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Dr Bob Greetings, i have tested positive for XMRV
Jan 12, 2011

Dr Bob i really hope you post this message people deserve to know that there is another retrovirus like HIV out there infecting people, i know this is an HIV website but i know of many "worried wells" that have tested positive for XMRV, and now going through thebody.com archives im reading that there are many many people with my same symptoms that never tested positive for HIV and probably went on with their lives thinking they were fine when in fact might be infected with XMRV and are spreading left and right. Many studies have been done that have found and confirmed XMRV and some other have not found it and have said it's nothing but contamination, you of all people should know that there's many many people out there who have real health problems and symptoms all over the country and the world after having unprotected sex, leading me to believe that of course there is something else out there...symptoms can be stressed related sometimes but when you seen brain demyelination and white thrush and a swollen tongue with teethmarks around it, arguments of being a "mental condition" really makes doctors look like a bunch of morons who need to back to medical school. nobody in their right mind would ever think that having brain demyelination and/or brain lesions is a psychological problem as the CDC has labeled ME/CFS which is being linked to XMRV.

You Dr. Bob of all people should know as well that science will always triumph over politics and it only takes one great thinker to prove thousands wrong, many have been called crazy and lunatics before when they did great discoveries, the CDC keeps denying that XMRV exists even though the evidence is so compelling and they have known this for 30 years, let's remember the same happened when HIV was discovered many including the CDC and politicians kept denying that existed and ignored the scientific findings had they payed attention and done something about it when they had to, the HIV epidemic would probably not be as bad as it is.

They are doing the same exact thing now to XMRV ignoring scientist who have found what is probably the biggest finding ever since HIV. it's like the HIV story is repeating again, the same exact way, calling it a rumor virus, then giving it a derogatory name, naming the sufferers crazy and hysterical, it is really a shame that 30 years and billions of dollars that have been spent on HIV research have not taught us that just because you can't find a virus or a real reason for a disease does not mean is not real.

Back in May 5th 2010 i was sexually involved with a girl and when we were doing it i noticed the condom had broken when i withdrew my first thought was "i hope i don't get this girl pregnant" but she told me she was on the pill so i went on with my life,(all these following symptoms i have never seen or felt before in my life) two weeks went by and i had a couple of hot flashes but didn't make a big deal of it, two more weeks went by and i noticed i had many many little pimples on my back right behind my armpits around this same time i started to feel confused but i thought maybe i didn't get enough sleep, around the 5th week i started to get worried because i was feeling nauseated and somewhere around the 6th week i had a "viral spike" i got really sick with all sorts of symptoms, nausea,confusion,weakness, constipation,fatigue, night sweats, lost like 15lbs in a few days, i had a really bad rash on my back, i thought for sure i had gotten HIV, i went to get tested for HIV on July 21, negative.

i thought mm maybe it's just a stomach flu and it will go away, but the symptoms wouldn't go away if anything i felt like i was getting worse, i kept testing for HIV at many different places, i went to different cities to different health clinics to get tested like every week because the counselor at my local health clinic kept telling me i couldn't get tested anymore because it was negative this went on for about 4 months( by this time i had already been to ER twice because of all the symptoms had been to GI specialist, dermatologist,my primary MD, two infectious disease guys and many different health clinics).

