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VDR alleles

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by dbkita, Mar 11, 2013.

  1. Lotus97

    Lotus97 Senior Member

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    I think you misunderstood my post. What I meant was that I wasn't trying to convince you that you have CFS from that article. Some people who use these forums say they "have a B12 deficiency, but not CFS". I assumed you did not want to be labeled as having CFS for whatever reason. I'm not sure why you took that as an insult because that wasn't my intention at all. And since my response to your post had nothing to do with methylation or SNPs I didn't see the need for including those lines "for context". I don't necessarily disagree with you either about being many triggers leading to the same illness, but if you think that then I don't know why you don't say you have CFS/ME. Lyme disease seems to be the cause of my illness. I don't know if that means I have CFS/ME or not. I'm not really concerned with labels. Some people have suggested that Lyme disease is an autoimmune condition. I don't know if that's true or not, but there doesn't seem to any consensus on that. I'm also not sure how much that has an impact on treatment. Someone told me about the HERV information when that article came out because they thought it was significant, but I haven't read through the article myself. I'm more interested in things that I can immediately apply to my own health. That's also why I haven't spent much time learning about the theory behind methylation as far as what is actually going on. I don't have the brainpower for that kind of stuff right now, but maybe later I would like to have a greater understanding of these subjects.
  2. dbkita

    dbkita Senior Member

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    Fair enough. But I am sorry what you wrote in the prior post "I don't care if you don't have CFS/ME," not sure how else to interpret that without additional context like you just provided. Ergo my response.

    I obviously did that because others who may be reading the end of the thread and not the whole thing may not otherwise understand why I was talking about my own situation as an example. Also I think it was directly relevant to may later point in the post about there being many ways to end up in the same place and looking for a one shot explanation is a fruitless endeavor.[/quote]

    Because it is illogical to put well defined autoimmune disorders and lump them into CFS. An MS patient has MS. A Hashimoto's has Hashimoto's. A person with Lyme's has Lyme's. Some would argue the latter causes CFS symptoms. Big deal. The important thing is each need their OWN treatment protocol.

    If you want to label every autoimmune or chronic infection disorder as CFS then got for it. It simply devalues the disorder in terms of diagnostic scope and accuracy. All that matters is the end "prize" of what is the appropriate treatment protocol to get better health. Everything else is sophistry imo. For many people sadly CFS is NOT the real diagnosis. It is a kitchen sink they get classified into by various alternative MDs.

    If you have Hashimoto's you will NEVER get better without proper thyroid treatment (and I don't mean levothyroxine). If you have Sjorgren's you will NEVER get better without glucocorticoids. If you have Celiac's you will NEVER get better unless you stop ingesting gluten. If you have Lyme's you have to work with a qualified LLMD and got about treating Lyme's. Whereas if you took a random CFS patient off the streets and gave them Lyme's abx and herbs they would feel like *bleep* and I am not talking about Herx reactions. Then there are others who despite oodles of differential diagnosis fall through the cracks and are still sick and no one really knows why. At least some of the pioneers on these forums like Rich and others set out to look for common ground that would help people across a myriad spectrum of problems that had been lumped under CFS.

    I really don't get your logic that if there are indeed multiple trigger for CFS that ALL triggers imply CFS. That is not logical imo. And even then it is not helpful. Personally, I have a well-defined autoimmune disorder along with Celiac's and diabetes insipidus. I did not start to get better UNTIL the actual REAL diagnoses were made and appropriate treatment selected. I came to these forums looking for possible answers and if I had CFS and found out I did not. But some of the folate / methylation protocols still aid me in certain ways.

    I am sorry to hear that. Then why not start working with an LLMD. Get test verification and start treatment. Treatment can be rough but is essential for a Lyme's sufferer. Messing around with supplements will imo do squat for someone with Lyme's or other co-infections. I apologize if that is not something you want to hear.

    First time I have heard that one. I always though Lyme's was a complicated infection with three different disease states because of its various life cycle forms. If autoimmune in anture, what antibodies are being produced that attack endogenous tissue? Odd since autoimmune disease are treated with immunosuppressants in most cases (exception Hashimoto's to bypass thyroid with T4/T3 medication). But I had always heard people with Lyme's who go on prednisone or other similar meds tend to get MUCH worse over time. For example one doctor who originally though I might have Lyme's and put me on a trial Lyme's treatment protocol (that btw was really awful), admits that my chronic use of supra-physiological glucocorticoids for my autoimmune disease would have completely destroyed me if I had Lyme's via immuno suppression.


