Undenatured Whey & Immune System Discussion

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Feb 17, 2007.

  1. Elisa

    Elisa Member

    I started taking the undenatured whey two days ago - just 1/2 of a serving in the am before breakfast. Was okay yesterday - but today I awoke in the worst pain and rigidness I have felt in a long time. It took almost 4 hrs before I could move enough to get out of bed. What's happening. anyone any ideas. Really scaring me...
    [This Message was Edited on 02/17/2007]

    Now am taking 1/8 tsp in the morning - am not as achy but still need imput from those who take whey.

    Is it worth it - do you benefit?
    [This Message was Edited on 02/28/2007]
    [This Message was Edited on 03/10/2007]
  2. Slayadragon

    Slayadragon New Member

    Lots of people on the board have bad reactions to this. I don't understand why, but you're not alone.

    i hope you feel better soon.

    Best, Lisa

  3. Elisa

    Elisa Member

    Should I stay with the whey or stop - What have most of you done? I really need to make progess - have been sick for 10 yrs - am feeling hopeless. Just a little progress could really be great for me...

    Also will transfer factor have the same effect. Is it as bad as the whey. Don't know if I should chance it now...
  4. Elisa

    Elisa Member

    This transfer factor is supposed to help - at least it has for some. Any advice on how to approach it - starting dose and schedule?
  5. Catseye

    Catseye Member

    I have heard of some people having to start with really small doses like 1/4 tsp up to 1 or 2 tsp every second or third day to start. It raises glutathione levels in the cell and increases energy production in the mitochondria. If your body is loaded up with waste products, in the mitochondria and elsewhere, it can hit you pretty hard if you take too much.

    As for the transfer factor, I wouldn't know other than the manufacturer's recommendations, I haven't used it. But I would try and get stable with the whey protein first, as the transfer factor may bring on the same kinds of symptoms when you start it.

    best wishes,

    karen
  6. Elisa

    Elisa Member

    Good advice...I will try very small doses and work up if I can - every other day maybe to start. Thanks so much - I never thought of skipping days...
  7. Pianowoman

    Pianowoman New Member

    I agree with Karen. Go really slow at first; work up gradually until you are tolerating a full dose. Don't try more than 1 new thing at a time. The transfer factor can hit you pretty hard at first too.

    Good luck
    Kathy
  8. jess

    jess New Member

    Hi Elisa, I have been using this product for several years now. I first started with too high a dose and had itchy welts all over my arms. I stopped for a week and then started with a teaspoon for a few days. I increased very slowly until I could take a whole envelope without a reaction. It does work. I wish you the best, Jess
  9. Elisa

    Elisa Member

    I cut my dose down to 1/2 tsp in the AM and still am getting floored by PM with increased fatigue (like I am going to hit the floor) pain and stiffness - sometimes a low grade temp too. Any ideas? Should I keep trying or is this hurting me? Cheney's info says its detox of some kind?

    Love more input - if this is the norm or odd?

    Elisabeth
  10. winsomme

    winsomme New Member

    there are two possibilities that i can see:

    1) the reason to take whey, as i understand it, is to give the body the necessary amino acids to build up Glutathione. a lack of glutathione can lead to a build of toxins and blocks in the Kreb's cycle - which this main energy producing pathway in cells.

    so maybe the Whey is working after not working for a really long time.

    2)there is theory that the reason we are depleted in Glutathione is so much a lack of the amino acids, but further upstream a problem in the methylation cycle.

    i don't know all the details of the this, but i think what happens if you take whey when you have a block in the methylation pathway then you can have a back log of cysteine which have negative effects.

    so maybe you have a block in the meth pathway.

    there are some great resources for this topic. there is a guy named Rich who is a major proponent of this topic in CFS. he is very knowledgable and actually presented papers at the most recent CFS conference in FL.

    he believes that the root cause of CFS is Glutathione Depletion and he has put together very comprehensive papers about how to go about fixing the problem.

    he draws heavily from Autism researchers because it is also believed by many that this is the root of Autism as well.

    one in particular is Dr Amy Yasko.

    here are some great message boards to visit to get the most comprehensive info on this topic.

    www.holistichealth.com

    http://health.groups.yahoo.com/group/CFSFMExperimental/

    http://health.groups.yahoo.com/group/CFS_Yasko/

    let me know if you have trouble getting the info you need.

    thanks
    bill

  11. winsomme

    winsomme New Member

    i just visited some of those sites and there is a ton of info for you.

