1. Patients launch $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!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

14 months in....update

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by determined, Mar 23, 2012.

  1. determined

    determined Senior Member

    Messages:
    295
    Likes:
    58
    USA: Deep South
    I started taking extremely tiny doses of methylfolate and mB12 about 14 months ago. (Here is how I started: http://forums.phoenixrising.me/show...ERY-low-very-slow-results&p=173804#post173804 )


    I have maintained my improvement in energy levels. My remaining problems are fibromyalgia-like pain (this makes it difficult to increase exercise since its so easy to injure myself), anxiety, and chemical sensitivity.


    Im writing to mention something that happened in the past few months with the supplements. I happened to notice that my mB12 capsules had passed their expiration date, by 6 months or so (I got them several years ago but was too afraid to start for a few years).

    So, I ordered new bottles of both methylfolate and mB12. Keep in mind that at the doses I take, one bottle of each would probably last me the rest of my life, since I take tiny specks of a tablet/capsule, then dilute them in water. I started the new bottles and was surprised to experience some of the same start-up reactions I had from a year ago sore teeth, headaches, tired (but not necessarily in a CFS-kind-of-way). My conclusion is that even at my tiny, diluted doses, these supplements are doing something.

    To be more concrete, Ill explain how the supplements changed my work experience. Ive had the same (demanding) part-time job for 7 years. Before the supplements, it was a struggle. On my days off, I would have to lie flat several times a day to try to manage the fatigue/weakness. Before going to work, Id lie flat for at least an hour. Since using the supplements, I only lie down if I am sick (like a regular person).

    I cant say I have the energy of a normal person, probably not even close, but the improvement is significant. Id love to work more, but my chemical sensitivities are the main problem holding me back Id love to solve that puzzle!

    So, my take-home message is: I think the supplements really can/do work..and check those expiration dates!!
     
  2. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    You must have a VERY sensitive genetic profile. The thing I worry about for you is taking things that you maybe shouldn't be, just to stay on a protocol. If you can ever get your genes done, it would help you enormously! Keep ticking away, though. You're doing a good job Determined!

    Angela
     
  3. determined

    determined Senior Member

    Messages:
    295
    Likes:
    58
    USA: Deep South
    I actually have done the 23andme gene testing. While I don't think it's a total explanation of the chemical sensitivity, I am a "poor metabolizer." I also am homozygous for the MTHFR A1298C SNP. One of my aunts had severe chemical sensitivities as well, but noone else in the family had full blown CFS.

    Can you be more specific about the things that I'm taking, that maybe I shouldn't? Do you disapprove of the methyl form of B12? The methylfolate? Or both? Can you explain why? Thanks!!
     
  4. caledonia

    caledonia

    Messages:
    2,976
    Likes:
    1,570
    Cincinnati, OH, USA
    I've had great success clearing up my MCS by taking Thorne Labs multivitamin which contains 5 methyltetrahydrofolate, methylcobalmin and adenosylcobalamin. I also had clearing before just taking Folapro. I'm taking smaller amounts like you. i haven't really had an improvement in energy though. I have the C677T SNP (heterozygous).

    I haven't had a 23andme profile done, just the normal MTHFR test you can get from Quest. How would a 23andme test benefit me at this point in time?

    I thought Rich and Freddd were going to have some people who were successful with their protocols get tested and see what their SNPs were and which protcol worked for which SNPs, but I haven't seen that yet.
     
  5. determined

    determined Senior Member

    Messages:
    295
    Likes:
    58
    USA: Deep South
    We also should keep in mind that there are plenty of healthy people that have these same SNPs.

    Caledonia, I'm not sure how the testing would help you. I did enjoy the process though. There is a lot of information on "deep ancestry" which I find really interesting too.

    Caledonia, how bad was your MCS? Do you still have an increased sensitivity? Are you able to go places with no problem? Did you ever take antibiotics for presumed lyme disease? I have always mentally tied my MCS to my gut microbiome......when there are changes there, I usually experience an intensification of MCS.

    Thanks!
     
