THE WELLNESS TRAIN -HHV6 - INFORMATION THESE LINKS ARE FOR YOUR INFORMATION ONLY. WELLNESS TRAIN DOES NOT ENDORSE ANY SPECIAL WEB SITE OR PROGRAM. IT IS OUR HOPE THAT THIS INFORMATION WILL HELP YOU DECIDE ON WHICH ROAD TO TAKE ON YOUR RIDE TO WELLNESS. WELLNESS TRAIN GROUP THE VIRUS WITHIN INTRODUCTION - WHAT IS HHV6 - And FMS/CFS From Nicholas Regush's Book ' THE VIRUS WITHIN" The virus is called HHV-6 and it is a ruthless enemy a stealthy invader with no brain, no nerves, no skin. It cannot see, smell, hear or taste. It is a "sleeper" that can suddenly awaken to attack the body's vital organs, destroying nerve connections and brain cells, resulting in irreversible illness and death. A mysterious, little known virus that evades detection and treatment, HHV-6 has been implicated in a host of illnesses, including AIDS, MS, CFS, Childhood brain and blood disorders, and some cancers. How is HHV-6 transmitted? Why does it live harmlessly in the body, only to strike without warning, compromising and ultimately ravaging the entire immune system? Determined to find answers, scientists Donald Carrigan and Konnie Knox began devoting all of their time to studying HHV-6. In illness after illness, it was found to be present in humans. At the same time, other researchers revealed related viruses to be deadly chameleons with the ability to conceal themselves, to change and to mutate within the body. But that was only part of the picture. As Carrigan and Knox began putting the pieces together about this insidious ticking bomb, risking their careers to pursue ever more startling lines of inquiry, they found themselves fighting an uphill battle. Their controversial findings were being ignored; the crucial funding they needed was virtually nonexistent. They wanted to help understand and control the virus before it spiraled into a major epidemic. So far may of their efforts have met with resistance. Yet these maverick scientists continue to seek solutions to this growing health threat that has profound implications for all of us. NICOLAS REGUSH is an award winning and Emmy nominated medical and science journalist at ABC News, where he produces segments for WORLD NEWS TONIGHT with PETER JENNINGS and also writes the popular "Second Opinion" column for abcnews.com. A reporter at the Montreal Gazette for twelve years, he has written investigative pieces for Mother Jones and Equinox, among other magazines in the USA and Canada and he has appeared on numerous radio and TV shows. He lives in New York and Canada. Mr. Regush's Book is available at: Amazon.com Click here to Order from Penguin Putnam Stealth Virus Information Stealth Virus Info Stealth Viruses: Definition, Pathogenesis, Testing and Potential Therapy W. John Martin, M.D., Ph.D. Center for Complex Infectious Diseases Rosemead, CA 91770 Phone 626 572-7288 e-mail: ccidlab@hotmail.com Cytopathic viruses that lack antigens required for protective anti-viral cellular immunity, have been grouped under the generic term "stealth." These viruses characteristically induce a vacuolating cytopathic effect (CPE) in cultures of normal human fibroblasts (Am J Path 1994; 145:440-51). The stealth virus infected cultures can be distinguished from cultures of conventional hepesviruses, adenoviruses, enteroviruses and retroviruses, by the appearance and host range of the CPE, and also by using selective immunological and molecular probe based assays. Stealth-adapted viruses can acquire additional genetic sequences from infected cells, including cellular genes with potential oncogenic activity (Mol Exp Path 1999; 66: 15-18). Certain stealth viruses have also acquired genes from bacteria and have been co-designated as viteria (Mol Exp Path 1999; 66: 8-14). Over expression of the assimilated cellular and bacterial genes, probably explains the presence of intracellular and extracellular debris-like structures commonly seen in long-term stealth virus cultures. Stealth viruses have been recovered from the blood, cerebrospinal fluid, urine, throat swabs, breast milk, brain biopsies and tumor samples, from patients with various neurological, psychiatric, auto-immune and neoplastic diseases. The characteristic vacuolating CPE and inclusion-like structures, can be seen in brain and other tissue biopsies obtained from infected patients and animals (Pathobiology 1995; 63: 