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FADS1 and FADS2 SNPs?

ppodhajski

Senior Member
Messages
243
Location
Chapel Hill, NC
My husband started having severe D - no probiotics (boulardii, bifium, LAB, or charcoal would help with it until I thought it was the zinc supplementation. The D stopped in the same day I gave him copper.

I found a post I wrote a while ago about my flax intolerance:
http://forums.phoenixrising.me/inde...icum-a-game-changer.37324/page-18#post-599307
@ppodhajski what do you think about my hypothesis?

Well, that makes TWO cases cleared up in a day. The copper is interesting because it oxidizes serotonin
http://www.ncbi.nlm.nih.gov/pubmed/17663749
These results indicate that copper structurally alters serotonin and this process may play a role in copper related neurodegenerative diseases.
http://www.ncbi.nlm.nih.gov/pubmed/12423649

Which suggest serotonin is at play again in IBS-D.

Vitamin K carboxylyzes glutamate. Glutamate is excitatory and might effect serotonin in some way. So if you do not have vitamin K maybe there is more glutamate which means an already serotonin sensitive person will get worse.
http://www.nature.com/npp/journal/v21/n2s/abs/1395430a.html

I never looked at Vitamin K and it is one of the cofactor vitamins. I think I need to add that one on my list. I like your theory.
 

ppodhajski

Senior Member
Messages
243
Location
Chapel Hill, NC
How did you specifically cure yourself of ME @ppodhajski That is important to many here.


I looked at my genetics that relate to how we metabolize micro and macro nutrients. (Nutritional Genomics)

Most of the genes I look at are in this pathway map I made (Attached to this Post). There are some missing, like for fat metabolism, but there are a lot of those already out there.

I did not look to cure my disease, I only look at fixing one symptom at a time since most diseases are just clusters of symptoms.

In the genes I had that I thought I needed to speed up I looked up the vitamin cofactor for that enzyme and I took it and saw what happened. I also modified my diet based on my genetics.

I also looked up where in the body the gene is expressed and it if matched where some symptoms I had were that made it more important.
So, for example, MAOA is big in the digestive tract, adipose tissue, bladder, and the thyroid. (IBS, inflammation, IC, Low TSH)
http://www.proteinatlas.org/ENSG00000189221-MAOA/tissue

So for me:
MAOA MAOB = Riboflavin and Low Amine and low protein.
COMT = Magnesium and Low Amine and low protein.
GPX=Selenium
SOD2 = High Manganese foods
FADS = B6 and Low Fat
BTD = Biotin
GCH1 = Vitamin C
MTRR = Riboflavin

There was trial and error and I found that after a while some things changed, like my need for supplemental magnesium was erased, which makes sense.

FMN, a specific form of riboflavin was instrumental for me and responsible for getting rid of some forms of my chronic FM pain. The Omega 6 gives me lower back pain and the fatigue.

I only have one other persons genetics that has ME. If I had more I might be able to make suggestions so I am open to working on someones genome if they want to contribute it. It might be good to have a thread ith just me and someone else working through it so people can see how I think.

For the person I have, she is on this board but I lost her email and forgot her screen name. I think her MTHFR genes play a role for her where my problem is with GCH1. But our GPX4, CBS, MAOA, MAOB, BTD, and COMT genes are similar. In the people who do not have ME.

I want to say that there are secondary genes at play here as well, like TNF. But since there is nothing I can do about those I ignore them. But by correcting the nutritional side those genes react less. So we can see, some one with an ME SNPs but has good TNF genes might not have the same issues we have, but they will have issues.

So you see this fix is not simple and it will be very personal for each person, but there will be enough similarities with people suffering the same disorders that it will become easier.
 

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Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
How did you specifically cure yourself of ME @ppodhajski That is important to many here.
I looked at my genetics that relate to how we metabolize micro and macro nutrients. (Nutritional Genomics)
So I guess you are assuming that there are no pathogens involved? This may be true for you, but it is not for many of us.
 

ppodhajski

Senior Member
Messages
243
Location
Chapel Hill, NC
So I guess you are assuming that there are no pathogens involved? This may be true for you, but it is not for many of us.

I am not making that assumption. I will that we may be more succeptable to pathogens because these Genes also control our immune response. It might be at an infection can cause a dramatic loss in certain cofactors. I do not think it s only genetic or a pathogen, I think it's a combination of both.
 

Valentijn

Senior Member
Messages
15,786
Two things, after 15 years on disability is is hard to find work, especially in this economy. Second, I wanted to be sure I was stable. And to be cured does not mean the legacy of my illness was erased.
So you haven't been "cured" for long, I take it? That should be a sign that you should similarly exercise caution in proclaiming here that you have cured yourself and can cure others. Temporary remissions and the placebo effect are not uncommon factors.