  6. caledonia

    caledonia

    Messages:
    2,976
    Likes:
    1,570
    Cincinnati, OH, USA
    At one point my MCS was so bad I couldn't go out of the house. Now I can go anywhere, no problem, although I still have problems with large exposures like a freshly painted room or strong aftershave. If I were able to take more of the methylation supps, I think even that would clear.

    However, if I stop taking the Thorne multi, my MCS comes back.

    I've never taken antibiotics for Lyme. I'm not sure what would be going on with the gut and MCS. Maybe something that limits absorption of B12/folic acid?

    MCS is caused by lack of glutathione in the liver. Gluthione is used to deal with any toxins you encounter.

    Actually, I'm confused why you would have energy, but not improvement in MCS. While I've had improvement in MCS, but not energy.

    Rich has said that the liver is the first place to build glutathione once you start taking methylation supps.
     
  7. determined

    determined Senior Member

    Messages:
    295
    Likes:
    58
    USA: Deep South
    Yes, it is puzzling that we have different reactions. A very complicated disease, indeed!

    At my worst, I couldn't go anywhere either - for several years. Taking one whiff of the air coming out of Target, for example, was like slamming against a brick wall.

    I'm like you now....I can go pretty much anywhere, but new carpet or fresh paint is something I have to avoid still. And, when I'm sick or there is some change in my gut flora, I have trouble in stores too (but I can still go in). And, most importantly, I'm able to work part time, which I LOVE.

    You mention that you can't take a higher dose of the supps. What happens if you do?
     
  8. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    Look here: Methyl Cycle Genomics.

    I customized my cocktail based on 23andme results and the info on the link above.

    This spreadsheet is also invaluable.
     
  9. caledonia

    caledonia

    Messages:
    2,976
    Likes:
    1,570
    Cincinnati, OH, USA
    I'm taking an SSRI. If I take a higher dose of the supps, I start making serotonin, a potential conflict. This was determined by self muscle testing. I'm planning on attempting to go off the SSRI, while increasing methylation supps later this year after I've fully recovered from a failed adrenal supp experiment (great way to waste a year :(

    But the good news is if I'm getting responses like this on small doses of methylation supps, larger doses should be even better.
     
  10. caledonia

    caledonia

    Messages:
    2,976
    Likes:
    1,570
    Cincinnati, OH, USA
    Hi Nanonug - the info at the heartfixer website is excellent - the best explanation I've seen for SNPs and how to deal with them.

    I'm not sure what to make of the chart though. Can you explain how it's helpful?
     
  11. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    The spreadsheet tells you how to check for the mutations on the 23andme website. For example, for the MTHFR C677T, the SNP to use on 23andme is rs1801133. Then, once you get your genotype from 23andme, the spreadsheet tells you whether you have a mutation (+T) or not (-C). For example, if your genotype is TT for rs1801133, it means you are homozygous for the mutation.
     
  12. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    its true that healthy people can have these defects but if you look at the constellation of them, that's usually another story. Also, they may be ok at 20 or 40 years old and not sick with CFS but the chance for Parkinson's, ALS, cancer, MS, dementia, blood clots, strokes, etc., goes up substantially anyway with age and time and having defects like this increases it even more. I doubt anyone escapes a full MTHFR A1298C defect, unless maybe you had no other defects in the pathway.

    In all honesty, I would focus on treating specific defects as they have seemed to rear up time and time again with me, my kids, and several friends. The MTHFR A1298C, CBS C699, NOS, and ACE. If you look at this line up, these are some of the snps they've already researched quite thoroughly anyway. I'm sure more will pop up with time but what we know of these guys is that trouble rises. But having someone well versed in this medicine has been crucial for us and we wouldn't be healthy or "normal" (in my kids case) without it!

    Unless your brain operates on Dr. vank's level, I don't see how you can treat them all well, without having complications, on your own.

    Angela
     
  13. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    The "treatment" for mutations is essentially algorithmic, of the type, "if A, then B else..." This is the kind of thing my somewhat autistic brain does well. On the other hand, my wife has a great deal of trouble with this type of thinking. However, relying on the collective wisdom of the people on this forum, I think it is possible to create a decent individualized protocol even for people that rely more on the right side of their brains.

