• Welcome to Phoenix Rising!

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

    To become a member, simply click the Register button at the top right.

WHY HYDROXYCBL MIGHT NOT WORK

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Here's some Hydroxycybl info I just came across in Amy Yasko's ebook, Autism, Pathways to Recovery. This might underlie why it works for some and not for others, although I'm of the category that she suggests hydroxy might work better for, and it didn't seem so to me. pg 145-6
This book is available as free pdf: http://www.holisticheal.com/autism-pathways-to-recovery-book-and-workbook.html

"However, before supplementing with B12, please first take into account your COMT V158M and VDR/Taq status, which will help to determine whether to focus more heavily on hydroxyl B12 or methyl B12 for support. In my clini- cal experience, I’ve regularly observed that those with COMT V158M + and VDR Taq – mutations don’t tolerate methyl donors well, including methyl B12. Also adults, regardless of their COMT V158M/VDR Taq status, have more limited tolerance than children for the detox triggered by methyl B12. Despite that, those who are MTR + and MTRR + can and should look at higher-dose B12 support, balancing the ratio of methyl to hydroxyl B12 based on COMT V158M/VDR Taq status. As you gradually proceed to add in B12, you can also take into account your own or your child’s personal tolerance for it. In addition to either methyl or hydroxyl B12, I often suggest the use of low doses of cyano (to support the eyes) and adenosyl B12 with vitamin E succinate, as you will see in the supplement recommendations.

"One way to begin B12 support is with one chewable methyl B12 (5mg) or hy- droxyl (1 or 2mg) daily, gradually increasing to two, three, or more per day if you can tolerate it. If mood swings occur, then decrease the dose of B12 back down to a more comfortable level. While a new nasal B12 is available, I don’t recommend using that exclusively. I prefer some B12 to be absorbed through the gut with the help of Intrinsic Factor, which is contained in some of the recommended supple- ments. In addition, the use of oral B12 sprays (available as hydroxyl or methyl,) topical B12 cream, B12 gum and the B12 patch are other means by which to support B12 in the body. I like to see multiple routes and forms of B12 used until I feel that the system has been saturated with B12 (see discussion of cobalt levels below). Literature suggests that oral B12 is as effective as injected B12. However, if preferred, you can consider B12 injections, making sure to use either plain methyl B12 (without any added folinic or NAC) or plain hydroxyl B12 injections. You can use the chewable B12 and the oral B12 spray on the injection “off days.”

"If you plan to use injections, start with once per week, and gradually increase to three times per week. Allow your tolerance levels to determine how you can gradually increase the B12. As always work in conjunction with your health care provider."
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Here's some Hydroxycybl info I just came across in Amy Yasko's ebook, Autism, Pathways to Recovery. This might underlie why it works for some and not for others, although I'm of the category that she suggests hydroxy might work better for, and it didn't seem so to me. pg 145-6
This book is available as free pdf: http://www.holisticheal.com/autism-pathways-to-recovery-book-and-workbook.html

"However, before supplementing with B12, please first take into account your COMT V158M and VDR/Taq status, which will help to determine whether to focus more heavily on hydroxyl B12 or methyl B12 for support. In my clini- cal experience, I’ve regularly observed that those with COMT V158M + and VDR Taq – mutations don’t tolerate methyl donors well, including methyl B12. Also adults, regardless of their COMT V158M/VDR Taq status, have more limited tolerance than children for the detox triggered by methyl B12. Despite that, those who are MTR + and MTRR + can and should look at higher-dose B12 support, balancing the ratio of methyl to hydroxyl B12 based on COMT V158M/VDR Taq status. As you gradually proceed to add in B12, you can also take into account your own or your child’s personal tolerance for it. In addition to either methyl or hydroxyl B12, I often suggest the use of low doses of cyano (to support the eyes) and adenosyl B12 with vitamin E succinate, as you will see in the supplement recommendations.

"One way to begin B12 support is with one chewable methyl B12 (5mg) or hy- droxyl (1 or 2mg) daily, gradually increasing to two, three, or more per day if you can tolerate it. If mood swings occur, then decrease the dose of B12 back down to a more comfortable level. While a new nasal B12 is available, I don’t recommend using that exclusively. I prefer some B12 to be absorbed through the gut with the help of Intrinsic Factor, which is contained in some of the recommended supple- ments. In addition, the use of oral B12 sprays (available as hydroxyl or methyl,) topical B12 cream, B12 gum and the B12 patch are other means by which to support B12 in the body. I like to see multiple routes and forms of B12 used until I feel that the system has been saturated with B12 (see discussion of cobalt levels below). Literature suggests that oral B12 is as effective as injected B12. However, if preferred, you can consider B12 injections, making sure to use either plain methyl B12 (without any added folinic or NAC) or plain hydroxyl B12 injections. You can use the chewable B12 and the oral B12 spray on the injection “off days.”

