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Is Yasko's Nutrigenomics Panel enough?

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I've been to that site a few times, I think I'm getting it now. Basically you have to sign up for a year, get DNA tested, they keep your results in a database, right? Unfortunaely I have not found what the results look like, how can they be used to hep us get healthier? Does this $207 kit include the same genes Dr. Yasko checks? Her test is $495 but I presume kept private. Nanonug if you took this 23and me test how did it help you in understanding your healh situation?

I would say: save your money! In my opinion, 23andme is a way better deal.

For the methylation protocol, taking Pure Encapsulations Multi t/d will give you pretty much what you need. You may add additional B12 or methylfolate if need arises.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Basically you have to sign up for a year, get DNA tested, they keep your results in a database, right?

I believe you can pay upfront the whole amount. They keep your account active for as long as you pay. You can also download the data to your computer. To be honest with you, I didn't bother to learn about what they do with the data in case one closes the account.

Unfortunaely I have not found what the results look like

If you sign up for a free account, I think you have the option of test driving their interface with "fake" data.

how can they be used to hep us get healthier?

In my case, I wanted to know if I had an obvious genetic screw up.

Does this $207 kit include the same genes Dr. Yasko checks?

I think it includes like 40 out of 50. However, in total, 23andme includes almost a million while Yasko's is still the same 50. This very limited number of genes makes the Yasko test useless in my opinion.

Nanonug if you took this 23and me test how did it help you in understanding your healh situation?

It basically has shown me that I do not have an obvious genetic screw up to blame.
 
Messages
52
the thing is I am so sick it is hard to tell right now what is working. I have to admit i am doing a few things at once, but seem to tolerate all at the low, slow detox i am doing.

i guess the test would tell me along the pathway which b's and co factors would help me. like is freddds best(although i have problems with a lot of flavorings, dextose, etc) and if hydro or methy or better b12 for me.

the pure encap isn't a multi
so if my methyl b12 is 800mcg
and methyl folate is 800mcg

if i added another b12 the hydro for instance, how much would i take of it?
and would i also add the methyl mate B, if i already have the folate?
what about the folinic acid?

i just need to get a plan

thank you so much
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
the pure encap isn't a multi

The Multi t/d? It is a multi for sure. I take it myself...

so if my methyl b12 is 800mcg
and methyl folate is 800mcg
if i added another b12 the hydro for instance, how much would i take of it?
and would i also add the methyl mate B, if i already have the folate?

The only way to know for sure what you really need is testing. There is no universal rule that works for everyone.

what about the folinic acid?

You most probably don't need it.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Nanonug, sorry if I asked this already but I presume you were able to interpret the results from 23andme? Also did they include MTHFR in their gene test?
 

greenshots

Senior Member
Messages
399
Location
California
Good luck with 23&me's "interpretation" of your test results, its a joke! They also don't include about 10-12 of the more important genes Yasko tests for like NOS, SHMT, ACE, ACAT, and more. I went the 23&me route first and wasted 18 mos of my time when I knew damn well I shoulda gotten the yasko test just like I did for my kids. I've had all of the tests everyone here always talks about and the only one that ended up being worth anything was the Yasko test.

In my opinion, going the other way means spending months or years of your time trying to decipher things even while alotta people behave as if they've got it all figured out somehow but then you really don't even know if you're treating yourself the right way. Everyone here, aside from maybe Dr. vank and maybe Freddd are just guessing and that may be okay for some with milder problems but if you're really sicker then its a big waste. I sure don't have all the answers either but in the end, if a couple hundred dollars is going to give me more info, then thats no waste.

Best of luck with whatever you decide to do.
Angela

Nanonug, sorry if I asked this already but I presume you were able to interpret the results from 23andme? Also did they include MTHFR in their gene test?
 

greenshots

Senior Member
Messages
399
Location
California
maybe people are split but I'd like to see how many have actually had ALL of the tests done asI have, not just 23&me to compare it to.



Seems people are split down the middle. Anyone know how much these two offereings cost? I spoke with Health Diagnostics last week but forgot to ask or write it down if I did ask, dont remember.

