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Taking Vital Whey - thinking about Methylation Cycle Block protocol

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by zenzero-2001, Dec 12, 2011.

  1. zenzero-2001

    zenzero-2001

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    Hi everybody,

    This is my first post. My story of CFS is a long and complex one (as I imagine most are), I won't go into every detail here. I am a 35 year old male and have been suffering from CFS for over six years. I think the triggers were a combination of extreme self-imposed stress and a three year battle with chronic bacterial prostatitis.

    I have been trying Vital Whey (which I believe is another name for ImmunoPro Rx) for about ten days now and I think I am experiencing a worsening of symptoms. I'm not sure if the stuff is doing anything or if the change in my symptoms is just the normal ebb and flow of the condition. If the whey is helping to increase my glutathione levels and free some toxins, when would I expect to feel an improvement in my symptoms? Should I have done by now?

    I am taking two or three doses (each of 20g) per day. I took my first dose on the Thursday evening before bed, on the Friday morning I woke up feeling worse than usual with a new type of headache which I had not previously experienced in my years of CFS. Also, on that day I happened to be going to see my osteopath for a session of the Perrin technique (my lymphatic system around my head and neck is badly clogged) and he remarked that my neck was very hot (to which I agreed). I don't believe I have experienced that symptom previously either, hence why I think the whey may be doing something.

    Today, I have the headache again, but not as bad as the first day. It seems to vary from day-to-day. This Friday, just gone, I did not feel quite so bad (I won't use the term better). And my neck wasn't quite so hot. But today I am feeling pretty awful again with a thick head and many aches and pains. I used to take paracetamol for the pain (and have done for a number of years), but after realising that it lowers glutathione levels I have recently stopped. I also used to take ibuprofen, but that was making my IBS much worse, in fact it was making everything worse! So, I stopped taking that at the beginning of the year.

    For the past seven or eight months I have been experiencing a lot of pain in the left side of my neck (front and back) and just below the left occipital node. I have also been experiencing ear ache in the left ear. I had MRI and CT scans of my head and neck and they did not find anything. I had a dental x-ray and they found some infection by my bottom left wisdom tooth. So I had my bottom two wisdom teeth removed under general anesthetic, but I still have the pain (although not quite as bad as it was). So, I have come to the conclusion it must be lymph causing the pain (hence going to see the osteopath). I was surprised that the CT and MRI scans did not show the problem with my wisdom tooth.

    In the Spring of 2010 I experienced a big improvement in my symptoms. This was after changing my diet (eliminating dairy, wheat and rye), following Dr. Myhill's mitochondrial support protocol and strictly following CBT and preemptive rest strategies. Then in the April of that year I had my first amalgam filling and I never improved again after that. I don't know if it is coincidence or if I have a sensitivity to mercury.

    I am considering following the protocol for the Methylation Cycle Block theory of CFS. I notice that it has some similarities to Freddd's B-12 treatment, but that recommends avoiding glutathione. Why this difference?

    In addition to the Vital Whey, I am presently taking: Colostrum (almost finished my first bottle, don't think it is doing anything), lactoferrin (ditto), Multibionta multi-vitamin and milk thistle. I am also being prescribed fluoxetine because I suffer from anxiety and depression. I am taking 20mg per day.

    Thanks for reading all of that. I hope that I can make some valuable contribution to the forum in the future.
     
  2. ukxmrv

    ukxmrv Senior Member

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    When I took Immunopro when it was first used for PWME it was a disaster for me. My viral symptoms of sore throat/glands etc got worse and worse over time. Seems like for some patients it really does help, for others the bad symptoms improve and then for others it gets worse (with no improvement over time).
     
  3. zenzero-2001

    zenzero-2001

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    That's too bad it didn't work for you. I hope I have better luck. At least it tastes good!
     
  4. richvank

    richvank Senior Member

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    Hi, zen.

    ImmunoPro can help to boost glutathione synthesis, but in ME/CFS, its effect is temporary. If a person stops taking the ImmunoPro, the benefit goes away. It is, however, a good source of protein with the right proportions of amino acids for the human body. It also contains lactoferrin and immunoglobulins, which can be helpful.

    To achieve a more permanent rise in glutathione (which is depleted in most people who have ME/CFS, based on lab testing of plasma reduced glutathione), it is necessary to lift the partial methylation cycle block, using a methylation-type protocol.

    The reason Freddd rules out glutathione in his protocol is that he was not able to tolerate it himself, and in fact it set him back considerably. I think the reason for this is that
    Freddd has inherited an inborn error of metabolism involving the CblC complex, which is part of the intracellular B12 processing enzymes. Normally, glutathione assists in the metabolism of B12, and also protects it by forming glutathionylcobalamin. Recent research has shown that the CblC complex is normally able to retrieve B12 from glutathionylcobalamin, but apparently this is not possible in Freddd's case. I don't believe that most people who have ME/CFS have this inborn error of metabolism, but this has not been quantified. Glutathione is not part of the simplified treatment approach that I have suggested, but I think it can help some people to counter the excitotoxicity that frequently occurs when the methylation protocol is begun. I think that the best forms of glutathione to deal with this are liposomal forms of glutathione and possible acetyl glutathione. I think they are most likely to be able to reach the astrocytes in the brain.

