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M.E. caused by enterovirus?

Discussion in 'General ME/CFS Discussion' started by knackers323, Jan 24, 2014.

  1. knackers323

    knackers323 Senior Member

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    Anyone familiar with hfme.org? I haven't had a chance to read it all but it is claimed matter of factly that the cause of M.E. is an enterovirus.

    Is this known fact? Am I way behind or what?

    I have tried looking for contact details on the site to question them on this but cannot find any.
     
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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dr chia is the man for this. Google his research. The main problem with EV is its really hard to test. Blood tests can be negative when EV is in the tissue. The most accurate at this stage I have heard is stomach biopsy but they wont do this biopsy just for ev tesying most ofvthe time pepple are getting an endoscopy for other issues and while in thete get a biopsy and send it off to chia. I know of one aussie who got all this sorted and tested positive for ev.

    The other issue is that there is no recognised treatments although interferon treatment seems to work but from what I have heard is that the treatment is worse than the cause. Relapse are common but can get remissions for upto 12 months.

    Dr chia has had success with his herbal supplement equilibrant but its a 50/50 success rate and relapses common when treatment stopped but its worth s crack.

    Also its worth noting that immunovir is an interferon inducer so stimulates yiur own immune system to make more of its own interferon. Inosine is an alternative. I have had some success with cycloferon which also is an interferon inducer.

    If ev is the cause of ME then this is probably whats causing immune suppression and allowing other infections to reactivate such as ebv and other infections which are so commonly seen. I think treating these other infections can help free up the immune system some to help fight ev as well as improve general symptoms.

    ME well we just dont know. Best we can do is try to cover all basis ie treat infections u find and try and improve immune function. 100% cures are rare unfortunately? ?
     
  3. lansbergen

    lansbergen Senior Member

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    http://vir.sgmjournals.org/content/84/12/3495.full.pdf

    Transfection of prion protein gene suppresses coxsackievirus B3 replication in prion protein
    gene-deficient cells

    The pathogen I suspect steels PrPc. ME patients still have the prion gen but could have decreased PrPc. The effects will be less dramatic but could be enough to give coxsackie more chance. .
     
  4. globalpilot

    globalpilot Senior Member

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    I always take antibody tests with a grain of salt because antibodies can cross react. And it looks like that is what happens with the VP1 protein - the antibody that reacts with that also reacts with proteins from 2 mitochondrial enzymes. http://www.ncbi.nlm.nih.gov/pubmed/23335350

    So, if you test positive to the VP1, it's not clear if that's the virus or one of those 2 proteins. I'm not sure what cross-reacts with the dsRNA.

    First time I tested, I was +ve for dsRNA (2+), -ve for VP!.
    Second time I tested, I was the opposite.

    It didn't make any sense at all until I learned about the above cross-reactivity. I've lost faith in that test.
     
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  5. ukxmrv

    ukxmrv Senior Member

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    The enterovirus theory was popular when I got ME in the 1980's. Dr Ramsay was a supporter of this theory. The NHS even used the VP1 blood test on patients then.
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What were they finding In testing than? ?
     
  7. ukxmrv

    ukxmrv Senior Member

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    I never saw a published paper on it, Heaps, but there seemed to be a lot of positive results in my London ME group.

    It was developed under as a project of this lovely doctor plus Professor Mowbray of St Mary's I think.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124231/

    I know that he used IMIG later but at the time I had the VP1 blood test the only treatment the NHS could offer was Amantadine.
     
  8. Ayaju

    Ayaju *****

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    After meeting with Dr. Chia for two hours last year, I totally believe that CFS is an enterovirus and not an autoimmune disease at all! He is desperate to get a drug made to help us, but as usual, no one is listening to him. And by "no one'' I mean the powers that be in the medical world. You know how it is; they don't care about us!

    The enterovirus research did begin in UK.

    Dr. Chia found a bit of it in my blood, but I never went through with the stomach biopsy. Didn't see the point yet! Not doing any treatment (Equilibrant).

    Judy
     
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  9. knackers323

    knackers323 Senior Member

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    Hi Judy if your convinced of the cause why are you not doing any treatment? Does dr Chia only offer equilibrant as treatment option now? Thanks
     
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  10. Ayaju

    Ayaju *****

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    The risks of taking Equilibrant outweighed the possible positive effects, in my opinion. I mean, for me personally. Everyone is different. :)
     
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  11. knackers323

    knackers323 Senior Member

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    What are the risks? I take it then that it is the only option for enteroviruses.
     