I also think Valentine said they were working on a web presence but in infancy. She offered to send brochure to my Dr.
 

greenshots

Senior Member
Messages
399
Location
California
I got the most for my money for me, my 3 kids, my husband, and my best friend's family with the Yasko SNP panel along with maybe a MAP test, which is a metabolic profile from Genova. The two tests cost $700 and gave me the best snapshot of what to go after. Unlike many here, I got VERY lucky and found a very good practitioner (after failing with the so called best of the best!) who gets nutrigenomics inside and out. I followed her plan for my kids (2/3 fully recovered from autism) and me. I had severe CFS and was bedridden for well over a year and highly deconditioned. I used to be an ICU nurse but had to leave to do all this stuff for my kids and then I crashed. I don't know what I would have done if I hadn't have found my doctor, she saved our lives. I have a 30+ biomed group and she treats all of us so I've seen everything from MS, Lou Gerig's, and Parkinson's to autism, CFS, and even a couple of cancer cases (she uses Gerson, Blaylock, & Bugwig) fully recover.

To me, doing it on your own is like getting to your vacation spot across country without a map or GPS, you have no idea where to go or what to do. But I realize not everyone has been as lucky in finding a good doc so they feel stuck or like they can figure it out in their own. But they're guessing and for me, I don't have years to guess. Plus, what if you treat a gene that shouldn't be and develop another problem? Which ones do you go after? Which ones do you let be? She understands this stuff, at least as best as it can be right now., More science is sure to come but I know she studies all of that. Like Dr. Vank, she has a passion for it. I just wanted to start living again and I'm 75% now so I finally am! To me, the proof is in the pudding.

Angela

go to her body chemistry page on the following link and you'll see more of what I mean

www.autismnti.com



Which tests do you feel helped you understand what is going on and got you on a path to healing?
 

priya

permanently dislabeled
Messages
28
i've been doing yasko protocol for 11 months now. i have 17 of the 30 mutations that she tests for, and from my NA/K imalance, likely an ACE deletion, too.... i have tried for years to work on the gut in a big way, but couldn't manage the detox until my methylation was working better. every heavy ant-microbial/anti-parastic i took caused me complete incapactitation and left me unable to move, swallow, speak, etc... now i'm handling all these things just fine. still bed-ridden 100%, but my friends say i'm improving.
 
Messages
52
Good luck with 23&me's "interpretation" of your test results, its a joke! They also don't include about 10-12 of the more important genes Yasko tests for like NOS, SHMT, ACE, ACAT, and more. I went the 23&me route first and wasted 18 mos of my time when I knew damn well I shoulda gotten the yasko test just like I did for my kids. I've had all of the tests everyone here always talks about and the only one that ended up being worth anything was the Yasko test.

In my opinion, going the other way means spending months or years of your time trying to decipher things even while alotta people behave as if they've got it all figured out somehow but then you really don't even know if you're treating yourself the right way. Everyone here, aside from maybe Dr. vank and maybe Freddd are just guessing and that may be okay for some with milder problems but if you're really sicker then its a big waste. I sure don't have all the answers either but in the end, if a couple hundred dollars is going to give me more info, then thats no waste.

Best of luck with whatever you decide to do.
Angela

There are so many inaccuracies in your post, I felt the need to log in here and reply to clear some of this up.

Yasko only picks a few SNP's from various genes and that's it. Meanwhile there are hundreds of SNP's located on these same genes that 23andme does test for. It is true that 23andme does not test for all of the SNP's on Yasko's test, but not the amounts you are saying. There are only 5 SNP's (not 10-15 genes...) that 23andme is not testing for at the current time that Yasko is still testing for.

She has been changing her test over the past few years, so people who got their test done a few years ago will notice when comparing to new reports that the ACE deletion, CBS L136L, and SUOX A628G are no longer being tested, but she has added CBS N212N.

These are the SNP's 23andme does not test for at the current time that Yasko tests:
MTRR S257T
NOS3 D298E
SUOX S370S
VDR Fok I
BHMT-01

Remember these are just SNP's, not entire genes. If you look up NOS1, NOS2, NOS3, SHMT1, SUOX, VDR, and ACE etc in your raw data browser, you'll find WAY more results than Yasko's test will ever be able to cover. Just a quick check on the VDR gene there are 92 SNP's tested, on the ACAT1 there are 17 SNP's, ACE there are 53 tested and NOS1, NOS2 and NOS3 combined 163 SNP's.

