Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Dear Bob Well, it all depends on what - *it* - is? But even if you had AIDS, or were HIV positive, the type of casual contact you are describing with family would not be a problem. Eating together, hugging, shaking hands - none of these things should be a problem However, your brother may share a genetic susceptability and could get sick coincidentaly. Kendra On 7/13/06, bob niederman <bobn1955@...> wrote: > I know there have been clusters of rapid-onset. > > But is this contagious once it's settled in? > > For example I've got a brother, with a pregnant wife and 3 yo. son. I used > to visit them fairly often, when I thought I was just old,fat and lazy. Now > that I'm thinking CFS and hearing about various theories of > viral/mycoplasm/bacterial/parasite involvement, I have stopped visiting > them, even when I have the energy, due to fear of passing this on. (They > live 10 miutes away and are used to me napping so it's not a big deal.) > > Am I over-reacting? > > - Bob Niederman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 I don't think it is.if it is CFS. Noone around me got sick since 18 years.If it is Lyme or other infectious diseases I don't know about that. Best w. Nil Is This CONTAGIOUS? >I know there have been clusters of rapid-onset. > > But is this contagious once it's settled in? > > For example I've got a brother, with a pregnant wife and 3 yo. son. I > used > to visit them fairly often, when I thought I was just old,fat and lazy. > Now > that I'm thinking CFS and hearing about various theories of > viral/mycoplasm/bacterial/parasite involvement, I have stopped visiting > them, even when I have the energy, due to fear of passing this on. (They > live 10 miutes away and are used to me napping so it's not a big deal.) > > Am I over-reacting? > > - Bob Niederman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 I don't think it's contagious either -- millions more would be sick. What may be contagious (like Nil suggested) are factors or pieces of the puzzle like parasite infections -- easily spread between couples -- candida infections, fungal infections, etc.. d > > I don't think it is.if it is CFS. Noone around me got sick since 18 years.If > it is Lyme or other infectious diseases I don't know about that. > Best w. > Nil > Is This CONTAGIOUS? > > > >I know there have been clusters of rapid-onset. > > > > But is this contagious once it's settled in? > > > > For example I've got a brother, with a pregnant wife and 3 yo. son. I > > used > > to visit them fairly often, when I thought I was just old,fat and lazy. > > Now > > that I'm thinking CFS and hearing about various theories of > > viral/mycoplasm/bacterial/parasite involvement, I have stopped visiting > > them, even when I have the energy, due to fear of passing this on. (They > > live 10 miutes away and are used to me napping so it's not a big deal.) > > > > Am I over-reacting? > > > > - Bob Niederman > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi Bob. This is a good question. All I can tell you is what Dr. Cheney has said about this issue and my personal experience. Cheney said that after the initial onset, you should not avoid people, just be careful. Don't let anyone eat after you, do not kiss anyone on the lips, etc. Just to be careful. I think you are concerned that you could transmit whatever it is we have by coughing, and I don't think so. Personally I came down w/ 'CFS' about 14 months before my daughter was born. She is 12 now, very healthy, and I have seen her in the past sneak food off of my plate or drink out of my water bottle. Same thing for my wife. So, for the past 13 years, my wife hasn't gotten it (and it has been a 'normal' marriage, if you get my meaning) and my kid is healthy as a small horse. Just to be on the safe side, I would suggest the ideas in the first paragraph. Finally, obviously, if you have a bad relapse w/ fever, I would be more careful then. The author of Osler's Web referred to CFS as a contagious brain disease, and I think that got a lot of people worried. I could be wrong, but I think the viral or bacterial (or mold, ) cause does the damage initially, and then sticks itself away in the tissues so that it keeps the host sick, but is hard to pass on by casual contact. Mike C > > I know there have been clusters of rapid-onset. > > But is this contagious once it's settled in? > > For example I've got a brother, with a pregnant wife and 3 yo. son. I used > to visit them fairly often, when I thought I was just old,fat and lazy. Now > that I'm thinking CFS and hearing about various theories of > viral/mycoplasm/bacterial/parasite involvement, I have stopped visiting > them, even when I have the energy, due to fear of passing this on. (They > live 10 miutes away and are used to me napping so it's not a big deal.) > > Am I over-reacting? > > - Bob Niederman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Mike, I hope your family stays well. When I first became seriously ill in 1995 I thought my entire family was extremely healthy, especially my 20 something sons. Since then we have discovered that three of us have Lyme disease with varying levels of illness. My