Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Anybody been treated in the UK?????

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Lucy1996, Dec 27, 2016.

  1. Lucy1996

    Lucy1996

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    looking for a doctor who will prescribe anti virals or herbal equivalent for EBV / Shingles virus in the U.K??

    Many thanks.
     
  2. charles shepherd

    charles shepherd Senior Member

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    Dear Lucy

    I assume from what you say that you do not have a copy of the new (2016) edition of the MEA purple booklet

    So I enclose the section on antiviral drug treatment below, which you should find helpful

    There is also a section on immunomodulatory treatments (including immunoglobulin) if you need an up to date summary of clinical trial information relating to immune system treatments

    I also assume you are not aware that the NICE guideline on ME/CFS does NOT recommend the use of antiviral or immunomodulatory treatments - so this is not a form of treatment that is likely to be prescribed by an NHS doctor, unless there are very good reasons for doing so

    There aren't many doctors here in the UK (certainly in the NHS) who prescribe herbal treatments - so I think you are going to have to approach a reputable herbal medicine practitioner if you want to go down this route. I would add that the evidence for using herbal remedies in this situation is (in my opinion) not convincing

    7.4.6 Antiviral drugs
    Although viral infections commonly trigger ME/CFS, there is very little scientific evidence to indicate that a persisting viral infection is involved in perpetuating ME/CFS. The first antiviral drug to be assessed in a clinical trial was acyclovir (Straus et al 1988a). No benefits were found. Intravenous ganciclovir was found to be of benefit in a subset of patients with abnormal aberrant T-waves in a small pilot trial (Lerner et al 1997).

    Valganciclovir (VGCV), which is active against human herpes virus type-6 infection, is currently being assessed in the USA following a report that it could be of benefit in ME/CFS patients with evidence of persisting EBV infection (Kogelnik et al 2006).

    A more recent study investigated whether antibody titres against HHV-6 and EBV were associated with a clinical response to valganciclovir in a subset of ME/CFS patients (Watt et al 2012). Antibody titres were considered high if HHV-6 IgG was > 1:320, EBV capsid antigen IgG was > 1:640 and EBV early antigen IgG was > 1:160. Treatment with valganciclovir, independent of baseline antibody titres, was associated with self-rated improvement in physical and cognitive functioning in those who had positive HHV-6 and/or EBV serologies.

    Montoya et al (2013) randomised (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir or placebo for six months in a double-blind, placebo-controlled trial. Statistically significant differences between groups were observed in mental fatigue sub-scores and cognitive function. The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining nine months. In the VGCV arm, monocyte counts decreased, neutrophil counts increased and cytokines were more likely to evolve towards a Th-1 profile.

    NICE does not recommend the use of antiviral treatment in ME/CFS (National Institute for Health and Care Excellence 2007b), and this has had a very negative impact on any interest here in the UK regarding a clinical trial that would aim to replicate these very interesting findings. The MEA has met with a representative from the pharmaceutical company that manufactures Valcyte (one of the brand names of VGCV) to discuss the possibility of a UK clinical trial.

    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
    JanetME, TiredSam, Hutan and 2 others like this.
  3. Lucy1996

    Lucy1996

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    Thanks for your reply. Apologies as I literally know nothing about treatment - I don't know anybody else with the condition and have limited medical help where I am because my GP has told me basically there's nothing she can do to help me.

    Is there any treatment you would recommend? I am suffering from brain fog/mushy brain/head pressure (cognitive problems) and inflamed throat/swollen glands everyday as my main symptoms. I am willing to try any option to defeat the brain fog (whatever the price)
     
    TedBakerBoy likes this.
  4. mermaid

    mermaid Senior Member

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    @Lucy1996 You could visit a registered medical herbalist who may well be willing to use suitable herbals for viral issues. I have improved my own immune system issues by this route.
    This link will help you find one
    http://www.nimh.org.uk/?page_id=1627
     
    Jigsaw likes this.
  5. Sushi

    Sushi Senior Member Albuquerque

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    We can't recommend individual treatments but if you read through sections of the forum that look interesting to you, you will get lots of information and ideas. Just go to the forums page and scroll down to see all the sections of the forum. Or, if you read the forum by clicking on New Posts, you will see everything that is being discussed currently.

    Best wishes!
     