And if your quote from April 22 is still accurate, "Now I am on no meds and have zero symptoms. Looking for work, getting off of disability.", you've been fully recovered and looking for work for over 4 months now. Failing to report such an improvement might not go over well with the relevant agency.
Which criteria were you diagnosed with? Were you diagnosed by a ME/CFS specialist?
High Blood Pressure
This seems to be quite uncommon in ME patients. Usually there is an issue with low blood pressure or low pulse pressure instead.
You say you know nothing about genetics yet you say there are holes in my knowledge?
I do know a fair bit about genetics, and currently there are more holes in your knowledge than there is substance. There are many other holes in your knowledge in other areas as well - such as comprehending research papers or their abstracts. No knowledge of genetics is needed to spot those problems.
It is one thing for me to explain it well it is another to have the capacity to understand it. I do not understand quantum physics but I would not blame it on the person trying to tell me about it.
I should also point out that many of us on this forum are capable of reading about the basic facts regarding various scientific topics. When your version widely and repeatedly deviates from various reputable sources, it suggests that there is a substantial problem with your claims. Additionally, your primary audience seems to be people who know nearly nothing about genetics, so it would make sense for you to explain your hypothesis in a manner which anyone can understand.
I see in my head are too complex for a forum.
Then write a paper. Post it here or on a blog somewhere. Because currently your hypothesis is not making any sense here, even if we disregard the many smaller errors you have made.
If you look carefully at my other posts you will see I certainly do not think I am right about everything. In fact you just have to look at this thread.
People should not have to look carefully at your past posts to find a disclaimer of potential uncertainty. Nearly every time you post something about genetics which relates to your hypothesis and is otherwise unsubstantiated, you present it as fact. As @Kina mentioned, such misunderstandings can be prevented by stating "I believe..." or "My theory is..." prior to making such statements. Every time.
"@ppodhajski just randomly decides SNPs are having an impact, without any concern for whether or not there is any research done into those SNPs." That is an insult and I reported it and nothing happened. I am not doing this randomly. You keep criticizing me but there is another party in all this which I have not heard you comment on.
It's not an insult. It's true. You have listed SNPs as being relevant when the research says they are not relevant. You have listed SNPs as being important to a gene when they are not even located on that gene but rather on a different locus entirely. You have listed SNPs as being relevant when the entire gene is a duplicate of another gene, and it doesn't matter if the first gene is very commonly not functional.
For me to respect her, she needs to respect me and my work and stop instigating and spreading "reasonable doubt".
I'm not looking for respect. I'm trying to understand various topics, and to help others understand those topics. Part of doing that is to question seeming misinformation to see if there is something I have missed, and then to correct it if it is indeed misinformation. This is how we all learn. If the primary goal is respect, then little is ever going to be learned.
You know, everytime Valentenjn says I am wrong she is ALSO insisting she is right. It is how SHE "comes across as [she] think [she] right about everything" which I am responding to. SHE is the "know it all". She is not always right that I am wrong about everything. I hope you can see your bias on this issue..
Obviously I'm not right all the time. And when I'm wrong, I try to figure out why I am wrong, and correct both my own perceptions and what I have said about the subject. I do not fear ignorance - it is an opportunity to learn. But I am also very conscientious in attempting to understand a subject matter before attempting to explain it to others, and before forming theories based upon it.

This is why I have repeatedly taken classes and spent days and weeks exploring subjects when I have identified gaps in my understanding. Even after getting involved with many discussions of research papers on this forum, I was having trouble understanding statistics in research papers, so I read about statistics online. I still didn't feel like I had a strong understanding, so I took a free statistics class online. I failed to complete the class due to a bad crash, but I did learn quite a lot in the process - I understand where statistics come from, the data which should be presented in papers and the format it should be in, and the general meaning of the statistics.

I have done the same thing for genomics and bioinformatics. Even when I already knew a fair bit regarding genomics, a class in it was immensely helpful. For every thing I already knew, there were 10 additional things I learned in that manner. A few of my misconceptions were corrected, and dozens of new and amazing things were taught as well.

What I'm saying is that genomics is a very complicated field. There is so much to learn, and when you're just getting into it it's difficult to even comprehend the vast amount of other things to be learned. There are huge gaps in your knowledge, just as there were huge gaps in mine (and almost certainly still are). At some point, if you want to truly understand genomics, it is absolutely essential to take structured courses in it. And until the more important gaps have been filled, it is important to take into account that they exist, and that many errors will result.