    Fair enough. Then if you think it is Lyme's why not see an LLMD and get started? Good luck and God bless!
  3. greenshots

    greenshots Senior Member

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    I agree with you dbkita, it seems that many roads lead to Rome but chasing down that one bug like Lyme or XMRV or whatever hasn't been very helpful. But I also think Lotus wasn't trying to say she didn't care in the literal sense, I took it as she didn't think it mattered whether someone had another chronic problem or CFS, that we're in the same boat. I learned a while back that the way I phrased some things rubbed people the wrong way when I really didn't mean it harshly or critically. Internet conversations really lack some important parts of communcation.
    Lotus97 likes this.
  4. Lotus97

    Lotus97 Senior Member

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    I agree with you for the most part about not lumping everyone together, but this actually sort of a paradox. It true that treatment needs to be custom-tailored to suit the individual, but then it also nice to have a place like Phoenix Rising to bring everyone together. And I also agree with what you said earlier about how methylation and ATP/mito supps will only take a person a certain distance. Maybe people with certain genetic issues related to metabolizing B12 and folate will experience a complete recovery, but I'm not sure about people with other underlying health issues. I was curious what you thought about that article partially because someone else I spoke to seemed to think it was important. I don't know enough to have an opinion. I hope it develops into something, but right now it seems too early to tell.
    http://www.ncbi.nlm.nih.gov/pubmed/21281805
    http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2004.00895.x/pdf
    http://www.medpagetoday.com/Rheumatology/Arthritis/36694

    This is from Buhner's book about how late-stage/chronic Lyme can cause an overactive Th1 immune response.
    [​IMG]
    I'm going to try Buhner's protocol first. If that doesn't work I'll look into antibiotics. I know your opinion about herbs, but I'd like to at least try before antibiotics. Recently, I've heard from a few people who've had success with antibiotics so I am more willing to do that now.
  5. dbkita

    dbkita Senior Member

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    Th1 elevated response does not necessarily mean a true autoimmune antibody response. Sepsis has severe elevated Th1 but you would never treat a person with sepsis with glucocorticoids. But I will grant that a chronic arthriris component is autoimmune in nature but that is very different than thinking Lyme' itself is autoimmune. It is a multifactorial infection. The autoimmune component is the remnant post treatment that never goes away. Also it is true most autoimmune diseases are Th1 elevated.

    Interferon gamma is an amazing guy. IT is the one that drives 1, 25 calcitriol. In the past inteferon gamma was thought to be only pro inflammatory. But recent research suggests it is pro and anti and very important as a regulatory factor.

    Before you try anything do you have a good LLMD? That seems essential.
  6. Lotus97

    Lotus97 Senior Member

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    Yeah. That's what I meant. When I typed "I don't care..." it made perfect sense to me, but I realize now it could be misconstrued.
    I don't know enough to have an opinion on this. That's part of the reason why I was curious what dbkita thought since he understands this stuff a lot better than I do. I had heard of XMRV, but didn't know what it was. I guess it's good I didn't waste my time learning about it.:p
  7. dbkita

    dbkita Senior Member

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    I do think though Lotus if you are seriously considering Lyme's and you have said some things before that has suggested a possible link (right?) ... then you may want to get with a LLMD who can really evaluate you for it. You might even need a second opinion until you find an LLMD you are comfortable with. The heavy handed, "everything is Herx, deal with it" is a load of **BLEEP** imho.

    Also while arthritis is consequence for advanced stage Lyme's you really need to focus on it as an infection and fight it like crazy in all of its three life cycle form IF it really is the problem. I have a really good friend who saw a top LLMD in the Bay Area (can't remember doctor's name, but he has six month waiting list to give you an idea). He correctly saw she did NOT have Lyme's but had ehrlichia and babesia and aggressively went after them. Helped her a lot but it took a long time. On the other hand I went to several doctors who all pushed Lyme's my way despite all negative lab tests and lack of neurological symptoms. So it is a tough thing if you don't get the right doctor.

    This is all just my opinion of course and I wish you the best whichever road you take.

