Viruses, Microplasma*** Please Help Me****

Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Oct 8, 2006.

  1. Lolalee

    Lolalee New Member

    Hi Everyone,

    There has been so much info here and elsewhere about viruses, etc. causing CFIDS symptoms. I have an appointment with an Infectious Diseases Specialist next week. I thought I'd try a different approach instead of going in saying I have Chronic Fatigue Immune Dysfunction and Fibromyalgia (which has never brought me good treatment in the past)....I am going to tell the Doctor about my symptoms. I am also bringing copies of old labwork that shows high EBV titers, and abnormal NKC and Tcell activity.

    I'd also like to take some research info. on different viruses. That's where I need your help. I don't have the energy to weed through the board and the web for the right info. I thought maybe those of you who know something about this or have had experience/success, maybe, treating viruses, microplasmas, etc. could give me some info for my doctor.

    Any and all help would be greatly appreciated.

    Thanks,

    Lolalee
    [This Message was Edited on 10/08/2006]
  2. KMD90603

    KMD90603 New Member

    I like your idea of going to the ID doc and kind of starting from scratch. The bad part about this disease is that many doctors still aren't up to date on them, and they still refuse to believe that these are physical illnesses. So, as soon as they hear CFIDS or fibro, they think "oh, she/he's just a complainer," and that's not fair.

    I'm actually thinking about "starting over." First of all, I feel like my primary doctor just brushes me off everytime I'm there. Back in march I was very sick with the flu. I had a fever of between 101 to 103 for 5 days straight, and not a darn thing was done about it. I was having heart palpitations and couldn't even stand. 2 appointments, 2 strep tests and 2 $15 copays later, my husband did for me than the doctor. And, they are refusing to test for some of these viruses that I think might be the culprit in my ME/CFIDS, so I feel like it's time to move on to another doctor.

    I like my ID doc, but again, he uses the wait and see approach. He sees this young 24-year old who is raising a family, working part-time, and going to school. He sees that I'm still functioning so he doesn't think we should do anything. Well, yeah I'm functioning, but for how long? The longer I go feeling like this, the sicker I get. And now, after over a year of being fibro-free, I'm having a bit of a flare up of that as well. So, it's a double whammy.

    Well, keep us updated on how your appointment with the infectious disease doctor goes.

    Gentle hugs,
    Kim
  3. cct

    cct Member

    You may want to check out the lab tests that are part of Dr. De Meirleir's protocol (see ImmuneSupport.com Library article "Dr. Kenny De Meirleir's Breakthrough Research and Recommendations for CFS Testing and Treatment" dated 8.18.2006)

    In this article, there is a reference to the labratory (Red Labs USA)that Dr. De Meirleir helped to establish in the United States which specializes in testing for CFS.
  4. ulala

    ulala New Member

    Finally: The cause of CFS and Treatment.

    Very interesting thread.

    Good luck!
    [This Message was Edited on 10/08/2006]
  5. Lolalee

    Lolalee New Member

  6. deliarose

    deliarose New Member

    lisa petrison's post on immune panel tests. Also, maybe print off the London Daily Mail article on the Stanford professor's research on Valcyte.

    Just search under Jose Montoya, Stanford, Valcyte, HHV6 either here or on the web.

    U cld also check out Dr Joe Brewer's research which is posted on his webiste....Plaza medical cetner, KC, MO.

    I am on his TF.. and doing better...Early days tho, just a month. (and u don't even need an RX....Company that makes it is called Immunity Today).

    If you're interested see my other posts.
    Good luck
    Delia
  7. Lolalee

    Lolalee New Member

    Delia, Carla, Ulala,cct, Kim.... thank you all for the info provided. I will look up all the info you have referred me to. This is a new experience for me. I've been accustomed to stating my FMS and CFIDS diagnosis whenever I see a new doctor. I am essentially starting all over again by trying to work with a new doc to figure out what is causing my symptoms.