    TiredSam likes this.
  6. TedBakerBoy

    TedBakerBoy

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    Try Prednisone I had all those symptoms, GPS said they can't do anything so i started low does predinonse bought from goldpharma,
     
  7. Jigsaw

    Jigsaw Senior Member

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    @Lucy1996

    Hi Lucy, with respect to @TedBakerBoy, be REALLY careful with prednisolone, or prednisone as we have now adopted the slight name difference from the US.

    Hydrocortisone is a closer match to the natural cortisol that your adrenal glands should produce as an anti-inflammatory. Prednisone is four times as strong, so 1mg of pred = 4mg of hydro. 5mg of pred is the same as 20mg of hydro, which is the standard physiological replacement dose IF YOU ARE ADRENALLY INSUFFICIENT.

    Other steroids are stronger still, and some are accumulative, so you have to be extremely careful or you end up suppressing your immune system. I couldn't get hold of any hydro once, and got dexamethasone instead. I worked all the doses out very carefully, but didn't take into account the far longer half-life of dexa. Consequently, I went down with a terrible chest infection which took me weeks to shift. I probably wouldn't have shifted it without then discovering the magical effect of Car's Claw and Olive Leaf combined. That combo saw it off very quickly, but I've never forgotten how I messed up my steroids.

    If you do some research online, there's a chart somewhere that shows you the different equivalent strengths of the different steroids.

    Starting steroids without guidance from a Doctor is a very dodgy and potentially unsafe thing to do. You can do endless damage to multiple systems through mis-using steroids. If you feel, after researching for yourself, that you are adrenally insufficient, there are other natural things you can do to optimise your adrenal function.

    For example, all adrenal steroids are made from cholesterol and Vit B5, pantothenic acid. Therefore, you can often get relief from inflammation-based symptoms if you take 500mg of B5 a day - don't do this at night, because it will keep you awake. Again, I know this because I've experienced it myself :) However, inflammation as you have described in relation to throat symptoms is there to serve a purpose. Inflammation and temperatures are created by our bodies in order to "burn out" bugs.

    As a further note, cholesterol and B5 make pregnenolone, which is the mother steroid of all our adrenal steroids, everything from cortisol to DHEA and even progesterone, the three oestrogens, and testosterone, amongst others. Pregnenolone is available online in varying doses, including very small ones.

    Do you have any adrenal insufficiency signs and symptoms, like postural hypotension, dizziness, losing weight, feeling cold, nauseous, wobbly, that sort of thing?

    What other options have you looked at for yourself? It does, at my first quick read, seem like you have an infection of some kind. Unless you are adrenally insufficient, taking exogenous steroids will only suppress your immune system and actively prevent you from fighting off any bugs.

    Hope that helps :)
     
    Last edited: Mar 2, 2017
    TedBakerBoy likes this.
  8. Jigsaw

    Jigsaw Senior Member

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    @Lucy1996

    Just read further back and seen that you've mentioned shingles. Have you been diagnosed with that?

    The best anti-herpetic I know of is the amino acid l-lysine. I used to get herpes, and acyclovir wasn't very effective for me. I got faster resolution from 6g of lysine plus 50mg zinc gluconate a day. (Shingles is part of the herpes family of viruses, as are cold sores, glandular fever and chicken pox - see here - https://herpes.org.uk/wp-content/uploads/2015/08/HHV-family-of-viruses.pdf )

    I managed to get a massive attack of shingles last year, and my GP couldn't do anything for me, either. I treated it with lysine and zinc, and it did eventually go away. Shingles can go on for months. I was lucky enough to get rid of mine within weeks, rather than months, but the after-effects lasted way longer and I was wiped out by it.
     
    Last edited: Mar 2, 2017
  9. Jigsaw

    Jigsaw Senior Member

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    @TedBakerBoy

    Thanks, Ted :)

    How did it go with your pred in the end? Were you able to wean off them with no problems?
     
  10. TedBakerBoy

    TedBakerBoy

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    Hi , I'm still on the pred I feel reborn and like a new man before cfs. I had all your symptom's I take 5mg Monday Wednesday Friday best decision I've ever made. Are you only 20/21???
     
  11. Jigsaw

    Jigsaw Senior Member

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    Why do you think I'm 20/21???
     
  12. TedBakerBoy

    TedBakerBoy

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    sorry i'm getting mixed up, i was assuming you were lucy1996, my apologies
     
  13. Jigsaw

    Jigsaw Senior Member

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    No worries. Not like I haven't already mixed you up with someone else, too!
     

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