Keebler
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- Good article. Well thought out and gives respect to patients. Thanks, Bugg. -
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Bugg
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Another great article today from Wall Street Journal:
OCTOBER 8, 2009, 4:37 P.M. ET Retrovirus Linked to Chronic-Fatigue Syndrome
By AMY DOCKSER MARCUS Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.
An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, and the Centers for Disease Control and Prevention puts the U.S. figure at between one million and four million. CFS is characterized by debilitating fatigue and chronic pain, but there are no specific treatments, and the diagnosis is often made by ruling out other diseases. Thus there is disagreement in the medical community as to whether CFS is a distinct disease. A study showing a strong viral association with CFS could change that equation.
But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS.
Researchers are just as concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV.
If larger studies confirm these numbers, it could mean that as many as 10 million people in the U.S. and hundreds of millions of people around the world are infected with a virus that is already strongly associated with at least two diseases.
The study was done by researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., the National Cancer Institute and the Cleveland Clinic.
In September, researchers at the University of Utah and Columbia University Medical Center found XMRV in 27% of the prostate-cancer samples they examined.
That study also showed that 6% of the benign prostate samples had XMRV. The chronic-fatigue study is the first to find live XMRV virus in humans.
Neither study conclusively shows that XMRV causes chronic-fatigue syndrome or prostate cancer. But the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. "NCI is responding like it did in the early days of HIV," says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.
Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it.
The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.
So far, XMRV, known fully as xenotropic murine leukemia virus-related virus, doesn't appear to replicate as quickly as HIV does. Scientists also don't know how XMRV is transmitted, but the infection was found in patients' blood samples, raising the possibility that it could be transmitted through blood or bodily fluids.
Dr. Le Grice of the NCI said the highest priority now was to quickly develop a validated blood test or other assay that could be used in doctors' offices to determine who has XMRV.
At the workshop, participants also raised the issue of protecting the nation's blood supply. Dr. Le Grice said there isn't enough evidence yet to suggest that people with XMRV shouldn't be blood donors but that determining how XMRV is transmitted was a critical issue.
"A large effort is under way to answer all these questions," he said. "I do not want this to be cause for panic."
Although Thursday's scientific paper doesn't demonstrate conclusively that XMRV is a cause of CFS, additional unpublished data make it a very strong possibility.
Dr. Mikovits said that using additional tests, the scientists determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control.
"Just like you cannot have AIDS without HIV, I believe you won't be able to find a case of chronic-fatigue syndrome without XMRV," Dr. Mikovits said.
At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer. The link between XMRV and lymphoma is still being investigated, but it raised the possibility that XMRV may be associated with other cancers in addition to prostate cancer.
NCI's Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.
The Science study was based on blood samples from a national repository at the Whittemore Peterson Institute collected from doctors in cities where outbreaks of chronic-fatigue syndrome occurred during the 1980s and '90s. One of the key questions that the NCI's Dr. Le Grice says must now be answered is whether XMRV shows up in large numbers of CFS patients all over the country.
Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus." Researchers are already starting to test antiretroviral therapies developed for AIDS to see if they are effective against XMRV.
The work on XMRV in chronic-fatigue patients initially was funded by Annette and Harvey Whittemore and the University of Nevada, Reno. The Whittemores set up the institute in 2006 after watching their daughter Andrea suffer from chronic-fatigue syndrome for most of her life. They spent millions of their own money to pay for administrative services, office space, lab equipment and research operations. They were frustrated by the lack of government funding for scientific research into the disease.
At their home in Reno, Andrea Whittemore-Goad, 31 years old, used oxygen before speaking about the devastating toll CFS has taken on her.
Ms. Whittemore-Goad says she was a regular school girl, playing sports and involved in school activities, until the age of 10, when she became ill with a monolike virus that she couldn't shake.
She said doctors first told her parents that the illness was psychological, that she had school phobia and was under stress from her parents. "We kept searching for an answer," says Ms. Whittemore-Goad, who says lymph nodes in her groin were so painful that her brothers and sisters used to have to carry her upstairs. She was diagnosed at age 12 with chronic-fatigue syndrome.
Over the years, doctors have treated her symptoms, like intense headaches and severe pain, but the illness persists. She has had her gallbladder, spleen, and appendix removed because they became infected. She tried an experimental drug that she says gave her relief for years, but she then started experiencing side effects and had to stop taking it. Recently the illness has become worse; she began suffering seizures and can no longer drive.
Sitting on the couch next to her husband, whom she married six months ago, Ms. Whittemore-Goad says the news that she is infected with XMRV "made everything that has happened to me make sense." Brian Goad, her husband, said he felt relieved knowing "now we can find a way to treat and hopefully cure it."
For both of them, the discovery of the virus is life-changing. There are more than 10 families in the group where family members also tested positive for XMRV. Members of the Whittemore family are now being tested.
Keebler
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- Wow! For the Wall Street Journal to take this seriously is nothing short of a miracle. -
Bugg,
Since WSJ is subscription only, I could not access this at their site. However, if you have time and energy, might you be so kind as to find the article Headline?
I'd like to put that with my file page on this and will help if I give it to a doctor.
Thanks.
=========
Wonder if there is a rife frequency for this? -
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Hoosiers51
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This seems like a potentially big discovery. I wonder if this virus could be a reason some people have a hard time getting over Lyme.
I have found the Wall Street Journal to be a good publication. Unlike a lot of the biased national newspapers (which often either lean left or right), they seem to take journalism seriously and do not tend to slant.
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posted
I also wonder if using a leukemia frequency would work. This sounds so promising for patients who don't get well with just antibiotics.
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Bugg
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Keebler--
I made the edit...hope that helps...
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Keebler
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Bugg,
Merci Beaucoup.
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quote:CFS impairs the immune system and causes incapacitating fatigue, according to the U.S. Centers for Disease Control and Prevention. Sufferers can also experience memory loss, problems with concentration, joint and muscle pain, headaches, tender lymph nodes and sore throats.
Sx sounds familiar. So are they mixing up Lyme and XMRV? Or are we?
I wonder how many people with CFS (like I was originally dx) in their survey really have lyme? Or lyme wasn't taken into account?
If I didn't get re-bit by a tick, I STILL would have thought I had CFS!
Maybe this is why many with lyme don't get better with abx: they don't have it?
Or maybe they have both?
This has some scary implications.
It could be used to deny tx because we don't have lyme, we have a virus and therefore abx won't work.
Oy
James
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I know my daughter has/had lyme, babs and bart. Lyme was confirmed by PCR as well as Western Blot.
She had mono at age twelve and has never been the same--always sick. She is in her 20's now. After she was diagnosed, I could trace symptoms back to at least age 6, but she was not sick until after mono.
Antibiotics have never gotten her functional over a long period of time.
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seekhelp
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Mono destroyed my life at age 21..same story.