115-118; Pathobiology 1996; 64: 1-8; Mol Exp Path 1999; 66:19-31). The lipid-laden cells infected with a stealth virus appear especially favorable to the growth of intracellular bacteria, including Borrelia burgdorferi, the agent of Lyme disease. This is in keeping with the consistent finding of positive stealth viral cultures in patients diagnosed with chronic Lyme disease. Specific therapy for stealth viral infected patients has mainly included anti-herpesviral medications, including acyclovir, valcyclovir, famciclovir, ganciclovir and forcarnet. Of these agents, ganciclovir administered either intravenously at 5mg/Kg once or twice a day, or orally at 3,000-4,500 mg/day, for a 4-6 weeks, has reportedly provided the most consistent, if still only partial, benefit. Not all patients have responded, however, and there is understandable reluctance to use potentially genotoxic compounds, especially in children. A trial of antibiotics and anti-fungal agents has helped certain patients, and may be addressing a possible reservoir of stealth viruses within a patient's bacterial and fungal flora. Symptomatic relief is also indicated in stealth viral infected patients. The spatial segregation of brain functions renders this organ uniquely susceptible to localized stealth virus induced damage. Dysregulated neural networks and responses, reflecting an underlying viral encephalopathy, can be addressed using neurally active drugs and various forms of modified afferent stimulation of the brain. Altered autonomic system regulation of blood pressure and of other physiological adaptations, as well as any documented hormonal deficiencies should be treated with appropriate medications. Benefits have been claimed by patients taking specific metabolic enhancing agents, such as S-adenosyl-methionine, creatine, betaine, folic acid, vitamin B6 and B12, NADH, etc. Dosages are not yet standardized and the caveat remains that one could conceivably be "feeding the virus." Studies on the effects of various alternative medications on the development and recovery from stealth viral induced CPE are currently underway within the laboratory. Stealth virus testing is available from CCID. An Acid Citrate Dextrose (ACD) yellow-topped tube of whole blood should be sent via Federal Express to the laboratory, accompanied by a physician request for testing. Stealth virus discussion groups for patients, and a restricted group for interested physicians, are available on the internet at www.onelist.com. Additional information regarding these groups and copies of various research publications on stealth viruses, can also be viewed at www.ccid.org Human Herpesvirus 6: An Emerging Pathogen Anti Viral Drug Therapy Antiviral Drugs and HHV-6 Sensitivity of HHV-6 to Antiviral Agents Data concerning the sensitivity of HHV-6 replication to antiviral agents is inconsistent. Investigators studying this subject use different laboratory-adapted strains of virus, different cell culture media, and different viral detection systems for measurement, which results in the generation of conflicting data. In order to obtain definitive information, using clinical isolates of both virus variants (HHV-6A and HHV-6B) in cell culture systems that accurately provide a quantitative measurement of the inhibition of viral replication is essential. We have successfully developed and used such cell culture assay systems. The following is a summary of our laboratory data and other published information pertaining to the susceptibility of HHV-6 to suppression by various antiviral agents. Ganciclovir is the only drug that has demonstrated its ability to successfully treat brain infections by HHV-6. However, it must be administered intravenously and can have serious side effects. At the present time, the most promising orally administered drug with respect to the treatment of HHV-6 infections is VALTREX (acyclovir prodrug), which has been shown to prevent HHV-6 associated illness in bone marrow transplant recipients. The use of Valtrex to treat ongoing, established HHV-6 infections has not been described in the scientific literature. Summary of Antiviral Agents Beta Interferon AVONEX or BETASERON Interferon's are used to treat certain types of cancer, chronic infections (e.g. Hepatitis C) and other diseases of infectious or autoimmune origin such as multiple sclerosis. Interferon