Huge improvement. HUGE.

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Mar 9, 2007.

  1. deliarose

    deliarose New Member

    It's a tacky title for a post, makes me sound like some kind of cheesey salesman, but it's also true.

    I started using supplements to help my methylation process per Rich Van Konyenburg's theory 3 weeks ago, and I'm just coming on in leaps and bounds.

    Most of the improvement seems to be in my cognitive function. I'm retaining information, recalling memories that I haven't thought of in forever, and generally it's like my awareness is returning.

    Hard to describe really, but after 3 weeks I'm pretty confident that it's a big improvement, and it's down to these particular supplements. Namely Folapro, Intrinsic B12, TMG, Sam-e, and a sublingual B12.

    Also, I have been able to come off the sleeping meds that I used for 6 years. I had been wanting to come off them in light of the progress I made on transfer factor, but each time I tried to come off them or wean off them, I felt worse.

    This time, I didn't seem to have any problems, so that's a huge plus. Also, for what it's worth, I just got back from a trip to N. California, where I drove 1,700 miles in 6 days.

    Anyway, I know Rich's protocol can be daunting, but I, for one, wish I had dived in 6 months ago when I first started reading about it.

    I know not everyone will benefit from the methylation supplements, but it does seem like an easy thing to try empirically -- without the genetic testing.

    Hope this helps someone. I think (hope and pray) that I am ready to quit the board and move on with my life and get down to earning some money!

    Best
    Delia
  2. alaska3355

    alaska3355 New Member

    That is great news! I hope you can continue to improve and get that job!
    I have read some of Rich's website as well (for my son) and I think he has a lot of interesting info. My son's brain fog seems to be going away on its own, so we haven't tried the protocol. But we have done B12 injections- maybe that was the key.
  3. clerty

    clerty New Member

    To read some good news on this site I am so happy for you I will be looking into this and perhaps more of us might be posting news like yours
    this is the best news I have heard for ages I am smiling as I type this THERE IS HOPE !!!

    Clertyx
  4. AllWXRider

    AllWXRider New Member

    My nurse friend recovered from EBV and it took her 12 months from start to finish. One morning she woke up and WOW, I was really sick.

    She found out that she has Lead too. She has to chelate this out or EBV will come back and visit again. She also remodels old homes. I think that this is where we got the Lead from. Don't sand old paint without a suit and dust masks!

    Best wishes...and please don't leave us!
  5. Shalala

    Shalala New Member

    wow ... good for you. ((((((( YAY Della )))))))

    I bought Sam-E but read the info on it and was afraid to take it. I will ask the Rheumy about it. Everyone that has taken it seems to be impressed. I am making a HUGE list for the Rheumy appt. in April.

    I am still struggling with this Lyrica ... oh my.
  6. Aelf

    Aelf New Member

    That's awesome. I've ordered the supplements and am going to try it myself in about a week when they show up. I'll let you all know how it goes for me :)

    C
  7. clerty

    clerty New Member

    Hi

    can you get these in stores I might even order them online ?
  8. Aelf

    Aelf New Member



    I ordered mine from www.holisticheal.com

  9. Diva55

    Diva55 New Member

    Hi Deliarose
    It's so great to hear your good news!

    Although I mainly have FM, I feel that I have my FM reasonably controlled with my "protocol" but the CF side is getting worse, so I'm looking into what can be done to help that.

    It is inspirational to hear good news and hope others can benefit from the things you have tried.

    Best wishes
  10. Catseye

    Catseye Member

    I'm glad to hear it, deliarose. I have been doing the methyl donors, too. Cheney had recommended them, especially MSM. It is effective against yeast and inflammation and helps the liver. I'm doing about 3-4 grams per day and can tell when I go without it, you may want to consider adding it.

    I looked at Rich's protocol and it's pretty much what I've been doing. I got most of the supplements recommendations from Cheney and Teitelbaum and the only things I'm not doing that Rich listed is the Methylation Support Nutriswitch Formula and the Intrinsic B12 Folate.

    For step 6 of his protocol, if you still have bad brain fog, you may want to see my "neurotransmitter precursors" post from Jan 18. I listed the precursors for the neuros which have really helped me think and read better and they dispelled most of the fog. TMG is one of them!

    Also, I'm doing SAMe for methylation and remyelination, which he talks about in step 17. I'm doing B12 injections for remyelination, too. I wish I could find some methylcobalamin instead of the cyanocobalamin. That's pretty important since the liver does not normally convert regular B12 forms into enough methyl cobalamin, which helps with remyelination.

    I see he likes hydroxocobalamin more than the methylcobalamin, but I can't get either one right now, anyway. And since I'm improving very steadily, I'm in no hurry to change things. I've been feeling good and am finally optimistic about getting back to normal after so much suffering. I haven't been on the board much lately because I am getting a life back. Not my old one, I wouldn't want that, but a new one.

    It's a shame if people won't try these things. These metabolites are needed by the body but since they categorically qualify as "supplements", many people will be put off even though they are in a separate category from other supplements like herbs.

    The only thing left to do I'm going to do is organic acid metabolic testing to help narrow down supplements and see if I'm still lacking in metabolites. I've ordered my test kit and it should be here next week.

    good luck, onward and upward!

    karen



    [This Message was Edited on 03/10/2007]
  11. Mikie

    Mikie Moderator

    I'm so happy for you. Congratulations and thanks for posting about your progress.

