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Deadlock quartet - are these the right supplements?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Bansaw, Aug 7, 2014.

  1. Bansaw

    Bansaw Senior Member

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    I'm looking at these supplements and wondering if I've got the right products.

    1) Enzymatic Therapy, B12 Infusion, Energy, 30 Chewable Tablet

    2) Anabol Naturals, Dibencoplex 10,000, 30 Sublingual Tablets

    3) Doctor's Best, Best L-Carnitine Fumarate, 855 mg, 180 Veggie Caps

    4) Life Extension, Optimized Folate (L-Methylfolate), 1000 mcg, 100 Veggie Caps

    Are there any others that people typically take. A potassium supplement?
    I also saw a B12 supplement on Amazon which is a spray and says its an alternative to B12 shots.
    http://www.amazon.com/dp/B00GFEX1VU?psc=1

    But I don't think that B12 shots are recommended for people starting the deadlock quartet?
    What are the initial daily doses of the four deadlock quartet supplements you typically start with?

    I am under the supervision of a good doctor and I'll run all this by her so she can monitor me.
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Any potassium will do. You can only take 300 mgs at a time.

    I bought a DrVita LCF that is 500 mgs because the price was really good. I use Solgar Metafolin, 1200 mcg. I've been taking 1000 mcg B12 Infusion before I started methylation. I am using Source Naturals Dibencozide 1/4 tab. All doses are per my NP.

    You can use what brand you wantif cost is an issue, as long as it's the correct thing.
     
  3. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    Wow, that's truly awesome. And rare. I was reading Eric's "How I Recovered" Blogand chuckled when he said "doctors supervision" is an oxymoron.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    I'm seeing a naturopath who understands methylation and ME. I really got lucky with her.
     
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  5. sueami

    sueami Senior Member

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    The top 3 are definitely the latest recommended brands. Not sure about the mfolate but it sounds reasonable. (I think mfolate is less futzy than the mb12. Freddd's had trouble with mb12 brands becoming ineffective for him, presumeably after a formulation tweak. The Enzytherapy one is good.)

    You are missing the mixed B supplement freddd recommends starting with -- Nature Made B-Complex with Vitamin C list number 1338. Freddd advises starting with that for a couple days, then adding in folate and b 12 and tinkering around with those amounts for some period of time, then adding adb12, getting that stable, then adding LCF.

    The variety of potassium depends on how well you tolerate potassium. I've posted many times about taking a lot more than is recommended by many here, without troubles, on the advice of my physician. I have a 1500 mg tablet I ordered from a canadian pharmacy on my doc's recc and I also have no-salt which I drink in a glass of water (1/4 to 1/2 tsp, depending on symptoms, at night, so I don't have to worry about swallowing pills without food to push it through the system) and I have some 99 mg potassium gluconate/citrate/aspartate blend that I also take sometimes, if I am feeling low potassium in the afternoon or early evening.

    The average RDA for potassium is 4700 mg right now and I believe that has been recently raised, which tells me it's not a super-well understood nutrient yet. You can also load via food, if your digestion is functioning well -- bananas and potatoes being two good sources.

    I have not seen b-12 sprays recommended on the boards yet, though there is a member who got a lot of benefit out of a product called readisorb, until it stopped working for him.

    I wouldn't start with MB12 shots but I'd definitely keep them in mind. Caledonia has a great document link in her sig to common methylation pitfalls and starting low and going slow. It's good advice. Until you know how your body is going to respond to these supps (and that can take weeks or longer) it's best to start in small increments and work up.

    If you're not generally super sensitive to supplements/really far along in the disease process, I think it's reasonable to start at 200-400 mcg folate and try an equivalent amount of mb12 (keeping in mind that absorbed levels of MB12 from sublingual tablets are less than the total from the label. Freddd estimates he gets at best 30 percent absorbed. They're supposed to dissolve in your gum for at least 30 minutes and ideally a couple hours. Swallowing them basically ends absorption because b12 does not absorb well in the gut, as I understand).

    You may need more MB12 than folate given your +/+ MTRR snp.

    You may experience a lot of anxiety/mood instability during start up with your MAOA and COMT snps. My advice is not to give up, but maybe try backing down on amounts if it is really unpleasant. Low and slow. I had a lot of anxiety and neurotransmitter wackiness for many weeks and I also was doing too much folate in relation to b12. I discovered this by taking b12 shots and realizing how good the b12 made me feel on it's own. I have similar snps to yours.

    Some people here, who are very sensitive to supps, start with a few grains, diluted in a glass of water. You have to decide what is likely to work for you.

    It's really a go-by-feel process. Take the folate first thing in the morning, before food. Watch for reactions. I take my mb12 tabs after breakfast, b/c they need a long time to dissolve without my trying to eat. In fact, if it were me, I might try starting with the mb12 alone for a week or so. You have just the 1298 hetero snp, so folate may not be as limited a factor for you as mb12.

    As far as dosages on the later additions to the quartet: I added in a quarter tab of adb12 at first moved it up to a half tab, noticed nothing, and about 3 months into the protocol went to a full tab and had a huge brightening/energy increase. I only take a full tab twice a week though, as ADB12 has a long halflife in the body, compared to mb12. Read up on those things if you can.