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Same with me on the mono. I've had Lyme since about age 8, but got mono at age 17. It's been all down hill since.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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- Same here with mono - first semester in college. Never got over it.
The mono had not been diagnosed by blood test, though. The doctor just said I had a classic case. I got huge welts from the antibiotics they gave me for horrible cough that went with it. Now I realize they looked like bartonella rashes.
Treatment was a joke. I went home for a couple of weeks. No special training in eating good foods or how to rest - or with supplements. That was 1971. I should have had far better treatment plan, though. Far better, even with self-care. I had no clue of how to take care of myself at college.
We have since learned some of what we forgot for few decades about self-care.
Positive WB for lyme, babeia, ehrlichia years later after many ticks along the way.
sutherngrl
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Mono= epstein barr virus. Maybe that virus is the culprit for why many of us can't get well.
Also, for a while didn't they believe that the epstein barr virus was the cause of CFS?
This really makes one wonder. Could you test positive with specific lyme bands and not have LD? I am going to talk to my LLMD about this at my next appointment.
What if we are taking years of antibiotics when we really have a virus? Then years later the virus finally clears on its own, but we all think it was due to long term antibiotics?
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Keebler
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- sutherngrl asks: " Could you test positive with specific lyme bands and not have LD?"
Probably not. Also to consider, ticks also carry a lot of other infections, viruses included.
Its coinfection cohabitation. Many of us do have viruses. But I had positive tests for 3 tick infections and never got treatment for that so that cannot be discounted.
Lyme, even alone, can take a very long time to overcome. Still, here, there are frequent to consider the full range of what can be in the mix.
Today's articles on the newly identified virus may be a huge help as we look more deeply to cover all the bases. Others to consider:
=================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link. -
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sutherngrl
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Many LLMDs do not test for viruses, but maybe this latest discovery will get their attention.
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Bugg
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From Cleveland Clinic:
What is XMRV?
XMRV is a type of virus known as a ``retrovirus.'' XMRV is a member of the genus, gammaretrovirus, which is closely related to viruses found in mice and other mammalian species. In infected cells, the RNA genome of XMRV is copied into DNA. The viral DNA inserts in the cells' DNA during replication of XMRV.
How was it discovered?
In a study of 150 men that examined tissue samples of prostates that had been surgically removed, a team of researchers from Cleveland Clinic and the University of California, San Francisco identified the virus, XMRV, in prostate tumors.
The researchers first reported their findings on Feb. 24, 2006, at the American Association of Urology meeting in San Francisco. The full report was then published in the March 2006 issue of PLoS Pathogens. The same team reported in the January 2007 issue of the Proceedings of the National Academy of Science that XMRV is an infectious virus.
Prior to these reports, the virus had never been seen before, either in humans or in animals.
What do we know currently about XMRV?
The initial research determined that XMRV is 25 times more likely to be found in prostate cancer patients with a specific genetic mutation than men without the mutation. This finding is consistent with previous epidemiologic and genetic research suggesting that prostate cancer may result from chronic inflammation, perhaps as a response to infection.
Recent research from the University of Utah has independently confirmed the presence of XMRV in prostate cancer. The findings show that the virus is found in cancer cells and is more frequently associated with more aggressive tumors.
Now, evidence suggests that XMRV is frequently present in the blood of patients with chronic fatigue syndrome (CFS). This finding shows there is an association between XMRV and CFS but does not prove that XMRV causes CFS. These findings were reported in the journal Science on Oct. 8, 2009, by researchers from Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and Cleveland Clinic.
What is currently being studied about XMRV? Future research will address the critical question of what is the risk to humans of XMRV infections. In particular, is XMRV a cause of human diseases such as prostate cancer and CFS, or is it merely a passenger virus?
What other diseases might XMRV be involved in? If the virus causes disease, how does it do so? Development of clinical assays to show who is infected and who is not is essential to linking the virus to human disease.
How is the virus transmitted from human to human?
How does our immune system control XMRV infections?
Does the blood bank need to be screened for XMRV? Where did XMRV come from? What are the future implications and applications for XMRV? If XMRV is proven to cause human disease, there would be opportunities for improved diagnosis, treatment (antivirals) and prevention (vaccine). How could XMRV and HPV be similar?
We know that HPV causes cervical cancer, and that it is transmitted via sexual intercourse. We also know that men with a history of prostatitis and sexually transmitted diseases are at a higher risk for developing prostate cancer.
These and other findings suggest that there is the potential that XMRV is sexually transmitted.
In addition to the presence of XMRV in some prostate cancer patients, a disease of men, XMRV has now been found in CFS, which predominantly affects women. Therefore, members of both sexes are at risk of XMRV infection.
How long until XMRV is used as a screening or diagnostic tool or has a vaccine associated with it?
The best estimates are that we are perhaps two to three years from applying XMRV-based screening and diagnostic measures in the clinical setting. Treatment using an existing, approved antiviral agent could occur in a similar time frame.
In contrast, a vaccine could take a decade or longer to develop and implement.
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btmb03
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Thx for posting this Bugg, very interesting.
However I must add my 2 cents. As a CFS/Lyme pt (misdiagnosed for many years and severely ill) first it was EBV..then HHV-6..then enteroviruses (John Chia's work) and now..this. All were exciting new discoveries at the time.
I do feel however that until they come up with accurate diagnostic tests this new discovery is (for me) yet another variable to add to the pot.
Hopefully someday docs will be able to accurately diagnose us with the multiple infections we [probably} have instead of targeting only one or two. I know of the above family and am truly grateful they have put so much time, financial and emotional resources into pioneering more research. Yay to them and others!
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seekhelp
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I'm seriously considering this.
quote:Originally posted by sutherngrl: Mono= epstein barr virus. Maybe that virus is the culprit for why many of us can't get well.
Also, for a while didn't they believe that the epstein barr virus was the cause of CFS?
This really makes one wonder. Could you test positive with specific lyme bands and not have LD? I am going to talk to my LLMD about this at my next appointment.
What if we are taking years of antibiotics when we really have a virus? Then years later the virus finally clears on its own, but we all think it was due to long term antibiotics?
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Keebler
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- Could you test positive with specific lyme bands and not have LD?
Probably not. -
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massman
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Seems like an obsession - WHICH bacteria ? WHICH virus ? Where ? WHAT names please ?
How about changing the internal terrain so neither viruses nor bacteria have a friendly place to live ?
Some natural ways to deal with this are available and are essentially broadscope.
And parasites ? Seems there are some very long drawn out protocols that to me seem to dramatize the problem and up the expense. Some programs I have heard of last only 2 to 4 weeks and are specific for large with another program for small paras.
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Lymeorsomething
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My issues began with mono as well.
Some 3 years later...I'm showing signs of improvement in areas but still a good ways to go.