I'm sorry you weren't happy with your 23andme results, but just be careful with spreading false information. It really sounds like you need help in understanding how to find your results on the 23andme site and I am more than happy to help you do this!! :) I created this google spreadsheet so others can easily find their Yasko results when doing the 23andme option. For me the 23andme option was a no brainer because of the other amazing things it tests for and it costs less. Another thing to consider, as Yasko adds new SNP's to her testing, those who got it done through her lab previously will have to shell out even more $$ to get the new SNP's tested.Those on the 23andme platform have a better chance of already having those new SNP's covered under the cheaper price.
 

greenshots

Senior Member
Messages
399
Location
California
Actually, when I had my genes tested with 23&me just last fall this is exactly what they tested for! I even called and wrote the company and they comfirmed this so perhaps they have changed things since or prior to my test but thats the facts as I know them and confirmed by 23&me.

Also, I used to think like you did. I scoured journals and pubmed and skimmed hundreds, if not thousands of journal articles thinking that I would "catch" something that scientists hadn't. I would ask Dr. Yasko what about this gene or what about that gene? She always answered my questions patiently but had always researched that area and including it on the panel hadn't hanged the outomes whatsoever. In other words, maybe they were bad glutathione enzymes or transulfuration issues but having the test didn't change much since diet and the methylation support changed outcomes in the end. Look at Dr. Vank's data for instance. He found that even with the CBS, many of the levels (SAH/SAM ratio) normalized, only it took longer. Now he didn't have a million dollars to go on and study how this CBS stuff affects the Urea and transulfuration cycles so we'll never be sure Yasko is right about the other stuff, even though he found she was right up to that point. But maybe people won't need a CBS RNA unless they have a double mutation (me) and the rest can skate by with basic supports, whose to say. this field is so new that we don't know what we don't know. Changing one gene that evolved a certain way could cause cancer down the road in another area. So we could be exchanging one problem now for another down the line. Its all guesswork and speculation unless you have thousands of patients you've tried it out on and followed them for 50 years.

It embarassed me later to realize that my constant questioning was much like my kid's endless questions about why my husband and I do things a certain way. I have one little bugger whose the worst about this and always seems to have a "better" answer, even though he has no clue about it at all. I'd ask these questions, thinking she'd say she didn't know or wouldn't have a good answer but she always did. She's LOOKING for more key genes and will add any that change the outcome. She was always ten paces ahead and I quickly realized I was like my children, presuming ignorance in those around me when they had already been to the moon and back.

Now don't get me wrong here, I actually dn't care much for Yasko or her group. I think they're all a bunch of snooty, scientific elitists and it annoys me to no end how she presumes at each conference that we're all groupies following her around the world when she says stuff like "I'm sure you remember from my lecture in Boston" or some such nonsense, when NO ONE has a clue about her Boston conf since were not all independent millionaires who can chase her from one talk to the next and its not on DVD or podcast yet! But she', along with Pall Stover, James, Vank, and others have been at this for the past decade and believe me, You or I aren't going to give them that sudden revelation they needed to solve the entire riddle because we skimmed a pub med site. In other words, have a little faith (?sense) to know that they are ahead of the game here and have already studied and disregarded many of the things you and I are still fumbling around with and even more clueless about. I learned how grossly unaware I was of all of these things and then some! It was not one of my better moments of realization.

Does this mean I blindly trust her or anyone else? Heck No! I use my doctor for that and this is why I went from bedridden to 75%. And, outta 35 original group members, my biomed group now has 30 people using a combination approach and who are at least 50%, or more, better. Outta the 5 others, 1 left due to cancer, another left to care for a parent with a stroke, and 2 didn't even want to have to change their diets and the last claims to have tried the "full protocol" but hasn't been on even one RNA and was taking 15 pf the stage one supplements. HA! That sure isn't full support but she swears by it so there you go. So at the end of the day, how many people can say that they actively know of a group of 30/35 that are halfway there?

It took me a while to stop asking those questions as if I was somehow aware they were missing the key to life based on this or that paper. But when I'm curious about a new gene or one of the thousands of 23&me genes, I still research it. But much to my satisfaction, I've found that we're already going after this or that enzyme by going after this or that methylation problem. My doc's suggestion to boost cruciferous veggies higher and higher along with transulfuration supplements mitigates the five 23&me genes that I have that may lead to liver cancer. No point in Yasko including that on her panel and hiking up the price another $200-$300 bucks.