    P.S. I apologize btw for misconstruing your earlier comment. I literally re-read that comment like 10 times and kept coming back to the same what I erroneously thought was inescapable conclusion. Internet communication is much harder in that respect than a phone call or open verbal dialog. Mea culpa.
  8. Lotus97

    Lotus97 Senior Member

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    I didn't realize you could have a coinfection, but not borrelia. I guess I should look into getting tested. It's just that the tests for Lyme itself are supposed to be inaccurate. The newer ones are supposed to be more accurate, but they're still not 100% What symptoms are you referring to in regards of "neurological"? Actually, I think I found a list
    (I included the last half just because I have a feeling you were thinking the same thing;))
    I can understand why you would think that. I wasn't sure how to say it because I also didn't want to sound condescending like "I give you permission to use these forums even though you don't have CFS/ME". We don't even know what it is exactly. I don't even know if Lyme is included in CFS/ME. I suppose I shouldn't be too hasty assuming Lyme is my problem either, but I think having a recurring rash where I was bitten seems more accurate than some of the tests. Both times it happened it occurred within a month or two of seeing a chiropractor. The Lyme bacteria like to hang out in the spinal fluid so I think the chiropractic adjustments might have reactivated my illness. I had relapses after each time the rash occurred (2-3 years apart). Of course it could all be a coincidence. I also had amalgams put in 6-12 months before each of those relapses. Someone told me that there isn't an accurate test to access mercury toxicity and the only way is to take an ELISA test to determine mercury sensitivity. There don't seem to be any easy answers with this illness.
  9. greenshots

    greenshots Senior Member

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    Lotus, I think you are way in over your head here and shouldn't work up anything until you've done more research and have the information to back your intuitions up. When I started out, I did the same thing youre doing and wasted alotta time chasing after stuff I wish I hadn't. Everyone is in a hurry to get better so it makes sense but you don't want to waste all your money going down the wrong path. I can't say what your path will be but it seems to me that you came to the methylation forum for a reason. Take some time to weed thru it all and make some littler changes here and there until you find what you think is right.
  10. Lotus97

    Lotus97 Senior Member

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    I did make that mistake a few years ago and spent a lot of money with my previous doctor. My doctor now is covered by my insurance and so are the tests she runs and the prescriptions (provided they're generic) which is why I'm hesitant to go to a new doctor. The thing is, I was making a recovery and got to the point where I was working out at the gym, but then I had a severe relapse. I haven't left the house in the past 6 months except to go to doctor appointments. So I do need to address my underlying illness. I think dbkita is right that I shouldn't assume that Lyme is what's wrong with me until I know for sure, but that's easier said than done. I've been sick over 15 years so I'm not exactly "starting out", but that doesn't mean I can't still make more mistakes.:rolleyes: I do believe methylation is an effective treatment which is why I've dedicated so much of my time learning about it (though it does seem that there's so much about it I still don't know), but I also believe that isn't enough if the underlying illness isn't addressed.
  11. greenshots

    greenshots Senior Member

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    Since methylation is the genetic underpinning for body chemistry, what are you referring to as the root cause? Infections, toxic waste, and metals are mostly the downfall of vulnerable genes, aka, methylation and of course our enormous level of environmental poisoning today. There are probably other genes we haven't discovered but methylation helps to turn on and turn off many genes. To me, this is the root cause and once you cover that, you go after remaining bugs that haven't responded or metals and other stuff.
  12. Lotus97

    Lotus97 Senior Member

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    That's an interesting spin on the whole Nature vs. Nurture debate. You describe an incredibly complex system with an innumerable amount of variables. I do hope we learn more about SNPs (since I already ordered the test), but I think dbkita's response to Freddd's question earlier in this thread makes a lot of good points. Rich wrote a really good article which goes over all the factors in creating a block in the methylation cycle which does include genes, but also environmental stressors.
    http://phoenixrising.me/research-2/...etion-theory-of-mecfs-by-rich-von-konynenburg
    I recommend anyone following this thread to read the article. It explains things in very simple language and puts things very succinctly. I showed it to my dad and he understands my illness better now.

    Skyline also posted this diagram (I'm not sure if he made it himself)
    http://forums.phoenixrising.me/index.php?threads/skylines-journal-progress-experiments.20914/page-3
    [​IMG]
  13. greenshots

    greenshots Senior Member

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    I'm familiar with Rich's stuff and the diagram above but didn't see what you felt the root cause was? If bacteria or virus is the root cause, do these advocates feel everything else falls apart from there? That methylation, mitochondrial dysfunction, and immune problems will fall in line if you treat the bug? I'm not challenging you, just trying to see what your thinking is.