    Love, Mikie
  12. Daisys

    Daisys Member

    I'm so glad you're feeling better! I'm really glad you posted about it--thank you! I've been feeling intimidated by the protocol because it seemed to be things I've never heard of, ordered from places I've never heard of.

    I have the sublingual Methylcobalamin from this site. I've been taking Same-e for years. I have MSM but haven't been taking it regularly, which will change.

    Folapro and TMG are the only things I think I need to figure out.

    I'll go back and read more closely. Again, thank you, Deliarose!
  13. bigmama2

    bigmama2 New Member

    i'm so happy for you!!! i hope it lasts!!!! keep us posted on your progress (good or bad, but hopefully good!)

    bigmama2
  14. MKate

    MKate New Member

    HI -

    I love to hear / see the good results. I'm relatively new to this message board and site (6-8 weeks). While I've added vitamins 10 days ago for the Heart Failure protocol, I have not seen this data.

    Where can I find the article?

    Thanks Delia for sharing your story. Barrowinnovations -- I'd like to know more about how to find the itmes you've discussed and if one needs a physician or not.

    Are these intraveneous or can one purchase them and take at home?

    What type of tests can be ordered and where to test the bodies' content of all the supplements we are taking? My current physician would do it, if I had a test name and lab address to send the tests, I'm sure.

    Mkate
  15. acer2000

    acer2000 New Member

    FWIW,

    I get methyl B12 injections from wellness pharmacy in Alabama (they send them to me through the mail). I think your Dr. needs to RX them... but you can get them.
  16. Slayadragon

    Slayadragon New Member

    What is TMG?

    PLEASE don't quit the board when you finish getting better.

    Come back once in a while for a minute just to give us inspiration about how you're doing.

    Thanks for being the pioneer for us with this approach.

    Best, Lisa

  17. Catseye

    Catseye Member

    The article deliarose is talking about is here:

    http://www.co-cure.org/wwwboard/messages/32065.html

    and you can see a comprehensive list of everything I take in my "what worked for me" on page 3.

    The methyl donors, like TMG (trimethylglycine), SAMe, and MSM (methylsulfonylmethane) can all be ordered in pill form online or purchased at a health food store. The only thing other than pills I take are B12 shots every 3-4 days.

    For the tests, look at my post "scientific approach to supplements" from March 4, it explains what they do. Vitamin Research Products is the place I ordered the tests from. I'm doing the comprehensive hormone panel test and the organic acid metabolic test. They send test strips to you that you send back. You don't need to go through your doctor.

    Every test I have done with doctors in the past 4 years has come up "normal" but, of course, doctors don't do tests like these. If they did, they might find you need some things other than drugs and that would throw a real monkey wrench into the way they do things. Most of the supplements I take are metabolites, just chemicals the body should be making by itself but isn't, or at least not in sufficient quantities. Stuff like SAMe, TMG and coq10.

    I got most of the supplement ideas from Dr. Cheney and Dr. Teitelbaum. You can look at their protocols, too. Here:

    http://membres.lycos.fr/chrisdel2/association/cheney/cheneyII3.html

    http://www.immunesupport.com/library/showarticle.cfm/ID/3346/T/CFIDS_FM/searchtext/teitelbaum%20protocol

    good luck!

    karen
  18. SnooZQ

    SnooZQ New Member

    Hi Delia,

    I'm wondering how much you attribute your success to the methylation stuff alone? Do you think the antivirals & other tmts you've done were also helpful, or would you advise someone who hasn't done that other stuff to just jump into the methylation right off?

    I'm also wondering, do you have metals issues, and might some of this protocol be difficult for folks w/a lot of metals, amalgams still in place, that sort of thing?

    Thanks for posting your experiences. It's wonderfully encouraging to hear of folks who find their way back.
    [This Message was Edited on 03/10/2007]
  19. deliarose

    deliarose New Member

    Sorry. Realised after I posted that my post might be a bit cryptic for those of you not familiar with Rich Van K's theory.

    But it's all set out in LisaP's post on methylation and glutathione.

    Fixing the methylation block is only one part of the protocol, but in some people this one step may be enough.

    He has said repeatedly that if you remove this block,(which is suppressing the body's production of glutathione...the master antioxidant) glutathione levels will increase, and you will begin to detox.

    I think that's what is happening with me, but I could only be sure if I did the required testing.. and that involves getting on-going urinary heavy metals testing.

    The theory is you should get a bell shaped curve over time as your body dumps lots of heavy metals to begin with...and then less and less over time. The idea is you have an excess of these toxins stored up because of the broken detox system.

    This is an extremely crude paraphrase, and I encourage anyone who is interested in trying this to check in with Rich on the yasko yahoo listserv. (go to CFSFMexperimental at yahoo.)

    Rich directs you to the holisticheal.com website to get the supps,but most of them are freely available at other websites including Amazon.

    If he is right, and he bases his theory on a protocol to treat autism, one may not need to do the heavy metal chelation with DMPS or DMSA.

    The revved up glutathione system should pull it from the body. Rich is not in favour of DMSA and DMPS much because they pull even more glutathione from the body.

    Delia
  20. cherylsue

    cherylsue Member

    I am so happy for you. I am going to check this out.

    Hugs, CherylSue