    Best regards,

    Rich
     
    Lotus97 likes this.
  5. Jenny

    Jenny Senior Member

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    Welcome zenzero - you'll find a lot of support on this forum.

    Can I ask, have you got any benefit from the Perrin massages? I'm seeing him now - had 7 weekly treatments so far and suddenly feel quite a lot worse, which I'm told is good. It's clear that some find it helpful, but others don't. I asked him the other day if he's found any differences in those who respond and those who don't but he says he hasn't found anything clearcut.

    Jenny
     
  6. GhostGum

    GhostGum Senior Member

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    Hi Zenzero.

    You say you made big improvement with a change of diet and removing dairy but I wonder taking whey and colostrum whether you might have a dairly intolerance? I know both these products are not high in lactose but it could still be a problem, I know many with ME avoid whey and using alternative protein sources. You can get rice and hemp protein powders with the same amino acid profiles, maybe worth a try.
     
  7. zenzero-2001

    zenzero-2001

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    Hi Jenny

    This is the second time I have had a session of the Perrin Technique. The first was back in 2008 and it seemed to help with some of the symptoms. At that time, I still had the chronic prostatitis. Although I thought it was cured, it was actually just dormant and flared up again later that year. I had quite a few sessions (I can't remember how many), but I stopped because I didn't think I was gaining any additional benefit from it after the initial improvement.

    I decided to give it another go because of the all pain I have been experiencing in my head, ear and neck. I have been about four or five times this episode and I seem to be reacting differently than the first episode. I am also feeling a lot worse. I'm not sure how much is due to the Perrin technique and how much is due to the whey powder. In particular, since my last appointment on Friday, in between my shoulder blades has been sore - which my osteopath seemed to work quite a lot on that day.

    Today and yesterday I have been feeling particularly awful. I work part-time, but couldn't go in yesterday because I was too rough. I have headache, earache, strange sound in my left ear (which I've had for about a year now), tender / sore lymph nodes in the back of my head and front of my neck. I'm also experiencing aching and weakness in my legs and arms. I'm going to soldier on with the Perrin technique for a few more weeks yet. I will report any changes in my symptoms. Right now though, things are much worse. I am considering stopping the whey powder temporarily to see how much of an effect that is having.

    zenzero-2001
     
  8. zenzero-2001

    zenzero-2001

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    Hi GhostGum

    Thanks for the suggestions. Yes, I found that dairy would often give me diarrhea. I thought the same as you about the whey powder and the colostrum, but I have not experienced the same bowel symptoms - hence, I do not think I am intolerant to them. I am considering trying lactose free milk (which I have seen advertised on TV) to see if I can tolerate it. I am currently using rice milk, which is very nice but contains almost no protein and is mostly carbohydrate.

    zenzero-2001
     
  9. Jenny

    Jenny Senior Member

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  10. zenzero-2001

    zenzero-2001

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    Yes, he does do some cranial work. But he explained that he has to work on the back and chest, so that the lymph from the neck and head has somewhere to drain to.

    Thanks for the link to the Perrin thread, I will have a look at that when I'm not feeling too bad. I am now off to spend some of my limited energy at work for two or three hours, hopefully it won't make me feel much worse.
     
  11. snowathlete

    snowathlete

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    I've been taking a whey protein but not an expensive one for about 6 weeks. Ive not noticed any difference.

    I am waiting for an order to arrive which is for a tub of immunopro and a tub of RenewPro, which are similar products. I think its the same company that makes Vital Whey, but the ones ive ordered are the ones they reccomend for medicinal use, i guess that means they are stronger. Some people dont get on well with whey proteins, and particulary ImmunoPro, but i tend to tollerate things well, so im going to give them a go.

    I will report back once ive tried them.
     
  12. zenzero-2001

    zenzero-2001

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    Hi Rich,

    Thanks for the information and clarifying the point about Freddd's protocol. I have decided to leave the whey powder off for a few days and see what happens. I will then give it another go, probably at a lower dose.

    I seem to be reacting quite strongly to the Perrin technique (unlike the time I tried it in 2008), maybe the whey powder is enhancing the effect of the Perrin technique in my case? I've no way of knowing for sure, but I guess it is possible.

    zenzero-2001
     
  13. snowathlete

    snowathlete

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    Ive had ImmunoPro for two days now, without any negative reaction whatsoever. Too early to tell if its beneficial i think.

    I have to say, it tastes very much like raw milk, and is clearly alot closer to the real thing than past. milk, or the other whey proteins i have tried. Anyway, looks like i am one of the lucky ones who can tolerate it.
     
