Herpes Viral infections FM/CFS

Discussion in 'Fibromyalgia Main Forum' started by DorothyVivian, Nov 1, 2006.

  1. DorothyVivian

    DorothyVivian New Member

    There seems to be mention of herpes viral infections here--especially, "Shingles"--so I thought I'd re-post a response to a post a while back on this topic:

    Herpes Viruses are major factors in Fibro & CFIDS.. from what I've learned during the years since I received the diagnosis of CEBV (Chronic Epstein-Barr Virus)over 20 years ago. Epstein-Barr virus is a 'member' of the Herpes viruses and is the major causative agent in infectious mononucleosis and I believe is one of the primary causes of the severely crushing nature of the fatigue CFIDS' sufferers experience.

    "Shingles" is caused by Herpes Zoster virus (also a causative factor of "Chicken Pox")and although Herpes Simplex is usually confined to the face, around the nose and mouth, it can also be involved with blisters anywhere--as I can verify since I had an oval blister the size of a quarter on my left hip (I know this for certain since the doctor did a biopsy of it and was surprised herself).

    Another clue to the involvement of herpes viruses is that the drugs Neurontin and Lyrica are indicated for, and helpful in reducing the pain of "post-herpetic" infections' pain.

    The Herpes 'family' of viruses is huge. One book stated the Herpes viruses included over a thousand identifiable varieties. And, this book was about 20 years old, if I recall correctly. More recent research has identified more strains of the Herpes viruses.

    Another intractable problem presented by herpes viruses is that they are retroviruses; that is, these viruses live WITHIN the cells of nerves, thus they are not in the bloodstream only and so they out of the reach of the immune system to a large degree. Also, these viruses use the nerve cells' resources to replicate. The viruses emerge to the surface of the body when the host is under ongoing moderate, to severe, stress and/or injury when becoming sick from other sources of disease or accidents. (They get ready to 'jump ship' in case the host dies to continue their 'species' survival.) Herpes viruses are estimated to be very ancient, so it appears their ability to survive works very well.

    When the acute herpes eruptions go away, this doesn't mean it is cured. So, I've learned that the best way to prevent more the more severe symptoms of eruptions, pain and massive fatigue--is to pace myself in activities: to stop when I start getting tired and to eat healthy---and to avoid detrimental behaviors like alcohol and smoking. I also get a lot of sleep and rest whenever I'm tired.

    It may be that there is a 'glitch' in the immune system of those of us who are so greately vulnerable to herpes viruses.

    All of the above is what I've learned in bits and pieces over the years and is by no means complete. This is a vast and complex subject and I am no scientist. I am only a very interested layperson and I'm extremely open to the thinking and knowlege of others.

    For years, I was an 'overachiever'--now I find contentment and joy doing fairly well what I enjoy. I'm grateful to have been able to find this way of life. It is actually better than so much pushing and rushing.

    With love, Dorothy
  2. kellyann

    kellyann New Member

    Thanks for all the great info! I have a promlem with the viruses on my face all the time. I just hate it!

    Kellyann
  3. Slayadragon

    Slayadragon New Member

    I've been trying to get my body into tip-top shape to go on an anti-viral drug, and the one that my doctor says he's used the most often is Famvir---which is anti-Herpes. Unless it's perfection (how could that be?) we're going to then try Valcyte and see what the comparison is. It will be interesting to find out.

    Meanwhile I'm doing an experiment taking 3,000 mg per day of the amino acid l-lysine, since it's supposed to create an environment unfriendly to herpes. I'm not sure about this since I've been doing other things for my health (and have had other stresses), but I think it may have helped some so far. I'll be able to tell better in time.
  4. mrdad

    mrdad New Member

    You have provided some very good an objective information
    for the members here. Met a man who has had CFS for ov er
    20 years and fealt that he had picked up the herpes virus
    about that time from a "sore" on his wife's mouth! He
    suspected that all along and has possibly verified it
    through his contact with Dr. Montoya at Stanford who had
    been successfully treating him with a Protocol of Valcyte.
    He claimed a 70 per cent improvement in symptoms but I've
    lost contact with him now so I am unsure of progress to
    date.

