Richvank - input re Vitamin Diagnostics test?

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Jun 18, 2009.

  1. mbofov

    mbofov Active Member

    Hi Rich - well, I finally did the Vitamin Diagnostics methylation panel (long overdue, I know). I looked at your suggestions for interpreting the tests, and my tests seem to fall in very nicely with results expected for someone with a block in the methylation cycle.

    Here they are:

    Glutathione (oxidixed) 0.45 Range - 0.16 - 0.50
    Glutathione (reduced) 3.3 (low) Range - 3.8 - 5.5
    S-Adenosylmethionine 209 (low) Range - 221 - 256
    S-adenosylhomocysteine 43.6 Range - 38.0 - 49.0

    5-CH3-THF 10.8 Range - 8.4 - 72.6
    10-Formyl-THF 1.6 Range - 1.5 - 8.2
    5-Formyl-THF 1.20 Range - 1.20 - 11.70
    THF 1.10 Range - 0.60 - 6.80
    Folic acid 16.5 Range - 8.9 - 24.6
    Folinic acid (WB) 8.8 (low) Range - 9.0 - 35.5
    Folic acid (RBC) 39 (very low) Range - 400 - 1500

    Adenosine 15.8 (low) Range - 16.8 - 21.4

    One thing you said in your post was that if the sum of SAM and SAH is below 268 (which mine is), it appears to suggest the presence of upregulation polymorphisms in the cystathione beta synthase (CBS) enzyme, though it may not be true in every case. Does this imply the need for something different or in addition to the basic simplified methylation protocol?

    One more thing - my doctor pointed out to me that my MCV on standard CBC blood test was high normal (95 in a range of 80 - 98) and my MCH was also high normal - 32.4 in a range of 27 -34. He said this meant that my red blood cells were larger than normal, and I did a little research and found that it indicates a B12 or folic acid deficiency. No big surprise there, but I was wondering if this means anything significant to you in terms of what I should be doing.

    I am so grateful you’ve kept on pushing this test. It is the first hard diagnostic evidence I have of what may be wrong with my body, and consequently what I need to do.

    Like most others on this board, I have spent thousands of dollars over the past many years on things that ended up not helping much, and my savings are pretty well depleted. So the $300 price tag for the test was just very hard for me to swallow. Anyways, it is probably the best $300 I’ve spent in the last 20 years.

    I’d appreciate any feedback or suggestions - thank you in advance for your help!

    Mary
    [This Message was Edited on 06/18/2009]
    [This Message was Edited on 06/18/2009]
    [This Message was Edited on 06/18/2009]
  2. richvank

    richvank New Member

    Bravo, Mary!!

    I'm really glad that you went ahead with this test. I know that it's a step in the dark when you don't know if it will pay off, and $300 is $300 when the coins are getting short. I'm sorry that you spent so much money on things that didn't pay off. I hope more people with CFS will plunk down the money to get this test, because I think it would pay off for most of them. I understand that Vitamin Diagnostics is now running about 50 samples per week on this panel, so it seems to be catching on. They had to buy another chromatograph and hire more technicians to handle the workload. The European parent lab is also experiencing quite a significant growth in the sample volume. I'm hearing from more doctors who are starting to use this panel routinely.

    Yes, your results do say that you have glutathione depletion and a partial methylation cycle block. The levels of your folate vitamers are on the low side, but they aren't really bad, compared to many test results I've seen. I suspect that there is a typo on the lab report for the RBC folic acid. I don't think it could be that low. I'm guessing that it was supposed to be 390 rather than 39. You might ask the lab to check on that, or ask your doctor to check with them.

    Yes, your MCV and MCH results are consistent with a B12-folate problem. When you fix the partial methylation cycle block, your MCV and MCH values should return to normal.

    From these results, my guess is that your B12 is not being protected well enough by reduced glutathione, because the latter is low, and that is what has partially blocked methionine synthase in the methylation cycle.

    I would say that you are a good candidate for the Simplified Treatment Approach.

    Yes, it's possible that you may have one or more polymorphisms in your CBS enzyme. In our clinical study, we ignored this and gave all the patients the Simplified Treatment Approach, and those with the polymorphisms experienced improvement also, but they were starting from lower SAM and SAH values, so it took a little longer for them to rise up to the normal range. At this point, I am suggesting that the same treatment be used whether there are CBS polymorphisms or not.

    There has been one revision in the simplified protocol because Metagenics changed the formulation of one of the supplements. Here's the revised protocol:

    April 18, 2009


    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROME (Revised)

    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. FolaPro [2]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.

    I wish you the best, and hope you will keep us all posted about how the treatment goes.

    Rich
  3. mbofov

    mbofov Active Member

    Thank you so much for your very quick response! It helps so much to have your input. Otherwise it is like flying in the dark, which can be exciting on occasion, but, well, anyways.