If you really do want to help people, you need to do it the right way. There are no short cuts.
 
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Messages
41
Location
NZ

picante

Senior Member
Messages
829
Location
Helena, MT USA
@Valentijn, I've asked you a few genetic questions myself, and I've appreciated your responses, as well as nandixon's. However, I don't really understand why you think @ppodhajski is saying he can "cure" others. This is what he actually said:

There was trial and error and I found that after a while some things changed, like my need for supplemental magnesium was erased, which makes sense.

FMN, a specific form of riboflavin was instrumental for me and responsible for getting rid of some forms of my chronic FM pain. The Omega 6 gives me lower back pain and the fatigue.

I only have one other persons genetics that has ME. If I had more I might be able to make suggestions so I am open to working on someones genome if they want to contribute it. It might be good to have a thread ith just me and someone else working through it so people can see how I think.

Some folks might be interested in seeing how he thinks, so that they can judge for themselves. But now they won't get the chance: I see from trying to tag him that he is gone from PR. Sigh.

It seems counter-productive to lose someone who got himself to a much better state of health. Is it really because he doesn't put a disclaimer on every idea he presents? I've gotten plenty of suggestions here based on my snps, and I don't need constant disclaimers to tell me that those people might be wrong, or might have misunderstood the research.
 
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Valentijn

Senior Member
Messages
15,786
However, I don't really understand why you think @ppodhajski is saying he can "cure" others.
He repeatedly said (in various threads) that he cured himself using his genetic nutritional data and that is how others can be cured.
It seems counter-productive to lose someone who got himself to a much better state of health. Is it really because he doesn't put a disclaimer on every idea he presents?
No, it's not because he doesn't constantly include a disclaimer. It's because he was constantly wrong about nearly every claim relating to genetics. That would be fine if he were engaging in hypothetical discussion among forum members (it's one way that we learn), but he was making confident claims and dispensing treatment advice based on no research and/or research which he had fundamentally misinterpreted.

I did not have to look hard to find those misinterpretations. Every time he made a post making declarations about specific SNPs, I found serious problems with the first SNP I looked into. If his failure rate wasn't 100%, it was pretty close.

It's great when patients get enthusiastic about various topics, especially genetics, but it's also necessary to get at least some basic understanding of them before telling people how they can supposedly use those SNPs to heal. I repeatedly attempted to correct basic errors he was making, and offered numerous suggestions on how to gain a basic understanding of the subject, but was met with hostility.

Why can really be learned from someone who is completely unwilling to learn anything? If someone wants to help others, they have a duty to do it right. That means at least trying to understand the relevant material, and putting in the hours to really learn about it.
 

alicec

Senior Member
Messages
1,572
Location
Australia
I am sorry to see @ppodhajski leave PR though I can understand why he would. I do think there was a lot of hostility shown to him, more so than I have encountered for other people doing things not dissimilar to him.

I did think he was sometimes flaky about snps but in an earlier exchange on this thread when I questioned him he quickly came back and said he was mistaken.

And he did try to do his own homework on snps, not just endlessly parrot Yasko's mistakes which others on PR do with impunity. Maybe he sometimes got it wrong but we all have to make up our own minds about what others say on PR.

He had a great interest in and knowledge of metabolic pathways, came up with great diagrams and I learnt a lot from him.

I didn't find anything different about his enthusiasm for his own solutions and his desire to impart these to others than several other threads on PR offering alternative solutions. There was even one thread which virtually said what's the matter with all of you that you aren't taking up this wonderful solution to our problems. That did annoy me a bit but I soon got over it.
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
He repeatedly said (in various threads) that he cured himself using his genetic nutritional data and that is how others can be cured.
I never saw anything like that in this thread. I haven't read the other threads, but are you sure he was that categorical?

I repeatedly attempted to correct basic errors he was making, and offered numerous suggestions on how to gain a basic understanding of the subject, but was met with hostility.
Once again, I'm only basing my perception on this thread, but I perceived a lot of restraint - not hostility - until you three pushed hard enough to crack it.

Why can really be learned from someone who is completely unwilling to learn anything?
That's pretty categorical. I don't have to look far on this thread to see that it's not true.

I'm sure you are right, Val, that he was making mistakes. But the approach interested me. If one could get at least some of the genetics right, then supplement co-factors and do lab tests to see what is changing and how it corresponds to our symptoms -- isn't this what we're attempting when we discuss snps?

The list of health improvements he experienced despite his "flaky" approach to genetics is impressive. He must have a guardian angel, methinks.