  14. zenzero-2001

    zenzero-2001

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    That's good news. I hope that it helps your symptoms. It is unpasteurized, hence why it probably tastes like raw milk :) Although, I have never tasted raw milk!
     
  15. richvank

    richvank Senior Member

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    Hi, snowathlete.

    It's interesting to note that the guy who developed ImmunoPro had earlier developed a case of ME/CFS, and found that raw milk was an effective treatment for him. I met him at a conference and talked to him several years ago.

    Best regards,

    Rich
     
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  16. snowathlete

    snowathlete

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    Yes the website talks about his ME/CFS and how he got better after raw milk powder in Germany.

    It is actually pasturized, but at lowest temperatures allowed by law in the US, and more gently. As i understand it, most states in the US you have to have all dairy products pasturized. In the UK you can buy fresh milk direct from dairys with a licence, but the whey protein is more concentrated so better for this purpose.
     
    Adlyfrost likes this.
  17. Freddd

    Freddd Senior Member

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    Hi Zenzero,

    The reason glutathione and NAC and other precursors as well as un-denatured whey which also promotes glutathione is that it can cause a severe induced folate deficiency with mb12 and adb12 deficiencies piled on if continued long enough. The symptoms of this are generally called "detox" and I posted the details on an appropriately named thread on this methylation topic. This makes a person much worse increasing infammatory symptoms includinf widespread muscle and joint pain, asthma, season allergies, multiple chemical sensitivity, nausea and so on. It just keeps getting worse and worse the longer it is contoinued. If these items are stopped and 8mg or so of Metafolin are taken several times a day and some largewr doses of methylb12 and adb12 are taken the symtpoms can start decreasin in hours and be largely gone in a couple of weeks.
     
  18. DrD

    DrD

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    hi Rich, i replied in similar to your response on the Slow methylator? Methyl B12 intolerance? thread.


    I think people should be aware of some of the adverse reactions that have occurred with glutathione administration. Here is a post of my reply on the thread above. I think it merits attention:
    ------post-------------

    hi Rich i had mentioned the NADPH theory last year in the Freddd wrong diagnosis thread, but no one replied and I assumed no one was interested in the information. This is clearly spelled out in Pangborn and Baker's cautionary status on glutathione as a supplement for autistics (section 5, p 303 in the paperback version). I think that this explanation for the adverse reactions to glutathione are much more viable and occur much more frequently (for people other than Freddd), than the Freddd mutation in MMACHC.

    Their explanation points, in particular, to infused and even oral GSH administration. NADPH is depleted as GSSG to GSH conversion is occurring

    They also mention external GSH might very well have different effects than what GSH inside the cell does (ie, detoxifying mercury and other toxins from the cell). He speculates that external GSH might actually cause toxins to flow into the cells if there are toxins present external to the cells.

    They also mention the possibility of insulin getting decreased to critical levels. I don't know that rationale behind this theory.

    The NADPH theory seems to be the most likely explanation. Also, wouldn't a massive and rapid decrease in NADPH severely affect the folate metabolism as well, thus increasing the severity and complexity of the "crash" symptoms ? (hence supplementing with increased dosages of methyl-folate, etc might help the recovery process, as it did in Freddd's case)
     
  19. Freddd

    Freddd Senior Member

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    Hi DrD,

    In a trial of ten of us over at WD and a couple via email, all of us on mb12/adb12/metafolin and successfully so, had the same folate crash from glutathione or precursors. It isn't only my crash. It's the 100% of those in the trial plus two who while on the active protocol had no advance until after stopping the already extant glutathione (precursors). Of 12 total, not a one escaped unscathed. I also had a researcher in b12 effects tell me that glutathione was too dangerous to even consider in any form.
     
  20. zenzero-2001

    zenzero-2001

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    Thanks for the info Freddd. I am still taking the Vital Whey - 20g twice a day. I had a break from it for a week about two weeks ago, but have started again. I have a horrible headache, which I've had most of the day. It is around the front (in the eyes), in my ears, side of my head and back of the head around the occipital nodes. I have it both sides, but at this moment it is worse on the right. I have been suffering from insomnia the past three nights and have been feeling "wired" (but I think this is just my nerves playing up).

    The soreness in my lymph nodes in my head and neck (that I was experiencing prior to the whey powder) seems to have lessened / moved. But general headache is much worse. I have very tender spots just behind and above my ears, where there is a bony ridge / lump, the tenderness has increased there but has decreased around the occipital nodes.

    I had a this kind of headache the day after I first started the whey powder. After leaving the whey powder off my head returned to 'normal' (for me). So, I think it is definitely doing something - just not sure if it is good or bad. Not sleeping well, doesn't help though.

    I have ordered the supplements for the methylation block protocol and they should arrive in the next couple of days. I plan to continue taking the whey powder at the same time as the protocol, unless things take a turn for the worse.

    Best wishes,

    Zen
     

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