Calico, if you are recovered, and I hope you are, please share which of these 23&me genes led to this discovery. I'm always excited to find new avenues to get that last 20% or help others. But if this is based solely on a feeling you have about having more genes to look at, that's really not helpful, at least for me, in the long term. Its another one of those "In Theory" remarks that rarely turns into anything in reality. With three kids, I just don't have time to be sick despite the theories so I'm going to have to stick to what I can see with my eyes and hear with my ears, the sounds and sights of my friends, family, neighbors and biomed members getting better and better.

I wish you the best in your path to healing!
Angela
 

greenshots

Senior Member
Messages
399
Location
California
Also, I would like to know how you can confirm with 100 accuracy what the BHMT 1, 2, 4, & 8 are in correlation to 23&Me's rs numbers? I do believe someone went through and maybe made some educated guesses that everyone is now using as hard fact. But I don't like to rely on guesses so if your absolutely certain of these correlations, please cite where this data is plainly stated. I would love to have them for my mother.

Regrettably, I've already seen that spreadsheet and some of the rs #'s are either obsolete or inaccurate. When I see Dr. Vank support these, I will jump in 100% but I haven't seen him say one word about the results being on the nose either and I think he probably would if they were right. But maybe I'm wrong and someone has him discussing this somewhere here. God knows I've searched my fingers to the bone looking and come up empty.
 

richvank

Senior Member
Messages
2,732
Hi, Angela.

I appreciate the high opinion you have expressed about my abilities. I have to be honest with you, though, and admit that there is a whole lot that I don't know about many of the topics that are discussed on these forums. One area that I don't know a lot about is the details of translating the genomic polymorphisms, and interpreting what all of them mean. While it's true that I had something to do with getting your doc interested in these things, I think she is way ahead of me now in her understanding of how to apply them, and I think you are very fortunate to be seeing her. I do think that there is a lot of potential in studying the genomics, and I'm glad that others here are doing so, too.

I also want to say that I gain a great deal by participating in these forums and the other ME/CFS internet groups as well. A lot of what I have been able to learn has come from people here and in the other groups over the years. Some of it has come from papers or articles people have posted, or from their own thoughts, and some has come from studying in an effort to answer questions raised by people.

I realize that not everyone in these forums and groups has a scientific or biomedical background, but personal experience of people who actually have the disorder is also very helpful to me, in keeping my research relevant to the real world of those who have ME/CFS. After all, it's considered a syndrome, which is composed of symptoms, and who has the symptoms? I don't, and many of the clinicians and other researchers don't, either. I prefer to get information about them first-hand.

Like everyone else, one of my big limits is time. I would like to get a grasp on all the relevant topics, but I have to choose my battles and try to be strategic, continuing to focus on the goal of completely cracking ME/CFS. At this point, in my own mind at least (and I know that there are many in the ME/CFS community who might not agree) I believe that I understand the core of the pathophysiology of ME/CFS. The main parts that I think I don't have a good grip on are the etiologies, i.e. the root causes, and also the things that accumulate because of dysfunction of the immune and detox systems after the onset of the illness, and how these parts fit together with the part I think I understand. These are the areas I think I most need to focus on now, so I'm planning to try to get more up to speed on the immune system and the infectious diseases we see in PWMEs, as well as the toxins and detox system.

The work with GcMAF is very promising. The Rituximab results are intriguing. There is more detailed analysis of cytokines now. There is better testing for Lyme disease. The gut microbiome research has become active. The work on biotoxins has become pretty detailed and advanced. I would like to be able to pull all of this together. I think that understanding these sorts of topics is what we need to bring more people to complete recovery, which we are still not able to do today.

Thanks again for your confidence in me!

Best regards,

Rich
 
Messages
52
Sorry Greenshots, but there are just so many inaccuracies and assumptions in your posts, so I have to question everything you are writing now. I don't quite understand how getting the 23andme testing done is questioning Yasko or in some way an affront to you? If you don't want to use your 23andme results to their highest potential that is fine and I'm not twisting people's arms to get this test done. I've been wanting to get this test done for years before I even knew who Yasko was. They test for a lot of other important things besides the more fluffy health traits. (carrier status, P450 liver pathways, other random SNP's of importance...). Have you run your data through Promethease? How about these 3rd party tools? Are you at all interested in genealogy?