    I'm not saying you should jump right into adb12 at all. Just that you can cross thresholds as you gradually increase things that are pretty profound. Don't give up on the protocol if you don't feel like you're making enough progress. Just keep trying to bump things up, within your tolerance of startup reactions/effects.

    I started out taking a half tab of LCF in the am with the folate but felt really racy and wired and didn't like it so I put it off until early afternoon, two hours after lunch, and didn't notice an effect from it then. After a couple weeks I upped LCF up to a full capsule, then a couple weeks later was able to take it first thing in the am without noticing any effects. Now I'm up to one in am and one in pm.

    Again, read Caledonia's advice and do try to start low and go slow. Patience is hard to come by when we've been sick for so long, but it's worth cultivating. Journal what you're taking and how you feel in the 48 or so hours after you make changes. That's very helpful too.

    good luck!
    Sue
     
    Last edited: Aug 7, 2014
  6. Bansaw

    Bansaw Senior Member

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    Thanks all... I've had to learn the acronyms because I wasn't sure what adb12 etc actually mean. But a few other posts on the site have helped.
    I sense my doctor (who I will see on Tuesday) has a plan to put me on NAC and 5HTP to get my serotonin up. I'm already on "Methyl Protect". All of these things might interfere with the Deadlock protocol.
    Its unlikely that my doctor will affirm a protocol found on a website rather than her own protocol. There's the pride thing where doctors are supposed to be the authority that know everything. But she's pretty good. I'll have to play it by ear. Things have improved under her guidance slowly, but energywise and at the neurotransmitter level, I'm not where I want to be.
     
  7. minkeygirl

    minkeygirl But I Look So Good.

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    Please break your post into shorter sentences. I can't read that much text in one chunk.
     
  8. sueami

    sueami Senior Member

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    I would spend some time here using the google search feature and research NAC and 5HTP and any reactions to them. (When you click on the search box there is this line of small text below the input box. Click the link to search: "You can also try a Google Site Search")

    With any luck, you'll find some discussion that reference snps that you have -- how those supps interact with specific defects in the methylation cycle. Even if you do, you won't know how you might react to those supps till you try them. As long as no one is reporting major, sustained setbacks from trying them, it's probably worth a shot to try them.

    I'd advise spending some time reading Heartfixer's page. http://www.heartfixer.com/AMRI-Nutrigenomics.htm and also Ben Lynch's mthfrsupport.com. The more you know about methylation and the current professional thinking about it the better you can evaluate your naturopath's grasp of it.

    Ultimately, you have to decide for yourself what path is likely to benefit you most. As Sherpa referenced, lots of frustration with docs and naturopaths here, with good reason.

    Other folks have had great results seeing top notch CFS/ME specialists.

    And there are CFS recovery stories out there of people who returned to normal activity levels after simply long periods of rest and learning how to break exertion into smaller tasks and intersperse with restorative time. Those people may not have had full blown ME or may have caught it early but it's a viable alternative to consider as well. Google CFS recovery stories and spend some time reading those, so you get an idea of what helps people, how many people report succeeding with it and what "recovery" looks like, when it happens.

    I stopped seeing my naturopath a year and a half ago because I didn't feel like I was making any further improvement and had unexpectedly crashed. I then saw an integrative medicine specialist who ordered some useful tests but had insufficient advice about how to address the issues that were uncovered. When I got health insurance coverage, I saw a Kaiser physician who was worse than useless, then a slightly better one who was still essentially useless.

    I am now seeing a different cash-basis holistic physician close to home who has some familiarity with methylation but feels that healing the gut is the most important thing to do and that supporting methylation is helpful but not the key fix. The best thing he is doing for me is prescribing b12 shots and helping me deal with low potassium symptoms.

    He doesn't buy a high-dose methylfolate protocol and I don't blame him -- I don't expect him to read here and absorbs Freddd's voluminous posts and the testimonials of various members who are doing better on it.

    You could ask your doctor where she learned/formulated her methylation protocol. If you are not certain that methylation defects are a foundational problem for you, you could continue to follow your naturopath's protocol for a while, but if she is not deeply familiar with chronic fatigue/ME or methylation, I can't see why you would want to, particularly if you feel like you are getting worse or are significantly impacted now by the dysfunction.

    I find myself feeling my way through this now, not blindly following anyone's professional or anectdotal advice. Journaling helps me keep track of factors that may be positively or negatively influencing my health. There are ways to access deeper knowing, if you feel that would be valid or useful for you to try. Some people use applied kinesiology, I've been getting a lot out of dream work lately.

    No easy answers, as far as I can tell. But a lot of chances to improve your connection with your body and choose healthier ways to live and reframe *everything* about your life, your health and your self.

    good luck!
    Sue
     
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  9. Bansaw

    Bansaw Senior Member

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    Thank Sue. I'll certainly try and read up on it. Its such a big topic, and my mind energy/focus is not as it used to be.
    About ten years ago I got post traumatic stress in Africa (as I was near a war zone) and at the same exact time I caught Endemic Typhus from a flea bite which had a long time in my body to cause damage before I treated it with lots of anti biotics.
    Traumatic stress didn't do my neurotransmitters and favors. And the constant adrenaline need didn't bless my adrenal glands.