    In any case, without actual measurements of metabolites, I don't think it is possible to optimize a treatment plan just by looking at genotypes. After all, one needs to consider actual epigenetics on top of genetics.
     
  14. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    That may work well enough for the many who don't seem to have trouble tolerating the larger doses of so many things (or for that matter, methyl groups) but for those of us like Determined, who need crumbs to start and find it a victory to get up to 1/8 of the dose that most people use, this sort of logic doesn't really pan out so well. I'm not speaking to the general group here when I say that someone with the full MTHFR 1298 will have trouble figuring out the correct regimen. I'm speaking directly to the person who made the post. That also accts for epigenetics since obviously, his or her toxic threshold is likely to be already extremely high, just based off the reaction to each treatment.

    I see a theme here time and time again where a cookie cutter treatment plan is suggested for the whole, not considering the stragglers who simply won't do well on this herd philosophy. I think we need to consider the individual, too. Collective wisdom or not, in my experience here, few seem to agree on most things, whether its magnesium and potassium or what type of folate and B12 absolutely EVERYONE should take.

    And while I agree that biochemical testing is also important, if I had to choose between genetics testing, which will never change and reveals a strong propensity for many things, including need or sensitivity regarding my treatment regimen and the biochemical testing, which will change at the drop of a hat depending on any new supplements, what you ate for dinner, and the dental filling change you had last Friday, well, I'd have to choose genes.

    Angela


     
  15. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    One of my neighbors, a compound heterozygous for MTHFR 677 and 1298, exhibits this exact same problem, of being very sensitive to small amounts of anything that might benefit her (ex, methylfolate). She always needs to start very slowly whatever it is. So, I totally understand where you are coming from. While genetics might suggest the need for increased levels of methylfolate, for instance, it doesn't say anything about how much one should take. At the end of the day, that is up to each individual to figure out.

    I agree with you! That's why genetic testing is important. And that's why algorithmic guidelines can be created, of which the heartfixer website is a perfect example. Interestingly enough, however, richvank open label study with Dr. Neil Nathan seems to suggest that individualized treatment is not so important and that many people with ME respond decently to the simplified methylation protocol.

    I am afraid I have to disagree here. Gene expression (epigenetics) appears to have at least as much importance as genetics. In my case, for example, my only MTHFR mutation is the somewhat less important A1298C (heterozygous). However, to feel better, I have to take tons of methylfolate. For this reason, I decided that it would be a good idea to do the Doctor's Data Methylation Panel and see what the heck is going on (I am still waiting for the results.)

    PS. Collective wisdom is born out of disagreement. If we all agreed on everything, no one would be able to learn anything from each other. As such, I don't see lack of consensus as being a bad thing.
     
  16. caledonia

    caledonia

    Messages:
    2,976
    Likes:
    1,570
    Cincinnati, OH, USA
    Nanonug,
    How does the Heartfixer protocol differ from a full Yasko protocol? Are you taking Rich's simplified methylation protocol and just adjusting things based on your 23andme test, or are you doing something closer to a full Yasko?

    I'd given up trying to figure out Yasko (plus the expense), but I actually understand the info on the Heartfixer site.
     
  17. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    My guess is that Heartfixer essentially uses the Yasko protocol. But I could be wrong!

    It's mostly Rich's simplified protocol tweaked by the 23andme results (such as, for example, screw ups in the SHMT and MTHFR genes). There are also screw ups in other non-Yasko genes I am trying to address.

    Indeed, the info on Heartfixer is great!
     
  18. determined

    determined Senior Member

    Messages:
    295
    Likes:
    58
    USA: Deep South
    I agree that the information on the heartfixer site seems great...but is it accurate and backed up by more than observational studies? I think that we are getting very good at detecting the various SNPs, but lagging quite behind in solid evidence of what many of them mean.