older son, healthy as a horse, came down with severe symptoms of brain infection at age 30. Thank God, with treatment he is holding his own now 3 years later. I remember hearing from several families where the kids gradually got symptoms, in particular fms symptoms. If you read the epidemiology studies cfs is more common in families, including family members who are not blood relatives. We still have no clue how many of us with a cfs label are carrying infections because almost no one is testing, and the tests are not accurate. a Carnes Hi Bob. This is a good question. All I can tell you is what Dr. Cheney has said about this issue and my personal experience. Cheney said that after the initial onset, you should not avoid people, just be careful. Don't let anyone eat after you, do not kiss anyone on the lips, etc. Just to be careful. I think you are concerned that you could transmit whatever it is we have by coughing, and I don't think so. Personally I came down w/ 'CFS' about 14 months before my daughter was born. She is 12 now, very healthy, and I have seen her in the past sneak food off of my plate or drink out of my water bottle. Same thing for my wife. So, for the past 13 years, my wife hasn't gotten it (and it has been a 'normal' marriage, if you get my meaning) and my kid is healthy as a small horse. Just to be on the safe side, I would suggest the ideas in the first paragraph. Finally, obviously, if you have a bad relapse w/ fever, I would be more careful then. The author of Osler's Web referred to CFS as a contagious brain disease, and I think that got a lot of people worried. I could be wrong, but I think the viral or bacterial (or mold, ) cause does the damage initially, and then sticks itself away in the tissues so that it keeps the host sick, but is hard to pass on by casual contact. Mike C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Bob, My family was fine. Of course, my theory is that it is not the infections that initially cause this, but rather something that weakens the immune system so that the infections can take hold. However, if everyone is being exposed to the same environmental factors, and they have other things like chemical and metal exposures and a genetic predispositon, then... > > I know there have been clusters of rapid-onset. > > But is this contagious once it's settled in? > > For example I've got a brother, with a pregnant wife and 3 yo. son. I used > to visit them fairly often, when I thought I was just old,fat and lazy. Now > that I'm thinking CFS and hearing about various theories of > viral/mycoplasm/bacterial/parasite involvement, I have stopped visiting > them, even when I have the energy, due to fear of passing this on. (They > live 10 miutes away and are used to me napping so it's not a big deal.) > > Am I over-reacting? > > - Bob Niederman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 a Hi But You are saying that you have Lyme. Are we sure that Lyme is same as CFS? I am seriously asking that and wish to know the answer. bw Nil Re: Is This CONTAGIOUS? > Mike, > > I hope your family stays well. When I first became seriously ill in 1995 I > thought my entire family was extremely healthy, especially my 20 something > sons. Since then we have discovered that three of us have Lyme disease > with > varying levels of illness. My older son, healthy as a horse, came down > with > severe symptoms of brain infection at age 30. Thank God, with treatment he > is holding his own now 3 years later. > > > > I remember hearing from several families where the kids gradually got > symptoms, in particular fms symptoms. If you read the epidemiology studies > cfs is more common in families, including family members who are not blood > relatives. > > > > We still have no clue how many of us with a cfs label are carrying > infections because almost no one is testing, and the tests are not > accurate. > > > > a Carnes > > > > Hi Bob. This is a good question. All I can tell you is what Dr. > Cheney has said about this issue and my personal experience. > Cheney said that after the initial onset, you should not avoid > people, just be careful. Don't let anyone eat after you, do not > kiss anyone on the lips, etc. Just to be careful. I think you are > concerned that you could transmit whatever it is we have by > coughing, and I don't think so. > > Personally I came down w/ 'CFS' about 14 months before my daughter > was born. She is 12 now, very healthy, and I have seen her in the > past sneak food off of my plate or drink out of my water bottle. > Same thing for my wife. So, for the past 13 years, my wife hasn't > gotten it (and it has been a 'normal' marriage, if you get my > meaning) and my kid is healthy as a small horse. Just to be on the > safe side, I would suggest the ideas in the first paragraph. > Finally, obviously, if you have a bad relapse w/ fever, I would be > more careful then. > > The author of Osler's Web referred to CFS as a contagious brain > disease, and I think that got a lot of people worried. I could be > wrong, but I think the viral or bacterial (or mold, ) cause > does the damage initially, and then sticks itself away in the > tissues so that it keeps the host sick, but is hard to