    You've all given me good advice and I appreciate it. Carla, you said "I would leave all references to CFS/FM out (because this is the angle ur taking), but you could hint at it and say "Doc so-and-so thought it might be cfs/fm". That's exactly what I was planning to do so it helps to have you encourage this approach.

    All additional suggestions are welcome.

    Lolalee
  8. PGWS

    PGWS New Member

    Dr. Montoya Information

    A Herpes Drug May Make Energy Soar for Chronic Fatigue Syndrome Patients
    by Editor
    ImmuneSupport.com

    05-25-2006

    A drug normally used to treat herpes infections has produced a dramatic improvement in patients suffering from Chronic Fatigue Syndrome (CFS). Patients that had formerly been house-bound report being restored to normal life activities. CFS affects about 1 million patients in the United States, and about 240,000 in Britain. There is no cure for CFS, only ways to manage the condition.
    The London Daily Mail newspaper reported the study results, which were delivered at a scientific conference earlier this month by Professor Jose Montoya, M.D., an infectious disease researcher and Associate Professor at Stanford University. The study took place in California, and involved 12 CFS patients who were given the drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the 12 patients reported a great improvement in their condition. The professor’s findings were reported at a conference on the HHV-6 virus held in Barcelona earlier this month.

    Donna Flowers, a onetime champion figure skater now aged 50 and working as a physiotherapist, was quoted in the Daily Mail as saying “Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter. I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year-old twins.” Now she is now back to coaching young Olympic hopefuls, has fired the nanny, and has started taking ballet lessons.

    Participants Report “Soaring energy levels”

    “When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,” Professor Montoya was quoted as saying. “Today, she is functioning at 90 per cent.” A patient who could hardly walk all the way around the block is now bicycling for up to three hours each day. Another patient who could not even leave the bed now comes to breakfast every day at 7:00 AM.

    CFS patients often have signs of pre-existing viral infections, and viral infections have even been thought to be “triggering events” for the onset of CFS in some patients. This is the first clinical study to indicate that treating one of the viral infections would also be effective in the underlying CFS symptoms.

    “I was amazed by the results,” Professor Montoya was quoted as saying at the infectious diseases clinic he heads at Stanford University. “Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system. I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load. I'd hoped it might help a bit, but I didn't expect the results to be anything so dramatic. It was pure serendipity.”

    Careful Patient monitoring is needed

    Valganciclovir is a prescription drug approved for treating HHV-6 infections of the eye, which can occur in individuals with severely weakened immune systems, such as transplant or cancer patients. The HHV-6 virus is not the same as the herpes simplex virus that causes cold sores. Most commonly, it is associated with a condition called roseola infantum, a fever and a rash in children.

    “I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it,” stated Professor Montoya in The Daily Mail. “It can have serious side-effects including anemia, so you have to monitor patients very carefully. But so far none of the CFS/ ME patients have reacted badly to it.” These preliminary results will have to be studied in many more patients before the drug valganciclovir can be used as a standard treatment.

    Charles Shepherd, a medical advisor to the charity Action For ME (CFS is known as ME in England) told The Daily Mail that CFS/ME has long been associated with prior viral infections. “About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled.”

    Professor Montoya commented on the possibility that the results were just due to a placebo effect. He told the newspaper “that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement. That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference.”

    The possibility that a drug has been found that could eventually provide an effective treatment for some patients with CFS is just one part of the puzzle being studied by researchers. Genetic research is also providing clues that may lead to new treatments and therapies.

    Traditionally, it has been assumed that CFS had no known cause, no direct diagnosis, and no known cure. Some practitioners considered CFS symptoms to be “all in the head,” and recommended psychotherapy as the primary treatment.

    Now research is showing that these patients have “a disturbance in their body's natural way of dealing with infection,” Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland told The Daily Mail. “Anti-viral drugs such as valganciclovir may be allowing it to re-set itself.”