This new study is not really definitive and doesn't really explain why people with mono (EBV) can enter into a state of chronic fatigue as well under certain circumstances. There are probably a number of viruses that can cause similar issues.
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Well if you have lyme only bands I dont see how you DO NOT have it.
Viruses make me worry though. We have at least 6 different abx classes to fight bacteria. While it is resistant they do work against it.
vs. viruses we have... - a few extremely toxic drugs(e.g. valcyte) and acyclovir. and thats it!
Also anyone here got treated for viral infections? What were you treated for, with and for how long?
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posted
My daughter was tested for all of the viruses last year by the lyme specialist we were seeing at the time. Everything was normal except the cytomeglia virus and even that he said would resolve by itself with the right lyme etc treatment. He did say some patients needed treatment for EBV and HHV-6. It just depends on how high the titers are.
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Lymeorsomething
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Well, some herbs may have some anti-viral activity but apart from that all bets are off.
Some lyme bands cross-react to viruses notably EBV, which is why Igenex offers the band 31 confirmation.
I'm not convinced cross-reactions are well-understood yet so it's conceivable other cross-reactions are occurring that are simply not noticed.
For instance, does H Pylori, another spirochete, induce any cross-reactive response?
A lot of good questions still remain.
I'm about to get back on Valtrex. I hope to run it for at least a few months.
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springshowers
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I have been on Valtrex for a year now and it has Helped me quite a bit!
For this year I now always have on board an anti Viral and anti fungal and anti protozoan and an anti bactieral.
I self treated for two years and I came up with that sort of protocol afte much research.
Now my doctor says to me that he is now seeing the value in treating all the angles at once.
I hope to not be on it all too long though... In my mind one year is minimum..
Just my experience and feeling. I am not a doctor.
I just know I wrote a list of all the infecions I have ever had and or tested positive for.
I had about 3 or 4 under each category and I know they take turns..too..
This disease really is complicated and not all about the killing and keeping these infections at bay but.. it sure does help when you body can not do it for us.
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bettyg
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i was 20 when my 1st dx was MONO! this was the beginning of my lyme disease!!
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copying reuter article here and breaking up for neuros like me ... betty
Study isolates virus in chronic fatigue sufferers
Thu Oct 8, 2009 2:00pm EDT
* Virus found in 67 percent of chronic fatigue patients
* Findings show link to CSF, not proof of causation
* Discovery a major step toward treatment options
By David Morgan
WASHINGTON, Oct 8 (Reuters) -
A virus linked to prostate cancer also appears to play a role in chronic fatigue syndrome, according to research that could lead to the first drug treatments for a mysterious disorder that affects 17 million people worldwide.
Researchers found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients.
The same virus showed up in only 8 of 218 healthy people, they reported on Thursday in the journal Science.
Judy Mikovits of the Whittemore Peterson Institute in Nevada and colleagues at the National Cancer Institute and the Cleveland Clinic emphasized that the finding only shows a link between the virus and chronic fatigue syndrome, or CFS, and does not prove that the pathogen causes the disorder.
Much more study would be necessary to show a direct link, but Mikovits said the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.
"You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away," Mikovits said in a telephone interview.
She said AIDS drugs such as non-nucleoside reverse transcriptase inhibitors and integrase inhibitors as well as nonsteroidal anti-inflammatory drugs and cancer-fighting proteasome inhibitors could be tested as potential treatments for CFS.
Takeda Pharmaceutical Co Ltd (4502.T) makes a cancer drug called Velcade that is a proteasome inhibitor, although there are no reports that it has been tested against XMRV.
INCAPACITATING FATIGUE
CFS impairs the immune system and causes incapacitating fatigue, according to the U.S. Centers for Disease Control and Prevention.
Sufferers can also experience memory loss, problems with concentration, joint and muscle pain, headaches, tender lymph nodes and sore throats.
Symptoms last at least six months and can be as disabling as multiple sclerosis or rheumatoid arthritis, the CDC said.
But Mikovits said there is currently no treatment for CFS aside from cognitive behavioral therapy to help patients cope with the disorder's crippling effects.
The XMRV virus is a retrovirus, like the HIV virus that causes AIDS.
As with all viruses, a retrovirus copies its genetic code into the DNA of its host but uses RNA -- a working form of DNA -- instead of using DNA to do so.
Known formally as xenotropic murine leukemia virus-related virus, XMRV has also been found in some prostate tumors and is also known to cause leukemia and tumors in animals. [ID:nN07209255]
Mikovits' team said further research must now determine whether XMRV directly causes CFS, is just a passenger virus in the suppressed immune systems of sufferers or a pathogen that acts in concert with other viruses that have been implicated in the disorder by previous research.
"Conceivably these viruses could be co-factors in pathogenesis, as is the case for HIV-mediated disease, where co-infecting pathogens play an important role," the report said.
Because 3.7 percent of the healthy test population tested positive for XMRV, the researchers said several million otherwise healthy people in the United States could be infected with it.
(Editing by Maggie Fox and Vicki Allen)
� Thomson Reuters 2009 All rights reserved
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ukcarry
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Very interesting.
I'm another who has EBV antibodies and long illness characterised by CFS symtoms [Lyme and co diagnosed only in 2007 and 8].
It seems we all have such a complex mixture of bacteria, parasites and viruses to deal with, not to mention the cards we are dealt genetically.
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nenet
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I'm curious why everyone is discussing EBV when the virus of concern in the articles/studies is XMRV (xenotropic murine leukemia virus-related virus):
cantgiveupyet
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So there is no test available for XMRV? Would Valtrex work on this virus?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
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Bugg
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The article I posted from the Cleveland Clinic (see above) answers some of your questions about testing.....Scroll down towards the end of it...
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nenet
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I have no idea. They don't mention antivirals in the articles, just AIDS and cancer drugs, and drugs for inflammation. Here's an excerpt:
Much more study would be necessary to show a direct link, but Mikovits said the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.
'"You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away," Mikovits said in a telephone interview.
She said AIDS drugs such as non-nucleoside reverse transcriptase inhibitors and integrase inhibitors as well as nonsteroidal anti-inflammatory drugs and cancer-fighting proteasome inhibitors could be tested as potential treatments for CFS.
Takeda Pharmaceutical Co Ltd (4502.T) makes a cancer drug called Velcade that is a proteasome inhibitor, although there are no reports that it has been tested against XMRV.'
nenet
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quote:Originally posted by cantgiveupyet: So there is no test available for XMRV? Would Valtrex work on this virus?
You asked if there was a test for XMRV - there is, but only in research settings. You cannot get tested unless you are part of research. There is no product invented and produced for Doctors or commercial labs to buy and use.
They just discovered this virus in humans, so there is no commercially available test, like with any other newly discovered pathogen, it will take a while to develop and bring to market.
nenet
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quote:Originally posted by Lymeorsomething:
For instance, does H Pylori, another spirochete, induce any cross-reactive response?
