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Newbie - simplified protocol or full monty?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Johnmac, Nov 22, 2012.

  1. Johnmac

    Johnmac Senior Member

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    I hope no-one minds a basic question from a newbie. I don't have autism or CFS, but this seems to be one of the few forums where methylation can be discussed - & I am presently very interested in that.

    Firstly, condolences to all on the death of Rich van K - an inspirational man. I hope it's a slender consolation that he continues to help people (greatly in my case) even in his absence.

    I've been chelating mercury with the Cutler protocol for 16 months, & (with the help of hydrocortisone, dessicated thyroid & a pile of supplements) have improved quite a bit from the adrenal fatigue that put me on the floor in the middle of last year.

    However a recent long (30-day) round of cheation stirred up serious reactions to thiol (sulphur) foods that are still ongoing. I've been fairly dysfunctional for 3 months, & can't do any more chelation.

    I gather this (& probably many other problems going back years, such as low energy & brainfog) may be related to faulty methylation, & am now keen to explore that.

    I'm reading Dr Yasko's book, & quite a few websites - tho I am still a real amateur.

    Dr Nathan's study on 21 CFS patients with a standardised protocol of (chiefly) methyl B12 & methyl folate had good results. But it's a bit disappointing that only 22% in the forum survey at http://forums.phoenixrising.me/index.php?threads/rich-vanks-simplified-methylation-protocol-poll.3579/page-2 gained "major improvement". (Isn't it?)

    In addition to that, others have opined that using a "one size fits all" approach can harm you. I don't want to give myself schizophrenic symptoms, which the poster below this article implies I might:

    http://www.mthfrsupport.com/articles.html

    A friend (on the other hand) used the simplified protocol & gained great beneit immediately - a huge turnaround in his life.

    I work in Cambodia as an aid worker, & get a lowish salary. Being monitored by a doctor would be impossible (there aren't any here), as would receiving a steady supply of supplements, due to the expense. (There is no postal service.) But I could manage to do the simplified protocol, I believe.

    So the pragmatic question is: Before leaping into the time & expense of genetic testing, a practitioner, & then a more elaborate supplement regime (as I think Dr Yasko & others suggest), would it be worth trying the Van K/Nathan 'simplified protocol'? Or is it too risky (especially, perhaps, with all the mercury I seem to have circulating at present)?

    I suspect this dilemma may even be artificial, as Rich van K's work stemmed from Dr Yasko's as I understand it - so there are likely to be subtleties here that have hitherto escaped me.


    Thanks to all,

    John
     
  2. place

    place Be Strong!

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    Full Monty.
    I would not try Methly without having all the supplements on hand. There is no one size fits all. You have to be your own chemist with trying all the cofactor supplements. Each person has a different combination for success. It takes good patients and testing before you hit on your individual regimen. Good luck.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Johnmac

    If you want to try the Simplified Protocol and can get a supply of all the supplements involved (plus potassium), you would probably be OK if you started one supplement at a time and at much lower doses than given in the protocol. The doses given are the "target doses," and most people have to work up to them from much lower doses.

    If you had problems, you could stop, wait, and start again at lower doses. That said, you might want to continue with the Cutler protocol longer first, until you feel that you have made enough progress there.

    Re: forum polls as compared to the Rich's and Dr. Nathan's percentages, forum polls are not very accurate because only a fraction of the relevant group of patients are going to report on the polls.

    Good luck with this. Methylation protocols usually need to be individually tinkered with according to how you respond, and your response won't be a constant curve--lots of ups and downs.

    Sushi
     
  4. Johnmac

    Johnmac Senior Member

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    Thanks to both of you.

    place: I guess my main stumbling block is the decision to get gene testing first - the main concern here being: What if I have (say) a CBS or COBT mutation as well as the MTHFR? I believe they can cause problems if not accounted (and supplemented) for. I already have big sulphur problems.

    Yes, I wouldn't try even the simplified protocol without all the supps (+ potassium - which Dr Ben Lynch is big on, I notice).

    Sushi: Cutler protocol seems to have helped (till the setback) - but I can't chelate any more for the moment because I am already very reactive to thiols on account of the mercury it's stirred up. I.e. I can't afford to get even more reactive.

    I think I need to sort out methylation first.

    Is there that much daylight between Rich van K and Dr Yasko? At a superficial look the former seems to think a simple protocol is safe & worth doing; & the latter says that exacting gene testing and a more carefully & individually calibrated protocol is required, on the basis of the testing,...
     