    Dr Jonathan Kerr of St George's Medical School in London, a published researcher on the interplay between gene activity and CFS/ME, told a recent symposium that “We've found that the genes in patients' white blood cells — a key part of the immune system — are switched on and off in an abnormal fashion.” A controlled research study on interferon beta, a relatively old drug, is in the planning stages to see if it can help restore the genetic balance. It is hoped that studies involving the interplay of viral infections, genetic action and immune system functioning will provide new options for the treatment of CFS patients and the management of CFS symptoms.

    lChronic Co-infection of Human Herpes Virus 6 and Epstein Barr Virus

    in Patients with Long Standing Fatigue

    Epstein-Barr virus (EBV) and human herpes virus type 6 (HHV-6) are enveloped double-stranded

    DNA viruses belonging to the herpesviridae family. Common for both viruses are their

    lymphotrophism, capability to produce latent infections and deregulate the immune system.

    Furthermore, in vitro studies of co-infection with both viruses have revealed that a significant interplay

    occurs between them. The clinical consequence of this interaction remains unknown. However, it has

    been contemplated whether dual infection of EBV and HHV-6 could contribute to the pathogenesis of

    a subset of patients with Chronic Fatigue Syndrome (CFS) harbouring these herpes viruses.

    The frequency of antibodies in the blood serum for EBV and HHV-6 in the adult population is 90%

    for EBV and over 95% for HHV-6. Most people develop antibodies as a result of infection in early

    childhood, with no clinical symptoms. The high frequency of individuals in the population with

    antibodies to these viruses complicates the interpretation of serological tests value in diagnosing

    reactivation of either virus and emphasizes the importance of using a high cut-off in trying to make a

    determination of whether the virus is active. PCR DNA tests in the serum are not sensitive enough to

    detect infection since there is very little virus in the serum, so a negative result is not meaningful. PCR

    DNA tests done on whole blood or cells are also meaningless since they detect latent virus. Chronic

    fatigue syndrome (CFS) is a clinically defined condition characterized by severe disabling fatigue for

    duration of over six months and a combination of symptoms that prominently features self-reported

    impairment of concentration and short-term memory, sleep disturbances, and musculoskeletal pain. No

    signs that indicate disease with certainty or diagnostic tests for this condition have been validated in

    scientific studies; in addition, no definitive treatments are clinically available. Suggested origins of

    CFS include, but are not limited to: viral or bacterial infections, endocrine-metabolic dysfunction,

    immunological imbalance, neurally-mediated hypotension and depression. EBV and HHV-6 are

    among the viruses frequently associated with CFS.

    the 5th International Conference on HHV-6 & 7 held in Barcelona, Spain in 2006, we reported the

    successful response to antiviral treatment experienced by nine out of 12 (75%) patients chronically

    infected with human herpes virus 6 (HHV-6) and Epstein-Barr virus (EBV) and who were suffering

    from debilitating fatigue for more than one year (median 3 years, range 1 to 8 years). We suspected

    that these patients’ long-standing symptoms were the result of the interplay between the two viruses

    and their hosts’ immune responses. Ganciclovir has been reported to have a significant antiviral effect

    in-vitro and in vivo against HHV-6 and EBV and a new oral formulation (valganciclovir) achieves

    serum levels similar to those reached with the intravenous form. After 6 months of valganciclovir

    treatment each of the nine patients spontaneously reported significant improvement in their baseline

    symptoms after an initial period of “worsening” which occurred between week 2 and 4. Their energy

    level for daily activities gradually increased from a baseline of 5-25% to a 70-90% level that has been

    sustained once valganciclovir was discontinued at month 6. Of the 9 patients who had a significant

    improvement in their baseline symptoms, 7 (77.8%) had an at least 50% drop in their EBV IgG viral

    capsid antibody (VCA), 6 (66.7%) had an at least 50% decline in their EBV-early EBV nuclear IgA

    l

    antibodies (EBNA), 4 (44.5%) an at least 75% fall in their early antigens (restricted and diffuse) early

    antibodies. These preliminary clinical and laboratory observations merit the additional pilot study we

    are planning to better substantiate the apparent initial benefit reported by these patients following the

    use of valganciclovir and to establish whether this clinical response is mediated by an antiviral effect

    of the drug, an indirect effect in the immune system or a placebo effect. We intend to use more

    improved molecular and immunologic assays to measure the HHV-6 infection during and after the

    valganciclovir treatment.

