Wonderful new research on infections CFS/ME fibro

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Jul 2, 2008.

  1. Bluebottle

    Bluebottle New Member

    This is well worth reading:


    Infection Update - Biofilms, HHV-6, Valcyte and CFS


    New research is coming out giving us a clearer understanding of what
    is needed to fight infections in general, and especially in chronic
    illnesses like Chronic Fatigue Syndrome and Fibromyalgia. In this
    article, we will talk about two new concepts that offer us more tools
    for, and insight into, eliminating these infections:

    1. Biofilms. Just as we have learned to fight
    infections by using antibiotics, bacteria are also adapting to
    survive. One way that they're doing this is by creating Biofilms.
    Biofilms represents a layer of bacteria and other organisms that live
    together in a jelly like film. This film protects them from
    antibiotics, ultraviolet light and other "predators" and makes them
    hard to kill. New research is suggesting ways to kill themdespite
    their protective layer.

    2. HHV-6 viral infections. As discussed in an earlier
    article on viral infections, HHV-6 is an important viral infection in
    CFS and other illnesses. New research presented this week at the
    HHV-6 conference in Baltimore Maryland showed that:

    a) HHV-6 makes a chemical that may contribute
    to the "brain
    fog" seen in CFS.

    b) Using Valcyte to kill HHV-6 can improve the cognitive
    dysfunction ("brain fog") seen in CFS.

    c) HHV-6 infection may also be responsible for
    many cases of bipolar illness and depression.


    In standard medicine, we are used to looking for bacterial infections
    by taking a few bacteria and putting them into a growth medium to see
    how they will grow. We then add antibiotics to the growth medium to
    see which ones are effective against the bacteria and what dose is needed.

    For early acute infections, this approach can be effective. What
    medicine has ignored, however, is that in chronic infections, both in
    humans and in nature in general, infections form their own "cities"
    called "biofilms." These biofilms are like a mucus (called
    "Extracellular Polymeric Substances" or EPS) secreted by the
    organisms, and leave the infections highly resistant to antibiotics.
    Often, a number of different bacteria or fungi live in the same biofilm.

    Because standard culturing techniques will not pick up most biofilms,
    medicine tends to treat these as if they are sterile fluid
    collections. Common examples of these would include "nonbacterial"
    prostatitis, dental infections, sinusitis and infections of medical
    materials such as implants or catheters.

    Although just starting to become available, new tests such as PCR or
    antigen testing offer new hope for being able to diagnose and treat
    these biofilm infections. This is critical, as it is estimated that
    65-80% (according to Center for Disease Control estimates) of human
    infections are caused by biofilmswhich our current testing routinely misses.

    As our awareness of biofilms increases, new approaches are being
    developed to help fight them. For example, a simple mineral called
    "bismuth" has been shown to markedly disrupt biofilms in very low
    dose. Interestingly, this mineral is sometimes found in toothpaste.
    Dental plaque is one of the most common forms of biofilm infections,
    and has been decreasing considerablypossibly because of the bismuth
    (and also because of dental floss). Bismuth is now also being added
    to medical catheters to prevent infections. I suspect that fairly
    soon, as Medicine realizes that sinusitis also reflects a biofilm,
    bismuth will be tested in nasal spray form. In the interim, the
    Sinusitis Nose Spray I recommend (available from ITC Pharmacy by
    prescription: 303-663-4224) contains xylitol, which may have a similar effect.

    For more information on biofilms: Biofilms and Chronic Infections.
    JAMA June 11, 2008. P 2682-3

    HHV-6, Valcyte and Brain Fog

    At last week's HHV-6 conference in Baltimore, Maryland, Dr. Montoya
    presented his research on the use of Valcyte to eliminate HHV-6 viral
    infections. As summarized by Kristin Loomis, president of the HHV6
    Foundation: "Dr. Jose Montoya, an infectious disease specialist at
    Stanford University, released preliminary findings on his
    double-blind placebo-controlled antiviral trial of Valcyte for a
    subset of patients displaying high antibody levels to human HHV-6 and
    Epstein-Barr virus (EBV). Statistically significant cognitive
    improvement was noted in the Multidimensional Fatigue Inventory
    (MFI-20) Mental Fatigue subscale and on patient self-reported of
    cognitive functioning, but there was not a significant result on the
    overall MFI-20 index. Data from treadmill testing, cytokine analysis,
    gene expression and other viral markers is still pending and will be
    announced at a later date."

    Basically, the early data suggest that the antiviral Valcyte is most
    effective against the symptoms of brain fog. Clinical experience
    suggests that in a significant number of people with CFS, the Valcyte
    can be very effective overall as well. As the Valcyte will not
    eliminate the infection completely, it is critical to treat with the
    entire "SHINE Protocol." This way your immune system can recover
    enough to eliminate the infection. We have found that by using the
    Valcyte along with the "SHINE protocol," we often get excellent
    results. I look forward to the release of Professor Montoya's complete study.