i was sure i had gotten some weird HIV strain that the current test weren't able to pick up, and the funny thing is that all new counselors and doctors i went to see kept suggesting i tested for HIV because my symptoms mimic HIV i told them i had already tested negative and they would say then it's something else, then i came thebody.com and asked you doctor Bob if i had gotten HIV and why my tests kept coming back negative, you suggested i went to see an internist, i went to see an internist at the Northwestern Memorial Hospital in Chicago, i told him what was going on and gave him my binder with all my medical records from the previous months and gave him all my negative HIV results papers, since i had already gotten done head scans,abdomen scans,many CBCs,heart ultrasounds, full panels of stds, he suggested i get a brain MRI(because i kept complaining of weird feelings in my head like it was shrinking and like it was burning and something in there was moving around) he ordered a bunch of test, liver function,kidney function, CBC, HIV 1/2/O and some others and the only thing that was abnormal was the inflammation test it showed that i had inflammation somewhere in the body, i told him it was in the brain i could feel it. The brain MRI results came back and this was my first big break it showed brain demyelination, i kept telling my doctor that this happens with a viral invasion to the brain, and he said, but what virus, your blood counts are perfect and i can't find this virus, so i suggested he tested me for HTLV 1/2 and it was negative,he sent me to a neurologist she was booked like a month in advance, so in the mean time with no more doctor visits and started to read about XMRV, and at the same time kept testing for HIV at the RUSH university and kept coming back negative, finally i went to see the neurologist, and the very first possible diagnostic was MS, and then i remembered that the girl i was with had told me she was a CFS sufferer since 2004 and she's always very really tired and faints and has seizures sometimes by then i had read somewhere that XMRV was being linked to CFS, then i had no doubt i had gotten something infectious, the neurologist ordered a spine MRI to confirm MS but it came back as normal and she decided to sent me to another neurologist(i kept calling her and leaving her messages about XMRV and she never responded) i decided instead to go see one of the top infectious disease guys at the Northwestern Memorial Hospital and told her what was going on, she saw my symptoms and she said have you gotten tested for HIV i said yes it's negative, how about HTLV she asked i said yes negative, i told her about the new XMRV virus discovered and was now being linked to CFS and i told her the girl i was with had CFS for 6 years and she said i think you should go see the internist again and have him set you up with a counselor, i was then full with rage i mean who in their right mind would think that having brain demyelination is a mental thing.

My current symptoms are, progressive brain demyelination, major GI problems, i have developed food allergies i can't eat meat anymore makes me puke, extreme fatigue,multiple eruptive dermatofibromas,extreme lower back pain, major cognitive problems, confusion all the time,hands and feet numbness, daily headaches, pain in my spleen, swollen tongue with teethmarks around it, white thrush, pain in my liver and pancreas i have also developed an infection in my urinary tract, pain in my testicles, tingling in my eyes all the time, brain fog and brain inflammation and i feel as if i had a bunch of aunts running around in my brain,(note that i had never in my life seen or felt these before, i didn't even knew what brain demyelination was i never thought something like that could possibly happen to a human being) and i tested again a month ago for HIV and HTLV, CMV,candida,herpes 6,(just to make sure that wasn't it) and was all negative.

XMRV test results came back last week and sure enough it was positive.

i am really having a hard time understanding how some people think XMRV might not exist i mean isn't the evidence obvious, all they have to do is look at the history of CFS and see how they were these clusters, meaning there's a pathogen infecting people, look at the brain MRI for god sakes, they look like aids MRI but yet these people don't have aids, really the most logical reason for somebody to have a swollen tongue is because you have a virus in your blood that your spleen is trying to clean, white thrush means you have a compromised immune system and something is killing your good bacteria seriously it does not take a genius to figure these things out, it's amazing how some doctors, infectious disease guys,immunologist, virologist have studied for years and years and have spent thousands of dollars in education and yet they keep missing the most obvious things, i mean 30 years and billions of dollars have been spent in HIV research and these brilliant minds haven't figured out that there's something else out there that causes aids like illness and aids like brain MRIs, my five year old nephew could figure this one out really, and to think that some of these brilliant minds think that XMRV a retrovirus might not cause disease, really? when in history has a retrovirus not shown to cause disease when? i wanna know because it seems to be a big puzzle that some people can't figure out, a retrovirus isn't and will never be benign, anyways i just thought i would share this story with you guys because it's really fresh and i still remember every detail like it happened, most CFS and have been sick for years and don't remember what is like to be healthy but i do, 8 months ago i could go to the gym and run 5 miles nonstop, now i can't even get to my third floor condo with out feeling like my heart is gonna blow and nothing in my life is what it used to be this is just a horrible hell.

I really hope that people at the CDC would find it in their hearts to put all politics aside and admit that XMRV is a very dangerous pathogen not only because there are millions of people infected already but because millions more will get infected as well.