    Having said that, I actually do believe that we simply don't have the time to "wait" for the many studies that will be necessary to sort all of this out. And the funding is probably not there to do these sorts of studies either. Even though I am incredibly sensitive to various supplements/medications, I have always operated on the assumption that I must "do something," I must try things, however slowly and carefully. It's hard to argue with success. I have found things that have greatly improved my level of function. Perhaps there is some as-yet undiscovered down side to the things I have done. But the positives greatly outweigh any negatives I've experienced thus far.
     
  19. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    Yes but at the end of the day, if you have the COMT +|+ and the VDR Taq -/-, or something similar, then its no mystery that someone won't tolerate something. Also, someone with the double MTHFR will inevitably be sensitive since anything that increases methyaltion will undoubtedly increase mobilization of toxins, as Dr. Vank always suggests.

    I didn't see that his study suggested everyone could be treated the same. He proved that the tests would normalize but that did not mean the patients recovered. Some recovered fully while others recovered 50% and others much less. This is where the variability came in as well. Also, he made references about how Dr. Nathan did a very good job of keeping them on track and not quitting. Many of them required much lower doses than others, etc. So where you see that individual treatment wasn't as important, I see the shades of gray.

    Also, I don't discount epigenetics in the crusade to get well. I am merely pointing out that these are highly variable and transient. You could have taken the tests two months later to find very different results, no so with the genes. As for your need for more active folate, if you had the entire methylation panel done and aren't merely piecing it together with a few of the genes, there may be transport issues, or something like Freddd. Its true that the genes don't tell us everything, I only want to point out that they do tell us more than you realize, as mentioned above, and they are constant. If I had to choose between two tests, I want the genes. If I can afford both, then its the methylation biochem panel as well.

    As for consensus. You are funny! Thankyou, I got a true chuckle here. You seem to be backtracking away from your own point here. You were using "consensus" as a way to make the point that we could all construct are own programs from this collective wisdom. I pointed out that this collective wisdom didn't really exist and you now use this as a way to argue that differing opinions all contribute to our diversity. So I thankyou for coming back to my original point. while I appreciate diversity and so many different life experiences and views, I certainly couldn't create a good plan based on this. That has to be trial and error for the many without genes but for me, its a targeted plan since I have both my biochemistry and genes. Having both has shown me what seems to be more beneficial and for me and my family, and that has been the genes.

    If you have them both and can speak based on true experience, I welcome that. But if you don't, that brings me back to my concern over the collective wisdom. So many seem to make assertions basd on a vague feeling or their own experience, or how they perceive it, yet don't have the very data they dismiss. When you have the data along with a good practitioner who is able to interpret it, its truly wonderful!

    Thank you for your input!
    Angela

     
  20. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    Based on the info I got from watching the Sweden videos, I believe that in the first 6 months everyone got the same treatment. I guess Rich could disprove if he's around. Rich? :)

    Well, this is what one would expect from any intervention, no?

    Ah! Remember when I told you I had a somewhat autistic brain? I was not joking! Things for me tend to be much more black/white than grey. I'm an applied science dude, not a poet! :)

    Well, 23andme covers at least 24 out of 32. Not too bad for the price I paid, considering that I get access to almost 1 million SNP's. For example, thanks to 23andme, I know I have a homozygous screw up in the PON1 gene (cannot tolerate organophosphates/pesticides - all food is organic from now on). I also know that I am heterozygous for a variation in the PRF1 gene, leading to decreased perforin effectiveness.

    Hey, some people believe that laughter is therapeutic. I'll PM you the bill for the treatment! :)

    Are you familiar with prediction markets? For example, Intrade currently shows "Barack Obama to be re-elected President in 2012" at 59.9%. This is a result of "collective wisdom". However, there is no consensus.

    Nothing in life is deterministic. The best we can do is try to achieve outcomes that, on average, are better than the alternatives. This is why the probabilistic "collective wisdom" is not only sufficient but, in my opinion, the only possibility.

    This discussion is starting to sound seriously off-topic and to be honest with you, I don't know if it adds anything of value to the group. Maybe we should just agree to disagree on the "collective wisdom" thing and move on?
     

See more popular forum discussions.

Share This Page