    For example, I learned along the way that methylation played such a key role since more people would probably have problems if it were simply a matter of vaccines, Lyme, herpes, or whatever. As my doc discussed it, you have people who appear to do just fine after a series of shots, even with a bad cold, or some who lived by Chernobyl (sp?) and seemed ok but eventually, toxic accumulation is going to catch up. Why do some get super sick right away when others might have dementia from the same exposure, 30 years later? My sense is that our genetic combo's and level of exposure have alott to do with this result.
  14. Lotus97

    Lotus97 Senior Member

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    My point was what I said earlier that "this is a complex system with innumerable variables". It's very difficult to untangle everything. Yes, a lot of people have improved from methylation and a lot of people have improved by treating viral or bacterial infections and many have success supporting the Krebs cycle and taking ATP/mito supplements and many need to do various detoxification for mold/metal/chemical toxicity. I'm relatively new to all of this so I don't really have an opinion other than it's complicated. I'm amazed at the number and variety of tests some of the people here are getting. Every other day I hear about a new kind of test that measures certain functions. Yes, I've been sick for over 15 years, but the research I've done in the past has been several layers removed. Since I've joined Phoenix Rising I feel sort of like I'm at the epicenter (or at least much closer than I was in the past) of...well, I'm not sure what exactly. But people like Rich and many others have all been doing research and collaborating and sharing ideas. There's over 5000 posts just on GcMAF. Someone started a thread the other day about impaired function of natural killer cells in people with ME/CFS and was questioning whether this was an actual occurrence or not and then I remembered a thread Rich started last year about how NK cells and CD8 cytoxic T lymphocytes were low in perforin (and how it could be due to glutathione depletion).
    http://forums.phoenixrising.me/inde...lls-perforin-and-glutathione-depletion.17603/
    In the thread the he also posted links to two recent studies done that had concluded that people with CFS/ME did have impaired NK cell function. And so I posted that information in the new thread. Where's this all going? I have no idea. I'm doing my part to contribute, but I don't understand this stuff on a technical level like some of the people here. I'll try to make sure that the information gets to others who can interpret and analyze it.

    I'll just conclude with something Rich said to you last year. You may or may not remember it. I'm posting it partially to illustrate the points I made in this post, but also for anyone else following this thread who wants to hear Rich's assessment of where things stood (in his mind anyway) as of mid 2012 in terms of CFS/ME.
  15. greenshots

    greenshots Senior Member

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    I remember his post. We also had several private chats regarding some questions I had and I I think you may be confusing promising treatments vs. root issues. There might be alotta promising stuff on the horizon and some people might get better with different treatments but unless you deal with core weaknesses, your probably going to have some problems later. In other words, You might figure out your Lyme only to suffer from MS or dementia or something else in your 50's or 60's. I don't think methylation is the only genetic problem, just a key part of the genetic root cause. But one thing I'm pretty sure of is that if methylation is really messed up, you can use all kinds of bandaids now but your still gonna pay later.
  16. Lotus97

    Lotus97 Senior Member

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    Some people say that pretty soon we'll be able to extend the lifespan of humans beyond 150 years. I'm not holding my breath. I'm sorry if that seems like a strawman argument, but it sort of sounds like the path you're going down. I agree with Rich that genomics seems "promising", but right now people in the SNP forums are posting their "detox results" and no one seems to know how to interpret them or what to do about it.
  17. greenshots

    greenshots Senior Member

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    I know, I feel bad for them since I got lucky. Thanks to Rich, I found a doc who did know what to do with these results and now I have three normal kids (2/3 were autistic) and I'm no longer bedridden with ME. Its true that it wasn't an overnight sort of thing. I had to hang in there for almost two years, even when I couldn't stand waiting and feeling so bad. But I did get well and I watched so many in my old biomed group get well too. Its possible, we just need more docs willing to take it on. But since mine had to quit a profitable career in mainstream to learn it all, I don't hold much hope of that either.
  18. Lotus97

    Lotus97 Senior Member

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    It's hard enough just finding a doctor that knows how to treat ME/CFS. My current doctor is the best one I've had yet, but she still is sorely lacking in many areas. The one positive thing I can say about her is that she seems to genuinely care whether or not I get better.
    roxie60 likes this.
  19. Ema

    Ema Senior Member

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    @dbkita, Can you please help me find out more about interferon gamma and 1,25 calcitriol?

    Do you have any references you could share?

    Thank you!
  20. brenda

    brenda Senior Member

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    @Ema dbkita has not been around for a while.

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