also has known antiviral properties. Studies by our laboratory, in collaboration with investigators at the Pathogenesis Corporation in Seattle, Washington, have shown that strains of HHV-6 are sensitive to suppression by beta interferon. This finding is consistent with the known antiviral activity of interferon. However, our laboratory's data indicate that the current dosage regimens (for MS patients) produce serum levels of the drug capable of suppressing the replication of HHV-6 by less than 50%. This modest suppression may be important when beta interferon therapy is used in conjunction with another type of antiviral agent. Dual Antiviral Drug Therapy for Herpesvirus Infections. Ganciclovir CYTOVENE Ganciclovir is a drug used to treat CMV retinitis. It is available in both oral and intravenous forms. Studies have shown that HHV-6 replication is effectively suppressed by intravenous ganciclovir and the drug has been used to successfully treat life-threatening HHV-6 infections of the brain and spinal cord in bone marrow transplant recipients. Treatment with intravenous ganciclovir may cause potentially serious side effects, most commonly bone marrow suppression. Oral ganciclovir is available, but it produces relatively low serum levels of the drug and is unlikely to be highly effective against established HHV-6 infections. Roche Laboratories has developed a new formulation of oral ganciclovir called ProGAN. It appears to achieve serum levels of the drug that are equivalent to those obtained with intravenous therapy. Currently being studied as a treatment of cytomegalovirus retinitis in patients with AIDS, it may be available within the next one or two years. Acyclovir ZOVIRAX Acyclovir is used to treat herpes simplex (HSV), varicella zoster (VZV) infections. It is available in oral form. Available data indicate that HHV-6 is relatively insensitive to the inhibitory effects of acyclovir. The mean inhibitory concentration 50% (IC50) of acyclovir for HHV-6 strains is approximately 30 uM, a concentration well above the plasma levels achievable with either oral or intravenous therapy. Acyclovir VALTREX Valacyclovir or VALTREX is an orally delivered drug chiefly used to treat HSV and VZV. It is a prodrug of acyclovir, meaning that it is converted to active acyclovir within the body. This results in higher levels of drug in the blood stream and it is believed that this level of drug might be partially effective against HHV-6. Valacyclovir has been used to effectively decrease the incidence of HHV-6 associated disease in bone marrow transplant recipients. Thus it is effective against reactivation of HHV-6, but may not be effective in suppressing an active, chronic infection. Studies have also demonstrated that VALTREX therapy at standard dosages is associated with a low rate of adverse side effects. Thus, VALTREX treatment stands as a potential alternative for long-term therapy for HHV-6 associated diseases especially in combination with another antiviral drug such as beta interferon. Foscarnet FOSCAVIR Foscarnet is used to treat CMV retinitis. The literature concerning the sensitivity of HHV-6 replication to suppression by foscarnet is quite consistent in that all virus strains tested showed marked sensitivity to the drug. However, treatment with intravenous foscarnet carries with it a significant risk of toxicity, which most commonly manifests as renal dysfunction and electrolyte imbalances. Cidofovir VISTIDE or (S)-HPMPC Cidofovir is used to treat CMV retinitis is patients with AIDS. Intravenous administration of cidofovir can be associated with significant renal toxicity, although it appears to be less toxic than either foscarnet or ganciclovir. Cidofovir is available for use in off-label applications, such as the treatment of HHV-6 associated disease. Two cell culture based studies have reported that cidofovir can effectively suppress the replication of HHV-6, although this observation has not been confirmed by other investigators. Non-conventional Antiviral Agents Several preparations of various types have been assessed for their ability to suppress the replication of HHV-6 in cell culture. The potential for these agents to be used in the clinical setting remains unclear, and little or nothing is known concerning their pharmokinetics or the plasma levels they can achieve. One of these