in the forum where people had bad reactions to B6, including return of tingling and numbness in hands/legs/feet, causing them to have to increase MB12. I think that's because B6 might compete with B12 somewhat. Did you ever have a problem with B6? Do you only take 1 capsule/day? Some also said it was very important to get enteric-coated tablets instead of capsules for better absorption, however I wanted to stay with the Pure Capsulations brand if possible.
@caledonia do you know anything about concerns about taking higher B6 doses with FP and whether enteric-coated is essential?
caledonia
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The info I have is to keep B6 (P5P) below 20mg if you have CBS issues. I don't know about enteric or not. It looks like there is also a sublingual form if you're having absorption issues in the gut.
Here are a couple of threads discussing P5P
http://forums.phoenixrising.me/index.php?threads/enteric-coated-p5p.31531/
https://raypeatforum.com/community/threads/p5p-a-form-of-b6-toxicity.3923/
If you're getting extra pain, it may be due to the overuse of evening primrose oil or borage oil. It has to do with the body's production of good and bad eicosanoids (aka prostaglandins). You need a bit of GLA (contained in those oils) to produce eicosanoids, but if you get too much, over time the production will go towards producing the bad ones, causing more pain.
Omega 3's, such as pharmaceutical grade fish oil, will shift the production back to good eicosanoids, reducing pain.
The amount of GLA contained in primrose oil or borage oil capsules can be too much if taken daily or even weekly. You can get a mg or two from a bowl of steel cut oats, which is in the range that is needed.
There are no known issues which can be attributed to CBS up-regulations. Treatment of SNPs which have no negative impact is not necessary, and making a recommendation which will potentially induce a vitamin deficiency in such a situation is highly irresponsible.
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Thanks so much for this info. I don't have any CBS snp's, is that what you meant? Does this 20mg limit for CBS issues apply whether it's B6 or the P5P form?
If I decide to take the 50mg P5P capsule instead of enteric , maybe I will divide it up and take less less at first. I actually did see both of those threads you copied me on, but to be honest I didn't understand all of it.
I used to take borage oil regularly several years ago and I did have fibromyalgia worse then, but I don't know that the pain was related to the borage, as back then my fibromyalgia did not improve after I stopped taking it. I do know that my skin was in better condition then. The possible increase of pain is definitely a concern, as my fibromyalgia is much better now and I do not want to flare it up.
I take a lot of Omega-3's daily (mostly salmon, some flax oil), but probably get no GLA from my diet. Do you think that will help offset the bad ecosanoids? I could also try evening primrose instead of borage as it has less GLA, but I seem to recall borage agreed with me better. I'll make sure to get one that has no PA's (pyrrolizidine alkaloids) if you think that's a concern. Most brands tout no PA's and I read it's not really in the seed oil anyway,mostly in the leaves.
I don't do well with most grains and cannot do oats. Do you think there is any GLA in my current diet? My current diet (all organic unless indicated): assorted veggies, chicken breast, brown rice, eggs, flax oil, coconut oil, coconut butter, dark cacao powder, salmon (wild Alaskan), Bragg's liquid aminos & tiny amount (fraction of a teaspoon) canola oil; (last 2 are non-GMO, but not org).
Unlike most people I get almost no Omega-6 in my diet (except what is in the flax and canola oil), as I eat no processed foods. I think my inflammation is better with less Omega-6, but I've heard too little Omega-6 can be bad as well. I think my ratiio leans much higher on Omega-3 than Omega-6 than Udo recommends. Do you know anything about that?
I will proceed cautiously on adding in P5P and borage (or epo), and will definiteely wait until after my current probable "allergy" flareup subsides. Really appreciate your valuable input!
ahmo
Senior Member
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I'm responding without reading Caledonia's response, so hope I'm not repeating.
I took several P5P capsules when I bbegan. My goal was to remember dreams. Once I began remembering, I dropped my dose down. Later, after a period of detox, I began experiencing excess ammonia from P5P, as I had w/ B2. I now no longer take P5P on its own, just 25mg in my Multi B.
Zinc, manganese, selenium, P5P. Zinc I regularly take 50mg, but at times need more. I adjust by muscle testing. It seems to be sensitive to stress. Also manganese. I now use a small piece of sweet potato AM/PM for extra manganese. Plus a Thorne manganese capsule midday. Before adding the sw potato, I was needing more capsules.
I took several P5P capsules when I bbegan. My goal was to remember dreams. Once I began remembering, I dropped my dose down. Later, after a period of detox, I began experiencing excess ammonia from P5P, as I had w/ B2. I now no longer take P5P on its own, just 25mg in my Multi B.
see above
Don't know, don't think so. But it might for you.
I only used caps.
caledonia
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I think that's for either form. CBS issues means either CBS SNPs or issues with sulfur foods or supplements with or without SNPs.
That should help.
The only way I know of to get GLA from the diet is steel cut oats.
I'm glad you're not eating processed food. That should help. GLA is an Omega 6.
I'm sure my ratio is very high on Omega 3 to Omega 6 and not anything like Udo recommends, but it works for me.
Sounds good. With the borage, maybe do something like puncture the capsule with a needle, then squeeze out a small drop onto your finger and lick it off. Do that once a week or even less.
If there are no CBS SNPs, then the "CBS issues" are not CBS issues at all.