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Anyone here having damage of Central Nervous System because of CMV?

Discussion in 'General ME/CFS Discussion' started by sorin, Aug 29, 2016.

  1. sorin

    sorin Senior Member

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    Dear all,

    Has anyone here damage of Central Nervous System because of CMV? I have huge levels of CMV IgG (500 while normal <0.5) and Elispot CMV (300 while normal <2) but CMV PCR undetectable and CMV IgM negative. Instead I have muscular weakness, problems with facial muscles, arms, legs, eyes nerves, and a sensation on my head like some worms are continuously moving on my scalp (probably intracranial tension), so lots of neurological problems. If anyone of you experienced the same please share here your story, treatment and testing you have done.
    Thank you in advance.
     
  2. trk483

    trk483

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    I am so sorry you are experiencing these awful symptoms. I became diagnosed with CMV this past May and it has changed my body completely. I was bedridden for most of 2014 due to a near death colitis infection (my doctor thinks was caused by CMV) and have spent the past two years stagnant due to my illness. I have experienced cognitive issues like brain fog, slurring words, saying the wrong word, not being able to form my sentences and a complete lack of focus pretty consistently for the past two months. I am typically a very focused, sharp minded person so this is very difficult for me. I too have constant muscle weakness throughout my entire body and I also experience twitching in my under eye and even lip area. I have not seen my doctor since July when she began treating me (I see an integrative doctor) and at that point I wasn't dealing with these issues severely, so I haven't had any additional testing done for it. For CMV, I take Lysine and Olive Leaf and that has helped with a lot of the symptoms. Do you eat a strict diet? When I first became ill I started having (what I thought were) bizarre food intolerances and it turns out that what I was eating encourages CMV to replicate and really all herpes viruses. I must strictly avoid all nuts, seeds, grains and legumes to feel good. I also don't eat any refined sugar or dairy on advice of my doctor, though I was avoiding it prior. The diet was a huge stepping stone to healing for me. I will be happy to keep you posted on what my doctor says when I see her next! Wishing you good health. X
     
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  3. sorin

    sorin Senior Member

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    Thank you so much for your reply. I am very sorry to hear that you had these serious problems and I hope you are better now. I had also most of the symptoms you described, though not so severe, I mean was not bedridden but had very big problems in doing trivial day to day tasks, for me it was like doing herculean tasks. But since 5 months ago my doctor prescribed Valtrex 500mg 3 pills per day, and started now to feel better, but not recovered. I take also 4 pills of Isoprinosine daily, and Lysine 2 grams per day and some antibiotics because Elispot for Borellia was positive. I want to ask you, what tests showed that your problem is mainly CMV? Is your IgM CMV positive or PCR shows viral loads of CMV currently present in your body? I ask this because in my case I have only huge levels of IgG CMV but no tests positive on current CMV (like IgG or PCR) and this confuses not only me but lot of doctors who thinking on "classical theory" that says that IgG shows past infection and IgM shows current infection are tempted to say I do not have any current CMV infection. But this theory is more and more controversial nowadays.
    The second question is: do you have other co-infections or health problems? Because some people say that CMV replicates on a weakened immune system, but what makes the immune system weak? Lot of material on web mention CMV problems for persons with cancer or HIV. But are these the only favoring factors of CMV development?
    Regarding the diet, I do not eat beef or pork (but fish and chicken), but apart of this I am eating almost everything including bread, pasta, cheese, vegetables and fruits. I did not know that legumes, nuts, diary and grains encourages CMV to replicate. That is interesting, so I must eliminate these?
    I wish you all the best and fast recovery!
     
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  4. Helen

    Helen Senior Member

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    Experienced doctors I´ve met told that a positive IgM shows an ongoing infection BUT a negative IgM might be a false negative if the patient has been infected for a long time. Therefore other tests are also needed to confirm a diagnose.
     
  5. sorin

    sorin Senior Member

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    What other tests?
     
  6. Hip

    Hip Senior Member

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    Would you have any links for these, as I have not seen any evidence that these work for cytomegalovirus. Here is my list of compounds which have been shown to possess anti-cytomegalovirus activity:


    Anti-Cytomegalovirus Drugs

    Valcyte (valganciclovir)
    Vistide (cidofovir)
    Foscavir (foscarnet)
    Artesunate (anti-malaria drug) 1 2 Artesunate 10 times stronger antiviral for CMV than artemisinin
    Raltegravir antiviral for cytomegalovirus 1
    Methotrexate (an old arthritis drug similar to rituximab) 1 2
    Brincidofovir (CMX001) 1
    BHT (butylated hydroxytoluene) 1 See my post about BHT and liver cancer
    Emetine stops replication of cytomegalovirus (also induces vomiting) 1


    Anti-Cytomegalovirus Supplements

    Tricin (a flavonoid found in rice bran) at a doses starting from 7 mg showed "extremely high anti-human cytomegalovirus activity" 1 Unfortunately there is far too little tricin in rice brain to make eating it worthwhile for antiviral purposes — you would have to eat 10 kilos of rice bran a day to get 7 mg of tricin. Shame, because tricin would be an extraordinary antiviral for cytomegalovirus otherwise.