    The anti biotics caused (imho) Candida and gut digestion issues which led to malabsorption. And my new doc says the antibiotics themselves didn't do me any favors (I took lots). But what else could you do if you've got a systemic tropical bacterial disease?

    About four years ago I felt like a zombie who had no energy. But now I'm feeling somewhat better. Not "healed and well" but better and improving.
    I see my doc on Tuesday and I'm going to present this Deadlock quartet thing.
     
  10. sueami

    sueami Senior Member

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    I bet sustained psychological stress and a viral/infectious onset is a common backstory; it is at least similar to mine.

    I've considered testing for viral/bacteria signs in the immune system and treating those. That's where a true CFS specialist is needed, I think, though it would be worthwhile to read through the antiviral/immune modulator sub forum. I may head in that direction next if methylation support doesn't get me reasonably recovered. Those protocols include IV abx which preserve the gut flora, as I understand it.

    You might have more luck with your naturopath if you can explain to her the precise function of each of the quartet so that she understands why the protocol is constructed the way it is and that it has some scientific understanding behind it. If you have the brain power to do that, always the wildcard, I know.
     
  11. Bansaw

    Bansaw Senior Member

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    I am not sure of the function of each of the quartet and how they act together, but I'm willing to read up on them. At the moment, what I read so far is:
    1) L-Carnitine Fumarate - transports fatty acids into the mitochondrion, and thus aids energy production
    2) B12 infusion, chewable sublingual tablets - also aids energy production and fights fatigue. Sublingual because it abosrbed better into the mouth area (eg: gums) much better than being absorbed in the gut. Maybe a case for starting B12 shots later.
    3) Dibencoplex 10,000 - Dibencozide is required by the body to process certain amino acids through the Kreb's cycle for sustained energy. Dibencozide is critical to body protein synthesis.
    4) L-Methylfolate - good for neurotransmitter production and other enzyme reactions int he body

    And I guess we'll need to add potassium, 300mg p/day, to that list to because I'm guessing this protocol depletes potassium somehow (?)

    Any advice on what else I can tell my doc that will help her be convinced?
     
  12. Freddd

    Freddd Senior Member

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    Hi Bansaw,

    Many people need 1200-3000mg of potassium a day when healing gets started. 300mg is a tolerable dose on an empty stomach with enough water.

    The potassium goes all the way back to correcting pernicious anemia in the 1950s. They noticed that for those with a strong response of growing normal red cells many got hypokalemia. Those people were removed from trials as that is a dangerous side effect if maintained. In effect they only studied those who didn't have a strong healing response and eliminated those that did. That is not the more effective choice if one actually wants people to heal.

    This goes back to the liver extract trials before the mistake was made and MeCbl/AdoCbl were through a lab mistake converted to cyanocbl and misidentified. The Deadlock Quartet duplicates the balanced effectiveness of liver extract.."Protein mystery factor" wasn't a single item as they mistakenly thought in 1948 but a mix of 4. They missed the existence of 2 active cobalamins for 11 years and ignore it after that, basically defining them out of existence into a footnote of history nobody reads. Some people need ALCAR instead of LCF, about 10% of those for whom it makes a difference.
     
    Last edited: Aug 11, 2014
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  13. Bansaw

    Bansaw Senior Member

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    Thanks Fredd, I see my doctor tomorrow and I printed out the first two pages of the Deadlock protocol PDF file. She's got my gut working well but not addressed my neurotransmitters and adrenals.

    I just found out that a well-known CFS doctor (mentioned on these forums actually) is in my city of Charlotte NC. Dr. Lapp. Although it looks like he uses a drug called Ampligen. I don't know if he knows of the Methylation cycle or not.
    Often if doctors are not familiar with the protocol they will not agree to its use.
    It does seem he recommends B12 injections though.
     
  14. whodathunkit

    whodathunkit Senior Member

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    @Bansaw: along with @sueami, IMO the best you can hope for is a doctor that will take you on as a partner in the process, and not sneer at any good results you get just because they're from supplements/prescriptions not suggested by him or her. I got lucky and have two such doctors. But I have to do my homework and make my presentations effectively, or they won't work with me, either. They don't take on faith the pearls that fall from my lips. ;)

    Know enough to be convincing, and if you can find the right professionals it can be a rewarding experience. Good luck!
     
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  15. Bansaw

    Bansaw Senior Member

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    There's a whole "pride" thing going on with doctors that they feel pressure to know about everything. Its such a huge area of knowledge that they cannot be confident of knowing everything.
     
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  16. whodathunkit

    whodathunkit Senior Member

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    @Bansaw: Yep. One of my doctors visibly (if internally) struggled with the fact that her treatment hadn't done nearly as much for me as methylation, but she overcame it very quickly to become happy for me; the other doctor couldn't have cared less as long as he helped, and is still just very happy that I'm feeling better. I just saw him on Friday.
     
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