Hi Lymeorsomething. You make an interesting statement and point here, so I am curious to find out more.
Can you please explain or cite a reference that says Helicobacter pylori is a spirochete? I'm very curious, as I have not read of this before, and can't find aything to support it.
It has a type of flagella, but many bacteria have flagella, not just spirochetes. Is this what you were referring to?
"39 is a major protein of Bb flagellin; specific for Bb (meaning only Lyme organisms can cause this)
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia"
Since h. pylori is not a Spirochete (and not even of the Genus Borrelia), it cannot cross-react.
Sorry for the off-topic bit here, but it was relevant to a post in the thread, and bared further discussion, I think. If I am confused or mistaken on the points I raised (which is HIGHLY probable! ), please let me know. I am genuinely curious about this.
Lymeorsomething
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Nenet, Good point. HP is often loosely referred to as a spirochete or a spiral bacteria but I guess it's not a true spirochete. But as the intro to chapter 22 of the book below suggests, it is similar to the lyme and syphilis bacteria.
posted
I think the real point is being missed here.
The IDSA argues that the Lyme tests are inaccurate or wrong and we don't have Lyme! This finding on XMRV will be used as ammo to support that position.
This can be used to argue that Lyme is mostly bogus! And if XRMV really is the underlying cause of most CFS, maybe it is!
Is the IDSA right? Antibodies exist for lyme long after the spirochetes are gone? If you have "chronic-lyme" maybe it's really XMRV?
If you're now thinking you have this virus, then all the criteria you've used to BELIEVE you have Lyme is called into question.
And then the whole foundation of "clinical" diagnosis falls on it's head!
That would mean the LLMDs are MIS-DIAGNOSISING XRMV as LYME!
Posts: 872 | From New York City | Registered: Jun 2008
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posted
Just about EVERYONE has had EBV! It was originally used as the cause of CFS! That's now discredited.
Just like everyone has had herpes either as cold sores or as chicken pox!
That was the first thing the Dr checked when I went in complaining of fatigue and brain fog. He wanted to write it off as EBV.
Instead, he wrote it off as CFS (cause unknown). Everybody has had EBV why would so many people NOT get CFS from it? That's why EBV is no longer considered the source of CFS.
Before people considered lyme as cause of fatigue, didn't the Drs check for EBV??
I never had mono. I did have Cytomegalic virus, a close cousin of mono. However, my sx started years later and only after I had the rash.
This whole thing blows my mind.
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
I strongly believe in the multifactor cause of all those chronic diseases. Its not single bacteria , or single virus. Did you know that up to 90% of cells in our bodies are of bacterial origin?- thats right most of the cells in our bodies are not our own (by count not by volume - bacteria are orders of magnitude smaller)!
So thing is some pathogenic infections (both viral and bacterial ) destroy our immune systems and regulatory mechanisms to the point that it allows all other parasitic infection fluorish .
HIV is perfect example of how it happens. With HIV though it is very clear (destruction of CD4 cells) and hence apparent. Other infections have more subtle ways of deregulating immune system - the one which are poorly researched, and practically no one in mainstream runs tests for it (when was last time your pcp ran your cytokine count ? )
Stop concentrating on single infection -you have tons of them. Most people do, the ones are who getting sick are those whose organisms are disregulated to the point of inability to keep them under control
I think destruction of as much bacterial and viral load together with immune system modulation is a way to combat chronic illness.
Posts: 856 | From MA | Registered: Jul 2009
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nenet
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Member # 13174
posted
quote:Originally posted by Lymeorsomething: Nenet, Good point. HP is often loosely referred to as a spirochete or a spiral bacteria but I guess it's not a true spirochete. But as the intro to chapter 22 of the book below suggests, it is similar to the lyme and syphilis bacteria.
Thank you for the link to the book excerpt - it looks interesting. The book excerpt characterizes them as similar in that they are all "slow" bacteria (along with leprosy), that can cause low-grade *persistent infection*. Well, well! Nice find!
I am curious to look into the references for that statement, and see whose research it is from, since he makes the argument that Lyme is a low-grade *persistent* infection, and this is a textbook, from the looks of it. I wonder what IDSA would think.
I wonder where h. pylori is often referred to as a spirochete, since that is not the case. It shares a similar form (spiral or curved, not straight or round), but many different types of organisms have a spiral or curved form.
posted
James, I don't think the IDSA or anyone at this point is going to be able to exactly pinpoint what's going on with us organism-wise.
I think it's going to be multi-factorial for all of us - for example, I have the fibro symptoms, not CFS. Never had mono. So I don't think it's simply a matter of maybe we all have this retrovirus. Some may; others won't.
Posts: 13116 | From San Francisco | Registered: May 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by JamesNYC: I think the real point is being missed here.
The IDSA argues that the Lyme tests are inaccurate or wrong and we don't have Lyme! This finding on XMRV will be used as ammo to support that position.
This can be used to argue that Lyme is mostly bogus! And if XRMV really is the underlying cause of most CFS, maybe it is!
Is the IDSA right? Antibodies exist for lyme long after the spirochetes are gone? If you have "chronic-lyme" maybe it's really XMRV?
If you're now thinking you have this virus, then all the criteria you've used to BELIEVE you have Lyme is called into question.
And then the whole foundation of "clinical" diagnosis falls on it's head!
That would mean the LLMDs are MIS-DIAGNOSISING XRMV as LYME!
quote:Originally posted by JamesNYC: Just about EVERYONE has had EBV! It was originally used as the cause of CFS! That's now discredited.
Just like everyone has had herpes either as cold sores or as chicken pox!
That was the first thing the Dr checked when I went in complaining of fatigue and brain fog. He wanted to write it off as EBV.
Instead, he wrote it off as CFS (cause unknown). Everybody has had EBV why would so many people NOT get CFS from it? That's why EBV is no longer considered the source of CFS.
Before people considered lyme as cause of fatigue, didn't the Drs check for EBV??
I never had mono. I did have Cytomegalic virus, a close cousin of mono. However, my sx started years later and only after I had the rash.
This whole thing blows my mind.
James
To me this is not concerning, and I hope I can properly explain why.
What we are most interested in (those of us personally affected by illness), is finding the truth. IDSA and anyone wanting to try to deny that Lyme is an easy to acquire, difficult to treat disease, will always look for ways to deflect and muddy the waters.
If this new virus is important to some or all of us in our regaining our health, then that is important. If it is a red herring, we will be right back where we have been all along. As you said, at one time EBV was looked at as the possible sole culprit in *"Chronic Lyme", and now that theory has been discredited, as far as I am aware.
Either this will happen again with XMRV, or it will be a relevant finding. Maybe it plays a part in a co-infectious manner, or as an opportunistic entity. Regardless the findings, we'll have more knowledge than we started out with. IDSA can grumble and kick dust all they want, they can't change the facts. All they do is mess with perceptions (they have good perceived cred/PR), and they are losing that battle.