pass on > by casual contact. > > Mike C > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 This has been an ongoing question for me as well. In fact, I just posted it on a Lyme board. I have had CFS for 14 years so I am very familiar with the symptomology. I also tested positive for Lyme a year ago, but was probably infected 30 years ago. However, I still have difficulty accepting that Lyme and CFS are the same animal. Exercise intolerance, for instance, is a major identifying symptom for CFS yet I never hear this being discussed on any Lyme boards. Fatigue is discussed, weakness is discussed, but not the phenomena of exercise leading to " flares, " which I would think anyone with CFS can easily relate to. Someone mentioned (either here or on another board) that those who are infected on the West Coast with Lyme tend to get CFS type symptoms and those infected on the East Coast get more arthritic type symptoms. This is very interesting to me and may be the reason for the differing symptomology. Ballady > > a Hi > > But You are saying that you have Lyme. Are we sure that Lyme is same as CFS? > I am seriously asking that and wish to know the answer. > bw > Nil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Exercise intolerance, for instance, is a major identifying symptom for CFS yet I never hear this being discussed on any Lyme boards. Fatigue is discussed, weakness is discussed, but not the phenomena of exercise leading to " flares, " which I would think anyone with CFS can easily relate to. ***Excellent point. Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 No human in my family is ill with CFS except me. However, while ill, we did get a kitten who happened to have been brought to our vet while very ill with a parasite and malnutrition and was supposedly 'well' by the time we adopted her. She eventually developed cataracts in both her eyes while still only months old, which showed she had been very malnourished in the early weeks of her life when a cat's eyes are still developing. I spent a lot of time on my back with her on my chest when she was young. We have three other cats, and they all sleep long and frequently as cats are known to do. However this one sleeps possibly 22 out of 24 hours, simply eats or lies down all the rest of the time, is very overweight in contrast to her three cat-mates who are slender, and I have no doubt in my mind that she has chronic fatigue syndrome. I believe it was Tiarelli (but it may have been someone else or several others) who confirmed cases of horses, dogs and possibly other mammals with CFS disease. This cat may have been 'predisposed' with a weakened immune system due to her difficult early days and weeks, but I have a suspicion she got CFS from me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 I have been diagnosed CFS for 7 years (though been ill 10 yrs) I was diagnosed as Lyme 3 years ago and have the classic lyme herxheimer reaction with treatment. In the last 2-3 years my fiance has gradually become ill with classic CFS symptoms and has now been diagnosed as Lyme. I'm pretty sure he caught it off me Re: Is This CONTAGIOUS? This has been an ongoing question for me as well. In fact, I just posted it on a Lyme board. I have had CFS for 14 years so I am very familiar with the symptomology. I also tested positive for Lyme a year ago, but was probably infected 30 years ago. However, I still have difficulty accepting that Lyme and CFS are the same animal. Exercise intolerance, for instance, is a major identifying symptom for CFS yet I never hear this being discussed on any Lyme boards. Fatigue is discussed, weakness is discussed, but not the phenomena of exercise leading to " flares, " which I would think anyone with CFS can easily relate to. Someone mentioned (either here or on another board) that those who are infected on the West Coast with Lyme tend to get CFS type symptoms and those infected on the East Coast get more arthritic type symptoms. This is very interesting to me and may be the reason for the differing symptomology. Ballady > > a Hi > > But You are saying that you have Lyme. Are we sure that Lyme is same as CFS? > I am seriously asking that and wish to know the answer. > bw > Nil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Bob, This board and the term CFS now includes so many different conditions, you will get many different answers. (Besides that nothing has been definitively proven). In earlier days...the 80s epidemic of " original CFS " , I was diagnosed by a doctor seeing hundreds of patients with this " new " mystery disease. I was going to be around a new-born, and psossibly in a new relationship, so the question was important. He told me the thinking was that it probably is contagious in the early weeks, but not once it's settled into the Central Nervous System. Other Specialists and advocates then also seemed to be saying this, and that " it " which most believed to be a virus, might actually be spread by casual contact...meaning airborne..coughing, etc.,but all do not become ill...like other viruses. With this theory, was also that there might be those passing it who were asymptomatic, or " carriers " . I have never heard any of them change