I am sorry to see him leaving too.
Presumably, he was booted after his most frustrated post.

Look, if three people gang up on me in a thread, I assure you I will say something cynical/sarcastic/hostile enough to get myself booted. Which would be more of a loss to me than to anyone here.

Just thinking of the fallout.
 

Valentijn

Senior Member
Messages
15,786
I never saw anything like that in this thread. I haven't read the other threads, but are you sure he was that categorical?
Yes. Apparently he did something similar on a Parkinson's section of Reddit, told everyone they were getting worse by taking a prescribed med supported by research, and should adjust their intake of minerals instead. Apparently he got banned there as well.
Once again, I'm only basing my perception on this thread, but I perceived a lot of restraint - not hostility - until you three pushed hard enough to crack it.
Well, read the other threads then. There's a bunch from April or so as well. And pointing out basic errors is not pushing anyone: it's correcting errors. It's unfortunate that some people take it as a personal attack when someone points out that they have made errors, but that is part of the scientific process.
That's pretty categorical. I don't have to look far on this thread to see that it's not true.
He repeatedly threatened to stop responding to people who disagreed with him. Though typically he only employed that tactic when he ran out of ways to justify his errors. He was convinced that he was right about his basic theories and many interpretations, and would not accept when those were incorrect.
I'm sure you are right, Val, that he was making mistakes. But the approach interested me. If one could get at least some of the genetics right, then supplement co-factors and do lab tests to see what is changing and how it corresponds to our symptoms -- isn't this what we're attempting when we discuss snps?
Yes, it's an interesting general approach, and not even remotely a new one. The only real novelty was his explicit belief that every SNP was relevant, if it was on certain genes and rare enough. Usually that specific approach would not be considered by anyone who knows much of anything about SNPs and genetics.
The list of health improvements he experienced despite his "flaky" approach to genetics is impressive. He must have a guardian angel, methinks.
Or significant placebo effect, or random improvement, or improvement relating to some of the substances he was ingesting but not for the reasons he was claiming. If the fundamental understanding of the research is overwhelmingly incorrect, it's very unlikely that the theory based upon it is particularly valid.
Presumably, he was booted after his most frustrated post.
I didn't see it. And for the record, I'm pretty sure I never reported any of his posts. Even though he did get rather impolite repeatedly.
Look, if three people gang up on me in a thread, I assure you I will say something cynical/sarcastic/hostile enough to get myself booted. Which would be more of a loss to me than to anyone here.
If someone cannot handle criticism of their hypotheses, or their methodology, or their conclusions, or their ability to cure various diseases, they should not be engaging in anything involving science. It is necessary to divide your ideas from your self.
 

Violeta

Senior Member
Messages
2,952
Yes. Apparently he did something similar on a Parkinson's section of Reddit, told everyone they were getting worse by taking a prescribed med supported by research, and should adjust their intake of minerals instead. Apparently he got banned there as well
Ha, he's right about that, might I add. Too bad they banned him instead of trying to learn from him!
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
I’m still relatively new to this site—at least insofar as using my voice is concerned. I was, well, overwhelmed by the amount of information here, I was not at all clear about what my own issues were, I had limited energy and saw this could be a sink-hole for time, and partly—although before I had to leave my professional life, I was a teacher—I am reluctant to use my voice in a public way. Read into this all the psychology you want; it’s certainly there!

I suppose it was my health issues that drove me to the computer. Desperation, fear, frustration, pain, depression. I have appreciated so much of what I have found here, not the least of which is the multitude of voices that let themselves be known. So, thank you.

And this brings me to my point:

What’s going on, on this Thread?? Can’t we all just get along?

I was reading in the middle of the night—before which I hadn’t even discovered this line of thought—and read this through. I felt upset as I moved along, but couldn’t quite put my finger on what was so upsetting. I realize it’s that feeling of watching people argue, and knowing their perspectives are so different they may never see eye to eye. My parents were like this and had a bad marriage for 36 years. My husband and I are like this and he is truly the love of my life.

For us, it’s just a matter of acknowledging the differences and deciding not to make them an issue. Is that too simple? My husband, like my father was, is a man of science, a physicist by training, an architect by practice. He is a thorough atheist. I’m the philosopher, the Liberal Arts major, ardently looking for some meaning in the universe. An unhappy agnostic looking for proof. Though understand, my proof would never be my husband’s. Well, not true, it could be. He’s certainly capable of convincing me of something I hadn’t known about or fully understood. But my proof might also fall into the realm of feelings.

So, why so much antagonism toward @ppodhajski?