  5. madietodd

    madietodd Senior Member

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    Johnmac, by "full monty" do you mean first doing Yasko's genetic testing and then following her recommendations?

    I started with Rich's protocol, got the Yasko testing, tried Freddd's "active" protocol, and have returned to Rich's. I don't benefit from methyl b12 as opposed to hydrox, and I react badly to doses over 2,000mcg.

    The suggested supplements that come with Yasko's test results are extensive and expensive. I could not have afforded them all.

    I did not notice much benefit on Rich's protocol. However, I notice when I stop for, say, a week. I lose energy and get brain-fogged. It turns out that sometime during the year and a half on Rich's protocol, I contracted Lyme disease, so probably that's been making me worse while methylation has been improving.

    My point being that CFS is so multi-faceted that it's unsurprising that people don't report full recovery from any one intervention.

    Good luck!

    Madie
     
  6. Johnmac

    Johnmac Senior Member

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    Thanks Madie.

    Yes, I guess I meant the full Yasko approach vs. Rich's simplified protocol. The reservation I have about the latter is not that it won't work (you take your chances) but that it may harm me: there have been some dire warnings about "one size fits all" approaches.

    If I was satisfied that not much could go wrong with Rich's protocol the decision would be easy - as the Yasko approach does sound complex & expensive, & why not see if something simple works first?

    I'm disappointed that only 22% on the simplified protocol improved in the recent poll; tho against that the score in the study was higher. Also my friend has had a big turnaround.

    Thanks for your input & sorry about the Lyme - that's a complication you didn't need.

    All the best,

    John
     
  7. Johnmac

    Johnmac Senior Member

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    One more question:

    I'm off home to Australia for Xmas, where there's free pathology testing for citizens.

    Would there be any 'regular' pathology tests that people recommend?

    Thanks again,

    John
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You might want to start a thread asking that as a lot of Aussies will miss it in this thread.

    Sushi
     
    merylg likes this.
  9. Johnmac

    Johnmac Senior Member

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    Thanks Sushi. But I just meant general tests (e.g. bloods) that are available in most places.

    So Americans, Europeans, etc could comment if they wished - as most of what is available there would be available in Australia, I think.
     
  10. madietodd

    madietodd Senior Member

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    The reason I went straight to Rich's protocol was my understanding that it's safe. I'm not claiming that in all cases it's neutral for people without methylation issues - I don't know that - but I researched here for a long time, and didn't run into stories of adverse affects.

    As Sushi said, it's important to know your own personal sensitivities to supplements, and to start at an appropriate dose for you.
     
  11. Johnmac

    Johnmac Senior Member

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    Thanks Madie. It's very reassuring that you haven't come across bad stories re the protocol.

    22% with major improvement (in the poll) isn't great odds - but worth a shot. The main concern was safety.

    I'm not sensitive to most supplements, so that's a start.

    As a Cutler protocol chelator I'm used to the idea of 'start low & slow', so hopefully I'll be able to stick with that here too.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi John,

    I don't think we can compare poll results here on the forum to those from a study. Only a fraction of those who have tried the Simplified Protocol will have participated in the poll. People choose to participate in polls here (or not) for various reasons. Some polls are public and the people participating can be identified. (I haven't checked this one)

    Also, it is hard to design a poll here that fits most people's experience. I often don't participate in polls because none of the choices reflect my experience and I don't want to skew the results by clicking on something that isn't completely true for me.

    And this poll doesn't give a timeline. Some may have noticed nothing if they took the poll at 3 months, but might have if they took it at 6 months, etc.

    We have seen with other polls here that the percentages seen in polls here is not really statistically significant because where or not you participate is your own choice. Whereas in a study, all participants will be counted.

    Sushi
     
  13. Johnmac

    Johnmac Senior Member

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    Thanks again Sushi - you're no doubt right about the poll's lack of statistical power.

    BTW I got a reply from European Laboratories today. They sent me the instructions for sending the methyylation panel blood: saying I needed to pack it in ice (from Australia to the Netherlands!?) and centrifuge it before sending (I don't have a centrifuge at home).

    This all seemed a bit strange, so I've asked them for clarification.

    Is there a US lab that does the same panel?

    Thanks again.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There is a branch of the same lab in New Jersey--Health Diagnostics. You will see it listed on the website.