    Dr.Dwww.hhv6-foundation

    www.cdc.gov/ncidod/diseases/cfs

    www.cfids.org

    http://www.nlm.nih.gov/medlineplus/ency/article/001244.htm

    http://www.rocheusa.com/products/valcyte/

    __________________________________________________________________________________________________________________________________________________________

    Dr. Johnson Information

    Indiana Doctor Gives Hope to Fibromyalgia Sufferers 07/26/06 12:30 PM


    Indiana Doctor Gives Hope to Fibromyalgia Sufferers
    ImmuneSupport.com

    09-27-2004

    Local Doctor Gives Hope To Fibromyalgia Sufferers
    Reporter: Shannon Samson
    New Media Producer: Kerry Corum

    An Evansville, Indiana physician is going to the American Academy of Pain Management conference in San Antonio Wednesday, to present what could be a breakthrough finding. He suspects the chronic pain of diseases like fibromyalgia could be caused by a series of viruses.

    Anita Held, 64-years-old, needs a basket to hold all the pills she needs to get her through the day. Fibromyalgia leaves her sore all over and constantly tired. She says, "Breathing is an effort, just moving the least little bit is just an effort. So some days I actually will sleep all day long."

    Pain specialist Dr. David Johnson realized the fatigue, aches and chills many of his patients describe are the same symptoms that come with a case of the flu. So he had an idea: What if he tested them for some common viruses? "I went through and listed about three or four viruses, and didn't even know if the labs could test for them, and my gosh, they came back positive."

    He eventually came up with list of 17 viruses and found that his fibromyalgia patients were all testing positive for anywhere from three to nine viruses each. Dr. Johnson believes their immune systems aren't recognizing the viruses as pathogens and as they steal cell material to replicate, the patient is left with a host of ailments. He's prescribing anti-viral medications to try to suppress the viruses, which can take years.

    In the meantime, Johnson says, "I want to get the word out to physicians to test for the virus, use the anti-viral medication and let's all have some input and see if we can eradicate this condition."

    That would be a dream come true for Anita Held, who just found out she has three viruses. "I am glad they found something, because now we have something to work with, is the way I look at it. That's not bad news."

    She says it's good news to think maybe someday she could spend more time with her grandchildren without getting too tired.

    So far, 26 of Dr. Johnson's patients have tested positive for up to nine viruses. He says six are responding well to anti-viral medication.

    Besides fibromyalgia, the treatment is also helping sufferers of chronic fatigue and irritable bowel syndromes.

    Dr. Johnson outlined a list of the viruses he's testing for in fibromyalgia cases:

    *Epstein Barr virus EBV
    *Cytomegalovirus CMV
    *Herpes virus: 8 types
    *Parvovirus B 19
    Norwalk agent
    *Rotavirus
    *Enteric Coronavirus
    *Enterovirus
    Astrovirus
    Calcivirus
    *Varicella - Zoster virus VZV
    Torovirus
    *Adenovirus
    Picovirus
    Pogosta virus
    Sindbis virus
    *Coxsackie A and B virus

    *The most frequently involved virses. Most patients will have from three to nine of these viruses at abnormal levels.

    For more information on Dr. Johnson's research, contact his office in Indiana at 812-425-2662.

