• 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, 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.

is there any medical basis to Freddd's protocol?

Victronix

Senior Member
Messages
418
Location
California
SNPs are like a clue, but they aren't the full solution. There is a huge amount of redundancy in gene function and so you can have 1 that has a polymorphism but 5 others that do a same or similar thing that can compensate. Its extremely complicated. Nonetheless, the ones typically focused on, i.e. COMT, MTHFR, etc are examined in research for a reason and typically have a lot of data to support increased or decreased likelihoods of outcomes in various situations. But those are averages across groups, so everything is a tendency or a likelihood, not certainty.

I have COMT++ and it fits with how incredibly sensitive I am to many things. I struggled with methyl B-12 and it took a long time, but over time I've totally adapted to it. OTOH, I was unable to adapt to m-folate (or even folinic acid), even trying for a full year and taking a lot of elemental potassium, so had to abort that effort. I do take a combo adreno-hydroxy-methyl 1000 2x a day along with the methyl B-12.

Freddd's work has been extremely helpful to many people, including myself. Considering the differences between the cobalamins has been an important issue that his work continues to keep under investigation. We are all learning and experimenting as we go.
 

Gingergrrl

Senior Member
Messages
16,171
Ginger She wrote an article called the Simplified roadmap to health.. or something like that. I got the link from someone here but in it was a chart of what types of Vit B to take. I have attached the chart. That's what I'm using.

@Aerose91 Thank you for the chart and I just printed it out. I just wanted to clarify when you said, "She wrote an article" did you mean that this chart is written by Amy Yasko or by someone else? I am not starting any b12 right now so no rush! It is just interesting to me for the future, if I try again and I want to compare my SNP's to the chart. Thanks again!
 

Victronix

Senior Member
Messages
418
Location
California
Freddd clumps every person together saying that no matter who you are you need mb12 and hb12 is worthless. Why is someone who believes that approach, when we of all people know how acutely different everyone is, gaining any credibility or traction?

His approach works for a lot of people and in some cases turns lives around.

On the B-12 forum I was on with him, the vast majority who posted on there did benefit from his protocol. My guess is that people on this forum are going to be more sensitive, with everything else they are dealing with, so the situation is more complicated. But even here -- the traction and his protocol being pinned on here are evidence that people have benefited from the approach. If they didn't, it wouldn't be pinned.

Personally I see him as a historically important figure in the whole area of methylation -- not as a clinical researcher but as a grassroots maverick. The ideas he's pulled together, the methods he's figured out, etc., are radical and have changed lives, many many lives. Those ideas will help inform the basis for clinical research in the future. Yasko also has contributed and is doing important work.
 

Aerose91

Senior Member
Messages
1,401
@Aerose91 Thank you for the chart and I just printed it out. I just wanted to clarify when you said, "She wrote an article" did you mean that this chart is written by Amy Yasko or by someone else? I am not starting any b12 right now so no rush! It is just interesting to me for the future, if I try again and I want to compare my SNP's to the chart. Thanks again!
Your welcome. And yes, the article and chart were written by Amy Yasko
 

Aerose91

Senior Member
Messages
1,401
His approach works for a lot of people and in some cases turns lives around.

On the B-12 forum I was on with him, the vast majority who posted on there did benefit from his protocol. My guess is that people on this forum are going to be more sensitive, with everything else they are dealing with, so the situation is more complicated. But even here -- the traction and his protocol being pinned on here are evidence that people have benefited from the approach. If they didn't, it wouldn't be pinned.

Personally I see him as a historically important figure in the whole area of methylation -- not as a clinical researcher but as a grassroots maverick. The ideas he's pulled together, the methods he's figured out, etc., are radical and have changed lives, many many lives. Those ideas will help inform the basis for clinical research in the future. Yasko also has contributed and is doing important work.