    Customer relations are not optimal with this lab! (either branch) I think they need to tell you the limits on shipping time. As I remember, the sample needs to be kept cold, but not frozen, so dry ice probably wouldn't work, and ice bricks would be pretty likely to melt in that long transit.

    I seem to remember that they wanted the sample within 24 hours of drawing and I don't know if that is possible from Aust. Also, most places that draw blood will centrifuge it for you. I have had it done both at hospitals and doctors' offices. In the US they often don't charge for blood draws at hospitals and will do it for patients with kits from outside labs. Guess you would have to check in Aust.

    Best wishes,
    Sushi
     
  15. caledonia

    caledonia

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    Rich has a list of adverse effects from people who tried out the protocol: http://phoenixrising.me/treating-cf...gue-syndrome-cfs-by-rich-van-konynenburg-ph-d
     
  16. caledonia

    caledonia

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    Johnmac
    Some random thoughts:

    After 16 months on Cutler, I would think all the mercury would be out? Have you done any follow up testing to see what your levels are?

    In general, I suggest stopping chelation and getting back to some sort of baseline before starting methylation. Methylation will cause more toxins and metals to come out, which may make you feel worse.

    Could your friend who did Rich's protocol supply you with some samples so you can try it out and see your reaction?

    In general, there is a middle ground between Rich's simple protocol and Yasko. With the sulfur problems, you may want to do Yasko testing vs. 23andme, because 23andme doesn't cover SUOX (sulfur).

    Yasko says to treat the SNPs in this order SHMT/ACAT, CBS, MTHFR, MTR/MTRR, BHMT, MAO A, SUOX, NOS, VDR.

    What I'm doing is treating CBS by reducing sulfur and ammonia, then I think I may be able to do Rich's protocol after that.

    The HDRI methylation panel is a good idea to do first get a functional reading of your methylation cycle. The SNPs are just tendencies, and may or may not be activated. If your methylation is indeed messed up, then you can do SNP testing to get a roadmap of improving things. The HDRI panel can also be run every so often after starting methylation to see if things are improving.

    In general, with supplements always START LOW and GO SLOW. This means start with a tiny fraction of the recommended amount and then very gradually, as tolerated, work up to a full dose. If you experience adverse reactions, then STOP, let everything clear and and restart at a much smaller dose. This will keep you from having a major relapse.
     
  17. ukxmrv

    ukxmrv Senior Member

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    Hi John,

    I don't think that any of the SNP tests are aviailable under the Australian medicare system. Hopefully someone who has had some will be able to correct this and chip in with where they were done and how.

    What you might find useful and hopefully free would be testing for things like

    B12 blood levels
    Folate blood level
    D3

    Others might be able to add from a list of tests that they have had under the standard Australian system
     
  18. LucyS

    LucyS

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    Hello Johnmac,
    I'm in Australia and recently had the Methylation Pathways Panel done at HD in New Jersey! There were no real problems, just requires a bit/lot of planning and organization! Which was quite taxing and a real headache!! However, it is possible to have done!
    You will need to get a "prescription" from your doctor on their yellow/white prescription pads and fax that to the Lab and then they will mail out the test kit to you - the request form in the kit needs to be signed by your doctor also and credit card details go on this form! You will then need to get your doctor to organize/request the blood draw at a lab and specific instructions for centrifuging need to be followed and samples frozen till you then pick them up and keep them frozen at home until courier pickup. You then need to organize a courier service for delivery back to New Jersey, this is quite expensive! I can't remember atm who I used, only a couple of options here anyway, FedEx maybe? Quite a bit of customs paperwork to fill out, sample is kept frozen, packaged up in test kit and given to courier. Results are then e-mailed to your doctor in roughly 3weeks I believe!
    Hope this helps,
    Lucy
     
  19. LucyS

    LucyS

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    O and it is possible to have the MTHFR 677/1298 SNP blood test done here under normal Medicare, doctor just needs to request it!
    And as you know blood B12 and Folic Acid levels are standard tests but are not fully accurate for these methylation requirements!
    And the Vit D panel blood tests are also standard bloods here too!
     
    ukxmrv likes this.
  20. place

    place Be Strong!

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    Mac, I did not test at all. I have had great improvement on fffred's protocol. I run three times a week. Amytime I used to exercise, was laying flat for at least 36 hours. Now I can have a normal evening after a run. I can tell how far I come when I get off the supplements. Which sucks because I take a truck load.
     
    ggingues likes this.

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