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"Deactivating Epstein-Barr virus" through supplements??

Discussion in 'General Treatment' started by daveu, Apr 12, 2017.

  1. daveu

    daveu

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    Hi there,

    I saw a clinical nutritionist here in the UK for my M.E. after a relapse in 2016.

    My symptoms then were moderate (80% as defined by the mesupport.co.uk website's M.E. Disability Scale https://www.mesupport.co.uk/index.php?page=m-e-disability-scale) and they have now moved to mild-to-moderate (60%).

    This clinical nutritionist had me complete two lab tests from Genova Diagnostics Europe: 'Adrenal Stress Profile' and 'Metabolic Analysis Profile (Urine)'. Following the results of those two lab tests she concluded that the glandular fever I first got in 2008 which preceded my M.E. was part of the problem and that we needed to "deactivate" the virus.

    She prescribed me the following supplements (photos of ingredients attached):
    Humic-Monolaurin Complex from Allergy Research Group
    Bio-Glycozyme Forte from Biotics Research Corporation
    B12-2000 (with Folate and B6) from Biotics Research Corporation

    I have been taking the above supplements daily now for approximately seven months. My symptoms have moved to mild-to-moderate. I can't say whether these supplements have been the key to my slow improvement or if things like rest and pacing have been more the key to my recovery. But I figure the supplements haven't hurt especially the B12 supplements.

    My question for this forum is: has anyone ever heard of "deactivating the Epstein-Barrr virus" through supplements as a key to recovery from M.E.? Is that just a turn of phrase or is that actually nonscientific?

    Thanks very much

    Allergy-research-group-humic-monolaurin-complex-food-supplement.JPG Allergy-research-group-humic-monolaurin-complex-food-supplement-ingredients.JPG Biotics-research-corporation-B12-2000-vitamin and-food-supplement.JPG Biotics-research-corporation-B12-2000-vitamin and-food-supplement-ingredients.JPG Biotics-research-corporation-bio-Glycozyme-Forte-vitamin-and-mineral-food-supplement.JPG Biotics-research-corporation-bio-Glycozyme-Forte-vitamin-and-mineral-food-supplement-ingredients.JPG
     
  2. Mary

    Mary Forum Support Assistant

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    @daveu - No, I haven't heard of "deactivating the Epstein-Barr virus" as a key to "recovery from M.E.". No one knows how to cure M.E. It's not proven that Epstein Barr causes M.E., although I believe most of us have problems with the virus. It can be a question of which came first - EBV, or malfunctioning immune system which allowed EBV to flourish.

    Also, there are several other viruses commonly associated with M.E.: Coxsackie B, HHV-6, various echoviruses, cytomegalovirus - not all of us have all of them, but many or most have some.

    Having said all this, it is a good thing to lessen one's viral load. The supplements you're taking look good; however, they also appear to be quite pricey, especially the Humic-Monolaurin product and Bio-Glycozyme. I think there are more cost-effective products which may accomplish the same thing.

    I've found andrographis to be very effective against viruses, and it's cheap. Here's one study about andrographis and EBV: https://www.ncbi.nlm.nih.gov/pubmed/18981566 It's an immune modulator, I think it also stimulated my thyroid (for which I've been taking desiccated thyroid). I've been able to cut my dose by 25%. I know olive leaf extract is supposed to be very good, but I have not found it to be very effective.

    I've taken both this brand of andrographis: https://www.amazon.com/Planetary-He...=1492008187&sr=8-2&keywords=andrographis&th=1 and this: https://www.amazon.com/Paradise-Her...8&qid=1492008187&sr=8-6&keywords=andrographis and both have been effective. And I was getting sick a LOT - actually most of the time - and since starting the andrographis get sick much less, and recover more quickly.

    The Bio-Gycozyme is probably a good multi-vitamin but it's very pricey and there are good much cheaper alternatives.
     