their minds on this, but neither do I hear it brought up lately. Most would not say they were *positive* of anything, although my Doctor did say he was (that I was not then contagious). Many believe/believed the virus may have come and gone, leaving the damage. There have been clusters in communities/workplaces, and sometimes in families. BUt it is unclear if this is due to simultaneous exposure, genetic pre-disposition or what. Another line of research was finding a number of certain " other " medical conditions in higher numbers among those in close contact. I don't know what's happened to that research. ALso, by the way, earlier research was finding many pets of patients with what seemed to be strikingly similar illness. I don't know what's happened to those findings either. Some patients avoid close contact, as you are, or in the ways that Mike said Dr. Cheney told him.. Some make sure to disclose their illness if they are going to be intimate, then decide together. Some practice safe sex anyway. Some ignore the whole question. So many of us test for so many pathogens, this gets confusing too. But high titres or antibodies does not mean active infection. {And These may be opportunistic, as in AIDS, as opposed to causal.} I think that Lyme advocates do believe Lyme is infectious. Contagious means casual contact...airborne. Infectious requires closer, involving blood or bodily fluids. Even that varies, for instance, whether by saliva, or only blood, sexual, placenta, etc. This question is a major reason that ME/CFS/CFIDS activists began over 20 years ago, and continuing, to fight for proper research, education, and better name/definition, so *specific* Science can be applied. A very specific disease was spreading rapidly through the population. The CDC response/non-response assured no early investigation. And seem to be continuing, ever expanding the category of CFS, focusing on " stress genes " , Cognitive Behavioral Therapy, advising against tests, (yet saying other diseases must be excluded...weird...how, without tests??) And also a major reason that the symptoms and *meaning* of the diagnosis...CFS...matters. Living with a possibly contagious brain disease is obviously a different experience from all of the other things that now come under " CFS " ... In 21 years, no one I've lived with, been close to, or am related to, contracted ME/CFIDS/CFS, before or after me. I was not intimate with anyone when I was 1st struck. (One person I was friends with for awhile years later became ill 2 years after that, but now says it's Lyme) One person I was closer with who has RA and Graves suspects a connection. In other words, answer is...it's all over the map. And why hard Scientific Research needs to be done and publicised. Katrina > > I know there have been clusters of rapid-onset. > > But is this contagious once it's settled in? > > For example I've got a brother, with a pregnant wife and 3 yo. son. I used > to visit them fairly often, when I thought I was just old,fat and lazy. Now > that I'm thinking CFS and hearing about various theories of > viral/mycoplasm/bacterial/parasite involvement, I have stopped visiting > them, even when I have the energy, due to fear of passing this on. (They > live 10 miutes away and are used to me napping so it's not a big deal.) > > Am I over-reacting? > > - Bob Niederman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Ballady, I just got back from seeing Dr. Crist and he was saying that geographic location certainly plays a big role in tick borne illnesses. He mentioned a major problem being in the diagnostic phase depedning on which lab you send your blood too. The example he cited was involving Medical Diagnostic Lab (MDL) out of New Jersey. By many of the top physicians, MDL is a preferred choice for testing co-infections of Lyme suchs Babesia, Bartonella, Urlichia, etc.. I cant remember which pathogen it was either Bartonella or Urlichia, but he said this. He had a another physician who is on the east coast call and show concern that MDL was showing a very high like 90% positve for this pathogen. He was very concerned about false positives from MDL. However, Dr. Crist who is in Missouri told him that he had the exact opposite finding. He had only had a handful of positves ever despite suspecting in a far great number. so he suspects that the reason for this is geographic being that most of his clients are from the midwest; he suggested That all parts of the U.S. have a little bit different bugs and that certain labs depending on where they are located may not be adept at testing for the pathogens from another region. > > > Re: Is This CONTAGIOUS? > > > This has been an ongoing question for me as well. In fact, I just > posted it on a Lyme board. I have had CFS for 14 years so I am very > familiar with the symptomology. I also tested positive for Lyme a year > ago, but was probably infected 30 years ago. However, I still have > difficulty accepting that Lyme and CFS are the same animal. Exercise > intolerance, for instance, is a major identifying symptom for CFS yet > I never hear this being discussed on any Lyme boards. Fatigue is > discussed, weakness is discussed, but not the phenomena of