It's unfortunate you do not know how to navigate the website to get the most of your data besides what is listed in the health reports on the website. It is admittedly a bit confusing at first and it takes time understanding where to even start looking.

I think it's great Yasko is looking for more genes. Whenever she finds them there's a good chance I'll already have the SNP's covered by 23andme. She just recently removed a few SNP's and added CBS N212N and I was glad to see 23andme had already been reporting on that one. It's a shame those who got tested with Yasko won't know what their results are for this one unless they spend more money. It sounds like those with 23andme data may be in a better position than someone who just got the 30 SNP's from Yasko herself. I also felt the cost is a bit much considering how little you get from Yasko, but that's just me. I'm a very broke sick person. lol

I don't think there is one gene out there that is the answer at all. That seems pretty clear considering how we all respond to different treatments and how our symptoms are different too. I for one do not have CFS, but I do have severe POTS or OI. I do believe some people are going to find out they have a rare variant in their 23andme data that may be causing A LOT of issues though. I found out I have a lot mutations on my P450 liver pathways. I also found out I carry an allele where I cannot take certain types of anti-epileptic medications without suffering from severe side effects. These are all things Yasko are not testing for at all.

Unfortunately you have made a lot of assumptions of me based upon a few posts here. The reason why I made the spreadsheet was because I was confused in how to translate the data into "Yasko speak". The reason for getting the test was not for the methylation SNP's at all. That was just a nice added bonus. Yasko uses a very weird notation in order to allow people to see and discuss their results and I wanted everyone who got 23andme results to be able to participate in the methylation discussions. Surely allowing more people to use the data available out there to make themselves better with Yasko's protocol is only a good thing.

I think it's a shame that you do not want people to research further into their own illnesses. Surely people are free to do whatever they like to do and it is our unique input and experiences that make these forums what they are. We can talk theories all day, but I want to know what people are actually getting out of them.

Also, I would like to know how you can confirm with 100 accuracy what the BHMT 1, 2, 4, & 8 are in correlation to 23&Me's rs numbers? I do believe someone went through and maybe made some educated guesses that everyone is now using as hard fact. But I don't like to rely on guesses so if your absolutely certain of these correlations, please cite where this data is plainly stated. I would love to have them for my mother.

Regrettably, I've already seen that spreadsheet and some of the rs #'s are either obsolete or inaccurate. When I see Dr. Vank support these, I will jump in 100% but I haven't seen him say one word about the results being on the nose either and I think he probably would if they were right. But maybe I'm wrong and someone has him discussing this somewhere here. God knows I've searched my fingers to the bone looking and come up empty.

If you got your results done last fall and used a spreadsheet back then, then you were using another person's spreadsheet. I had seen that one and found it very hard to follow, so I created my own just last month. Can you point out specifically which RS ID's are "obsolete or inaccurate" because I want the accuracy of this to be 100%. I looked them up myself and for most I have the links to the sources where the rs Id's were listed in studies.

Are your results for BHMT from 23andme different from what Yasko has reported? Is there some other reason you are questioning their accuracy? I have heard from others who got both done that everything matched up perfectly for them. However if this is not the case for you, then putting inaccurate info out there is no my intent at all and that is why I have listed my email address directly on the spreadsheet for people to contact me.
 

greenshots

Senior Member
Messages
399
Location
California
You completely misunderstood what I said so not sure I can clarify it further now that you're clearly feeling defensive. I was not saying, in ANY stretch of the imagination, that in having the 23&me test done that it challenges anyone on anything. I'm merely pointing out that when you make comments about how the Yasko panel doesn't take into account many other genes, its sorta arm chair quarter backing without having the education or background to do so. I checked those spreadsheet rs #s with 23&me AND my doc and unless you have some inside track as to what Yasko uses for her rs #s for things like the BHMT for instance, you cannot assert with 100% accuracy that they translate to 23&me. Especially when they are not using the established standard. So, I would have to turn the tables on this one and say that everything you've said falls under question. Especially since my doc said that many on that sheet are obsolete and don't match what Yasko uses. I'd really be careful about what you claim as fact because its not fair to those using it as the gospel to recover. I have used Prometheus as well and again, they don't use the same rs #s Yasko uses so you either know someone on the inside track over there or your still making guestimates.