    Interestingly, another study presented at the conference suggests
    that chronic HHV-6 infections can create a special protein that is
    commonly found in the brains of those with CFS but not in those that
    are healthy, and that this protein may contribute to the brain fog
    often seen in Chronic Fatigue Syndrome. "Causes of many chronic
    diseases are unknown and chronic viral infection is one of the most
    suspected candidates," said Dr. Kondo, who spent 20 years trying to
    identify the latent protein responsible for chronic CNS disease and
    mood disorders.

    Research suggests that other "psychological problems" may also be
    caused by HHV-6 infection. 71% of CFS patients with psychological
    symptoms, 53% of depression and 76% of bipolar patients possessed the
    antibody against the SITH-1 protein but healthy patients showed no
    evidence of this protein. Although there are many causes of
    depression, it is quite possible that Medicine has been trying to
    treat a brain infection with Prozac!
  2. mrlondon

    mrlondon Member

    SSRIs like prozac may be capable of increasing natural killer cell activity, cells which inhibit virus replication.

    <a href="http://www.ncbi.nlm.nih.gov/pubmed/17945197">http://www.ncbi.nlm.nih.gov/pubmed/17945197</a>

    - Mark
  3. Missizzy

    Missizzy New Member

    This information is very intriguing to me as I have ME and all three of my biological sons developed bipolar at the age of 28. One also developed MS at age 22. Obviously, our family is dealing with lots of heartache, broken lives, and huge medical bills.

    Each of us has pursued diagnoses aggressively and have followed doctors' orders and taken heavy duty meds--lithium, depakote, lamictal, copaxone injections, etc. It breaks my heart to watch my sons struggle with the awful side effects of these meds. Three of us have had spinal taps, MRIs, etc. All of us have had massive amounts of blood tests and Lyme testing.

    One of my sons completed the Avonex study at OHSU and all have been treated by well reviewed neuros throughout Oregon. I've been to the Mayo to have my illness evaluated with absolutely no answers at all. The only drug I take is Klonopin to help with sleep, seizures, and neuroexcitability. But my ME has progressed to the point where I am often bedbound. My sons' quality of life has plummeted. We've experienced marital break-ups, multiple suicide attempts, the loss of two thriving businesses, numbing depression, and a total loss of interest in life. The meds just sap them of their will and joy.

    I cannot help but wonder how four healthy and vibrant people in one family could develop such debilitating diseases in such a short time span. Could HHV-6 be a factor? Is it possible that even spinal taps can show false negatives? Does anyone know if all our sons could have a blood test to show if they have the antibody against the SITH-1 protein. If they do, what is the treatment? Isn't there some teaching hospital or medical facility which would look at all of us together?

    I have so many questions and I often get tired of the quest for an answer. I'm just so horrifically sad about my beautiful sons' loss of health. They struggle with each new day. I feel that I have to press on to help them.

  4. Forebearance

    Forebearance Member

    Hi Bluebottle!

    Thanks for that! I read about bioflims for the first time in "Mold Warriors". Dr. Shoemaker described a biofilm staph infection that often happens in the noses of people with CFS/ME. It sounds awful!

    But I guess it is treatable, according to him.

    I'm so sorry to hear about all the heartache your family has been through, Missizzy. It sounds really difficult.

    This might be a shot in the dark, but have you ever considered having an HLA-DR by PCR genetic test done? It must be done through Lab Corp, which is a well-known national lab.

    I had that test done this spring and it provided me with some answers. I found out I have one genotype that makes me unable to detox mold toxins, and one genotype that makes my endocrine system susceptible to disruption.

    So I have been able to focus on those two areas and am starting to feel better.

    It was just so nice to have a test that gave me a clue. We people with CFS/ME are so in the dark about what is going on with us.

  5. Missizzy

    Missizzy New Member

    Forebearance--Thank you for replying to my post. I'm very interested in the HLA-DR test you mentioned. I googled the test and came up with links related to MS, bipolar, ME, and most shockingly, Beckwith-Wiedemann Syndrome. This is the syndrome our baby granddaughter (daughter of one of my affected sons) died of soon after her birth last year. An autopsy was done with the doctor knowing all about our families fight against MS, ME, and bipolar but no connection could be found. BWS is caused by a genetic defect (shown to come from my son) which causes the mother's natural insulin to somehow create an over-growth of cells and organs. My son and his wife have two healthy little boys, however.

    I have a hard time fully understand scientific information but what I'm wondering is whether this is a basic sort of test or a "specific" one. In other words, is it of importance that these syndromes and disorders can all be detected with this test or does the test show all sorts of things. Can their be a "link"?

    If you get a moment, can you explain just a bit more, please. Also, is this a test that would be covered by insurance? If not, do you know the approximate cost?

    Thanks so much!!