is Ampligen, approved for use in Canada and Belgium, but not in the U.S. The Ampligen web site states that results of trials in the U.S. and Belgium "suggest that Ampligen may be an effective treatment for a certain subset of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) patients, namely those with severe debilitation." The structure of this drug is similar to a known interferon inducer and this strongly suggests that any suppressive effect Ampligen may have on HHV-6 replication is mediated by interferon. Ampligen is a synthetic, mismatched, double-stranded RNA, and a single report of its ability to inhibit HHV-6 replication has been published. Recent reports from some patients are conflicting, and the value of Ampligen in the treatment of CFS remains to be determined. Recently, transfer factor has been mentioned as a means of combating viral infections, including HHV-6. Transfer factor is in the colostrum present in mother's milk the first few days after delivery of a newborn. It is known to stimulate the immune system's "memory" and therefore help the body's own defenses increase their ability to fight infection naturally. Because transfer factor is not species specific, it is now being made in cows and processed for human use. Additional information about transfer factor is readily available on the Internet. Its effectiveness against HHV-6 is currently being studied by other investigators. ViraCor . . 10437 Innovation Drive . . Suite 319 . . Milwaukee, Wisconsin . 53226 (800) 305-5198 . . (414) 453-7295 fax . . info@ViraCor.com ©2000 ViraCor. . All rights reserved . Acyclovir is used to treat herpes simplex (HSV), varicella zoster (VZV) infections. It is available in oral form. Available data indicate that HHV-6 is relatively insensitive to the inhibitory effects of acyclovir. The mean inhibitory concentration 50% (IC50) of acyclovir for HHV-6 strains is approximately 30 uM, a concentration well above the plasma levels achievable with either oral or intravenous therapy. Acyclovir VALTREX Valacyclovir or VALTREX is an orally delivered drug chiefly used to treat HSV and VZV. It is a prodrug of acyclovir, meaning that it is converted to active acyclovir within the body. This results in higher levels of drug in the blood stream and it is believed that this level of drug might be partially effective against HHV-6. Valacyclovir has been used to effectively decrease the incidence of HHV-6 associated disease in bone marrow transplant recipients. Thus it is effective against reactivation of HHV-6, but may not be effective in suppressing an active, chronic infection. Studies have also demonstrated that VALTREX therapy at standard dosages is associated with a low rate of adverse side effects. Thus, VALTREX treatment stands as a potential alternative for long-term therapy for HHV-6 associated diseases especially in combination with another antiviral drug such as beta interferon. Extensive research into the field of stealth viruses has been done and while once this was a very controversial issue with many doubting even the existence of these types of viruses, they have now been scientifically proven to exist. Culturing methods for these viruses has improved and hard sequence data is now available on them which show how these viruses have assembled themselves, the way that they've recombined with other genes, the cellular, viral, bacterial origins. And it is now known that the stealth virus can take varying structural forms but it has the basic capacity to imbed itself in the brain, persist in the brain causing brain dysfunction. Unfortunately, a very real result of all this research has shown that stealth viral infections can progress to very severe illness, including death. Just recently, Dr. Martin heard of a patient from Needles, CA who died from viral encephalitis in Los Angeles. He was also following the case of a child with a brain tumor and a man with Creutzfeld Jacob disease. He wanted to discuss these cases with the CDC and was referred to Dr. William Reeves who told him to submit abstracts to the forthcoming Emeging Disease Conference. This was done along with some abstracts by Dr. Donovan Anderson and Dr. George Lewis (a psychiatrist who has joined CCID.) All of the abstracts were rejected by Dr. Jaffe of CDC, even after Dr. Martin explained why they were being submitted. Dr. Martin