I'm not saying people haven't benefited from it and won't in the future; if that's how I came across that's wasn't my intention. However, my issue lies in the fact that Freddd says everyone needs mb12 and all other forms of b12 are ineffective because they didn't work for him. That's a pretty blanket statement and I think has been well disproven at this point. So I guess his protocol only refers to those who can tolerate high levels of mb12?
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Freddd is a systems analyst and approaches problems from that angle.
Thanks! That explains a lot. I work with systems engineers in aerospace and with drug developers in the biosciences. I've always been glad that the people who put other people into space don't test drugs on people, and that people who test drugs on people don't create space vehicles.

You are misled if you think that doctors and researchers have proven anything regarding the snps that Yasko talks about.
I disagree. For any SNP in question, if you consult pubmed, (http://www.ncbi.nlm.nih.gov/pubmed) you can read a lot of the research that supports 'some' of the recommendations you get from practitioners. In some instances, they have been able to quantify the effect of a single SNP, whether it's a hetero or a homozygous mutation. But you have to be able to read the research. That's where brain fog becomes a real problem. When I first started on this forum, it took 2 months of reading the heartfixer site before I could make sense of it. Literally, two months.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I disagree. For any SNP in question, if you consult pubmed, (http://www.ncbi.nlm.nih.gov/pubmed) you can read a lot of the research that supports 'some' of the recommendations you get from practitioners. In some instances, they have been able to quantify the effect of a single SNP, whether it's a hetero or a homozygous mutation. But you have to be able to read the research. That's where brain fog becomes a real problem. When I first started on this forum, it took 2 months of reading the heartfixer site before I could make sense of it. Literally, two months.

I probably didn't make myself very clear but I think snps can give very valuable information. Certainly reading the research is very revealing.

What Yasko does though is not based on this research. She has tested many patients, noted patterns and responses and her recommendations are based on these. She tries to harmonise this with the science and find reasons as to why things seem to work a certain way, but most of what she says are assumptions and conjecture and is often at odds with what the research actually says.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Yasko believes that certain snps make you less tolerant of methyl groups and that Methyl B12 can be a problem for some.

Freddd on the other hand is of the opinion that many (or most) don't convert Hydroxyl well and should take Methyl and Adenosyl instead.

I have heard of many that find Hydroxl B12 helpful (even when their snps suggest they could tolerate Methyl B12)
I have no trouble with Methyl B12 (even though my snps suggest I should)

I really don't think the science has yet been done for us to be dogmatic either way.

Yasko pretty much acknowledges that the form of B12 that will work for any given person, even taking SNPs into account, is a bit hit-and-miss.

Here's the addendum to the chart posted earlier by Aerose91 from Yasko's "Simplified Road Map to Health" document...

While this chart helps to guide you on the choice of the type of B12 based on nutrigenomics, it is also important to pay attention to what your body is telling you. In spite of nutrigenomics if you are having trouble tolerating methylB12 then listen to your body and use hydroxyl with some adenosyl B12 instead. This is particularly true for adults who often have a more difficult time with any supplements that can trigger detox including any methylB12 support.

LINK
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Brenda-

Thanks for that. So Freddd's protocol was just the protocol that worked for him? And he touts it like it's gospel and all of these doctors and research is wrong? He won't get 23and me either? I'm sorry but I'm having a hard time seeing how there's any merit at all to Freddd and his protocol. He's heavily pushing things that can be very dangerous to some of us.

I agree, he's way too dogmatic in his approach. His protocol has helped out many but others have not fared so well with it. He generally refuses to accept that his recommendations are at fault. As has been said before, it is very clear that there is no "one size fits all" approach to methylation. Caveat emptor...
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
What Yasko does though is not based on this research. She has tested many patients, noted patterns and responses and her recommendations are based on these. She tries to harmonise this with the science and find reasons as to why things seem to work a certain way, but most of what she says are assumptions and conjecture and is often at odds with what the research actually says.

Yeah, she get's criticized a lot on these forums for not using enough hard science as the basis for her treatment recommendations. I think you're right, in that the bottom line is that she's using first hand trial and error methods and then tries to "wedge a square peg in a round hole" when it comes to getting her real world experience to line up with the science. Regardless, she seems sincere (if not a little money grubbing) in her efforts and appears to be doing more good than harm, from what I can tell.
 