    WendyM, Wayne, daveu and 2 others like this.
  3. JES

    JES Senior Member

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    "Deactivating" is indeed a weird term and sounds to me as a nonscientific. Once you catch a herpesvirus like EBV, it will stay in your body forever, but a normal immune system keeps it in check by mounting an antibody response against it. There is no way to deactivate a herpesvirus permanently. Antivirals drugs like valaciclovir work by preventing replication of herpesviruses, so eventually the viral load will become lower. Most natural treatments work primarily by stimulating your own immune defense and thus making it more efficient at clearing the virus, although stuff like olive leaf also have at least in vitro direct antiviral effects.
     
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hello @daveu

    Welcome to PR.

    Since you are new and there is so very much information here I thought I'd share a few links on what is the latest in ME research.

    http://www.pnas.org/content/113/37/E5472.full

    http://www.nature.com/news/biologic...onic-fatigue-syndrome-begin-to-emerge-1.21721

    https://meaustralia.net/2016/09/08/...in-severe-myalgic-encephalomyelitis-patients/

    Info on the flaws of the PACE trial and it's recommendations for ME/cfs
    http://www.virology.ws/mecfs/

    By now you may be aware that ME is difficult to diagnose and there is no proper medical treatment through medical institutions. Many people are raising awareness of this through media and other means to effect a better outcome for all of us.

    There is a new documentary out about these issues/ME: http://www.unrest.film/blog/2016/11...emiere-at-sundance-film-festival-january-2017

    Among the many people here on PR we have tried many things. Not everybody responds the same way. And for the most part things that work help manage symptoms as opposed to returning us to normal functioning.

    It would be good to have a look around here and weigh up what you want to try. I would suggest trying one thing at a time (otherwise how do you know what's working) and then try all of the things you think might help by adding in one at a time.
     
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  5. daveu

    daveu

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  6. daveu

    daveu

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    @JES Thanks for the reply. That's really interesting that "most natural treatments work primarily by stimulating your own immune defence", as my understanding is M.E. is partly a immune system dysfunction… Is it the best thing for me to be stimulating my own immune defence?

    Also I am not familiar with "in vitro direct anti-viral effects", what does this mean? And would in vitro direct anti-viral effects be doing anything good for my M.E.?
     
  7. daveu

    daveu

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    @Mary Thanks Mary. It is encouraging to know the supplements I am taking look good. I am currently weaning myself off humic monolaurin very slowly with my nutritionists guidance. But I will talk to her about more affordable multi vitamin options.

    I am not familiar with andrographis so thank you for recommending them. I will discuss them with my nutritionist but given I am coming off the humic monolaurin she may not see a need to be taking andrographis.
     
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  8. daveu

    daveu

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    Hi there,

    I just wanted to ask the Phoenix Rising community some follow-up questions about the above supplements which I first posted about in April 2017. I am still living in the UK.

    Since that post I have weaned myself off the Humic-Monolaurin under my clinical nutritionist's instructions.

    I also chose to stop taking 'B12-2000' because it was getting expensive buying the supplements each month.

    Recently the product 'Bio-Glycozyme Forte' has become out of stock with Nutri-Link: https://www.nutri-link.co.uk/shop/bio-glycozyme-forte-x-270-capsules.html

    I had been taking 3 X Bio-Glycozyme Forte daily to support my health whilst having M.E.

    I contacted the clinical nutritionist for advice about a replacement, and she has advised me to start taking the following supplements in place of the Bio-Glycozyme Forte:

    1. Dr Wilson's Super Adrenal Stress Formula https://www.nutri-link.co.uk/shop/super-adrenal-stress-formula-x-150-caplets.html

    2. Biotics Research Corporation Cytozyme-AD https://www.nutri-link.co.uk/shop/cytozyme-ad-x-180-tablets.html

    The ingredients labels are available if you follow those links and I have also attached photos to this post.

    Can I ask this community, do you think these 2 new supplements are a good replacement to the Bio-Glycozyme product? I'm concerned that vitamin B12 doesn't seem to be present in either of the new supplements given B12's importance to the health of M.E. sufferers. It also looks like I'm not getting any vitamin D from the new supplements.