  12. Ayaju

    Ayaju *****

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    It can be problematic if you have autoimmune diseases. I have Hashimotos. RA is in my blood test even though it's not presenting. Dr. Chia thinks I could probably take Equiliabrant even though he doesn't recommend it for most patients that have autoimmune diseases. It just depends on each individual case. I simply don't want to risk getting sicker; I've been doing so much better lately because of structured water and tweaking my diet. There is a possibility that if I take Equilibrant, I will get more pain in my body, he says. He says as the fatigue gets better on Equilibrant, FM type pain could emerge, and that the pain may or may not go away. I don't even have FM, and I don't want to risk it. I'm pain-free right now because of my new way of living! I'm not going to mess with that! :)

    If my Hashimotos goes away, I might re-think this whole thing. The Hashimotos is getting better, so it's a possibility.
     
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  13. Raindrop

    Raindrop Senior Member

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    Ayaju,
    Just read your posting. Can you tell me,
    what is "structured water"?? How does he assess if you are in the more "autoimmune" sub-category,
    if you don't illustrate that on blood tests? Would you recommend that if we could get to Dr. Chia to
    do so or would you only suggest it for certain types of pts. If I am understanding things correctly
    he *can* see the Enterovirus to some degree from regular blood work?
    SO upsetting that he can't get funding!!
     
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  14. knackers323

    knackers323 Senior Member

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    Anyone know if Lipkin is looking for EVs in tissue?
    Have you tried the oxymatrine Heaps?

    @ukme did you or anyone you know of see any results from the amantadine?
     
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  15. ukxmrv

    ukxmrv Senior Member

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    I had such a severe reaction to the Amantadine that I didn't continue. It left me buzzing, hyper and with severe insomnia. Couldn't sleep for 48 hours the first time. Then I tried a smaller dose but it was still very bad.

    Didn't know of any cures with Amantadine but patients in my group reported improvements if they could cope with the side effects which most could not. A while back I bought some online to try again but forgot.
     
  16. Firestormm

    Firestormm Guest

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    I think Dr Chia has to replicate his hypthesis in a study with significant size and overcome the recent possible problems associated with that test you were talking about recently that was reported to create false positives. Why wasn't Chia involved along with Montoya and Peterson with Lipkin in the Pathogen Hunt? You'd think Chia would be only too keen. Maybe Lipkin will seek out Chia himself as his team moves into the 'shadow' realm. @Simon might have some thoughts on this - though I know he's busy at the moment.
     
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A friend had 30 pills of equilibrant left over he gave me to try. I am using just one pill a day so far haven't noticed anything positive or negative but 1 pill isnt much. Chia gets people to work up to 6 pills a day so the low dose im on may not be enough. They sell a cheaper version on iherb made by nutricology search for sophora? Worth a shot. Im not 100% sure ev is an issue for me only cause I have responded well to antivirals for cmv but im not 100% so guess could be an issue. As I said testing is the hard part. Interferon inducers I use would also help with ev also??
     
  18. SOC

    SOC Senior Member

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    My mild (by PCR) Coxsackie virus (an enterovirus) and equally mild parvovirus B19 (not an enterovirus) cleared up within 3 months with only 1 Equilibrant daily. I did feel noticeably, but not hugely, better.

    I stopped taking E after 9 months but when I began having regular flu-like symptoms again I went back on E. For me it seems to help at a low dose.

    It has not been a cure, or even a really big improvement like Valcyte, but has been effective as one of many treatments that give noticeable improvement.

    Worth noting-- I'm fighting back from bed bound, severe ME so what seems a smallish improvement on my scale of need could feel like a big improvement to someone with mildish ME.

    Also, I've only taken 1 E daily because my enterovirus infection appears mild. Higher doses might be more effective for more serious infections.
     
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  19. alex3619

    alex3619 Senior Member

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    Let me point out, for those who are not aware, that polio virus was an enterovirus, possibly evolved from Coxsackie A, and that post polio syndrome is very like ME, and that in animals other enterviruses have been demonstrated to cause a polio like illness.

    Poliomyelitis only had severe symptoms in less than 1% of patients. Sound familiar? ME outbreaks were known to track polio outbreaks, which had ME called atypical poliomyelitis for a long time.

    Yet @Firestormm is right, we need replicated studies, independent studies, and better ways to cross-check results.

    Yet if this problem is, for example, due to cross-matching of antibodies, we really need to find out what it is cross matching to. This is an expensive problem, but I think technically feasible.
     
    Last edited: Jan 25, 2014
  20. Ayaju

    Ayaju *****

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    @Raindrop He found my autoimmune stuff through blood tests. I would definitely recommend consulting with Dr. Chia if you have CFS. His blood tests are specialized regarding finding the enteroviruses; no other doctor in the country can do them as far as I know. He had me go to a lab near my home then had the blood sent to him.

    Respectfully, I love structured water devices so much I became an independent consultant for the company which prohibits me from saying much about it on the forum. In a nutshell, 94% of people are dehydrated; structured water has a much lower surface tension than tap or purified or bottled water, which allows it to penetrate the cells and hydrate the body.

    Judy
     

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