1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

A B2 story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by stridor, Sep 7, 2013.

  1. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    863
    Salt Lake City
    Hi Stridor and Howirecovered,

    It'a about time for a design I have worked on for a long time, starting back in the late 70s. I did some consulting for a new HMO designing their computer system. The HMO director had the computer as his brainchild and was doing the design. After suddenly retired for health reasons, I was called in to review what was going on and get the new director up to speed. We explored some data mining ideas and rapidly ran into space problems. Megabytes used to be considered a lot of room. The type of program I had in mind needed gigabytes or more for the data. Now anybody can buy disk space by the terabyte.

    The type of program I want to write and have partially designed would take all the SNPs and other information, everything we are already working with; symptoms, side effects, therapies and so on and see what patterns match up. So we might be able to answer the question of why persona x and y react in opposite ways to a given item.

    Suppose we are 10 or 20 years ahead of our time :D

    Suppose it is more like 100 years ahead of our time in certain ways.

    For instance, one of the problems for all of us here is that 60+ years of research has been done on folic acid and CyCbl/HyCbl. As those are not kinds the body actually works with, they produce different results with everything, other vitamins for example. B1, b2 and b3 and what they do with the REAL b12s, AdoCbl and MeCbl and the real animal folate l-methylfolate. It gets that basic and our nutritional science has no idea at all. Most all the data in recent decades is contaminated by folic acid, CyCbl and HyCbl. It is near impossible to get a study approved using 3 substances. How long until they allow one with all four of the deadlock quartet on sick people. Testing it on well people will only show it does nothing for them. Then they will freak out at the thought of adding potassium, titrating methylfolate, having all the basic vitamins and minerals and also titrating some of those for adjustments. They just don't do studies of a combination of 30 or 40 things in floating ratios.

    Something like the Active B12/folate Protocol is impossible to come out of the medical industrial complex because nobody wants $50 worth of vitamins turned into $1000/month with of medical foods and they won't do they research if billions and billions in payoffs are not there. Also, it is just plain against the whole study a single substance" idea. That doesn't work at all. Nutrition isn't medicine. We are not looking for one miracle drug to overcome whatever is happening, like an antibiotic, to make us well. Instead we are looking for how to replace the real vitamins removed from our food and replaced with fake vitamins that do so very little other than microscopic responses. THEY DON"T HEAL. All this to be replaced with drugs to fix 1000 problems with maintenance pricing at that magic $500/month per drug price point

    Anybody every have antibiotics here? I have. When they work, they work quickly, no lab tests looking for micro results to see if the person got well. When they don't work is when they have to look closely to see that is going wrong. People can get well with AdoCbl, MeCbl, L-methylfolate and LCF plus all need cofactors in the correct balance and there-in lies the problem.
    .
    Last edited: Nov 23, 2013
  2. howirecovered

    howirecovered Senior Member

    Messages:
    127
    Likes:
    30
    yep, it's time! we just need some healthy people to get it going... I've been incapacitated by a migraine for the past three days brought on by a little bit of vitamin D. That's part of the problem - most of the people here on PR are sick and broke from so many years of being sick.
  3. Sea

    Sea Senior Member

    Messages:
    648
    Likes:
    659
    NSW Australia
    Not too sure if higher serum B12 is an indication of a positive effect or implies that the body is less effective at transporting the available B12 into the cells
  4. stridor

    stridor Senior Member

    Messages:
    302
    Likes:
    199
    That was interesting about the Harvard study - never saw that one as I have the wild type.
    When you did your search you may have seen the Indian study that focussed on rs602662. This SNP seems to be more important (?) in terms of prediction of B12 levels and a ++ variant = lower B12 levels. I am heterozygous for this one.
    We have to be very careful with the type and quality of information that consumers are passing back and forth. We have to appreciate that most of us are "in over our heads". Not to say that we can't help each other but teasing the information out of our 23andme results and applying it to ourselves and others is fraught with peril.
    brad
  5. howirecovered

    howirecovered Senior Member

    Messages:
    127
    Likes:
    30
    I had the same thought Sea... but no way of knowing if it's true. Hate the fact that 99% of these studies cost money to see the full text!
  6. howirecovered

    howirecovered Senior Member

    Messages:
    127
    Likes:
    30
    I couldn't agree more, this particular snp really brought it home. There is even a typo in snpedia.com on http://www.snpedia.com/index.php/Rs492602 where they misidentify the allele as C instead of G. anyway, that's how I read it... could be mistaken.
  7. Sea