    My understanding is tha Dr. Montoya was preparing to con-
    struct a wider more comprehensive study! Would like to
    see the followup on it when completed. I too have CFS.

    Thanks again and I wish more people would come to your
    informative Post!

    MRDAD aka JOE


    [This Message was Edited on 11/02/2006]
  5. foggyfroggy

    foggyfroggy Guest

    It's funny (not really) that my FFC doctor said that antivirals are not very effective against Herpes virus' but since my EBV numbers are huge I sure would like to try an antiviral.

    Thanks for posting your 'bits and pieces', you've obvoiusly done lots of reading about it. I think you're right about the genetic glitch. I wonder whether we are born with it or whether it's damage caused by some infective agent - many do change our immune systems for their own benefit.

    Gretchen
  6. mbofov

    mbofov Active Member

    Here is an excerpt from Nexus Magazine (February-March 2002) which describes how coconut oil can inactivate the herpes simplex virus and other viruses and pathogens, including candida albicans. It's rather long, but well worth reading. I'm going to post it as a separate post.

    Mary


    Earlier this year, at a special conference entitled "Functional Foods For Health Promotion: Physiologic Considerations" (Experimental Biology '99, Renaissance Washington Hotel, Washington, DC, April 17, 1999), which was sponsored by the International Life Sciences Institute (ILSI) North America, Technical Committee on Food Components for Health Promotion, it was defined that "a functional food provides a health benefit over and beyond the basic nutrients".

    This is exactly what coconut and its edible products such as desiccated coconut and coconut oil do. As a functional food, coconut has fatty acids that provide both energy (nutrients) and raw material for antimicrobial fatty acids and monoglycerides (functional components) when it is eaten. Desiccated coconut is about 69% coconut fat, as is creamed coconut. Full coconut milk is approximately 24% fat.

    Approximately 50% of the fatty acids in coconut fat are lauric acid. Lauric acid is a medium-chain fatty acid which has the additional beneficial function of being formed into monolaurin in the human or animal body. Monolaurin is the antiviral, antibacterial and antiprotozoal monoglyceride used by the human (and animal) to destroy lipid-coated viruses such as HIV, herpes, cytomegalovirus, influenza, various pathogenic bacteria including Listeria monocytogenes and Helicobacter pylori, and protozoa such as Giardia lamblia. Some studies have also shown some antimicrobial effects of the free lauric acid.

    Also, approximately 6 - 7% of the fatty acids in coconut fat are capric acid. Capric acid is another medium-chain fatty acid which has a similar beneficial function when it is formed into monocaprin in the human or animal body. Monocaprin has also been shown to have antiviral effects against HIV and is being tested for antiviral effects against herpes simplex and for antibacterial effects against Chlamydia and other sexually transmitted bacteria (Reuters, London, June 29, 1999).

    The food industry has, of course, long been aware that the functional properties of the lauric oils, and especially coconut oil, are unsurpassed by other available commercial oils. Unfortunately in the United States, during the late 1930s and again during the 1980s and 1990s, the commercial interests of the domestic fats and oils industry were successful in driving down usage of coconut oil. As a result, in the US and in other countries where the influence from the US is strong, the manufacturer has lost the benefit of the lauric oils in its food products.

    As we will see from the data I will present in this talk, it is the consumer who has lost the many health benefits that can result from regular consumption of coconut products.

    The antiviral, antibacterial and antiprotozoal properties of lauric acid and monolaurin have been recognised by a small number of researchers for nearly four decades. This knowledge has resulted in more than 20 research papers and several US patents, and last year it resulted in a comprehensive book chapter which reviewed the important aspects of lauric oils as antimicrobial agents (Enig, 1998). In the past, the larger group of clinicians and food and nutrition scientists has been unaware of the potential benefits of consuming foods containing coconut and coconut oil, but this is now starting to change.