    Perhaps to make sure I'm getting vitamin B12 I should order the B12-2000 product again? https://www.nutri-link.co.uk/shop/b12-2000-with-b6-folate-x-60-lozenges.html And buy some over-the-counter vitamin D supplements?

    Thanks,
    Dave
     
  9. eric_gladiator

    eric_gladiator Senior Member

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    taking advantage of the fact that they have already opened the thread. I also have problems with this virus, how about this supplement? The reishi, coq10, ashawangdha also say that they go very well
     
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  10. Learner1

    Learner1 Forum Support Assistant

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    Artesunate/artemisinin have antiviral properties:

    https://www.ncbi.nlm.nih.gov/m/pubmed/18699744/

    That said, I was on both, along with biofilm busters, B12, high dose vitamin C, adrenal support, ashwaganda, reishii, and my EBV didn't budge. I had multiple viruses and an immune system too weak to fight.

    An ME/CFS specialist tested my immunoglobulins, NK cells, and T and B cells, as well as checking me for other infections.

    Though I much prefer natural products, my body needed Valcyte, along with IVIG, for several months to finally make headway.
     
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  11. Ema

    Ema Senior Member

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    I'm not a huge fan of multivitamins, in general, but these are reasonably good choices if you are inclined to take one.

    The reason I'm not a fan is because, in general, they contain so many ingredients that it is hard to narrow down the problem if there is a reaction. For this reason, I tend to take single ingredient formulas more often. I can also better customize the dose to therapeutic ranges if testing reveals a deficiency.

    If you are looking for things to target EBV, I think there are better choices, like the ones @Learner1 suggested above, as well as traditional antivirals. BHT is also an option.

    Do you think you have adrenal dysregulation? Low or high cortisol symptoms?
     
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  12. Stretched

    Stretched Senior Member

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    When I was hyper studying supplements a few years back I recall Reishi and Red Yeast Rice (?) have a pretty serious side effect with some ethical rxs. I stopped them immediately since I knew at the time I was taking them and treating coronary heart disease,
    along with some psychoactive rxs, ethical: tranquilizers, sleep pills, pain rxs.

    From that time forward I’ve been more cautious and checked contraindications for any esoteric herbal, though I still believe there are legitimate and helpful uses - but what about side effects? IMO, the trick is to dig deep into legitimate information. Don’t assume they’re innocuous!

    FWIW, there are subscription journals from Scripps Institute where you can get researched data on most any supplements.
     
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  13. Learner1

    Learner1 Forum Support Assistant

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    Scripps gives generic information which may or may not be useful. The University of Maryland Medical Center sometimes provides more detail, but I find info from the Linus Pauling Institute at Oregon State University to be more useful for my needs. Life Extension Foundation has interesting info, too.
     
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  14. Stretched

    Stretched Senior Member

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    About 95% of the worlds leading scientific and academic community would take issue with
    your declarations,

    “...Scripps Institute is a world’s Leader in expanding the frontiers of scientific knowledge... .” (Google the font page of Scripps.edu for it’s massive involvements in science, research and academics. Linus Pauling for what kind of needs, Chemisry from the early 100’s? Life extension Institute sells supplements,having been sued multiple times on fraud related charges.

    Look all this up. Wouldn’t you like to update your information to reflect its accurate influence in benefitting people’s lives; not just hearsay? I’d suggest going in reverse order of your listings.
     
    Last edited: Feb 18, 2018
  15. Learner1

    Learner1 Forum Support Assistant

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    Thanks, I actually do look things up, and tend to look for information that will help me decide whether a supplement, drug, etc. will work for me in my unique situation.

    While the information provided by Scripps is valid, it is unfortunately so generic that it is not particularly helpful to me in making any decision.

    As a patient with ME/CFS who does not have generic metabolomics (as my doctors and I have found through extensive lab testing), my needs differ from the generic healthy person such generic information is intended for. For example, my need for various nutrients dramatically differs from the standard ranges for my sex and age group listed on the Scripps site.