The blood supply has been contaminated with XMRV with no doubt and people will get sick from it for sure, when i thought i had gotten HIV i was at both HIV forums poz.com and thebody.com and many many people that had the "worried well" label kept testing negative for HIV for months some even have been in these forums for a couple of years, they reason they kept testing for HIV is because they all thought they had gotten HIV exactly like my case specially because they had many many symptoms after having unprotected sex, it turns out that a lot of them were going the Red Cross to donate blood because they thought that Red Cross was screening for all transmissible diseases and it turns out that most of them had their donations approved and later on many many have already tested positive for XMRV and who knows how long this has been going on for.

Response from Dr. Frascino

Hi,

Sure, I'll post your comment, but that doesn't mean I agree with it. In fact I disagree with many of the points in your rant, including your understanding of scientists, the early history of the HIV epidemic and your unsubstantiated assumptions about XMRV and its causal relationship with various disease entities. Nonetheless I still have an open mind regarding XMRV, as this is still an evolving story. However it's important to note that the most recently published research reveals mounting scientific evidence from multiple sources against XMRV as a cause of chronic fatigue syndrome and other diseases. (See below.)

I'm not denying you have symptoms or an abnormal MRI. However, based on the scientific evidence it is extremely unlikely that these are caused by XMRV. Sorry buddy, I'm inclined to agree with the CDC, based on my review of the published studies to date.

Dr. Bob

Now, several separate studies all published in the journal Retrovirology all show different ways in which test samples in the two positive studies may have become contaminated. In those studies, researchers concluded:

"These results show that contamination with mouse DNA is widespread and detectable by the highly sensitive IAP assay, but not always with less sensitive assays, such as murine mtDNA PCR. This study highlights the ubiquitous presence of mouse DNA in laboratory specimens and offers a means of rigorous validation for future studies of murine retroviruses in human disease." Retrovirology. 2010 Dec 20;7(1):108.

"We provide several independent lines of evidence that XMRV detected by sensitive PCR methods in patient samples is the likely result of PCR contamination with mouse DNA and that the described clones of XMRV arose from the tumour cell line 22Rv1, which was probably infected with XMRV during xenografting in mice. We propose that XMRV might not be a genuine human pathogen." Retrovirology. 2010 Dec 20;7(1):111.

"Mouse cells contain upwards of 100 copies each of endogenous MLV DNA. Even much less than one cell's worth of DNA can yield a detectable product using highly sensitive PCR technology. It is, therefore, vital that contamination by mouse DNA be monitored with adequately sensitive assays in all samples tested." Retrovirology. 2010 Dec 20;7(1):109.

"In the investigation of XMRV infection in patients of CFS and prostate cancer, researchers should prudently evaluate the test kits for the presence of endogenous MLV as well as XMRV genomes prior to PCR and RT-PCR tests." Retrovirology. 2010 Dec 20;7(1):110.

Questions & Answers XMRV (from the CDC)

What are XMRV and MLVs?

XMRV refers to a recently discovered retrovirus called xenotropic murine leukemia virus-related virus. It was first identified in 2006 in samples from men with prostate cancer. XMRV is closely related to a group of retroviruses called murine leukema viruses (MLVs), which are known to cause cancer in certain mice.

What is chronic fatigue syndrome?

Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made. For more information, see CDC's CFS Web page.

Have XMRV and MLVs been associated with human disease and illness, including CFS?

As noted above, XMRV was first identified in 2006 in patients with prostate cancer. A study published by Lombardi and colleagues (Science, 2009;326:585) reported finding evidence of XMRV in about two-thirds of CFS patients and nearly 4% of healthy persons. However, several other recent studies found no evidence of XMRV in persons with CFS and in controls; these studies include a report published by CDC investigators and colleagues in July 2010 (see update). More recently, researchers from the Food and Drug Administration (FDA), the National Institutes of Health (NIH), and Harvard Medical School reported evidence of MLVs in about 87% of CFS patients and 7% of healthy blood donors (Proceedings of the National Academy of Sciences, 2010). The reporting of different research findings from different studies is not uncommon. The different findings may be due to a variety of factors, such as differences in the study populations. At the present time, the potential role of XMRV and MLVs in causing diseases such as prostate cancer and CFS and the frequency of XMRV and MLV infection among healthy persons are unknown. If it is determined that XMRV and MLVs have a role in causing disease and illness in humans, prevention recommendations can be made. Top of page How are XMRV and MLVs transmitted? Are certain individuals more likely to be infected with XMRV and MLVs? The manner in which XMRV and MLVs are transmitted is unknown. It is unclear whether certain individuals are more likely to be infected with XMRV and MLVs. Studies of these viruses in humans have been under way for only a short time, and therefore these and similar questions have not been answered.