    As you may recall, I have been doing the meth. protocol off and on for close to 2 years. However, for most of the last year, it's been way more off than on because I was sick so much so could not tolerate detoxing on top of it. However, with the help of a thymus glandular supplement from a chiropractor who does muscle testing (my thymus tested weak), my immune system has picked up a bit and I'm ready to start detoxing again.

    Will keep you posted - thank you again!

    Best wishes,

    Mary
  4. deliarose

    deliarose New Member

    Congrats on getting the test run Mary. I feel exactly the same as you.. this panel was the only lab in YEARS of running labs that finally turned up abnormal and got to the root of the problem.

    I am 2 years down the road.. & my glutathione is finally in positive territory and some labs I just ran thru Acumen in the uk ( and which i have posted in the files section of the cfs_yasko group) show that I am finally making energy.

    delia
  5. mbofov

    mbofov Active Member

    It's so good to hear that you are making good progress with the methylation protocol! I went to the files section of the cfs_yasko group, but could not find your test results. Do you know how I could find these?

    Also - do you have more energy now, corresponding with your new labs?

    Best,

    Mary
  6. deliarose

    deliarose New Member

    Sorry. The Acumen files are in Louella's results folder.

    Yes, the labs jive with my feeling that I am no longer running an energy deficit but am making modest amounts of energy. My feeling also is that a lot of that energy is being used by the brain.

    I have also recently added 250 mg of valtrex.. & i think that's helping too. It modulates adenosine...I think that's the reason.. although maybe there is some viral action too.

    Best
    delia
  7. mbofov

    mbofov Active Member

    I'll check it out. It is just so encouraging to see someone making progress with the methylation procotol -

    Mary
  8. deliarose

    deliarose New Member

    It has turned my life around.. no question. I get refreshing sleep, I dont' have that dragging 24/7 fatigue, the brain function is returning, the hormone situation is improving. It's just been kinda slow.

    I'm no longer hopeless and despondent. I'm just frustrated at the pace of recovery. I'm beginning to think a lack of methyl B12 is what's slowing me down.... but as you may know there are some concerns about using methyl B12 because of the mercury issue which Rich has discussed many times.

    I am looking at other things .. but for me methylation is the foundation on which everything else rests.

    Oh, and FWIW, I think my first Vitamin Diagnostics panel was much worse than yours.. so if I can improve.. I think there is hope for a lot of folks.

    cheers
    delia
  9. mbofov

    mbofov Active Member

    Actually, I first started the methylation protocol about two years ago, and after 7 or 8 months noticed that my CFIDS crashes were not as bad as they used to be. However, for about the past year, I haven't been able to do it very much because I was sick so much. So I'm guessing if I had had the Vitamin Diagnostics test done initially, my results would have been worse.

    But now that I seem to have the chronically getting sick under control, I hope to able to pursue the protocol regularly without all the stopping I've had to do.

    Yeah, I can definitely understand your frustration at the pace of recovery - and I have read a little about the mercury issues. It IS frustrating. Do you think your methylation cycle may have restarted sufficiently to begin detoxing aimed specifically at mercury? My chiropractor gave me a homeopathic supplement aimed at heavy metal detox, but it was too much for me, and now I realize my body is just not ready for that. There are other things like chlorella which is supposed to be very good (but I can't tolerate right now either). We are learning a lot, aren't we!

    Take care -

    Mary

  10. deliarose

    deliarose New Member

    if you email louella monrovia over at the cfs_yasko group, i can email you some labs that may be helpful for you.

    I just ran a fecal metals test that showed a respectable amount of mercury excretion.. I am not 100 % sure about those tests...but there is no denying the subjective improvement over the past 2 years, even though it has been gruelling at times.

    Be sure to have activated charcoal or pectasol by your bed for those mornings when you wake up feeling nauseous because your liver has dumped a bunch of toxins in the night.

    they bind them up great!

    don't overuse though.. nothing's simple is it?
  11. mbofov

    mbofov Active Member

    I will do that, although I don't think I'm going to run any more labs right now (money, or rather lack thereof). But having done the Vitamin Diagnostics test, I feel more confident that the methylation protocol is the right path for me. I think I will just stick it out for 6 months or so, see if I seem to make progress, and then maybe run more tests at that time, or just keep on going if it's working!

    You're right about the activated charcoal. Another good thing to help bind toxins is Cholacol II by Standard Process (although the charcoal is cheaper). The cholacol II has betonite clay and a few other things.

    I'm glad to hear you have a respectable amount of mercury excretion! (The things we discuss now ---) Kidding aside, it is a good thing and good to hear.