    It is wise to consult a variety of sources of information and look at the range of data and advice in the context of one's own situation to make an educated decision.

    I find that Life Extension brings up interesting information that may be left out of generic sites that can provide additional insights to inform my decisions, though I rarely buy their products, while the University of Maryland and Oregon State University are reputable and I've found them useful over time.

    And, if I find conflicting information, I find it prudent to get the the bottom of the discrepancy to ensure I'm not getting into an unsafe situation.
     
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  16. daveu

    daveu

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    Thanks @Ema.

    I definitely take your point regarding multivitamins. Because I live in the UK and the support we get from our National Health Service for M.E. is so poor I am relying on my clinical nutritionist to guide me on supplements.

    The original supplements I was prescribed were based on two lab tests from Genova Diagnostics Europe: 'Adrenal Stress Profile' and 'Metabolic Analysis Profile (Urine)' (see my original post here: http://forums.phoenixrising.me/inde...epstein-barr-virus-through-supplements.50668/).

    I don't know if I have adrenal dysregulation. But the 'Adrenal Stress Profile' done in 2016 (see attached screenshot) did indicate I had cortisol levels above a healthy range. The clinical nutritionist prescribed my supplements in part in response to that test result.
     

    Attached Files:

  17. Hip

    Hip Senior Member

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    Glandular fever is caused by EBV in around 90% of cases, but in about 10% it is caused by cytomegalovirus. So it's likely EBV is your issue, but you cannot be certain, and it might be cytomegalovirus.

    Normally the ME/CFS specialist doctors will get blood tests to see which viruses are active. The viruses linked to ME/CFS are enteroviruses (coxsackievirus B and echovirus), herpesviruses (EBV, HHV-6 and cytomegalovirus), parvovirus B19, and the bacterium Chlamydia pneumoniae is also linked.



    The concept of fighting an active viral infection in order to treat ME/CFS is an approach used by all the main ME/CFS doctors.

    However, these doctors prescribe strong antiviral drugs such as Valtrex or Valcyte to treat herpesviruses, and even with these strong drugs, it takes around 3 or 4 months for the first improvements to appear, and up to 2 years for the full benefits to manifest. Dr Martin Lerner's and Prof Jose Montoya's antiviral protocols in this post.

    Doing this through supplements is not likely to yield much results (although its possible the supplement Andrographis paniculata may have a reasonably good antiviral effect against EBV, by some pharmacokinetic calculations I made; I am going to post a thread about these calculations soon).
     
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  18. daveu

    daveu

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    Thanks @Hip. This is really valuable information.

    Where I am in the UK (Leicestershire) the NHS only offer cognitive behavioural therapy and graded exercise therapy, but I am hopeful I can get my case transferred to Derbyshire where there is more specialist help I can hopefully access.
     
  19. Learner1

    Learner1 Forum Support Assistant

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    Even in the US, its easier not to tell most docs you have ME/CFS. Better, if possible, to have a mystery to solve and have them run labs which identify something treatable.

    Be aware that there are several tests for EBV, and you may only have a positive result on some but not all, making it tricky to find. PCR tests will find DNA of the infectious agent.
     
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  20. Hip

    Hip Senior Member

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    It's hard to find any doctor in the UK who treats ME/CFS in the same way as ME/CFS specialist in the US do, ie, using antivirals, immunomodulators, low-dose naltrexone, etc. Dr Myhill in Wales used to prescribe antivirals, but she was told by the GMC that she has to stop doing this (even though Dr Myhill is actually a private GP).

    I am also in the UK, and I realized that I had to become my own doctor; but's that a large learning curve.

    You might be interested in this mini roadmap document that gives a brief overview of the sort of viral testing and treatment performed in the US. Unfortunately the lab tests are US ones, and the given threshold titers for active infection are a bit out of date, because the tests have now changed their notation.
     
    Last edited: Feb 19, 2018
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