Lyme has always been a clinical, differential diagnosis, because it mimics (or causes) many other diseases and syndromes. Lyme in this regard is not different from Syphilis in its day, which also is able to mimic and cause many disease states.
In the end, this poses no extra threat to us, other than a few years down the line if it's found to be a cause of disease and they have commercial testing, our pocketbooks might feel an extra pound or two lighter when we make our trips to get differential diagnosis lab tests. Lyme is similar to many other hard to test for diseases/syndromes that cause similarly wide-ranging symptoms (Lupus, RA, MS, etc.).
I hope that all made sense. I understand your anxiety over the IDSA and their attempts to discredit Lyme as a difficult-to-treat entity, but I don't see them being able to use this as a deterrent any more than they could EBV, when the science/facts won out.
* I prefer to call it all Lyme, because the IDSA makes a false dichotomy between "Lyme" and "Chronic Lyme." They are one and the same entity.
Amanda
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posted
Interesting, thanks for posting.
As someone else pointed out, there have been several other virus's found in high proportions of CFS study patients.
The reason most of these studies don't turn out to be the simple story is that they initially only study a small group of people, and so they don't get enough of a cross section of the population.
In this particular study, they only looked at 101 people, and of those 33% of them did NOT have this virus. Given the fact that people are highly variable in why they have CFS, I'll bet when they expand the study to more people across a larger geographic area, they will find a much lower percentange of people with the virus.
I'd bet if you sampled 100 people with CFS in Conn., a significant number of them would actually have tick infections.
Then there is the problem of correlation not being causation. Does teh virus cause the CFS, or is it that sick people tend to pick up virus easier. It would have been very interesting if the next time they compared a third group, say AIDS patients, ot the CFS and controls. There are many reasons people have CFS.
I do believe that this is important though, since even if it helps a few people, it is worth investigating.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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nenet
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posted
quote:Originally posted by Amanda: Interesting, thanks for posting.
As someone else pointed out, there have been several other virus's found in high proportions of CFS study patients.
The reason most of these studies don't turn out to be the simple story is that they initially only study a small group of people, and so they don't get enough of a cross section of the population.
In this particular study, they only looked at 101 people, and of those 33% of them did NOT have this virus. Given the fact that people are highly variable in why they have CFS, I'll bet when they expand the study to more people across a larger geographic area, they will find a much lower percentange of people with the virus.
I'd bet if you sampled 100 people with CFS in Conn., a significant number of them would actually have tick infections.
Then there is the problem of correlation not being causation. Does teh virus cause the CFS, or is it that sick people tend to pick up virus easier. It would have been very interesting if the next time they compared a third group, say AIDS patients, ot the CFS and controls. There are many reasons people have CFS.
I do believe that this is important though, since even if it helps a few people, it is worth investigating.
Amanda, you make some really good points here. I also wanted to mention something about the study samples - they came from only a few areas where there were "outbreaks" of CFS in a certain time span. So they were people living in the same area, in the same time period, who all got diagnosed with CFS and so had their blood sent to a research archive.
This makes the results even more difficult to draw conclusions from, as they were from outbreaks, and therefore cases that would be more likely to be caused by a single factor or set of factors. As you said, in Connecticut, it might be TBDs that form the basis for most "CFS" misdiagnoses there.
I'm not explaining this sampling issue very well here, but maybe someone here with epidemiology and statistics backgrounds can.
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Nenet, thanks for the clarification. I've been working on multiple graduate school projects so I'm not articulating points very clearly here it seems.
Whether or not HP is a spirochete (and thanks for pointing out that it's not) is not essential to what I was saying. HP has been implicated in cross-reactivity with Bb antigens though just as EBV, the virus, and Syphilis, the spirochete, have.
I was just pointing out that cross reactions may not be fully understood, especially as relating to emerging threats like XMRV or other undefined pathogens...
EBV does play a role in this discussion as many people have seen their chronic conditions sparked by EBV, including me, and by positive monospot testing initially.
So I think we tend to want one source of all our ills when in reality its often x, y, or x, y, and z causing our issues.
Even so it's good to see this new info on the XMRV.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
It's ONLY good news to those who have CFS from XMRV. It is not good news that have "CFS" from Lyme and are denied treatment because "we now know that CFS is from a virus".
The IDSA dismisses Chronic Lyme as CFS and FMS, two "syndromes" of unknown cause and no known treatment.
Insurance companies use the IDSA guidelines as a means to deny abx treatment for Chronic Lyme. Why should they pay for tx of a "non-existat" disease? You have CFS or FMS.
This is an endless story.
Insurance companies and Lyme Deniers will use anything to make the case that there is nothing to treat.
You don't think so? Did you not see UOS?
Well let's see who is the first to be told they don't have Lyme but XMRV, the virus that causes CFS, which, BTW is not curable.
If they sampled people with CFS, found XMRV, and never considered lyme, then it's as accurate as the one posted a few weeks ago "proving" that lyme is a psych disorder.
Posts: 872 | From New York City | Registered: Jun 2008
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posted
XMRVnet.org Posts: 872 | From New York City | Registered: Jun 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
We are both on the same page it seems, and I am also having communication problems due to worsened neuro symptoms lately after moving to a new state.
I also became much sicker after I got Mono, though I had Lyme symptoms before, they became worse. My EBV titers were extremely high when I was diagnosed with Lyme and differentially tested for viruses and other infections (if I recall correctly, titer was in the 3600 range). So I understand firsthand that perspective here.
I was just noticing some people were assuming the article was about EBV, possibly from the semi-tangential discussions. So I wanted to clarify things for those not able to read the whole article/thread (I used to have to skip over a lot myself).
Now I have probably done the same talking about h. pylori ad nauseum (sorry! hehe).
I am still super curious what bands h. pylori cross-reacts on - I have never heard that. Do you happen to know offhand?
Join Date: Aug 2009 Posts: 55 XMRV Testing-FYI TESTING
VIP lab in Reno, NV has several test kits for, or related to, this virus. One is a PCR test for the XMRV virus itself. Another test kit recommend by Dr. Paul Cheney is the NKCP & LYEA test. Your local doctor can call the lab for information and can order the test kit(s) sent to directly to you. You can also call for pricing, which has been embargoed until the release of the paper. VIP Lab: 775-351-1890 answered 11am-7pm (CST) M-F.
I called VIP Labs. Pricing for the test will be determined next week. I ordered a test kit. It takes about two weeks to get test results.
posted
I for one totally believe I was MIS diagnosed with Lyme. I had a "flu" and was never the same afterwards. I went with the CFS diagnosis for two years and then looked for another opinion.
I was then tested with WB and only had 41(3 different times) positive. Doctor at first said he wouldn't treat me but then decided to. I was on abx for almost 3 years with no results. I even went to NY where I was treated with IV and IM and still no recovery. They wanted to keep treating and I finally said enough.