    Baicalein 1 2
    Genistein
    Terminalia chebula
    1
    Clove essential oil (eugenol in clove is antiviral for CMV; eugenol also found in basil, cinnamon, lemon balm essential oil) 1 2
    Lactoferrin antiviral for CMV via inhibition of cell entry 1

    Monolaurin (Lauricidin®) 1
    Garlic extract 1
    Diallyl trisulfide (aka: allitridin) from garlic comparable to the antiviral drug ganciclovir for treating cytomegalovirus 1

    Hypericin (from St John's wort) inactivated murine cytomegalovirus, especially on exposure to light. 1 Hypericin plus light creates singlet oxygen. Highest singlet oxygen generation with white light or 600 nm wavelength light. 1

    COX-2 inhibitors blocks human CMV replication. 1 Propolis is a potent COX-2 inhibitor.

    Inhibitors of prostaglandins inhibit the growth of human cytomegalovirus and reactivation of latent virus in a cell line. 1 Ginger is a potent inhibitor of prostaglandins. Alpha acids from Hops (available as Perluxan®) a potent prostaglandin inhibitor.

    Alpha acids from Hops (available as Perluxan®) showed mild to moderate antiviral activity against CMV 1

    Curcumin protected mice against human cytomegalovirus infection possibly by its anti-inflammatory and antioxidant effects 1
     
    Last edited: Dec 4, 2016
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  7. trk483

    trk483

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    That is quite a list! I am happy to hear that you have found a combination that is working for you. :) I am hardly the expert on treating CMV, however I'm just trusting that my doctor knows what she is doing, as I had seen 50+ doctors prior who could not figure out what was wrong. I'm told the lysine works to block the activity of arginine, which encourages the replication of herpes viruses, including CMV. This is also why I no longer eat any arginine rich foods (nuts, seeds, grains, legumes). This has honestly made a world of difference for me. My doctor doesn't like to prescribe antiviral's right away (even though that is what I asked for) because of the toxic affect it can have on the liver. Olive leaf has antiviral, antifungal and anti parasitic, as well as immune boosting properties, so I believe that is why I'm also taking this. I am not stating that these are the only or best supplements to take for CMV or even that they work for everyone, just that this is what has worked for me in some capacity. I have so much to learn about this virus and I do believe I could benefit from the addition of an antiviral, especially considering my cognitive issues. I also take curcumin and it has worked great for me. X

    Link for olive leaf study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002804/
    Link for lysine: http://umm.edu/health/medical/altmed/supplement/lysine
     
  8. Hip

    Hip Senior Member

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    Glad lysine has helped you so much. I found this study which says arginine shortage resulted in decline in cytomegalovirus production in infected cells. So that ties in with your doctor's theory.

    Were you also checked for other viruses, such as herpes simplex? Lysine has been shown in studies to inhibit HSV. Refs: 1 2

    Someone here had a theory that if you are a good methylator, arginine may promote herpes simplex virus replication; whereas if you are a bad methylator, arginine may inhibit herpes simplex virus replication.
     
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  9. trk483

    trk483

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    I am glad you are feeling somewhat better. :) I am not positive what tests she did in entirety for the CMV panel, however I know I had positive IGG & IGM. I haven't had any other testing done yet, I am supposed to go back for a full viral panel, mthfr testing, lyme testing and a scan of my pituitary gland (I have very high cortisol) as she suspects I have something else, so I don't know about any other viruses, co infections or any other health issues at this point. I've never been in great health. My mother did not have an easy birth and I was not breast fed, so I believe that may have something to do with it. I've had pneumonia nine times beginning at age 2, asthma, chronic sinus infections, acid reflux, and gastro problems. I saw a doctor about 5 years ago who discovered I had dairy and wheat intolerance and cutting out those two foods completely put an end to my allergies and asthma. I no longer suffered from sinus infections, pneumonia or stomach problems. I finally felt good for the first time in my life, until I became extremely ill in 2014. It has been an uphill battle since. I was feeling great, my strongest ever, at the time I believe I came down with CMV, so I honestly don't know what is causing our immune systems to be so weak that the virus can so easily replicate. I eliminated those foods because I learned they are high in the amino acid arginine which causes herpes viruses to replicate. For me, eliminating them made a huge difference. If I do eat them, I feel awful. Maybe you could try it out? Thank you so much! X
     
  10. trk483

    trk483

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    Thank you. :) I have not been checked for any other viruses aside from EBV, which was negative. I am supposed to go back to get a full viral panel, crossing fingers its only CMV. That is so interesting - my doctor was suspecting I was not a good methylator, so she is ordering MTHFR testing. Hopefully the theory will be true!
     