Last edited:

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I'm not saying people haven't benefited from it and won't in the future; if that's how I came across that's wasn't my intention. However, my issue lies in the fact that Freddd says everyone needs mb12 and all other forms of b12 are ineffective because they didn't work for him. That's a pretty blanket statement and I think has been well disproven at this point. So I guess his protocol only refers to those who can tolerate high levels of mb12?

I think you are generalising too much what Freddd has said. He has very strong opinions and I don't think he is always right, but I haven't seen him make the blanket statements that you are attributing to him.

He does not say his protocol will help everyone. He says it helped him, his children and hundreds of others. He presumes it will help others with similar B12 transport, absorption or conversion problems.

His view of Hydroxy is the same that many of us have of Folic Acid - that is that many cannot convert it well or at all. He therefore recommends taking both Methyl and Adenosyl as the active forms that bypass the many factors that can interfere. I haven't seen him mandate high levels of B12, though he does believe healing will often happen with large doses where it didn't with smaller ones. I have seen him advise titrating carefully and keeping watch on responses. I think as Victronix said, we are often far more sensitive to meds and changes than many that Freddd has worked with so if the doses he advises starting at are too high I don't see any problem with starting lower.

A long way down and back

This thread is very long, but if you read a few posts from where I have linked you'll see Freddd's explanations.

As to your original question, is this backed by medical science? Probably not, in the same way as you won't find advice to avoid Folic Acid in the medical literature.
 

Aerose91

Senior Member
Messages
1,401
So something doesn't compute for me. I'm hearing here and a few other places that SNP's have no bearing on these particular supplements and Oktoberfest what it's presumed they do. So then why do we do 23andme? What's the point if looking at it has no benefit or treatments? All methylation is just based on trial and error?
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Some of the recommendations fit with the science and some of them do not. Some things work but the explanations are often assumptions rather than fact. There is not enough information available yet to say definitively what treatment one should pursue. Trial and error is the only way, but with some guidelines along the way.

23andme has been very useful for me. I have discovered some rare pathogenic mutations that are the cause of metabolic and mitochondrial disorders. I am still following up on this.

I have mutations in the folate processing genes (not MTHFR) and B12 transport genes that make it much more likely that I will find supplementation helpful. Since beginning supplementation almost a year ago my MCV has dropped from well outside the normal range to just inside it.

I have found that I do not have the common snps for Haemochromatosis even though my level of iron fluctuates and is often above normal range.

I found I carry a haplotype which predisposes for Celiac which is helpful to know because the antibody tests are unreliable for me because I have low IgA.

I am often frustrated when researching that 23andme has some of the snps I need to find an answer but not all of them. I can't wait for the day when complete sequencing is available at a reasonable price. It's getting closer!
 

Helen

Senior Member
Messages
2,243
23andme has been very useful for me. I have discovered some rare pathogenic mutations that are the cause of metabolic and mitochondrial disorders. I am still following up on this.

I have mutations in the folate processing genes (not MTHFR) and B12 transport genes that make it much more likely that I will find supplementation helpful. Since beginning supplementation almost a year ago my MCV has dropped from well outside the normal range to just inside it.

Hi Sea,

If it isn´t a too personal question, would you mind sharing what SNP´s you consider connected to metabolic and mitochondrial disorders worth looking at? And what SNP´s, except for MTHFR, you consider are affecting the folate and, I suppose, the methionine cycles? I assume those you are looking at, are not among the ones presented in a methylation panel from e.g. Yasko or GeneticGenie?
 