Some of us like playing with him. If you don’t like his game, leave the playground! Perhaps his use of language isn’t as clear as you or he want it to be, but my experience and observation has been that he’s open to questioning and willing to look again.

His perspective, that of food and science is not totally new in this arena. Certainly Adele Davis and Linus Pauling, and no doubt many others, have been here before.

Those who are familiar with my posts know that my biggest hurdle has been getting past the effects of supplements in the form of a B-Complex vitamin. Before coming here, it never would have occurred to me that my vitamins were really hurting me. Yet I recall @ppodhajski mentioning B-Complex vitamins and how one day he would like to post just why he thought they could do so much damage. I’d sign in to read that post! And I’d have plenty to add.

Can’t we all just wriggle into that small space where our personal Venn diagrams overlap and try to see that we are not only all human, but all experience the world in a unique way? If what he has to say doesn’t meet your particular criteria, let it go. There should be room for all voices here.

If he’s gone from this site, I, for one, will be very sad. Much of what he has said—and I haven’t even begun to scratch the surface—has given me hope and a direction for thought and exploration that hadn’t really occurred to me before.

I’m just muddling along, trying to balance my health issues with the needs of a house, a husband, a son, a large enough extended family and the few friends I find less and less time to connect with.

Now back to Dr. Steven Zeisel, distinguished Professor, Department of Nutrition, University of North Carolina, Chapel Hill, PhD, Nutrition, Massachusetts Institute of Technology, 1980, MD, Medicine, Harvard Medical School, 1975. “Common genetic polymorphisms affect the human requirement for the nutrient choline,” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1574369/
 

Valentijn

Senior Member
Messages
15,786
For us, it’s just a matter of acknowledging the differences and deciding not to make them an issue.
It's a nice thought, but when someone is spreading misinformation, that should not just be ignored. If that misinformation is not pointed out, more people read it and accept it without critically investigating it. They spread the misinformation further, and in addition to more people becoming misinformed, they often try new substances which might be harmful, or at least pointless and somewhat costly.

As an obvious example, he was telling Parkinson's patients that their drugs were harmful. This was based on his superficial understanding of the biochemistry and/or pathways involved. The research contradicted his belief, and showed that the drug was helpful. If people had followed his advice, there is a real likelihood that they would have been harmed to some extent.

If people want to enthusiastically endorse their beliefs as a group, without any chance of criticism, private groups are a much better platform. But if they want to speak to a larger audience, they need to be prepared for that audience to disagree and (politely) argue with them.

All of that said, I've been uncomfortable with it too. Usually people take their errors on board and correct them, and revise their hypotheses accordingly. I'm not accustomed to them doubling down and making the same errors over and over and over again. It becomes complicated when they make 5 basic and indisputable errors on various threads, then espouse their hypothesis based upon those errors on yet another thread. It's a lot simpler when I can say "this data/interpretation you have presented is incorrect." It's not so nice when I have to point out that the person putting forth that theory has been repeatedly incorrect in many aspects of it.

There is a rule on the forum about not attacking other forum members (though their statements are fair game), and I think it's an excellent rule. Yet it becomes almost impossible to deal with someone who is repeatedly spreading misinformation, without eventually having to say "This person does not understand the subject at all and nearly everything they say about it is wrong." But the only real alternative would be to constantly ask that person rehash their reasoning, and once more point out the individual errors ... again and again, in every new thread where the error-based hypothesis pops up. And, of course, that person will refuse to rehash it, as happened in the case under discussion.

So it's unpleasant, and I do regret that. But I do not see an acceptable alternative at present. Permitting disinformation to remain unchallenged is not a responsible option.
 

Undisclosed

Senior Member
Messages
10,157
Presumably, he was booted after his most frustrated post.

Look, if three people gang up on me in a thread, I assure you I will say something cynical/sarcastic/hostile enough to get myself booted. Which would be more of a loss to me than to anyone here.

Just thinking of the fallout.

There seems to be a bit of erroneous speculation as to why ppodhajski is no longer with us. He was not booted for any comment he made on any thread on Phoenix Rising and he was not booted for any content he posted. There was an issue that none of you are aware of and that is all I am saying due to confidentiality.

Please put this matter to rest and if you feel that members have broken the rules on a thread, please report it rather than taking a thread off-topic with comments about other members. It is entirely fair to comment that another member may be erroneous about something if done politely. It's really difficult to come across as positive when you are trying to state that you think information being presented is wrong or illogical. It is acceptable as long as the wording does not include personal insults like, for example, "you are such an idiot, you have no idea what you are talking about". There are some fine lines.

Please refrain from talking about a member who can no longer answer for themselves.

Thank you.