  11. Shawn

    Shawn Senior Member

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    if CMV DNA and IGM is negative it's likely not the virus and more likely an auto antibody auto immune response,viruses can trigger antibodies that attack receptors in the brain and nervous system,this is what happened to me after a HSV infection ,a crazy high IGG titre is also a sign of an out of whack immune system in dysfunction.

    http://forums.phoenixrising.me/inde...anti-nmda-antibodies.47413/page-8#post-791108
     
  12. Shawn

    Shawn Senior Member

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    Huge levels of IGG for CMV indicate your immune system B cells response is out of whack and running rampant and some auto antibodies may be causing your issues ,likely an immune mediated response and not the virus as if the DNA is negative in the blood it's just not the virus directly no matter how much we want to think it is,it's an incorrect immune response
     
  13. Shawn

    Shawn Senior Member

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    Licorice root and garlic are amazingly potent at knocking out viruses esp the former
     
  14. Shawn

    Shawn Senior Member

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    Methotrexate is a chemo immune suppressant drug it will weaken your immunity and that is not smart when you have an active CMV infection ...
     
  15. Hip

    Hip Senior Member

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    Sure. Methotrexate is included in the list just for completeness. It does increase the risk of developing infections, since methotrexate is a mildly immunosuppressive drug. However, methotrexate has a potent antiviral effect against cytomegalovirus. Methotrexate's antiviral mechanism of action for cytomegalovirus is via folic acid antagonism (if you take folinic acid with methotrexate, the antiviral effect on cytomegalovirus disappears — see here).

    A patients' transient recovery from ME/CFS due to methotrexate treatment was one of the first observations made by Fluge and Mella, and they reasoned that it helped ME/CFS through B-cell depletion. They then moved on to experimentally treating ME/CFS patients with rituximab. See here.

    Though methotrexate is a potent drug with the potential for serious side effects, and it can also increase the risk of developing certain cancers, so it certainly would not be the first choice as an anti-cytomegalovirus treatment, unless perhaps you are a rheumatoid arthritis patient whose doctor was considering prescribing methotrexate.
     
  16. sorin

    sorin Senior Member

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    So what actually means this? You are saying that the cause is not viral but auto-immune disease? Looks like there are a lot of auto-antibodies https://en.wikipedia.org/wiki/Autoantibody
    To which of them to do testing?
    And is there any cure for such kind of disease?
    If I remember well I did in the past some testing for ANA and ANCA, and were negative. But you never know, might be a false negative?!?
    I should correlate what you said with the fact that I have higher CD8 values, and a CD4/CD8 ratio < 1 (is about 0.65 and normal is >1). This was interpreted that some over-reaction of the immune system, the question is: over-reaction to what?
    Or can be other virus, not necessarily CMV which is causing this IgG for CMV as a wrong response of the body?
     
  17. JES

    JES Senior Member

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    Yes, there is a cure for B-cell driven malfunctional autoantibody response: Rituximab. The problem is there are likely many different subgroups of CFS/ME patients, so treatment with Rituximab is not very sensible unless you know you belong to a group that is likely going to respond to it, as there are risks with this medication.
     
  18. vision blue

    vision blue

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    Same symptoms, different virus - recurrent herpes simplex 1 or zoster for me. But I keep testing CMV and have wondered if they could be false negative results.
     
  19. vision blue

    vision blue

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    This is a good point. I read one of the studies on how rituximab helped in a subset of cfs patients- but they never mentioned whether it helped the subset i appear to be in - one that has low igg3 and also elevated igg2. if i find out, i can post if others are interested. I also had thought, ok, rituxin depletes B cells, so lets see if I can get evidence my B cells are over active. But my IgG, IgM, and IgA are all "in range", so I can't get the proof i need- or rather the justification to risk a risky treatment.
     
  20. sorin

    sorin Senior Member

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    Can you please give some details on your specific CMV tests and corresponding results? Did you do PCR, IgG, IgM ?
     

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