exercise > leading to " flares, " which I would think anyone with CFS can easily > relate to. > > Someone mentioned (either here or on another board) that those who are > infected on the West Coast with Lyme tend to get CFS type symptoms and > those infected on the East Coast get more arthritic type symptoms. > This is very interesting to me and may be the reason for the differing > symptomology. > > Ballady > > > > > > a Hi > > > > But You are saying that you have Lyme. Are we sure that Lyme is same > as CFS? > > I am seriously asking that and wish to know the answer. > > bw > > Nil > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Aside from some perhaps dubious personal agendas regarding Incline Village, it was actually an important event. Cheney and published their findings in the ls of Internal Medicine, January 15, 1992. " A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpes Virus 6 Infection. " Cheney and were the second and third authors, Gallo and Komaroff the last authors. There were 259 patients, two-thirds from Tahoe outbreak, one-third from California and Nevada. Lymphoctye phenotyping studies, all abnormal. Eighty percent of patients had multiple punctate lesions in their brains, (read independently by two different neuro-radiologists who had 97 percent agreement, which is highly unusual). Komaroff wrote, " (our) studies suggest that patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system. " ... " We studied 259 patients who had an illness that was typically of abrupt onset, beginning with a " flu-like " syndrome that was followed by months or years of sometimes disabling chronic fatigue and impaired cognition. Enough cases occurred among family members, coworkers, and other close contacts to suggest the possibility of an infectious agent transmissible by casual contact. A few patients developed transient periods of apparent encephalitis, characterized by confusion, ataxia, paresis, and primary seizure disorders. Several unusual features have been revealed by immunologic testing, magnetic resonance imaging studies of the brain, and virologic studies... " The account in Osler's Web indicated that this paper, years in the making, was instantly attacked by a follow up letter penned by Reeves et al. at CDC. CDC apparently was threatened and angered by the publication of this paper, which revealed their cursory, perfunctory, incompetent investigation that they had conducted in their own Tahoe investigation. Nonetheless, the letter that was then published in the ls said that CDC had looked for HHV-6 in patients and never found it and posited that the entire paper was suspect. claims that CDC chose him and used his blood and proves that HE is THE CFS standard. No wonder they couldn't find it. still claims that no one from the original outbreak has recovered, yet claims that he has. Why was he chosen??? Cheney and went on to publish prolifically about abnormalities in this disease as have hundreds of other scientists and doctors. The problem is that these papers are simply ignored by CDC and NIH. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Jill, This is huge. It shows juwst how long the CDC has been trivializing this. Is the full paper in Osler's Web? It's a pity that the ls of Internal Medicine, thought they laudably make their content free online, only do so back to 1993. The sumary in PubMed has the following: " *A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection.* *Buchwald D*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Buchwald+D%22%5BAuthor%5D>, *Cheney PR*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pub\ med_Abstract & term=%22Cheney+PR%22%5BAuthor%5D>, * DL*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pub\ med_Abstract & term=%22+DL%22%5BAuthor%5D>, *Henry B*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Henry+B%22%5BAuthor%5D>, *Wormsley SB*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pub\ med_Abstract & term=%22Wormsley+SB%22%5BAuthor%5D>, *Geiger A*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Geiger+A%22%5BAuthor%5D>, *Ablashi DV*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pub\ med_Abstract & term=%22Ablashi+DV%22%5BAuthor%5D>, *Salahuddin SZ*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pub\ med_Abstract & term=%22Salahuddin+SZ%22%5BAuthor%5D>, *Saxinger C*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Saxinger+C%22%5BAuthor%5D>, *Biddle R*<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubm\ ed_Abstract & term=%22Biddle+R%22%5BAuthor%5D>, et al. Department of Medicine, Brigham and Women's Hospital, Boston, MA 02115. OBJECTIVE: To conduct neurologic, immunologic, and virologic studies in patients with a chronic debilitating illness of acute onset. DESIGN: Cohort study with comparison to matched, healthy control subjects. PATIENTS: We studied 259 patients who sought care in one medical practice; 29% of the patients were regularly bedridden or shut-in. MAIN OUTCOME MEASURES: Detailed medical history, physical examination, conventional hematologic and chemistry testing, magnetic resonance imaging (MRI) studies, lymphocyte phenotyping studies, and assays for active infection of patients' lymphocytes with human