    Kabara (1978) and others have reported that certain fatty acids (FAs) (e.g., medium-chain saturates) and their derivatives (e.g., monoglycerides, MGs) can have adverse effects on various micro-organisms. Those micro-organisms that are inactivated include bacteria, yeast, fungi and enveloped viruses. Additionally, it is reported that the antimicrobial effects of the FAs and MGs are additive, and total concentration is critical for inactivating viruses (Isaacs and Thormar, 1990).

    The properties that determine the anti-infective action of lipids are related to their structure, e.g., monoglycerides, free fatty acids. The monoglycerides are active; diglycerides and triglycerides are inactive. Of the saturated fatty acids, lauric acid has greater antiviral activity than caprylic acid (C-8), capric acid (C-10) or myristic acid (C-14).

    In general, it is reported that the fatty acids and monoglycerides produce their killing/inactivating effect by lysing the plasma membrane lipid bilayer. The antiviral action attributed to monolaurin is that of solubilising the lipids and phospholipids in the envelope of the virus, causing the disintegration of the virus envelope. However, there is evidence from recent studies that one antimicrobial effect in bacteria is related to monolaurin's interference with signal transduction (Projan et al., 1994), and another antimicrobial effect in viruses is due to lauric acid's interference with virus assembly and viral maturation (Hornung et al., 1994).

    Recognition of the antiviral aspects of the antimicrobial activity of the monoglyceride of lauric acid (monolaurin) has been reported since 1966. Some of the early work by Hierholzer and Kabara (1982), which showed virucidal effects of monolaurin on enveloped RNA and DNA viruses, was done in conjunction with the Centers for Disease Control of the US Public Health Service. These studies were done with selected virus prototypes or recognised representative strains of enveloped human viruses. The envelope of these viruses is a lipid membrane, and the presence of a lipid membrane on viruses makes them especially vulnerable to lauric acid and its derivative, monolaurin.

    The medium-chain saturated fatty acids and their derivatives act by disrupting the lipid membranes of the viruses (Isaacs and Thormar, 1991; Isaacs et al., 1992). Research has shown that enveloped viruses are inactivated in both human and bovine milk by added fatty acids and monoglycerides (Isaacs et al., 1991) and also by endogenous fatty acids and monoglycerides of the appropriate length (Isaacs et al., 1986, 1990, 1991, 1992; Thormar et al., 1987).

    Some of the viruses inactivated by these lipids, in addition to HIV, are the measles virus, herpes simplex virus-1 (HSV-1), vesicular stomatitis virus (VSV), visna virus and cytomegalovirus (CMV). Many of the pathogenic organisms reported to be inactivated by these antimicrobial lipids are those known to be responsible for opportunistic infections in HIV-positive individuals. For example, concurrent infection with cytomegalovirus is recognised as a serious complication for HIV-positive individuals (Macallan et al., 1993).

    Thus, it would appear to be important to investigate the practical aspects and the potential benefits of an adjunct nutritional support regimen for HIV-infected individuals, which will utilise those dietary fats that are sources of known antiviral, antimicrobial and antiprotozoal monoglycerides and fatty acids such as monolaurin and its precursor, lauric acid.

    Until now, no one in the mainstream nutrition community seems to have recognised the added potential of antimicrobial lipids in the treatment of HIV-infected or AIDS patients. These antimicrobial fatty acids and their derivatives are essentially nontoxic to man; they are produced in vivo by humans when they ingest those commonly available foods that contain adequate levels of medium-chain fatty acids such as lauric acid. According to the published research, lauric acid is one of the best "inactivating" fatty acids, and its monoglyceride is even more effective than the fatty acid alone (Kabara, 1978; Sands et al., 1978; Fletcher et al., 1985; Kabara, 1985).

    The lipid-coated (enveloped) viruses are dependent on host lipids for their lipid constituents. The variability of fatty acids in the foods of individuals, as well as the variability from de novo synthesis, accounts for the variability of fatty acids in the virus envelope and also explains the variability of glycoprotein expression - a variability that makes vaccine development more difficult.