"If you plan to use injections, start with once per week, and gradually increase to three times per week. Allow your tolerance levels to determine how you can gradually increase the B12. As always work in conjunction with your health care provider."

Hi Ahmo,

I find all sorts of bad advice in things like this, which based on my experience would couse many more problems. One a week gets oscilations going stronger and stronger in some people. If they attribute "emotional volitility" to too much b12 they stop the neurological healing taking palce in my expeirience. Also in my experience is that the more frequently it is stopped in midstream the less well it heals each time. The FIRST time is by far the best time, the best attained but not yet maintained long enough to be healed. Each time the healing span lasts a little shorter with less and less momentum, as it were. These mistakes have cost me badly. Setbacks are expensive, whether induced or unintended, and to purposefully induce them seems rather strange to me. Of course it could be written by a person who has never experienced CNS and body healing and the effects and doesn't have any experience of now it can be done,. I have and experienced with a lot of others going through it all more or less together, and lots of people had similar experiences. We talked about it.

In doing the trials of types and forms imcluding nasal gels, oral sprays, drops, skin patches etc, so far nothing comes close to the 5 star MeCbl and AdoCbl sublinguals and 5 star MeCbl injections if protected from light at all times. There are some good advice, don't have it combined with anything else. It's more likely to cause problems for all sorts of reasons and then you don't know what you are reacting too.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
[quote="Freddd, post: 339120]

Thanks Freddd. I just wanted to put out the possibility that these SNPs might account for the differences reported by PWCs. " I’ve regularly observed that those with COMT V158M + and VDR Taq – mutations don’t tolerate methyl donors well, including methyl B12." This I thought might be why I experience histamine reactions w/ too much of either MTHF or B12. However, I didn't get anything out of hydroxy. And Yasko is talking about treating children. BTW, how do you rate Pure Advantage B12 spray? It wouldn't allow the long absorption that the other forms allow by mouth. Thanks.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
[quote="Freddd, post: 339120]

Thanks Freddd. I just wanted to put out the possibility that these SNPs might account for the differences reported by PWCs. " I’ve regularly observed that those with COMT V158M + and VDR Taq – mutations don’t tolerate methyl donors well, including methyl B12." This I thought might be why I experience histamine reactions w/ too much of either MTHF or B12. However, I didn't get anything out of hydroxy. And Yasko is talking about treating children. BTW, how do you rate Pure Advantage B12 spray? It wouldn't allow the long absorption that the other forms allow by mouth. Thanks.

Hi Ahmo,

I would like to suggest another alternative, in some people with folate difficulties, taknong MeCbl will very quickly outrun the amount of folate a person has avaialble in their body and go into l-methylfolate insufficiency which produces a potentially large histamine reaction, YOU MEAN THAT ONE? I suggest that becasue the paradoxical foalte defficiency is not understood that when the reaction happens is is assigned to a different cause. Now if done very specifically so as not to allow MeCbl to deplete l-merthylfolate the whole thing may turn out to be exactly what you are looking for. Seriously low l-methyfolate causes allergies to incresaes, asthma, MCS, inflammation throughout the body. I know. I have been through it over and over and am quite nicely protected against it as long as I take enough Metafolin. This is a result of 50 years of research on folic acid and CyCbl/HyCbl and the incorrect understandongs. The results of MeCbl, AdoCbl and L-Metafolin are not predictable by CyCbe/HyCbl/folic/folinic at all. They don't translate. They don't predict. They don't replicate.


Those who believe the other interpretation will be too frightened to actually try it the way I did and lots of others have, a way that works and leads to substantial healing in a year ot two.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi Ahmo,

I would like to suggest another alternative, in some people with folate difficulties, taknong MeCbl will very quickly outrun the amount of folate a person has avaialble in their body and go into l-methylfolate insufficiency which produces a potentially large histamine reaction, YOU MEAN THAT ONE? I suggest that becasue the paradoxical foalte defficiency is not understood that when the reaction happens is is assigned to a different cause. Now if done very specifically so as not to allow MeCbl to deplete l-merthylfolate the whole thing may turn out to be exactly what you are looking for. Seriously low l-methyfolate causes allergies to incresaes, asthma, MCS, inflammation throughout the body. I know. I have been through it over and over and am quite nicely protected against it as long as I take enough Metafolin. This is a result of 50 years of research on folic acid and CyCbl/HyCbl and the incorrect understandongs. The results of MeCbl, AdoCbl and L-Metafolin are not predictable by CyCbe/HyCbl/folic/folinic at all. They don't translate. They don't predict. They don't replicate.