herpesvirus type 6 (HHV-6). MAIN RESULTS: Patients had a higher mean (+/- SD) CD4/CD8 T-cell ratio than matched healthy controls (3.16 +/- 1.5 compared with 2.3 +/- 1.0, respectively; P less than 0.003). Magnetic resonance scans of the brain showed punctate, subcortical areas of high signal intensity consistent with edema or demyelination in 78% of patients (95% CI, 72% to 86%) and in 21% of controls (CI, 11% to 36%) (P less than 10(-9)). Primary cell culture of lymphocytes showed active replication of HHV-6 in 79 of 113 patients (70%; CI, 61% to 78%) and in 8 of 40 controls (20%; CI, 9% to 36%) (P less than 10(-8], a finding confirmed by assays using monoclonal antibodies specific for HHV-6 proteins and by polymerase chain reaction assays specific for HHV-6 DNA. CONCLUSIONS: Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system. The active replication of HHV-6 most likely represents reactivation of latent infection, perhaps due to immunologic dysfunction. Our study did not directly address whether HHV-6, a lymphotropic and gliotropic virus, plays a role in producing the symptoms or the immunologic and neurologic dysfunction seen in this illness. Whether the findings in our patients, who came from a relatively small geographic area, will be generalizable to other patients with a similar syndrome remains to be seen. " The pubmed liting also gives notations of the letter from that shit Reeves, but no summary available. The P number (lilelyhood of coincidence, as I understand) of some of these findings ( 10(-8) and 10(-9) ) are values so low I have never seen them noted in any other study on PubMed) On 7/15/06, Jill McLaughlin <jillmclaughlin@...> wrote: > > > > Aside from some perhaps dubious personal agendas regarding Incline > Village, > it was actually an important event. > > Cheney and published their findings in the ls of Internal > Medicine, January 15, 1992. " A Chronic Illness Characterized by Fatigue, > Neurologic and Immunologic Disorders, and Active Human Herpes Virus 6 > Infection. " Cheney and were the second and third authors, > Gallo and Komaroff the last authors. > > There were 259 patients, two-thirds from Tahoe outbreak, one-third from > California and Nevada. Lymphoctye phenotyping studies, all abnormal. > Eighty > percent of patients had multiple punctate lesions in their brains, (read > independently by two different neuro-radiologists who had 97 percent > agreement, which is highly unusual). > > Komaroff wrote, " (our) studies suggest that patients may have been > experiencing a chronic, immunologically mediated inflammatory process of > the > central nervous system. " ... " We studied 259 patients who had an illness > that was typically of abrupt onset, beginning with a " flu-like " syndrome > that was followed by months or years of sometimes disabling chronic > fatigue > and impaired cognition. Enough cases occurred among family members, > coworkers, and other close contacts to suggest the possibility of an > infectious agent transmissible by casual contact. A few patients developed > transient periods of apparent encephalitis, characterized by confusion, > ataxia, paresis, and primary seizure disorders. Several unusual features > have been revealed by immunologic testing, magnetic resonance imaging > studies of the brain, and virologic studies... " > > The account in Osler's Web indicated that this paper, years in the making, > was instantly attacked by a follow up letter penned by Reeves et al. at > CDC. > CDC apparently was threatened and angered by the publication of this > paper, > which revealed their cursory, perfunctory, incompetent investigation that > they had conducted in their own Tahoe investigation. Nonetheless, the > letter > that was then published in the ls said that CDC had looked for HHV-6 > in > patients and never found it and posited that the entire paper was suspect. > > claims that CDC chose him and used his blood and proves that HE is > THE > CFS standard. No wonder they couldn't find it. still claims that > no > one from the original outbreak has recovered, yet claims that he has. > Why was he chosen??? > > Cheney and went on to publish prolifically about abnormalities in > this disease as have hundreds of other scientists and doctors. The problem > is that these papers are simply ignored by CDC and NIH. > > Jill > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Jill or anyone, do we know if valcyte is effective against HHV6? Mike C In , " bob niederman " <bobn1955@...> wrote: > > Jill, > > This is huge. It shows juwst how long the CDC has been trivializing this. > Is the full paper in Osler's Web? It's a pity that the ls of Internal > Medicine, thought they laudably make their content free online, only do so > back to 1993. The sumary in PubMed has the following: > > " > > *A chronic illness characterized by fatigue, neurologic and immunologic > disorders, and active human herpesvirus type 6 infection.* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Hi Mike, Yes. valcyte = valganciclovir Montoya presented in Barcelona at the HHV-6 conf and has treated people successfully with valcyte. The HHV-6 Foundation is working closely with him and he will soon be publishing a pilot study. Problem is that Valcyte is toxic. The orally administered antiviral medications such as acyclovir (Valtrex) may be less potent but may still be effective. I think the antiviral drug Lobucavir is still in FDA approved patient trials and seems to work against cytomegalovirus, but it is theorized it may work on HHV-6 as well. The HHV-6 Foundation is very active and are funding pilot grants to develop assays, antivirals, epi studies etc. Notice that their advisors include DeMeirlier, Komaroff, , Ablashi, - who are also on the Board or involved with the IACFS. http://www.hhv-6foundation.org/ What makes this particularly exciting is that antiviral medications are now being made available that can keep these viruses in check and may help keep the illness in remission. Jill __________________________ Sat Jul 15, 2006 5:33 pm " yakcamp22 " <yakcamp22@...> Message #101814 of 101839 Re: Is this contagious? Jill or anyone, do we know if valcyte is effective against HHV6? Mike C _____________________________________ In , " bob niederman " <bobn1955@...> wrote: > > Jill, > > This is huge. It shows juwst how long the CDC has been trivializing this. Is > the full paper in Osler's Web? It's a pity that the ls of Internal > Medicine, thought they laudably make their content free online, only do so > back to 1993. The sumary in PubMed has the following: > > " > > *A chronic illness characterized by fatigue, neurologic and immunologic > disorders, and active human herpesvirus type 6 infection.* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Jill McLaughlin < wrote: > Aside from some perhaps dubious personal agendas regarding Incline Village, it was actually an important event. > > claims that CDC chose him and used his blood and proves that HE is THE CFS standard. No wonder they couldn't find it. still claims that no one from the original outbreak has recovered, yet claims that he has. > Why was he chosen??? > Jill One can go back over the old messages and see that I have told you this multiple times, so you needn't keep asking unless you are trying to demonstrate your own memory loss. Dr Cheney selected me, not the CDC. He did so because I was one of 19 patients he found nationwide who had the concurrent signs and symptoms but was EBV negative and was the only one from the original Incline Cohort. He chose us to show that the illness was not " Chronic Epstein Barr Virus Syndrome " as the illness was called at the time. Both Dr Cheney and Dr said that " You are the purest case of CFS " at the time I was selected to participate in the CDC study, and again in 1997, and then again in the 1999 NIH " Original Cohort " study. so It is they who are making the claim. Argue with them, if you like. Yes, Dr found that I was HHV6a positive, which is why I was approved for ampligen. Do you still have any more questions as to why I was selected? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Jill McLaughlin wrote: > Montoya presented in Barcelona at the HHV-6 conf and has treated people successfully with valcyte. The HHV-6 Foundation is working closely with him and he will soon be publishing a pilot study. > It will be interesting to see the results of that study. Dr tried valcyte many years ago with no success at all. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 This is interesting, thanks Jill. I was given Valtrex about a year after I got CFS in 1993 (along w/ IM GG) and at this point I am still working. I even plan on a little hiking in CO next month. I wonder if it is due to getting the Valtrex relatively early into the course of my CFS. BTW, i live in Dallas and had to see Dr. Salvato in Houston. She was the one who prescribed Valtrex. Funny thing is, 6 months or so after I got the Valtrex from her, I got this really weird rash on my trunk between the lower ribs and my stomach, and my PCP here gasped when he saw it, thought it was shingles (I had no pain tho) and gave me another Valtrex script. So maybe I am a testimonial for using antivirals. Mike C > Hi Mike, > > Yes. valcyte = valganciclovir > > Montoya presented in Barcelona at the HHV-6 conf and has treated people > successfully with valcyte. The HHV-6 Foundation is working closely with him > and he will soon be publishing a pilot study. > > Problem is that Valcyte is toxic. The orally administered antiviral > medications such as acyclovir (Valtrex) may be less potent but may still be > effective. I think the antiviral drug Lobucavir is still in FDA approved > patient trials and seems to work against cytomegalovirus, but it is > theorized it may work on HHV-6 as well. > > The HHV-6 Foundation is very active and are funding pilot grants to develop > assays, antivirals, epi studies etc. Notice that their advisors include > DeMeirlier, Komaroff, , Ablashi, - who are also on the Board or Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 , How did you do on ampligen - did it help you recover? - Bob Niederman On 7/15/06, erikmoldwarrior <erikmoldwarrior@...> wrote: > > Yes, Dr found that I was HHV6a positive, which is why I was > approved for ampligen. > > - > > > Quote Link to comment Share on other sites More sharing options...
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