went to the CCD meeting anyhow and even called Dr. Reeves who was unwilling to meet with him. So, the CDC is aware of Dr. Martin's findings, but for some reason they are not willing to publish them. Because of the importance of these papers they are now presented on the CCID website. CCID's focus is away from the clinical categorization of illnesses into such entities as CFS, FM, MCS, psychosis, etc. Patients are viewed as having multi-system illnesses due to persisting stealth viral infections. Treatments are directed towards suppressing the virus and correcting the metabolic derangements caused by these infections. Integration of laboratory and pharmacy provides a good foundation for appropriate, approved and scientifically valid clinical trials. NEW LINKS Dr. Chaney Web Site CFIDS ASSOCIATION Listening to CFIDS Great Smokies Lab Chronic Fatigue Syndrome Assessment CFS- CANADA Dr. Edward Conley - author of "America Exhausted" CFS/FMS Clinic in Michigan You can purchase Dr. Conley's book on his web site above or as follows: "AMERICA EXHAUSTED" by Dr. Edward Conley THE FIBROMYALGIA SYNDROME MONOGRAPH UPDATE SUPPLEMENT V1.40-2000 Chat room with Nicolas Regush Interview of Leonard G. Horowitz, D.M.D., M.A.., M.P.H. by Gary Null 1995 HIV Web Colostrum for HHV6 as new treatment You can read more on the Wisconsin Viral Research Group's research of HHV-6's involvement in CFS on their website at and here. HHV6 from Medscape Part I Herpesvirus-6: A New Disease Model A look at Viral Studies and their connection to CFS/FMS Additional resources on Primary Immune Deficiency Diseases Keep Hope Alive, Ltd., is an IRS-approved 501 (c) 3 non-profit organization "PRIMARY" VS. "SECONDARY" FIBROMYALGIA" "This is a very important distinction to make. "Primary" Fibromyalgia, which usually surfaces without any associated (comorbid) medical,neurological or major psychiatric disorders, appears to be caused and sustained by an imbalance of neuroreceptors (mainly noradrenaline & serotonin, & much less frequently, adrenaline & dopamine) within the Central Nervous System (CNS) and Autonomic Nervous System (ANS). It is frequently triggered by some event in a susceptible person's life, e.g.,post-trauma or post-motor vehicle accident (often quite minor), burn-out, nervous breakdown, loss of a loved one, loss of a job, marital problems, etc., with the syndrome escalating and becoming more organized and more severe with time, instead of the reverse. This dynamic imbalance of neuroreceptor response (hypo or hyper) also generates and sustains in acyclical fashion an infinite combination of abnormal symptom complexes(Refer to the Fibromyalgia Application Flowchart on pages 2 & 4 in The Fibromyalgia Syndrome Monograph, ISBN 1-896820-03-9). The person' sparticular cluster of symptom/sign complexes within the chronic pain-fatigue cycle, points to the neurotransmitter(s) that require supre gulating or down regulating. Correctly identifying and targeting even a single neurotransmitter will control several symptoms associated with this neurotransmitter...." "SECONDARY" VS. "PRIMARY" FIBROMYALGIA" "Secondary" Fibromyalgia is a chronic or recurrent form of Fibromyalgia/chronic fatigue syndrome associated as a comorbid condition with a number of medical, psychiatric and viral illnesses/disorders. Fibromyalgia & Chronic Fatigue Syndromes have been associated with Systemic Lupus, Scleroderma, Sjogren's Syndrome, Rheumatoid Arthritis, Psoriatic Arthritis, Osteoarthritis, Degenerative Disc Disease, Polymyalgia Rheumatica, Thyroid Disorders, Occult Malignancies, Muscular Dystrophies, Multiple Sclerosis, Post-Polio Syndrome, Hepatitis B & C, HIV Infection, Infectious Mononucleosis, Epstein-Barr Virus Infection, Lyme Disease, etc. Hence, it is very important to undertake a very thorough physical examination and comprehensive investigations before assuming that one is dealing solely with Fibromyalgia or Chronic Fatigue Syndrome. The initial basic lab work-up should include: CBC, ESR, Glucose, Creatinine, Alkaline Phosphatase, SGOT, SGPT, CPK, TSH, RIA T3, Free T4, Uric Acid, Ca & P, Latex Fixation, ANF, C3 Complement, Quantitative Immunoglobulins, Protein Electrophoresis, Heterophile Antibodies, Hepatitis B & C Antibody Screens, ELISA (Lyme Disease), ELISA (HIV) and VDRL......." 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