    Source: All content © Copyright 2000 - 2004 WorldNow and WFIE. All Rights Reserved. The original article is posted at: http://www.14wfie.com/Global/story.asp?S=2271049&nav=3w6rQvkD


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    Dr. Lerner Information

    THEORY EMERGES ON FATIGUE AILMENT 07/26/06 12:28 PM

    THEORY EMERGES ON FATIGUE AILMENT
    Scott Hensley
    Wall Street Journal, Technology & Health, 9/19/00

    Toronto - Viruses that insidiously damage heart muscle may be the cause of chronic fatigue syndrome, a mysterious malady that many physicians have written off as a psychological condition, according to a provocative new study by an infectious disease expert.

    At a major scientific conference here, Martin Lerner, a doctor at William Beaumont hospital in Royal Oak, Mich., presented data on a series of patients, including himself, who developed the debilitating condition and were later treated, with apparent success, with potent antiviral drug regimens.

    "It is an infectious disease," that primarily attacks the heart, Dr. Lerner declared at a meeting of the American Society of Microbiology. Dr. Lerner said daylong cardiac monitoring found that 95% of chronic-fatigue patients he and his research team tested in two separate small studies had abnormal electrocardiograms indicative of heart damage.

    Dr. Lerner said he suspects the heart damage is caused by Epstein-Barr virus and cytomegalovirus, both long implication in the condition. The damage to the heart occurred, he believes, when the viruses were held in partial check by the patient's immune systems. Though the immune systems appear to have kept the viruses from reproducing, Dr. Lerner said partial bits of the viruses that were being produced appear to be causing heart damage.

    Raymond Swarts, an infectious-disease specialist unconnected to Dr. Lerner's group, called the findings "fantastic and very compelling." Dr. Swarts, who practices medicine in Reno, Nev., cautions that more studies are necessary.

    A test for the hard-to-diagnose syndrome would represent a significant clinical advance. Chronic-fatigue syndrome now is diagnosed by a rough checklist of symptoms and a process of elimination. The key clinical finding is that patients have persistent or relapsing fatigue for six months or more.

    In fact, doctors have argued whether the syndrome is a disease at all and even if it is, exactly how prevalent it might be. By some estimates, the syndrome affects about six in every 100,000 people.

    After implicating viruses as the cause of the syndrome, Dr. Lerner tested possible treatments. Many of the patients, including Dr. Lerner who were infected by Epstein-Barr virus regained cardiac function and returned to normal life after taking high doses of valacyclovir (brand name Valtrex), an antiviral drug made by Glaxo Wellcome PLC, for several months. Patients with cytomegalovirus received ganciclovir (Cytovene), another antiviral drug made by Roche Holding AG.

    Dr. Lerner became interested in chronic-fatigue syndrome when he fell ill in 1988 at age 58. He thought at first that he had heart disease, and an examination by doctors confirmed that his heart was weak. Later, he suspected there was more to the picture. In 1996, he began antiviral drug therapy and his heart function returned to normal. The smoking gun in Dr. Lerner's investigation came from patient samples of heart tissue. The viruses had weakened their hearts by scrambling the normally well-ordered muscle fibers. Glaxo Wellcome is funding a trial of antiviral treatments for chronic fatigue syndrome, that just got under way, said Robert Deeter, an antiviral clinical specialist with the drug company. Dr. Lerner holds patents to diagnose chronic-fatigue syndrome with cardiac monitors and to treat the condition with antiviral agents. He has another patent pending for the use of immunological agents to diagnose the condition.




    --------------------------------------------------------------------------------



    Lay Summaries of Published Peer-Reviewed Studies

    Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993;104:1417-1421.
    Here, we showed that 24 CFS patients have abnormal cardiac electrical conduction by 24-Hr. ECG testing (Holter monitoring) compared to 106 non-fatigued control patients (p<0.03). In 8 of the 24 CFS patients, gross abnormal cardiac wall motion at exercise MUGA testing was seen. Coronary artery disease was excluded by myocardial perfusion imaging in all CFS patients.

    This was our first publication in continuing studies of the chronic fatigue syndrome. Here, for the first time, cardiac abnormalities in CFS illness were recognized.

    Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM. Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677.
    Here, 11 CFS patients were studied in detail by cardiac nuclear medicine MUGA test which measures muscle strength of the heart. Abnormal cardiac wall motion at rest and stress, dilatation of the left ventricle and segmental wall motion abnormalities were again observed.

    Lerner AM, Goldstein J, Chang CH et al. Cardiac involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, Michigan, 1991-1993. Infectious Diseases in Clinical Practice 1997;6:327-33.
    Here, the prevalence of abnormal Holter monitoring in 67 CFS patients and 78 non-CFS patients matched for age, place and time and absence of other confouding medical diseases were compared. Holter monitors in both CFS and control groups were read by two non-involved cardiologists without clinical knowledge about the patient or place in the study. Dr. Lerner was not a reader of Holter monitors in this study. The prevalence of T-wave abnormalities by Holter monitoring was greater in CFS than in non-CFS patients (p<0.01). The presence of abnormal T-waves at Holter monitoring was "a sensitive indicator of the presence of CFS." The "absence" of these abnormal T-waves made the diagnosis of CFS unlikely (statistical sensitivity 0.96). Light and electron micrographic studies of right ventricular endomyocardial biopsies in these CFS patients showed cardiomyopathic changes. We do not recommend further right ventricular cardiac biopsies in CFS patients since the hearts of CFS patients may be friable and may have an increased likelihood of post-biopsy bleeding.

    Summary of Publications 1-3 (Cardiac Involvement in CFS)
    This work shows that rapid heart rates at rest, and in some cases, abnormal cardiac wall motion contribute to the light-headedness that many CFS patients experience. Uniformly, abnormal Holter monitoring is present in CFS patients. This additional criterion for diagnosis of CFS illness, namely abnormal Holter monitoring, to the CDC criteria for the diagnosis of CFS does not exclude any CFS patients included in the original CDC definition. The absence of abnormal Holter ECG testing excludes fatigued patients who do not have CFS.

    Lerner AM, Zervos M, Dworkin HJ, Chang, CH and O'Neill W. A unified theory of the cause of chronic fatigue syndrome. Infectious Diseases in Clinical Practice 1997;6:230-243.
    Here, we hypothesize that CFS is a prolonged infectious mononucleosis syndrome in previously healthy (immunocompetent) persons. We further speculate in this early study that prime candidates for cause of CFS are two herpesviruses which cause infectious mononucleosis, Epstein-Barr virus (EBV) and cytomegalovirus (HCMV). We further suggest that studies seeking a single virus cause of CFS, even those studies searching for single-virus EBV or single virus HCMV would conclude in a result of "no cause". Indeed, such negative studies have been done. We suggest that (1997) there may be three causes of CFS, 1) single virus, EBV CFS; 2) single virus HCMV CFS; and 3) EBV-HCMV co-infection CFS. We outline research studies to prove or disprove this new paradigm.

    Lerner AM. Editorial response: microbial persistence and idiopathic dilated cardiomyopathy. Clinical Infectious Diseases. 1999;29:526-7.
    Here, Dr. Lerner discusses the possible relationship between long-standing cardiomyopathy, heart muscle disease not associated with coronary artery disease, and CFS.

    Lerner AM, Zervos M and Dworkin HJ et al. New cardiomyopathy: A pilot study of intravenous ganciclovir in a subset of the chronic fatigue syndrome. Infectious Diseases In Clinical Practice 1997;6:110-117.
    Here, we emphasize the need of subset classification in the diagnosis and treatment of CFS illness. CFS patients in this study had significant IgG serum antibody titers to cytomegalovirus, but little to no evidence of EBV infection by blood tests. In this study 13 of 18 CFS patients were remarkably improved after 30 days of intravenous ganciclovir (p<0.05). Single virus HCMV CFS in this pilot study was improved by antiviral treatment. There were no side effects from this carefully monitored trial.