I am sure my illness was viral related. I still suffer (5 years) now with unrelenting chronic fatigue/exhaustion and left leg pain. The abx never relieved these symptoms.
So I am no longer seeing the doc who started me on abx or the famous NY doctor who went along with the treatment. I am happy that I am no longer putting massive amounts of abx into my body. I may not be well but I don't believe I would have become well either.
For me it was the correct decision to stop the maddness because I knew it was leading me no place. I wanted to believe I had Lyme so I could have some kind of treatment and hopefully get well. I actually questioned the diagnosis alot because I wasn't responding and I didn't feel as though I related to people who actually have Lyme.
I for one hope to be tested for this new virus. Maybe I have it and maybe I don't but I for sure never had Lyme.
Posts: 343 | From North Carolina | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Yours is the kind of story that scares me Kim812. I'm sorry you went through all that. I always wonder if these LLMDs know when enough is enough. There borders a point on medical irresponsibility after a long time. By that point, the patient wiped out their finances, is emotionally drained, and has no resources left for future endeavors.
This 'clinical diagnosis' mentality certainly seems to have merit, but also leaves room for much abuse.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The thing to remember about your story kim is that lyme is a chronic disease. That means incurable. So, the fact that you did not get cured from treatment does not prove you didn't have it.
I am absolutely sure I had a serving of tickborne diseases from a bite in 96. Although the babesia left after months of treatment, I am still sick from lyme and other unknown bugs. Several critters have been found in my blood. Not identified yet, and the question is whether they are opportunistic, reactivated latent germs, or acquired from the tick.
There are a lot of unknowns here and anyone who is sure about anything is probably overlooking factors. As in I didn't have lyme, I had a retrovirus instead.
And on the question of treatment: anti-virals are not used against AIDS which is also a retrovirus. So, this new retrovirus would presumably also need anti-RETROVIRALS instead.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by kim812: I was then tested with WB and only had 41(3 different times) positive. Doctor at first said he wouldn't treat me but then decided to. I was on abx for almost 3 years with no results. I even went to NY where I was treated with IV and IM and still no recovery. They wanted to keep treating and I finally said enough.
So you never had anything but 41 band? I would think its not lyme too. ON the other hand were you ever tested for CPN and other chronic bacterial infections ? Albeit if you been on combo ABX for 3 years it probably doesnt matter -if its bacterial it should been killed already (or its so persistent now that abx wont kill it anyways)
quote: I am sure my illness was viral related. I still suffer (5 years) now with unrelenting chronic fatigue/exhaustion and left leg pain. The abx never relieved these symptoms.
Have you ever tested for them? Did you try antiviral treatments?
quote: I for one hope to be tested for this new virus. Maybe I have it and maybe I don't but I for sure never had Lyme.
I wouldnt rely on single test for single virus. For once it is not available to public seems and it will make take decades before that. And it might be another virus. And even if you are positive treatment would be the same (anti virals)
I would personally try therapeutic trial of antivirals
Posts: 856 | From MA | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Allicin is looking very good right about now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote: Same with the dying honey bees with CCD and the dying bats with White Nose Fungus.
Well there are many other environmental reasons other than EMF. There is no research about EMF doing much harm (aside from localized high power sources such as power grid electric lines, radars etc) . I agree there should be more research done about EMF.
But realistically there is no point stressing about EMFs. - You cant avoid them.
And regarding chronic diseases there are many other factors (such as identified pathogens) which you can do something about , so its irrational to waste your time chasing EMF ghosts
Posts: 856 | From MA | Registered: Jul 2009
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posted
Mono here, too. Never was the same aftewards.
I think XMRV breaks down the immune system so that opportunistic bacteria and viruses get into the cells and replicate. Of course much more complicated that that.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
ChuckG-Thanks for posting the info about testing...Please update us if you decide to proceed with it yourself....
Kim812-I appreciate your comments on this thread...Unfortuantely, I think a number of people are in your same situation...
As for treating with antivirals in general, I would just like to caution against doing that without a positive test for such a virus. I remember speaking with one of the heads of the HHV-6 Foundation and she said you can do harm to yourself by treating with some of these antivirals WITHOUT a positive test for the virus.
On a hunch, my LLMD treated me for HSV-1 with Acyclovir. I wound up with an erratic heartbeat from it....Luckily it's resolved itself...But I would hope that others would learn from my mistake...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Right massman I saw a commercial the other day about doanting money to provide these pills that they give to children overseas for parasites. A simple treatment not a long drawn out protocol.
You never hear of anything like that here but we are sending money over to do it in other countries?? Do they think because we are Americans we are immune to parasites?
If I went to my regular pcp and said I want to be treated for parasites, or candida or heavy metals they would look at me like I had two heads. They know that all the above mentioned exist and can cause heath proplems but they wouldn't dream of treating them.
I will be curious to see how this all pans out but I still believe that my most debilitaing symptom which is Chronic Fatigue is from the Lyme Bacterium.
-------------------- If you keep doing nothing...nothing changes!
If your tick feasted on a mouse with only Bb, you get Lyme which responds to antibiotics.
If it feasted on one with XMRV, you wind up with CFS.
And if it feasted on a mouse with both, you wind up with the chronic form of Lyme.
And maybe mosquitos or other bugs can transmit XMRV, so that you can get CFS without having a tick bite.
Posts: 7 | From NY | Registered: Mar 2009
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posted
I was tried on anti virals two separate times with valtrex and valcyte. I did not have any positive tests for any type of virus. I have been tested by Dr. H for everything you can imagine ($ 5,000) worth of blood testing.
I showed nothing. Yes, I only had band 41+++ on my IgG test (WB). Dr. H agreed that with the amount of abx I had been on that even if it was some other type of bacteria it should have been killed many times over. I have chronic yeast now and also had to have my gallbladder removed due to the Rocephin..yes I was taking Actigal the entire time. So I will continue searching and not rely on one test. I just hope everyone will think twice about their diagnosis and if you are not getting better then it might be time to re think. I never herxed, or had cycle of symptoms. Mine were the same day in and day out. But yet the doctors continued to give me massive amounts of medications and I continued to take them. I might never know what infected me but I will say that I am not worse off the abx.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
lou- I appreciate your comments and I understand Lyme is chronic. I guess what I am trying to say is when I walked into the doctors office that day I had two chronic symptoms which were chronic fatigue/exhaustion and calf pain. Now 30 months later and thousands of pills and IV's, IM's and herbals I still have those two same exact symptoms.They are just as debilitating today as they were when I became sick in 2004.
I don't think continuing on with massive doses of abx is going to change that. Even if they had become 10 percent better I would have kept on but they haven't. That is when I opened my eyes and said something isn't right here.