You also admit to being a very broken person so I find it odd that you adamantly stick to Your claims despite this while I, along with 30 people in my biomed group, are on the road to recovery? Perhaps it is a shame that I don't properly know how to navigate the entire 23&me site, as you've implied, spending 100's of hours in the process but you see, I prefer spending that time on actually recovering.

I don't have a problem with anyone using 23&me as an adjunct but some seem to feel it is the end all and that spending an infinite amount of time reading about intriguing, yet in the end, unhelpful data is not exactly my idea of getting anywhere, its merely interesting. I don't know about you, but we're not all officially disabled and allowed to collect FundsI so some of us have to get on the ball rather than researching intersting topics for the next decade. I don't begrudge anyone their Disability payments either, I congratulate you! Ifanyone understands how impossible it is to work, its someone like me who was bedridden for over a year. But you see, as intruguing as geneology may be, I aim to get better and better. I'm certainly not here studying for my geneology doctorate. I'm glad you have the time to do so but it also just might be better spent on more targeted treatments. Like your potential CBS and /or maybe ACE defect, for starters. This is commonly seen with POTS. I know mine resolved, along with many others by using such "limited" tactics. Yet I do realize that there are other factors involved. I just find it perplexing that the sickest people on this site, the ones who haven't shown much evidence of recovery, are the most tenacious regarding 23&me? Seems odd.

We agree on one thing at least, no one gene is responsible for everything. However, if you truly understand methylation, you would know that you can have a billion genes and certain biochemical areas are in charge of turning them on or off. I've personally found this to be true as have a minimum of 50 of my biomed group, friends, family, and even neighbors. So I guess my major flaw is that I like to see results. I guess we can't all be perfect.

Angela

Sorry Greenshots, but there are just so many inaccuracies and assumptions in your posts, so I have to question everything you are writing now. I don't quite understand how getting the 23andme testing done is questioning Yasko or in some way an affront to you? If you don't want to use your 23andme results to their highest potential that is fine and I'm not twisting people's arms to get this test done. I've been wanting to get this test done for years before I even knew who Yasko was. They test for a lot of other important things besides the more fluffy health traits. (carrier status, P450 liver pathways, other random SNP's of importance...). Have you run your data through Promethease? How about these 3rd party tools? Are you at all interested in genealogy?

It's unfortunate you do not know how to navigate the website to get the most of your data besides what is listed in the health reports on the website. It is admittedly a bit confusing at first and it takes time understanding where to even start looking.

I think it's great Yasko is looking for more genes. Whenever she finds them there's a good chance I'll already have the SNP's covered by 23andme. She just recently removed a few SNP's and added CBS N212N and I was glad to see 23andme had already been reporting on that one. It's a shame those who got tested with Yasko won't know what their results are for this one unless they spend more money. It sounds like those with 23andme data may be in a better position than someone who just got the 30 SNP's from Yasko herself. I also felt the cost is a bit much considering how little you get from Yasko, but that's just me. I'm a very broke sick person. lol

I don't think there is one gene out there that is the answer at all. That seems pretty clear considering how we all respond to different treatments and how our symptoms are different too. I for one do not have CFS, but I do have severe POTS or OI. I do believe some people are going to find out they have a rare variant in their 23andme data that may be causing A LOT of issues though. I found out I have a lot mutations on my P450 liver pathways. I also found out I carry an allele where I cannot take certain types of anti-epileptic medications without suffering from severe side effects. These are all things Yasko are not testing for at all.

Unfortunately you have made a lot of assumptions of me based upon a few posts here. The reason why I made the spreadsheet was because I was confused in how to translate the data into "Yasko speak". The reason for getting the test was not for the methylation SNP's at all. That was just a nice added bonus. Yasko uses a very weird notation in order to allow people to see and discuss their results and I wanted everyone who got 23andme results to be able to participate in the methylation discussions. Surely allowing more people to use the data available out there to make themselves better with Yasko's protocol is only a good thing.