    Monolaurin does not appear to have an adverse effect on desirable gut bacteria but, rather, only on potentially pathogenic micro-organisms. For example, Isaacs et al. (1991) reported no inactivation of the common Escherichia coli or Salmonella enteritidis by monolaurin, but major inactivation of Hemophilus influenzae, Staphylococcus epidermidis and group B gram-positive Streptococcus.

    The potentially pathogenic bacteria inactivated by monolaurin include Listeria monocytogenes, Staphylococcus aureus, Streptococcus agalactiae, groups A, F and G streptococci, gram-positive organisms, and some gram-negative organisms if pretreated with a chelator (Boddie and Nickerson, 1992; Kabara, 1978, 1984; Isaacs et al., 1990, 1992, 1994; Isaacs and Schneidman, 1991; Isaacs and Thormar, 1986, 1990, 1991; Thormar et al., 1987; Wang and Johnson, 1992).

    Decreased growth of Staphylococcus aureus and decreased production of toxic shock syndrome toxin-1 was shown with 150 mg monolaurin per litre (Holland et al., 1994). Monolaurin was shown to be 5,000 times more inhibitory against Listeria monocytogenes than is ethanol (Oh and Marshall, 1993). Helicobacter pylori was rapidly inactivated by medium-chain monoglycerides and lauric acid, and there appeared to be very little development of resistance of the organism to the bactericidal effects of these natural antimicrobials (Petschow et al., 1996).

    A number of fungi, yeast and protozoa have been found to be inactivated or killed by lauric acid or monolaurin. The fungi include several species of ringworm (Isaacs et al., 1991). The yeast reported is Candida albicans (Isaacs et al., 1991). The protozoan parasite Giardia lamblia is killed by free fatty acids and monoglycerides from hydrolysed human milk (Hernell et al., 1986; Reiner et al., 1986; Crouch et al., 1991; Isaacs et al., 1991). Numerous other protozoa were studied with similar findings, but these have not yet been published (Jon J. Kabara, private communication, 1997).

    Research continues in measuring the effects of the monoglyceride derivative of capric acid, monocaprin, as well as the effects of lauric acid. Chlamydia trachomatis is inactivated by lauric acid, capric acid and monocaprin (Bergsson et al., 1998). Hydrogels containing monocaprin are potent in vitro inactivators of sexually transmitted viruses such as HSV-2 and HIV-1 and bacteria such as Neisseria gonorrhoeae (Thormar, 1999).
  7. DorothyVivian

    DorothyVivian New Member

    Kellyann, Lisapetrisen, Joe (mrdad), Gretchen (foggyfroggy), and Mary (mbofov)--many thanks for your responses re: the role herpes viruses play in CFIDS and Fibromyalgia.

    Mary, I found the article you quoted about coconut oil and monolaurin fascinating. I hope and believe there will be some treatments developed which are very effective in limiting the growth of herpes damages. I also believe that the will is not there yet to invest the funds needed to bring about this development, but eventually, it is bound to come.

    Again, I appreciate reading your caring and supportive posts. Thanks for offering your thoughts!

    With love, Dorothy
  8. kimberlyrose

    kimberlyrose New Member

    I totally agree with you regarding herpes virus and shingles are the cause for fibromyalgia and CFS. I was also diagnosed by my rheumatologist that shingles was the trigger that started all this pain, etc that go along with FS & CFS.
    It has changed my life for the worst since being diagnosed. It took me four years and many many doctors and blood tests to rule out all other auto immune diseases to finally get a diagnosis!!

    My whole world has changed. It definately is a very disabling, lonely, and painful disease. I used to be very athletic, working out at health clubs 3 to 4 times a week, working partime, and was also raising a child as a single parent since she was 6 yrs. old. she is now 20. sincerely kimberlyrose
    [This Message was Edited on 11/03/2006]
  9. Scapper

    Scapper New Member

    Thanks Dorothy for your post.

    Thanks also to Mary for posting that article. I've been taking Monolaurin, along with homeopathics for a variety of the Herpes family viruses. It was nice to see that Monolaurin is recognized and effective.

    Since I've been taking this combination for 6 months now and have yet to feel any symptomatic difference, I begin to wonder.