    Lerner AM, Beqaj SH, and Deeter RG et al. A six-month trial of valacyclovir in the Epstein-Barr virus subset of chronic fatigue syndrome: improvement in left ventricular function. Drugs of Today. 2002;38:549-561.
    Twenty-five patients with CFS illness were treated orally for 6 months with pharmacokinetic doses of valacyclovir (valtrex) in a formulation to give continuous anti-EBV effective blood levels throughout the day. This is the first time such valacyclovir dosing was given. The trial was approved by the U.S. Food and Drug Administration. Patients were carefully monitored for safety by repeated appropriate blood tests. There were no adverse side effects. Sixteen patients with single virus EBV infection were benefitted, but 9 clinically similar CFS patients with EBV-HCMV co-infection were not benefitted. Valacyclovir (valtrex) in the laboratory is effective versus EBV, but it is NOT effective (active) versus HCMV. Therefore, the results strengthen the need for subset classification and appropriate subset-directed antiviral treatment for CFS illness. This, to our knowledge, is the first successful report of valacyclovir treatment for EBV infection.

    Lerner AM, Zervos M and Chang CH et al. A small, randomized, placebo-controlled trial of the use of antiviral therapy for patients with chronic fatigue syndrome. Clinical Infectious Diseases. 2001;32:1657-58.
    Eleven CFS patients with EBV-HCMV co-infections were appropriately treated according to their prior subset classification over an 18-month period with antiviral drug treatments. All patients were carefully monitored for safety every 4-6 weeks. Valacyclovir for EBV infection and ganciclovir for HCMV infection were used. There were no significant side effects in CFS patients. All 11 CFS patients in this study were significantly improved.

    Summation of Publications 4, 6-8 (Treatment of CFS Illness with Anti-viral Drugs According to Subset Classification)

    In these studies, 40 CFS patients were safely treated with antiviral drugs. They were remarkably improved.

    Lerner AM, Beqaj SH, Deeter RG and Fitzgerald JT. IgM serum antibodies to human cytomegalovirus nonstructural gene products p52 and CM2 (UL44 and UL57) are uniquely present in a subset of patients with chronic fatigue syndrome. In Vivo. 2002;16:153-160.
    This is an especially enlightening study. In many CFS patients in whom our work implies an A) EBV; B) HCMV; or C) EBV-HCMV (co-infection) cause for CFS illness, normal means for diagnosis by blood tests or virus isolation (including those using polymerase chain reactions) are negative, both in our work, reviewed here, and in the careful work of others. In this study, we show a definitive new means of HCMV multiplication in this HCMV subset of CFS patients. The p52 and CM2 HCMV IgM antibodies were present in 16 CFS patients, but were not present in 77 various control patients. In these CFS patients, portions of the HCMV genetic material are synthesized, but remain unassembled into complete virus. These data provide strong evidence for a virus etiology for CFS illness and provide a strong rational for antiviral treatment of CFS patients.

    Lerner AM, Deeter RG, O’Neill W, Dworkin HJ, Zervos M, Beqaj SH, Chang CH, and Fitzgerald JT. "Cardiac and virologic issues" pp 304-330 from Handbook of Chronic Fatigue Syndrome. Jason LA, Fennell PA, and Taylor RR. John Wiley & Sons, Inc. 2003.
    We present the evolution of data describing studies over greater than a decade which support the paradigm that CFS is a prolonged infectious mononucleosis due to Epstein-Barr virus, cytomegalovirus or the two viruses in co-infection undergoing incomplete virus multiplication. The paradigm suggests that the immunocompetent (otherwise healthy) CFS patients' immune defenses do not allow complete virus formation, but only parts of the virus(es) genetic material is expressed. Cardiac involvement of this newly hypothesized method of virus infection leads to rapid heart pumping at rest (tachycardia) and eventually cardiac muscle pump weakening. Specific antiviral treatment has led to remarkable sustained improvement in patient well being so that criteria for the diagnosis of CFS are no longer present. Medical testing by Holter monitoring, MUGA, nuclear stress testing, cardiac biopsy, virus serologic tests and disappearance of symptoms of CFS support this theory.