I think it's a shame that you do not want people to research further into their own illnesses. Surely people are free to do whatever they like to do and it is our unique input and experiences that make these forums what they are. We can talk theories all day, but I want to know what people are actually getting out of them.

greenshots said: ↑
Also, I would like to know how you can confirm with 100 accuracy what the BHMT 1, 2, 4, & 8 are in correlation to 23&Me's rs numbers? I do believe someone went through and maybe made some educated guesses that everyone is now using as hard fact. But I don't like to rely on guesses so if your absolutely certain of these correlations, please cite where this data is plainly stated. I would love to have them for my mother.

Regrettably, I've already seen that spreadsheet and some of the rs #'s are either obsolete or inaccurate. When I see Dr. Vank support these, I will jump in 100% but I haven't seen him say one word about the results being on the nose either and I think he probably would if they were right. But maybe I'm wrong and someone has him discussing this somewhere here. God knows I've searched my fingers to the bone looking and come up empty.
If you got your results done last fall and used a spreadsheet back then, then you were using another person's spreadsheet. I had seen that one and found it very hard to follow, so I created my own just last month. Can you point out specifically which RS ID's are "obsolete or inaccurate" because I want the accuracy of this to be 100%. I looked them up myself and for most I have the links to the sources where the rs Id's were listed in studies.

Are your results for BHMT from 23andme different from what Yasko has reported? Is there some other reason you are questioning their accuracy? I have heard from others who got both done that everything matched up perfectly for them. However if this is not the case for you, then putting inaccurate info out there is no my intent at all and that is why I have listed my email address directly on the spreadsheet for people to contact me.
 

greenshots

Senior Member
Messages
399
Location
California
Its true, I do have a high opinion of you but I don't think its as undeserved as you make it out to be. If you know my doc as well as I think you do, you know she is very well known for speaking her mind. I've heard her directly compliment maybe a handful of specialists in the 7 years I've known her (I started with her as a patient in Sutter, she treated my adult cousin, a cop who developed PANDAS) and you are one of those very few, which speaks volumes!

I appreciate your honesty in admitting you don't know everything, Dr. Vank, a rare thing these days. She does this as well, which aside from her being incredibly bright, is the main reason I trust her so much. When she doesn't know, she doesn't pretend or BS her way outta it as 90% of docs do. But as you say, she does know alott and I've found that she will do her damndest to figure it out. For instance, she finally figured out how to solve my particular problem that I know she discussed with you (she asked my permission). Now that is a thing of the past and its all based on the homocysteine-dopamine-glutamate pathway. Eureka, 15 years of that monkey on my back and its gone. And now, I'm almost finished with most of the little monkeys!

However, I think you underestimate yourself, too. I also suspect that if you could find an accurate tranlsation, you would use it. I asked her if she knew of anyone who could do that and she said if Rich hasn't done it, I fear no one can. That's not to undervalue others experience on this site. I just prefer a somewhat educational background over those who study it as a hobby or sideline and then state their findings as fact. You don't have to have a PhD in nutrigenomics to see that it encompasses many variables but if you only study one piece of that field and then claim that the others who do are missing too many pieces, well, that smacks of the worst kind of ignorance and presumption. That sorta logic makes me nervous and I watched doctors unwittingly kill patients for years using this sort of "deductive reasoning" when guess what? 1+1 didn't always = 2 because the human body was just too complex and there were way too many variables to account for in treating them. Whereas I've yet to find someone like Yasko, a bit of an elitist maybe, but she has zeroed in on the environment/epi genetic + genes + infectious disease issues and individualized experiences thrown in for good measure. Now I'm sure she doesn't have the key to everything this early in the game but for those of us who''ve tried it, salvation seems to be at hand.

Though it is alotta work! I think something between what you and yasko does is in order since we know that many of the super sensitive people can't hit methylation that hard but so many of us don't have the 2-3 years to go through zillions of supplements like Yasko wants either. I think my doc seems to have finally hit a nice middle ground though and your right that I was under a lucky star to find her! I'm also thankful for your "brilliance" as she refers to and she also mentions you laid the framework for this years ago. You pioneers are a welcome group for sure!

Thank you,
Angela


Hi, Angela.