Those who believe the other interpretation will be too frightened to actually try it the way I did and lots of others have, a way that works and leads to substantial healing in a year ot two.

Hi Freddd. I've read this countless times, trying to get my brain wrapped around what you're saying. I think I just got it. And I see why this advice of Dr. Amy's would be exasperating. (She does the same re glutamine/glutamate, maybe there are other lapses...) So if I return to my experience of independently getting histamine reactions to both methylB12 and methylfolate, maybe what I've needed is to have the dosages really pegged to each other. I'm currently using 1 Nutricology Quatre-MTHF , and 1 Jarrow 1000 mb12 + 1/4 cap Dibenco, and not itching. cheers, ahmo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd. I've read this countless times, trying to get my brain wrapped around what you're saying. I think I just got it. And I see why this advice of Dr. Amy's would be exasperating. (She does the same re glutamine/glutamate, maybe there are other lapses...) So if I return to my experience of independently getting histamine reactions to both methylB12 and methylfolate, maybe what I've needed is to have the dosages really pegged to each other. I'm currently using 1 Nutricology Quatre-MTHF , and 1 Jarrow 1000 mb12 + 1/4 cap Dibenco, and not itching. cheers, ahmo

Hi Ahmo,

You will likely have far better results with Enzymatic Therapy B12 infusion than the Jarrow which went bad a year ago now.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi Ahmo,

You will likely have far better results with Enzymatic Therapy B12 infusion than the Jarrow which went bad a year ago now.

Freddd, I've read your posts re the changes in Jarrow. However, this ET product has fructose and mannitol, which I'm avoiding. By "better results", do you mean better absorption? If so, wouldn't taking more Jarrow work? Thanks, ahmo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd, I've read your posts re the changes in Jarrow. However, this ET product has fructose and mannitol, which I'm avoiding. By "better results", do you mean better absorption? If so, wouldn't taking more Jarrow work? Thanks, ahmo


No, NOT better absorbtion. It's it purely qualitative. Jarrow MeCbll does not work on healing neurology any longer and allowed me to go into a severe relapse, of subacute combined degeneration, sleep disorders, depression, severe dizzyness, personality changes etc. On scale form 0 to 10 with ENZY at 10 Jarrow might be 2, the symptoms came back slowly month by month rather than quickly day by day. The have since retreated on the ENZY. There is no alternative that I know of. or would suggest.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
No, NOT better absorbtion. It's it purely qualitative. Jarrow MeCbll does not work on healing neurology any longer and allowed me to go into a severe relapse, of subacute combined degeneration, sleep disorders, depression, severe dizzyness, personality changes etc. On scale form 0 to 10 with ENZY at 10 Jarrow might be 2, the symptoms came back slowly month by month rather than quickly day by day. The have since retreated on the ENZY. There is no alternative that I know of. or would suggest.

OK, I'll order it and see how it goes. Would be brilliant if I can tolerate it and it gives me as much of a boost as it has you. OH yes, I just discovered that Life Extensions has discontinued their L-Selenocysteine selenium. I've been taking these 400mcg/d. Can't remember if you're also working w/ selenium, but I'm looking for another brand of this form. Any ideas? Thanks, cheers, ahmo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Jarrow 200mcg
  • Activated Selenium
  • 200 mcg Methylselenocysteine
  • With BroccoMax + Vitamins B2 & E
  • Sulforaphane
  • Gluco
  • Sinolate
  • Dietary Supplement
  • BroccoRaphanin
Selenium Synergy contains the most effective form of selenium, methylselenocysteine, in a synergistic formulation with BroccoMax (rich in sulforaphane glucosinolate), vitamin B2 (as riboflavin) and vitamin E (as d-alpha tocopheryl succinate).

http://www.iherb.com/Jarrow-Formula...Capsules/169?gclid=CPby9K7h-LUCFcZFMgoddjIA3g

Supplement Facts
Serving Size: 1 Capsule
Servings per Container: 60
Amount Per Serving % Daily Value
Vitamin E
(as d-alpha tocopheryl succinate) 30 IU 100%
Vitamin B2 (as riboflavin) 2 mg 118%
Selenium
(as methylselenocysteine) 200 mcg 285%
Broccoli seed extract
(Brassica oleracea) 150 mg *
*Daily Value not established.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Jarrow 200mcg

Selenium Synergy contains the most effective form of selenium, methylselenocysteine, in a synergistic formulation with BroccoMax (rich in sulforaphane glucosinolate), vitamin B2 (as riboflavin) and vitamin E (as d-alpha tocopheryl succinate).]

Unfortunately I'm still avoiding sulfur, so this won't do. All the rest seem to be selenomethionine. I'll keep looking. Thanks