still doing much better methylation connection? rich?

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Jul 19, 2008.

  1. bigmama2

    bigmama2 New Member

    hi. long story short-- i have been very sick w CFS for YEARS, and in the last 2 months i have greatly improved. the timing coincides with when i started taking methylation supps. but they are a different version than Yasko or Rich's simplified protocol. It is the treatment rxed to me by a place called Pfeiffer Treatment Center (chicago). they did blood tests on me and said i have high histamine and am also very likely an "undermethylator".

    the supps contain- vits a,c,e,biotin, b12 (methylcolbamin form), b-6, and a form of b-6 called P-5-P, chromium, and methionine.

    they do not contain any folate.

    when i first started taking them i DID experience the nasty detox hungover feelings. pretty bad a few days. but then my energy started improving- big time. my CFS has gone from moderate/severe to mild. feels like a miracle. this improvement has held for 2 months so far.

    I am naturally veery skeptical by nature. and i always thought that alll this methylation stuff was kinda wierd, but now i am really wondering if these supps are what have helped me so much. there have been no other changes in my life that could account for this improvement. well, just one- i stopped taking Valtrex aroound the time i started the new supps. it has to be one or both of these things.

    my brother who is has also been sick w cfs for many years may try my supps, i hope they help him too.


  2. richvank

    richvank New Member

    Hi, bigmama2.

    This is great news! I'm happy to hear that the Pfeiffer treatment appears to be helping you so much.

    What dosages of methylcobalamin and methionine are you using?

    No folate, eh? That's interesting. I would sure like to know what your polymorphism situation is in the DHFR, SHMT, and MTHFR enzymes. I suspect that you don't have many of them in those enzymes. That could explain why you don't need active folate supplements to get your methylation cycle going. Most PWCs seem to need either folinic acid or 5-methyltetrahydrofolate (FolaPro or Metafolin) in addition to active B12.

    Maybe someday we will have data on these polymorphisms to compare with treatment requirements and outcome. In the meantime, it sure seems as though what you're doing is a good thing for you to do! I hope your improvement just keeps on improving.

  3. bigmama2

    bigmama2 New Member

    so much! i dont have the bottle of supps here with me so i cant answer the question of dosage right now, but i will get back to you on that. and about the enzymes and testing you mentioned- i have not had any of those tests done, so i dont know.

    its interesting that Pfeiffer ttreatment center has a different take on all this than you and yasko.

    if i can get my brother to take my supps for a few weeks, i will report back on how it goes.

    and by the way- i have a friend who is on full yakso protocol for mild "pre-cfs-like" health problems, and her daughter is on full yakso for aspbergers. both are doing better! especially the daughter. her improvement is noticible. they ve been on it for a while now- maybe like a year. they did have the yasko testing done.

    thanks again
  4. richvank

    richvank New Member

    Hi, bigmama2.

    Thank you for the information. Yes, the Pfeiffer Institute does look at things a little differently. I haven't quite figured out how their stuff fits with what Yasko and I have been doing. Some PWCs have written me that their symptoms don't match up with the Pfeiffer lists for either under- or overmethylators. I've tentatively been thinking that they are dealing with people who have tendencies in one direction or the other, but perhaps not people with an actual block at methionine synthase. But that's just a guess. I think Amy Yasko has associated under- and overmethylation with certain polymorphisms in the COMT enzyme.

    I'll be interested to hear about your dosages, and about how it goes for your brother, if he decides to give it a shot.

    Thanks for the info about the people on the Yasko treatment.

  5. simonedb

    simonedb Member

    werent you using that like mamadove too?
    are you still using it and what dose are you at?
  6. bigmama2

    bigmama2 New Member

    hi. yes i'm still on LDN. dose of 3.5 mg. been on it for months-- like 6 or so months. didnt feel much improvement. unless it takes many months to build up in the system????? things are going so well for me right now i am not going to change anything. i dont think the ldn is what is helping me, but in case it is, i'll keep taking it.

  7. simonedb

    simonedb Member

    for sharing
    but how do you know its not wht is helping you if you are feeling better? some say they didnt know it was helping them until they go off and feel worse, like how some folks are on antidepressants or ad/hd meds.
  8. simonedb

    simonedb Member

    just did a google search to try to find more people with cfs/fm who are doing LDN to get more support and the above link has great blog and other links about it.

    I am just trying to figure it out because I have done all the supplements, alternative rx, diet etc over the years and keep trying new ones of course but so I am skeptical about the magic bullet from that approach. But i have eaten healthy and taken walks for years and tried many things.....
    Do let us/me know if you go off LDN and still feel great, tht would be interesting test.

    I think if LDN works for me eventually I will be more psyche about the other stuff, diet and supplements cus think it would be complimentary and work better.