    Sea Senior Member

    Messages:
    648
    Likes:
    659
    NSW Australia
    If you find a study that you think is worth reading post a link to it in the thread "would you like to request a paper?"

    http://forums.phoenixrising.me/index.php?threads/would-you-like-to-request-a-paper.9212/

    There are some members here with full access to lots of different journals and happy to help.
  8. Sea

    Sea Senior Member

    Messages:
    648
    Likes:
    659
    NSW Australia
    I don't see a typo there, though I could be missing it. Do you know about the orientation that needs to be taken into account? This snp is reported in minus orientation and all 23andme snps are reported in positive.
    Valentijn likes this.
  9. Sea

    Sea Senior Member

    Messages:
    648
    Likes:
    659
    NSW Australia
    I agree Brad. I like to read as much of the research as possible before coming to any conclusions
  10. howirecovered

    howirecovered Senior Member

    Messages:
    127
    Likes:
    30
    nope, that's over my head. just comparing the study abstract w/ the snpedia text:

    snpedia: "Women homozygous for the rs492602(C) allele (in dbSNP orientation) had higher B(12) levels."
    study abstract: "Women homozygous for the rs492602[G] allele had higher B(12) levels."
  11. Sea

    Sea Senior Member

    Messages:
    648
    Likes:
    659
    NSW Australia
    Ok, no that's not a mistake.

    Here is a partial explanation by 23andme. It is important to understand if you want to research different snps otherwise it will lead to lots of confusion.

    https://customercare.23andme.com/en...-strand-does-23andme-report-for-snp-genotypes

    Our DNA has two strands. (not to be confused with the 2 alleles reported where we get one from each parent)

    If there is a C on one strand there is always a G on the opposite strand and vice versa.
    If there is an A on one strand there is always a T on the opposite strand and vice versa.
    They always pair up in that way.

    Reporting on snps can come from either strand (noted as plus or minus). 23andme report on the plus strand, dbSNP and other research sometimes report on the plus and sometimes on the minus. So you always have to check what strand is being reported to compare results.

    If the research you're looking at uses the positive strand then the allele is the same as the one in your results from 23andme.
    So if they're talking about a C, that matches C in your 23andme data
    If the research you're looking at uses the minus strand then you have to change your 23andme allele to the allele from the opposite strand
    So if they're talking about C, you'd be looking for a G in your 23andme data

    When the possible allele options are in one of these combinations C/T, G/T, A/C or A/G it is very simple to see whether the research you're looking at is reported the same or opposite.

    For example say the possible allele options are C/T
    If your 2 alleles are CC or TT (homozygous) or CT (heterozygous) then you know they're using the plus strand because your results match those letter options
    If your 2 alleles are GG or AA (homozygous) or AG (heterozygous) you will know they're using the minus strand because your results don't match their letter options and you have to swap for the allele on the opposite strand)

    The really confusing ones, known as ambigous flips, are when the possible allele options are C/G or A/T. They're confusing because the opposite strand still really has the same options G/C or T/A.
    So for example with the options C/G
    In this case your 2 alleles will be CC or GG or CG whether the research is reporting on plus or minus. In this case the only way to determine whether or not you have the mutation being discussed in the research you're reading is to find out if they're using plus or minus.

    There you go, clear as mud?
    Valentijn and Violeta like this.
  12. howirecovered

    howirecovered Senior Member

    Messages:
    127
    Likes:
    30
    wow, that's painful... I'm going to need a lot more chelation before I can retain that for more than five minutes:(

    at least I know where to come back for the explanation when I need it, so thanks Sea!
    Sea likes this.
  13. Brad

    Brad

    Messages:
    7
    Likes:
    3
    @Freddd
    Just a bit of an update. I am doing better and am taking LCF 500 mg/twice daily. Fog has been improved and further responded to ALA 100 mg that I take at bedtime since the initial response is an increased fog (moving the bit of Hg I have left?).
    I have potassium on hand and will introduce some exercise in a few more days. For the first time I am optimistic that I will win the fight against fog. I owe it to you. I think that the main difference between you and me is that my nerve damage was central....and I lost my adrenal but I think that was the Hg. brad
    howirecovered likes this.
  14. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    863
    Salt Lake City
    Hi Brad,

    I think that the main difference between you and me is that my nerve damage was central....