    it will take a while to digest the idea of methylation and glutathione and whey, but there are alot of people who are attempting these treatments and should be able to help you get started.

    the guys name by the way is Rich Van Konynenburg, and he posts regularly on those Yahoo boards.

    if you want, send him a note about your problems with Whey and i bet he will help you figure this out.

    thanks
    bill
    [This Message was Edited on 02/25/2007]
  12. sascha

    sascha Member

    from what i have read and learned, whey powder made from goat milk is closer in molecule size to human milk, and is more digestible.

    i buy Garden of Life brand goateine powder and mix it in blender drinks almost every day. i love it and think it has helped my CFIDS condition to whatever extent.

    my understanding is that it supplies a precursor for manufacturing glutathione, which CFIDS people are deficient in-- ? somethins like that.

    anyway, you might like to try it and see if your system gets along with it better. Sascha
  13. deliarose

    deliarose New Member

    You've got some good advice here already.
    But here's my 2 cents.

    Try and make sure it's the whey you're reacting to. If you have added other new things to your regime at the same time, cut them out.

    Then if you're still having a bad reaction, back down on the dose. What is a half serving to you? Half a scoop?

    I know some people start with a teaspoon.

    As Bill said, the whey is supposed to help your body produce glutathione, and the purpose of the glutathione is to bind toxins and get them out of the body.

    BUT, as Bill also said, Paul Cheney and Rich Van Konyenburg, believe that some people with CFS cannot tolerate glutathione and supplementing it is useless.

    Rich suggests the reason is that some folks have a methylation block. In these cases, he suggests adding methyl donors to your supplement regime.

    Here is what he recommends:

    a quarter of a tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

    quarter of a tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, aka folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

    (up to) 2 tablets (It’s best to start with a quarter of a tablet and work up as tolerated) Complete vitamin and ultra-antioxidant from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

    1 softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

    1 sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

    1 capsule SAMe (200 mg S-adenosylmethionine)

    1/3 dropper, 2X/day Methylation Support Nutriswitch Formula (This is an RNA mixture designed to help the methylation cycle. It is not essential, but is reported to be helpful.)

    Some of these products are only available at www.holisticheal.com

    I just got the first 2, and I ordered them off Amazon. I'm also using a generic brand Sam-e, and sublingual B12.

    I could not even tell you what methylation means. But I was willing to give it a shot to see if it worked. It's too early to say, but my brain fog is clearing up and this may be one reason why.

    Anyway, I just put this out ..fyi. If you are interested in Rich Van K's work, please check out the co-cure.org message board where he has posted his entire explanation for the methylation block/glutathione depletion theory of CFS.

    It's an intriguing idea. And methylation may only be part of the problem.

    But if it is, it seems to be an easy one to fix, according to his roadmap. That's my thinking.

    Hey, if I can take a few B12 vitamins and folate, and see some benefit from that.. then hell yeah, I'll give it a shot.

    That's the way I look at it.

    But please do your homework, and join the CFS Yakso yahoo group for more info.

    Don't rely on me. I don't even have a science background.
    Best
    Delia
  14. deliarose

    deliarose New Member

    hi
    i thought i wld answer this separately. I've been on this for 5 months.

    Turned everything around for me.

    I was put on this by my infectious disease doc, Dr Joseph Brewer in Kansas City, MO.

    He put me on 3 a day to begin with.. first thing in the a.m. on an empty stomach. Leave 20 mins before taking anything else or eating.

    I herxed a lot to start with. Made me feel extremely fatigued/sleepy for the couple of hrs afterwards. I would sleep it off. I wasn't working so it wasn't a problem.

    Brain fog began to clear up pretty quick. It was the first thing to put a dent in my brain fog.

    Moved up to 4-a-day after a couple of months. Brewer says his dosing was just guesswork to begin with.. but this formula has worked for quite a few folks. Says he sees diminishing returns at 5 or 6 capsules a day.

    I don't know if I even need to take it any more to be honest. I will get my NK cell activity tested soon and that may help me decide.

    When I first saw Brewer (pre-transfer factor) my NK cell activity was 5 on a scale where normal is 8-170.. or something like that.

    I need to re-test to see if i'm more in the normal range.

    Now, I'm out of brain fog land a bit, I do have some questions about Transfer Factor, like what are the risks of the virus mutating...?