Even the doctor (Dr H )was at the point of sending me to a chinese herbalist or even out to a clinic in Arizona. I decided that day to quit treatment and look elsewhere.
I am just sorry about the massive amounts of money my insurance company paid out and the incredible amount of money we paid out of pocket for the doctor visits and consults.
I am sure lots of people have Lyme and can't get well but for me I don't believe that is the case and hopefully someday I will have my life back from whatever this is...
Posts: 343 | From North Carolina | Registered: Oct 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm with you, Kim... I don't think I had Lyme but there was nothing else my doctor could find as a cause of my symptoms.
Fortunately, I quit the abx before any long term damage set in. This retrovirus may be the cause of some of our ills but maybe not...? We are all different.
I, also, had CFS when I was in my 20's - they tested me for Epstein-Barr & it apparently wasn't the cause. This was back in the 1980's...
There may be alot more out there that they haven't discovered or made big media statements about. My "kind of cynical" feeling is that they may have a drug in the pipeline for this retrovirus. So, now they are saying in the media that it wasn't all in our heads...
Big comfort to me after all these years of suffering & having people say abusive things to me as to the cause of my illness.
Please keep in mind that this is a RETROVIRUS... It's different that a virus. Anti-virals probably won't touch this thing.
I do agree that it's the multiplicity of things that are making us ill. I don't think people should feel that since this has been discovered, that it invalidates a Lyme diagnosis. I believe there are false negatives & positives with Lyme & company.
In my book - all of these things are legitimate & need to be treated properly. The discovery of one does not discount the others. I didn't appreciate taking tons of abx for something I probably didn't have, though.
What the drug companies, the gov't, & the insurance companies do is sort of beside the point for me... I don't have insurance & I'm not fond of taking drugs.
Most of the doctors I've seen don't really know what is wrong with people or how to treat them & the tests are inaccurate.
Where does all of this lead us???
I guess I've stopped looking to them for guidance... We all just have to find a way to do the best we can.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
-
So what is the treatment for this XMRV?
Or is that still unknown?
(or was it somewhere above and I missed it?)
When I read something like this, the first thing I think is, "okay, so what do I take for it?" Might as well try whatever the determined remedy is. If there is none, I'll just google "XMRV" in 6-12 months to check up on it.
I'm sure I currently have or have had Lyme, but who knows what is really holding me back. That is what it boils down to. -
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Sparkle- we do all have to find our own way. I have lost alot of trust in doctors and I am thankful I finally was able to quit the abx on my own. When things don't add up then it is time to take another look.
I do believe there are alot of people very sick from Lyme and at one time I was convinced that I was too even though I had many doubts.
I am convinced though that whatever I had was a viral attack and not bacterial since the massive amounts of abx should have killed it at least that is what I was told.
I am not sure I will ever get well or what the heck attacked me that day but I can say that I have learned alot in the past 5 years and will continue forward with my search...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
About the 67% og CFS patietns with XMRV, they posted on their webpage that they refined the testing and found that they found the virus in 95%. Maybe someone can post the link.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus."
In most cases..... This is just another dead end in my opinion. There has to be a reason your immune system isn't controlling it. A chronic infection to start with like lyme,bart, mycoplasma or chlamydia. The article doesn't say if healthy controls were used along with cfs people. Isn't it possible just like ebv that many healthy people have this virus too. They aren't even sure if it causes it or is just along for the ride. My symptoms flare when I take antibiotics. I am sticking with a bacterial cause.
Posts: 433 | From new york | Registered: Dec 2004
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XMRV and other associated conditions including FM, MCS and Lyme October 9th, 2009 in XMRV
As for overlap conditions in Dr. Mikovits' cohort associated with CFS including FM and MCS and chronic Lyme and MS-like patients, I cannot speak to that. However, my clinic is filled with such overlap conditions. I suspect it will not matter very much. They are most likely infected with XMRV if they meet criteria for CFS with or without FM or MCS or chronic Lyme. Perhaps pure FM or pure MCS or pure Lyme will be different in degree of infection and maybe not. It will be very interesting to watch this data develop and expand to CFS-like conditions and the few pure FM and MCS cases that I have seen over the years. I have not really seen what I would call a pure Lyme case but many with CFS and a positive Igenex WB assay and antibiotic failure for chronic Lyme.
Posts: 27 | From my own little world | Registered: Oct 2008
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posted
they found that 3,7% of healthy people tested positive for XMRV, vs 95% of sick people.
Correction, 98% of sick people. http://www.oslersweb.com/blog.htm?post=638469 " XMRV has been in the human population--and we can assume, in the nation's blood supply--at least since 1984. Mikovits found XMRV in a sample of frozen blood that had been saved by Dan Peterson as long ago as 1984. The blood happened to have had been drawn from a patient who went on to die of mantle cell lymphoma, another disease XMRV is suspected of causing."
Because of that, there is concern about blood transfusions etc spreading the virus.
Here is an abstract about retrovirus and unintentional spreading: http://www.retrovirology.com/content/6/1/86 check out the two comments too. They actually mention XMRV in the article.
[ 10-11-2009, 11:26 AM: Message edited by: n.northernlights ]
Posts: 366 | From Europe | Registered: Nov 2008
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posted
The Whittemore-Peterson Institute which supplied the samples in which XMRV was detected is based in Nevada. The samples included large numbers from local cases of CFS.
The Lake Tahoe region of Nevada, site of the CFS outbreaks of 1984-1986, is remarkable as one of the few sites in the US known to be endemic for ticks carrying the relapsing fever borrelia.
Dr Mikovits' team have announced confidently that the XMRV virus is transmitted via blood and body fluids, but is not airborne. In other words, the virus is spread in much the same way as HIV.
However, unlike in HIV infection, the majority of CFS victims who acquired their disease in 1984-86 are unlikely to have got it through sexual contact, sharing of infected needles, or exposure to infected blood or body fluids. The clustering of the disease suggests an environmental cause.
The clustering of a Lyme-like illness in an area known since 1921 to be an endemic borreliosis focus seems too important to be pure coincidence. Whatever the significance of XMRV in CFS, I find it hard to believe it is the whole story.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Thanks for the info n.northernlights... I'll have to read it all when I have time. It's really unfortunate about all of this stuff.
I'm glad some of it is coming out. I'm sure it's just the tip of the iceberg...
8 legs bad- do you feel this new info about XMRV is connected to Lyme somehow? Do you have any evidence? Please post.
FYI - my mother had lymphoma & I eventually got CFS. Kind of bizarre... I think she got the lymphoma diagnosis in 1975 or so.
I was diagnosed with CFS around 1989 - I think. It's hard to say if they were connected somehow.
I was able to put my symptoms of CFS into remission after 3 years. I became ill again after 8 years with what was diagnosed as Fibromyalgia. 9 years later - they told me it was Lyme.
It seems many of these things can overlap. It's going to be difficult to weed all of these illnesses out & figure out what is really making people ill.