shah78

Senior Member
Messages
168
Location
st pete , florida
@Aerose91 Check out a Fb page called mthfr snps and/or mthfr gene mutations. You will appreciate the genius of Freddd after a few hundred posts! No one (almost no one)is actually trying an actual protocol. They are simply fretting and spinning their wheels worrying about OVERMETHYLATION. Freddd would call this actual METYLATION! ie, the thing you actually want!...... Especially the COMT++ people and the people worried that they are COMT++. It is so sad. AS Freddd says: "Everyday you wait , you get more damage." The gene mutation site is populated by several "professional" health care providers "(think vested interest)that are constantly telling the hoi poloi that the "subject of methylation" is too complicated for anyone to possibly do by themselves. I would love Fred to go on these sites and light them up! I do a have dog in this hunt , because I followed Fredd's protocol (at about 1/30th his dose!) and found almost immediate relief. Luckily, I started Freddd's protocol BEFORE I had the 23 and me results. Lo a behold I"M COMT++. And looky-looky I can take methyl b12! Had I not known of Freddd and instead started at FB mthfr gene mutations, I'd have been frighted to start my "cure". Tragedy averted. Long live Freddd and long live his protocol!
 

shah78

Senior Member
Messages
168
Location
st pete , florida
@Aerose91 Kruse just recently claimed (and I pretty much believe him) that enough DHA+electrons(ketosis) + cold thermogenesis(Magnetism) + no blue light after dark + limiting non native EMF will stop all heterogygous snps from expressing and most homozygous ones. Outrageous claim, but I'm all in on it for now. I'm not giving up my Mb12 /Ab12/folate just yet, but I can't wait to lower my already meager doses. Maybe as early as 2015!
 

PeterPositive

Senior Member
Messages
1,426
@Aerose91 Check out a Fb page called mthfr snps and/or mthfr gene mutations. You will appreciate the genius of Freddd after a few hundred posts! No one (almost no one)is actually trying an actual protocol. They are simply fretting and spinning their wheels worrying about OVERMETHYLATION. Freddd would call this actual METYLATION! ie, the thing you actually want!...... Especially the COMT++ people and the people worried that they are COMT++. It is so sad. AS Freddd says: "Everyday you wait , you get more damage." The gene mutation site is populated by several "professional" health care providers "(think vested interest)that are constantly telling the hoi poloi that the "subject of methylation" is too complicated for anyone to possibly do by themselves. I would love Fred to go on these sites and light them up! I do a have dog in this hunt , because I followed Fredd's protocol (at about 1/30th his dose!) and found almost immediate relief. Luckily, I started Freddd's protocol BEFORE I had the 23 and me results. Lo a behold I"M COMT++. And looky-looky I can take methyl b12! Had I not known of Freddd and instead started at FB mthfr gene mutations, I'd have been frighted to start my "cure". Tragedy averted. Long live Freddd and long live his protocol!
If only it were that simple ...
and I speak as one who takes methyl supplements with no problems. :)

Listening to your own body reactions instead of jumping head first into a protocol is probably a good idea. Even aspirine doesn't work for everyone. And aspirine is for acute symptoms not chronic, complex, multi-factorial, long standing health issues. :(

Let's not be silly.
 

shah78

Senior Member
Messages
168
Location
st pete , florida
But ,IT WAS THAT SIMPLE! ..... Suffer for 57 years, follow Freddd's protocol (at 1/30 his dosages!),derive a modest "brightening" of almost all aspects of life. Doesn't sound silly to me! Sounds like a f*cking miracle! :)
 

PeterPositive

Senior Member
Messages
1,426
But ,IT WAS THAT SIMPLE! ..... Suffer for 57 years, follow Freddd's protocol (at 1/30 his dosages!),derive a modest "brightening" of almost all aspects of life. Doesn't sound silly to me! Sounds like a f*cking miracle! :)
I am very happy for you. I too have have seen improvements from a methylation protocol.

I do not agree with your previous comment because it's a misrepresentation of why a significant amount of people can't use Freddd's protocol or don't fully heal with it.

There's a massive amount of variables besides methylation in the healing process. You make it sound as if it was a silver bullet for each and every issue. I find it silly.

Talk to any methylation specialist, people who have seen hundreds of patients, and they will tell you how many other issues need to be addressed.

Cheers