    I know this is something Jose Montoya was concerned with in teh Valcyte trial, so i'm just wondering .. if the virus mutates, is the TF still effective?

    Just a thought. Haven't put it to anyone yet.

    Anyway, good luck with this. And remember to stagger treatments. Only one new thing at a time.

    Also, are u flying solo with this TF or did a doc recommend it?
    Best
    Delia

  15. deliarose

    deliarose New Member

    Elisa you do know there is more than one way to give your body glutatione, right?
    You can build it with whey, or give it directly thru IV, or nebulised glutathione.

    I found I could tolerate the IVs and nebulised pretty well.

    I think it does make me feel foggy but I'm more clear-headed the next day.

    That's my impression, and of course, in the absence of test results, it's all subjective.

    Do a search under glutathione for more info. This has come up a lot.

    Best
    DElia
  16. deliarose

    deliarose New Member

    Can't believe how my brain fog is clearing up.

    I get very foggy for a while after I take my methyl supps, and I'm sleping v. heavily (even tho i am backing off on the sleep meds) but the progress is rapid.

    I'm still taking the TFs, so I can't be sure it's the methyl supps alone.

    Should have a better idea once I do some testing to see if my body is dumping toxic metals.

    But I would seriously recommend this for anyone who tried glutathione and saw no benefit.

    Delia

  17. deliarose

    deliarose New Member

    I feel a little more fatigued (a kind of mild fatigue) but otherwise, I just feel like I'm back in the world.

    It's like CFS is fading into my rear-view mirror.

    If the methyl supps are indeed responsible for this dramatic improvement in a week, it's nothing short of miraculous.

    It would support Rich's theory that glutathione is at the root of all the problems in CFS.

    I'm also noticing that my hypoglycemia is much less of a problem. I actually crave salad now...arugula, baby spinach, yum.

    Just thought I would update u.. Shld start a new thread.

    Delia
  18. Slayadragon

    Slayadragon New Member

    CFS is fading into the rear view mirror! This is really big news to have buried at the bottom of this denatured whey post.

    I can see why you might not want to make a big announcement so as to jinx it. But I am really happy for you just the same.

    Dr. Brewer seems really good, and so perhaps he zeroed in on the things that would be most helpful for you. It seems like your progress is going just as he predicted.

    I've been trying to make my way through all your comments and have some questions. I hope you don't mind, but I'm going to put them on a new thread since they're not all related to denatured whey protein.

    Good luck!

    Best, Lisa
  19. Mikie

    Mikie Moderator

    Dr. Sujay, whom many here will remember, was a big fan of Dr. Brewer's before she switched to the Marshall Protocol. I adapted a lot of her ideas from Dr. Brewer and have used the transfer factors sold here. They are so potent that a lot of people, like me, have to start very, very slowly and build up. I think that's good advice for anything we take.

    I am a big fan of Dr. Cheney and I've been using the ImmunPlex sold here for years now. Cheney recommends the ImmunePro. I'm not sure what the difference is. BTW, the cheap protein products sold in healthfood stores is only a source or protein and not glutathione. I know the undenatured whey sold here is of the highest quality. I did not have a reaction to the whey. Anytime we take new supplements, though, we can have a reaction. Sometimes, it has to get worse before it gets better. I have not read many posts here from people who have had adverse reactions to the undenatured whey but I'm not here as often as I used to be.

    I like using the colostrum, especially in the beginning, before the TF's. TF's usually contain some colostrum. I took the TF's for three months and now only pulse them for a couple of days every six weeks. That seems to work fine. TF's are like little oral vaccines and immunity isn't permanent. They need to be pulsed, or boosted, every now and then.

    Probiotics are another great way to increase immune function and prevent Leaky Gut Syndrome. I believe that over time, the whey, colostrum, TF's, and probiotics have greatly helped my own immune system to function. This sure beats the antibiotics and antivirals which I was on for years. They helped me and I'm grateful for them but I'm glad to be off of them now, except for any reactivations which have to be nipped in the bud.

    Hope you can get some benefit from the whey; it's really been a help to me. My ex is now taking the probiotics, whey, and colostrum and is feeling better after a horrible round of fatigue. His doc had told him that his immune function was shot. As far as we know, he doesn't have these illnesses.

    Love, Mikie
  20. Elisa

    Elisa Member

    I am wondering what types of bad effects did you have, if any, when you started whey and how long did they take to go away and was it worth it?

    Or how did you manage the undesitable effects?

    Elisabeth