    Take care-

    Mary

  12. simpsons

    simpsons Member

    hi

    i'm tring to understand this methylation cycle for some time now but foggy brain at the moment.

    i was searching for mcv blood test high and came across this posting

    so am wondering how to discuss this with my new gp tomorrow. i do have acumen tests that show polymorphisms one which is associated with a slightly higher risk of breast cancer.

    what papers or articles would you recommend i give my dr to read?

    he says he is open minded and i was pleased to hear him describe the canadian guidelines as very useful for dr's and was v pleased that he had read them for a uk dr this is very good

    i.ve sent him the dr myhill paper with dr howard and booth on mitochondrial function and treatment and the prof k d m press release but he did say that there was a limit to what research he could read not in a bad way just not loads and loads of papers

    i have a chance here to really give a gp the right information to help me here and this is the first time that i have had a good willing to understand and help gp.

    he seemed interested in the b12 shots in my letters from dr myhill who is my dr but i am worried about the aluminum in the shots even though its no more than 12,500 mcg/l

    many thanks for your time and support

  13. mbofov

    mbofov Active Member

    Here is a webpage very kindly put together by Cort Johnson of Phoenix Rising, which has links to Rich's papers on this subject (I think it covers all of them, although Rich could tell you for sure):
    http://aboutmecfs.org/Trt/TrtGSHIntro.aspx

    There are several papers. I'd suggest printing the third and fifth ones listed, although Rich can guide you better on this.

    It's really great that you have a doctor willing to work with you! I hope it goes well --

    Mary
  14. richvank

    richvank New Member

    Hi, Simpsons.

    I agree with the suggestions Mary has made. I would suggest including the last one, too, on the treatment study, because it is the most recent one.

    Please note that since the last paper, I have changed one of the supplements in the protocol that was used in that paper. Instead of Intrinsi/B12/folate, I'm now recommending that Actifolate be used. The reason is that Metagenics changed the formulation of Intrinsi/B12/folate, so that it no longer contains folinic acid, while Actifolate still does.

    I hope it goes well with your GP.

    Best regards,

    Rich
  15. simpsons

    simpsons Member

    i will let you know how it goes, what a relief to have you guys to help my brain is like mush at the moment. very grateful for your kind help

    best wishes

  16. Chootik

    Chootik New Member

    Like Mbofov, I after a long time of thinking about it have decided to really start the Protocol.

    I haven't done the Methylation panel but I just did the Urine Amino Acid Panel from Vitamin Diagnositcs and it shows very low levels of almost all Amino Acids. I'm def. low on Methione and Homocystein and others. My question is can I use this test to conclude that I have a Methylation block or do I have to do the actuall test?

    I can post some of my results like Mbofov and maybe you can give me an idea of what you think?

    Thanks Rich for your help.

    Mbofov- I'm so happy for you, I think this treatment will def. help you. Good luck! :)
    Chootik

  17. richvank

    richvank New Member

    Hi, chootik.

    The urine amino acids panel won't tell you if you have a partial methylation cycle block. However, if you have low methionine and low homocysteine, it's likely that there isn't a high enough flow in your methylation cycle, because methionine is what feeds the cycle, and homocysteine is one of the other three metabolites that are in the cycle.

    The Vitamin Diagnostics methylation pathways panel is the one that will tell you if you have a methylation cycle block, low folate metabolites, and/or glutathione depletion.

    I'm glad that you got the amino acids panel run, though, because I've been finding that low amino acids can result in a poor response to this treatment for those who do have a methylation cycle block. It's important to lift this block, if you have it, but then you also need to have the amino acids levels up enough so that you can feed the cycle and have something to carry in it.

    I think that low amino acids, in many cases, result from problems with digestion of protein and absorption of amino acids in the gut.

    Best regards,

    Rich
  18. Chootik

    Chootik New Member

    Makes Sense. If I do the Methylation Test will that tell us what supplements to use?

    I also did a Digestion Panel from Vitamin Diagnostics and am scheduled to get the results of that soon!

    In your opinion what is the best way to replenish the Protein? Would Protein Powders, Why Protein or Free Form Amino Acids work the best?

    I think I'm on the right path just not there yet. Maybe I can work on the Protein supplementation and then do the Methylation Test and go from there.

    Thanks again.
    Chootik

  19. richvank

    richvank New Member

    Hi, chootik.

    I can't give individual treatment advice unless a physician is directly involved to review my suggestions.

    However, generally speaking, if the methylation pathways panel shows that there is a partial block in the methylation cycle, then I recommend that the person, together with their physician, consider the simplified treatment approach. The updated protocol for that is pasted below.

    If the amino acids are low, correcting problems in the gastrointestinal system is the longterm solution. In the short term, free form amino acids may raise the levels in the body. I don't think it's possible to completely fix the gut problems until the methylation cycle is operating properly, but it's important to have the gut working well enough to absorb nutrients and to excrete toxins, in order for the methylation treatment to work.

    Best regards,

    Rich

    April 18, 2009


    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROME (Revised)

    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. FolaPro [2]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.

  20. SpecialK82

    SpecialK82 New Member

    Hi Rich,

    I have been interested in starting your protocal but have not been able to find any docs around the Cincinnati area that will support me in it.

    Do you know if Dale Guyer in Indianapolis would be open to this?

    Or do you have any other suggested MD's in the area?

    Thanks,
    Kristina