    Lerner AM, Beqaj S, Deeter RG, and Fitzgerald JT. IgM serum antibodies to Epstein-Barr Virus are uniquely present in a subset of patients with the chronic fatigue syndrome. In Vivo. 2004;18:101-106.
    A first unique subset of patients with chronic fatigue syndrome (CFS) and specific diagnostic serum antibodies to cytomegalovirus (HCMV) non-structural gene products p 52 and CM2 (UL 44 and UL 57) indicates incomplete HCMV persistent multiplication in these specific patients with CFS. The results suggest that specific antiviral (HCMV) treatment in these patients may be beneficial. A second Epstein-Barr Virus (EBV) distinct subset of CFS is now defined. Fifty-eight CFS patients and 68 non-CFS matched controls were studied. Serum antibodies to EBV viral capsid antigen (VCA) IgM and EBV Early Antigen, diffuse (EA, D) as well as HCMV (V), IgM and IgG; VP (sucrose density purified V); p 52 and CM2, IgM serum antibodies were assayed. Serum EBV VCA IgM positive antibody titers were identified in 33 CFS patients (Group A subset EBV VCA IgM 62.3 ± 8.3, neg < 20), but were not present in other CFS patients (Group B subset EBV VCA IgM 6.8 ± 0.7) or controls (p < 0.0001). EBV VCA IgM titers remained positive in CFS patients from Group A for 24-42 months. Anti-viral medicines effective in HCMV and EBV infections are different, and preliminary studies suggest that this patient-specific pharmacokinetically directed antiviral therapy should be continued for 6-12 months. Trials of antiviral therapy must be individually monitored by complete blood counts, creatinine and tests of liver function (AST, ALT) every 4-6 weeks for safety. (reference publication #7)

    Lerner AM, Dworkin HJ, Sayyed T, Chang CH, Fitzgerald JT, Beqaj S, Deeter RG, Goldstein J, Gottipolu P and O'Neill W. Prevalence of abnormal cardiac wall motion in the cardiomyopathy associated with incomplete multiplication of Epstein-Barr Virus and/or cytomegalovirus in patients with chronic fatigue syndrome. In Vivo. 2004;18:417-424.
    Here, we report a prospective consecutive case control study from 1987-1999 of cardiac dynamics as measured by radionuclide, ventriculography in 98 CFS patients. Controls were 191 patients with various malignancies who were evaluated in protocols requiring radionuclide ventriculography before initiation of cardiotoxic chemotherapeutic agents. The prevalence of abnormal cardiac wall motion (ACWM) at rest in CFS patients was 10 of 87 patients (11.5%). With stress exercise, 21 CFS patients (24.1%) demonstrated ACWM. Cardiac biopsies in 3 CFS patients with ACWM showed a cardiomyopathy. Among the controls, ACWM at rest was present in 4 of 191 patients (2%) (p=0.0018). A progressive cardiomyopathy often associated with EBV and/or HCMV incomplete virus multiplication is present in CFS patients.








    Dr. Teitlebaum

    Valcyte 900 mg (two tablets of 450 mg each) twice a day for 21 days with food followed by two tablets once daily with food long-term for maintenance. It can be effective against cytomegalovirus (CMV) and possibly HHV-6 but is potentially quite toxic and expensive. Check a CBC and platelet count blood test weekly on the medication.

    Tamiflu 75 mg 1-2 x day. Effects are seen within three weeks if it is going to help

    Antiviral Agents - (See the article "Treating Respiratory Infections Without Antibiotics" in my book, Volume 2, Issue 2 of my newsletter or on our web site at www.endfatigue.com. For HHV-6, CMV & EBV Infections, see Vol. 4, Issue 1 of our newsletter.