    I feel more hopeful since reading this!

    thanks......scapper
  10. Bruin63

    Bruin63 Member

    I was dx with the Herpes virius back in 96, but had the symptoms for years, and not one single Dr. tested for it, even tho I mentioned having a sore, spot.

    I think, that considering I am now battling a Staph Infection, that it's probably related.

    I have a Big Interest in what are called "Stealth Viruses".

    If you think a FMS flair is bad, add on a Herpes Flare, and You just want to roll over and never get up again.

    I run fevers, have bad fatigue, and there are some questions now about the "Skin Intergirty", which, is not a good sign.

    My Brother has so many infections that they put in a picline due to his viens going so flat you can see them.

    In my research, I did come across a reference to a Gene, and considering, that I have a Brother, and 2 Sisters with some for of Staph infection, and then me coming down with it, I think there might be something to it.

    We all, (6 Siblings) have FMS, so I'm not to surprised, but reading that, Gene theroy.

    With the life I have lead, I cannot even tell you, When I got it, only when the first symptoms occured, back in 1980.
    Oh yeah, and the Stupid Dr. called it "HoneyMoonitis",
    Now that was a dumb dr. grr.

    sharonk
  11. lenasvn

    lenasvn New Member

    Would you please let me know what you found about the gene thingie? I am greatly interested. Looking back at me and my mom, this sounds like something I need to look into. Is it a suspensibility to more pronounced illness than the general population from EVC and CMV, since most people have them in their bodies?

    I hope you read this!

    HugS
  12. Bruin63

    Bruin63 Member

    This is the website, that I found the most informative, for me to understand what is going on with my Bro and my Sister, who has MARSA.

    http://textbookofbacteriology.net/staph.html

    There are some diagrams there too, that can help, I am more of a Visual type of person, when it comes to learning I have found.

    Hope that's not to much info, but if you mark it, you can take your time, the comment about the Gene, is in the middle of the article.

    Hug's,
    sharonk
  13. kellyann

    kellyann New Member

    I tried Famvir, was on it for 3 months. And that was 3 months of pure hell. I was so sick. So sick I could barely move. And Famvir is so expensive, I hope your insurance will pay for it! Good luck!
    Kellyann
  14. Slayadragon

    Slayadragon New Member

    My doctor said to try Famvir for up to one month, then to switch to Valcyte if it was problematic.

    My insurance has no problem paying for this one. I don't even think it's the highest co-pay tier.

    What were your symptoms when you were sick?

    Do you think it was die-off or a bad reaction to the drug?

    What dosage were you taking? I'm wondering with these anti-virals if (as with killing yeast) it might not be best to start at a conservative level and then work upward, rather than risking a really bad reaction

    My ("progressive") doctor says he's had a very large number of successes with Famvir, but that obviously doesn't mean it's for everyone.

    He also uses an anti-viral drug that he says is much milder and can be of some help to people. It is called Amantadine. If you still think your problems are viral, you may want to look into it. I took it for about two months with no result. When I went back to him, he said it usually takes three months to kick in, but with my viral load I needed something stronger.

    You might want to try Amantadine if the Famvir was too much for you, therefore....

  15. Slayadragon

    Slayadragon New Member

    I bought some coconut oil on the recommendation of people on this board, even though I have a coconut allergy. It made me feel much worse than when I eat pure coconut, which upon reflection makes sense. Worth a try, though.

    Probably I missed something in that article above, but is there a way to get the monolaurin without the coconut?
  16. karinaxx

    karinaxx New Member

    that was simple and clear written and good info.

    if these viruses are the cause, is very controversal, but certainly they play a role.

    thanks again
    karina
  17. kellyann

    kellyann New Member

    Wow,
    Famvir costs like $700 per month, seems like that would be on a high tier as far as insurance. If not,I need your insurance, haha!

    As far as my symptom of sickness, Extreme fatigue, Felt like I was dying, Became too much for my lymph node system to handle: I had huge tennis ball sized swellings of lymp nodes under my arms(was horrible),Sickest I've ever been

    It was due to die off

    I'll pass on antivirals for awhile, I can't deal with them