I appreciate the high opinion you have expressed about my abilities. I have to be honest with you, though, and admit that there is a whole lot that I don't know about many of the topics that are discussed on these forums. One area that I don't know a lot about is the details of translating the genomic polymorphisms, and interpreting what all of them mean. While it's true that I had something to do with getting your doc interested in these things, I think she is way ahead of me now in her understanding of how to apply them, and I think you are very fortunate to be seeing her. I do think that there is a lot of potential in studying the genomics, and I'm glad that others here are doing so, too.

I also want to say that I gain a great deal by participating in these forums and the other ME/CFS internet groups as well. A lot of what I have been able to learn has come from people here and in the other groups over the years. Some of it has come from papers or articles people have posted, or from their own thoughts, and some has come from studying in an effort to answer questions raised by people.

I realize that not everyone in these forums and groups has a scientific or biomedical background, but personal experience of people who actually have the disorder is also very helpful to me, in keeping my research relevant to the real world of those who have ME/CFS. After all, it's considered a syndrome, which is composed of symptoms, and who has the symptoms? I don't, and many of the clinicians and other researchers don't, either. I prefer to get information about them first-hand.

Like everyone else, one of my big limits is time. I would like to get a grasp on all the relevant topics, but I have to choose my battles and try to be strategic, continuing to focus on the goal of completely cracking ME/CFS. At this point, in my own mind at least (and I know that there are many in the ME/CFS community who might not agree) I believe that I understand the core of the pathophysiology of ME/CFS. The main parts that I think I don't have a good grip on are the etiologies, i.e. the root causes, and also the things that accumulate because of dysfunction of the immune and detox systems after the onset of the illness, and how these parts fit together with the part I think I understand. These are the areas I think I most need to focus on now, so I'm planning to try to get more up to speed on the immune system and the infectious diseases we see in PWMEs, as well as the toxins and detox system.

The work with GcMAF is very promising. The Rituximab results are intriguing. There is more detailed analysis of cytokines now. There is better testing for Lyme disease. The gut microbiome research has become active. The work on biotoxins has become pretty detailed and advanced. I would like to be able to pull all of this together. I think that understanding these sorts of topics is what we need to bring more people to complete recovery, which we are still not able to do today.

Thanks again for your confidence in me!

Best regards,

Rich
 
Messages
52
Wow I feel really bad for you. You like attacking those of us just trying to help out. I'm only trying to help others get as much info from their 23andme data as possible. People are going to get tested through 23andme because it is cheaper than Yasko. That's just the truth of it. As I make my own discoveries, I figure why not let others see what I've found out about my own results. I don't see any harm in it at all. I'm not certain of the accuracy of the BHMT Rs Id's. I found the info listed somewhere else online. If your results did not match up, I'd love to see which ones specifically.

Genealogy is actually quite fascinating once you take a look into it. I found out I have an ancient East Asian ancestor that I wouldn't have ever known about. I also love to sing, work in my garden, make youtube videos and write btw. Sure I am sick, but I'm not bedbound or housebound at all. Lately I've had some of my best days in more than 8 years, so I'm pretty excited about it! I've been standing and not having POTS heart rates. It's not all the time, but I'm seeing this happen more and more.

I'm not on disability, so I'm not really sure why you're trying to attack me in that way. Many people within the chronic illness community are though and I don't judge them. Some people do not have spouses to lean on or in my situation, my husband is actually chronically ill too. It makes things pretty tough, but we are making due.

I wish you the best with your health. Whatever is working for you, well that is great. Keep doing it!
 

greenshots

Senior Member
Messages
399
Location
California
I apologize, I don't know how to speak any plainer about not having a problem with you, specifically, or 23& me. I simply don't like anyone trying to insist that I've listed a ton of inaccuracies when they can't even know for certain what the genes all translate to. Calico, you responded to me first and made those comments, not the other way around. Maybe this is some kind of reverse psychology, I don't know. I suppose much gets lost in internet communications since body language would tell you so many things. I'm sorry you don't like to be challenged when you comment on someone else's post but I felt it was warranted. End of story. No attack intended. In any event, I wish you all the best with your pathway to recovery and aside from insisting you've got it all worked out, I think what you tried to do was an honorable, kind thing. Others have tried as well and it didn't seem to work out so well in the end on those. I just hope for everyone's sake, this time, they are correct. If so, maybe you will reach your health goals afterall.

Angela