    If you have a lot of central damage then you are very like me. I have demyelinations in the cord and brain. I was almost in a wheelchair 6 years ago until I stopped the progression of Sub Acute Combined Degeneration. I've been there and BACK, just like Bilbo.

    I know it may come as a surprise but here it is. There is a straight line of continuous symptoms leading from the pain and neurological effects of FMS to the pain and neurological effects of SACD. At this point I would be inclined to say that FMS is an early unrecognized form of SACD. Good luck. It takes all 4 of the deadlock quartet plus omega3, zinc and a few others to heal the CNS to some degree.

    Another thing to investigate for you Brad is Pantithine, the active form of pantothenic acid.

    This whole thing is complicated and often dependent upon timing. This whole program is only a first approximation. It's like the early AIDS treatments with hands full of pills at critical timing. I'm sure it will get simpler over time but right now we are on the bleeding edge doing what is impossible previously.

    For me, I had to start the exercise slow and easy. I overdid it time after time and crashed over and over. I worked up from 500 feet to 5 miles of walking daily in a year. The carnitine appears to turn on muscle cell and mitochondria proliferation if a demand is created by exercise. Good luck.
    howirecovered likes this.
  15. Brad

    Brad

    Messages:
    7
    Likes:
    3
    @minkeygirl
    I had to register again and I have lost the ability to continue our conversation. brad
    minkeygirl likes this.
  16. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,138
    Likes:
    1,350
    Left Coast
    There's a way I can invite you in. Let me figure it out.
  17. Brad

    Brad

    Messages:
    7
    Likes:
    3
    @Freddd
    Just giving you an update. As you might have predicted, I have indicators the the nervous system is "awakening". The 2 main ones are pain which started in my ribcage in my back but is more generalized now. The quality of discomfort has morphed somewhat and now feels pretty much identical to the pain one gets after beginning an exercise program after a long period of inactivity. I also have some tremor...mostly my hands but I have also had that "shaking inside feeling".

    I tried it without the afternoon mB12 shot and there was quite a difference. Not just to how I feel in the evening but also, in the morning upon arising. I am going to take some sublingual with me to take after lunch to tide me over until I can get home for a shot. I have an increase of fog that starts right after lunch.

    So, I have no intentions of stopping. I believe that 80% function is just a whistle stop on the way to 90. I am in the process of finding out if the B2 can be decreased further. I am currently at 100 mg/day.
    Thanks for your time and input. Your message for people to abandon their carefully nursed ideas and theories and just try the protocol straight-up was not lost on me. Thanks man. brad
  18. howirecovered

    howirecovered Senior Member

    Messages:
    127
    Likes:
    30
    very happy for you Brad! 80% is awesome.

    I still have virtually no exercise capacity and would estimate I might be at 65 or 70%. Really hard to tell since I'm always pushing on my methylation or chelation treatment or suffering from business or family stress.

    I actually have the ability to exercise, it's the side effects (crashing) that I can't live with.
  19. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    863
    Salt Lake City
    Hi Howirecovered,

    I had to build up slowly. I walked and added 50 feet a day. I worked out with 2 pound dumbbells. The big change happened when suddenly in two steps; first when I got the muscle layer started healing and second when the water started pouring off and my muscles started growing. LCF doubled my capacity overnight prior to building more mitochondria and then getting the Metafolin up to a level that all levels of healing were turned on and healing. It was after I had worked up to walking 5 miles (50 ft increments) that I really stopped crashing in the same way. Then things progressed very rapidly.
  20. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    863
    Salt Lake City

    Hi Brad,

    It's good to hear this. Are you doing subcutaneous injections? A 7.5-10mg injection SC will keep the serum level about the same all day compared to the hour peak of am IM injection. What I found was I had to stack one incremental improvement on top of another, for the past 10 years. The latest incremental improvement came from decreasing the B1, B2 and B3. The whole structure is quite delicate. I'm glad I could be of help. Keep on finding those increments. I found that the neurological and muscle healing involved lots of changes of perception and how things work. Muscles that have been shrinking without enough nerves feel tight and sore when awareness comes back to them. For me it was a major part of healing. The "shaking inside" has been described a lot and I've had it intermittently. To me it has felt like chakra activations mostly. Hard to be sure. They were all transitory during various parts of healing. Best of luck.
    Brad likes this.

See more popular forum discussions.

Share This Page