If researchers find that XMRV and MLVs are found in a majority of patients who have chronic fatigue syndrome, does this mean that CFS may be contagious?

One study that has been conducted on CFS and close contacts suggests there is no evidence that CFS is contagious or spread person to person. Occurrence of CFS is not more common in family members of patients with CFS, and none of the features typical of contagious disease have been associated with CFS. These features include seasonal or regional occurrence, travel history, occupation, exposure to animals, injection drug use, and sexual behavior.

Given that recent scientific papers have reported finding XMRV and MLVs in healthy people, can these viruses be transmitted through blood transfusion or organ/tissue transplantation?

XMRV and MLVs, like all retroviruses, are presumed to be transmitted by blood and tissues. Therefore, it is also presumed that XMRV and MLVs can be transmitted through blood transfusion. Since it is possible that XMRV and MLVs might infect many types of human cells, including some blood cell types, the safety of blood could be a concern if XMRV and MLV infection is confirmed to cause human illness and disease.

What is being done to evaluate the risk of XMRV and MLVs?

The Department of Health and Human Services (HHS) is conducting studies to determine the prevalence of XMRV and MLVs in the blood donor population. Additional research is needed to determine if XMRV and MLVs cause illness and disease. If it is determined that XMRV and MLVs may have a role in causing illness and disease, prevention recommendations can be made.

Who has collections of blood samples for this research?

The National Institutes of Health (NIH) currently funds the Retrovirus Epidemiology Donor Study-II (REDS-II), which focuses on addressing critical questions in blood safety. The REDS-II laboratory sample collection, called RADAR, has specimens from blood donors and matched recipients from various regions of the country. These matched specimens can be useful in testing for the transmissibility of "new" or "emerging" infectious agents, such as XMRV.

If researchers have tests for XMRV and MLVs, why can't they be used for screening of blood donors?

Although specialized research assays have been developed by some laboratories for use in XMRV and MLV studies, no standardized, validated tests are available for XMRV and MLVs. Screening tests require additional validation, for use in a large population, compared with diagnostic tests. CDC, NIH, and FDA, together with several nonfederal laboratories, are participating in an XMRV/MLV assay comparability study that is intended to help build a consensus among researchers on how to standardize these testing methods. While it is presumed that XMRV and MLVs can be transmitted through blood transfusion, no such transmission has been identified, and there are no known cases of XMRV or MLV infection or related illness in transfusion recipients. Therefore, there is currently no requirement for testing of the blood supply for the presence of XMRV or MLVs. If it is determined that XMRV or MLVs may have a role in causing disease and illness, prevention recommendations can be made. Such a risk, if it exists, could be decreased by developing and using blood donor screening assays or other measures. The use of a donor screening assay by blood establishments would require FDA approval of the test. There are many steps between what is currently known about XMRV and MLVs and the release of an FDA-approved test, if such a test were warranted. The test components and procedures must be standardized, and the test performance assessed in research studies before licensure (approval) by the FDA. However, if the risk is demonstrated, these steps could be taken more quickly, as occurred for screening approval of West Nile virus.

Should an individual with diagnosed chronic fatigue syndrome donate blood?

At the present time, there is no FDA guidance to defer donors who have CFS in the United States. However, FDA regulations require that a donor should be in good health. Medical directors at blood collection centers should exercise judgment in determining whether individuals with a history of CFS are in good health at the time of donation.

Should an individual who has been diagnosed, treated and currently in remission from prostate cancer donate blood?

There is no known association of prostate cancer with history of transfusion. In general, FDA has not recommended deferral of donors who have a history of cancer due to lack of such as association.

Should an individual diagnosed with chronic fatigue syndrome or in remission from prostate cancer be an organ or tissue donor?

At the present time, there are no U.S. recommendations to defer organ and tissue donations from individuals diagnosed with chronic fatigue syndrome or who are in remission from prostate cancer.



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