The other question is whether this is intentional... If I pull my observations back enough to see the world as a planet, I just wonder why so many stupid things are going on to make life miserable for people here.
I can't say that all of these things are purely accidental. There are too many coincidences. I just don't believe that the people of the world are so ignorant.
I don't know where to begin in finding a solution. I guess knowing about all of this is a start...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I'm one of the people who have M.E. and Lyme. Having my immune system be so trampled because of the M.E., has let the Lyme go from barely noticable to just about taking-over in the span of a year. I agree with sparkle that having one doesn't disqualify the other...
I mean, it kind of does as far as "CFS," because according to the CDC's definition of it, if you have any other condition that can explain chronic fatigue, then by the syndrome's diagnostic criteria, you cannot have CFS anymore. It's really stupid.
But M.E. is its own disease, caused by a viral infection, that has nothing to do with just disqualifiying other illness. So if someone can get M.E. and then get Lyme, I don't see why someone couldn't get Lyme and then be unfortunate enough to get the XMRV virus, which the research suggests could be a factor in developing Myalgic encephalomyelitis. Just my two cents.
Posts: 161 | From Southern United States | Registered: Sep 2009
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quote: However, unlike in HIV infection, the majority of CFS victims who acquired their disease in 1984-86 are unlikely to have got it through sexual contact, sharing of infected needles, or exposure to infected blood or body fluids. The clustering of the disease suggests an environmental cause.
Hmm if its not trough sexual contact then what?- seems leaves only mosquitoes/ticks.
I wonder though if details about this CFS study are available anywhere- I am interested whether there was high percentage of sexual partners having same disease (that could mean one got them from the environment and his partner contracted it from hin)
quote:
Whatever the significance of XMRV in CFS, I find it hard to believe it is the whole story.
IF they find xmrv in 98% of people with CFS that is very important. It means it is reliable marker at the very least . And then they could start investigating how xmrv can cause symptoms .
I wish they made the test available
Posts: 856 | From MA | Registered: Jul 2009
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posted
there is a link to a power point presentation at the bottom of http://www.wpinstitute.org/xmrv/index.html , and you see the virus budding from a cell. Kinda looks like the small unidentified objects in the Fry lab smears.... especially when you compare the size of the cell and the size of the virus in each of them.
cdc--here is a longish history about cdc and ME/CFS that should be interesting re. lyme too: http://www.oslersweb.com click on the link the_why___a_speech_in_london
"This became pattern at the agency--give the least experienced person you can find responsibility for the disease, someone easily cowed--then pull the strings from above. " they had 300 cases, but only examined ten of them. ..."Holmes suggested to journalists that two doctors in Nevada had simply worked themselves into a frenzy; for extra measure, he suggested they were seeking publicity...." ..."
"To derive both the criteria and the name, Holmes engaged in correspondence with about 16 doctors around the country, most of whom had either seen no patients with the disease Peterson and Cheney had described, or had seen a very few"...
..."a pattern that was to continue in the years ahead, when the CDC barred its doors to doctors who actually interacted with patients. Such doctors were, in agency speak, ``contaminated.'' In other words, if you, as a physician took this disease seriously, or saw patients, you could not be trusted or involved in any facet of CDC investigation of it because you were thought to be biased in favor of the disease existing. ..."
"With its latest definition, the agency has created a vast canvas upon which psychiatrists and psychiatrist-wannabes can endlessly doodle. We see these papers almost daily from psychiatric investigators all over the world, especially in the UK, Atlanta, the Netherlands and elsewhere--investigators who twist themselves into knots trying to pin the cause of what they're calling ``CFS'' or, alternatively, ``fatigue'' or ``unwellness'' on bad relationships, personality disorders, lousy childhoods, genetic pre-dispositions to stress overload, and so on ad nauseum.
Bottom line, the CDC isn't defining, they're not studying, any known disease. Their epidemiology is not worthy of the name; I doubt there is a single person at this agency who could identify a case.
Which leads me to the CDC's third area of harm: It's research.
For many years after the Tahoe investigation, a well-supervised Gary Holmes wrote letters to senators and congress people promising the world--patient registries, tissue sample banks, a physician reporting system, surveillance. And every spring the agency sent its leaders to Capitol Hill to testify to Congress about the rapid progress their researchers were making in the disease.
But the fact is, they were making no progress and doing no research. I call this the agency's ``Rorshach era'' because one of Gary Holmes' supervisors fondest desires was to administer Rorschach tests to CFS patients. Cooler heads at the agency persuaded him that these ink-block relics from the 1920s weren't considered valid evidence in court cases. "
" Occasionally the agency would direct energy into attacking research that seemed to powerfully legitimize this disease--because in keeping with their business model, they had to protect their brand, ``CFS,'' and promote their authority over the authority of non-agency scientists.
In 1992 for instance, when Anthony Komaroff published his watershed paper suggesting that what the agency had named CFS was actually an infectious disease of the central nervous system, William Reeves nearly lost his mind. What could be more embarrassing to the CDC than if the opinion makers in the medical community--the Brahmins--actually took this paper seriously? "
"To hell with scientific discourse--we need to annihilate the competition, the boys from Harvard, not to mention the clinicians named on this paper who had examined and studied, by then, thousands of patients.
Soon after, the CDC went on another search and destroy mission when Elaine DeFreitas, a microbiologist at the Wistar Institute in Philadelphia, reported she had found fragments of a novel retrovirus in patients and their close contacts, but not in controls. A third of her patient samples came from children.
DeFreitas published her data in the Proceedings of the National Academy of Science and presented at a major neurological conference in Japan with her collaborators Paul Cheney and David Bell.
Imagine how the CDC must have felt when DeFreitas's finding were reported in Newsweek. Talk about a game changer--talk about embarrassing! It was Tahoe all over again, they had to mobilize, they had to respond.
The agency tried to replicate DeFreitas' findings and failed. Nevermind that scientists in Atlanta refused to follow DeFreitas' exacting protocols, worked out over a period of four years; or that the blood samples the agency was using became contaminated with a mouse retrovirus during the experiments; or that the number two at the agency, the deputy director, shut the investigation down with a, ``That's it boys and girls,'' before the agency scientists involved believed they had had a chance to explore the finding fully. "
" Tellingly, the agency chose to publish its failure to replicate DeFreitas' retrovirus finding in not one, but three different medical journals. As they say, ``It's not enough to wound the lion, you must kill it.'' In addition, Brian Mahy, Bill Reeves' boss at the time, wrote DeFreitas' boss at the Wistar Institute and suggested she be fired; I have the letter. Again, a pattern in Atlanta: whoever challenges you, whoever threatens you with exposure, must be destroyed. Destroy the message and the messenger. "
well, XMRV is a mouse retrovirus.
[ 10-13-2009, 07:26 AM: Message edited by: n.northernlights ]
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