[ 10-08-2009, 05:15 PM: Message edited by: Bugg ]
Posted by Keebler (Member # 12673) on :
- Good article. Well thought out and gives respect to patients. Thanks, Bugg. -
Posted by Bugg (Member # 8095) on :
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.
[ 10-08-2009, 06:13 PM: Message edited by: Bugg ]
Posted by Keebler (Member # 12673) on :
- 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? -
Posted by Hoosiers51 (Member # 15759) on :
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.
Posted by Sparrow (Member # 11734) on :
I also wonder if using a leukemia frequency would work. This sounds so promising for patients who don't get well with just antibiotics.
Posted by Bugg (Member # 8095) on :
Keebler--
I made the edit...hope that helps...
Posted by Keebler (Member # 12673) on :
Bugg,
Merci Beaucoup.
Posted by massman (Member # 18116) on :
Wouldn't that be a great name ?
Bugg Merci Beaucoup !
Posted by JamesNYC (Member # 15793) on :
Uhhhh,
Uh-oh, maybe many of us have XMRV and NOT Lyme! .
From the Rueters article:
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
Posted by Sparrow (Member # 11734) on :
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.
Posted by seekhelp (Member # 15067) on :
Mono destroyed my life at age 21..same story.
Posted by Lymetoo (Member # 743) on :
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.
Posted by Keebler (Member # 12673) on :
- 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.
-
Posted by sutherngrl (Member # 16270) on :
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?
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by sutherngrl (Member # 16270) on :
Many LLMDs do not test for viruses, but maybe this latest discovery will get their attention.
Posted by Bugg (Member # 8095) on :
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.
Posted by btmb03 (Member # 18394) on :
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!
Posted by seekhelp (Member # 15067) on :
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?
Posted by Keebler (Member # 12673) on :
- Could you test positive with specific lyme bands and not have LD?
Probably not. -
Posted by massman (Member # 18116) on :
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.
Posted by Lymeorsomething (Member # 16359) on :
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.
Posted by coltman (Member # 21272) on :
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?
Posted by Sparrow (Member # 11734) on :
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.
Posted by Lymeorsomething (Member # 16359) on :
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.
Posted by springshowers (Member # 19863) on :
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.
Posted by bettyg (Member # 6147) on :
i was 20 when my 1st dx was MONO! this was the beginning of my lyme disease!!
Posted by bettyg (Member # 6147) on :
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
Posted by ukcarry (Member # 18147) on :
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.
Posted by nenet (Member # 13174) on :
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):
It is a newly-discovered human retrovirus (HIV is another retrovirus), and there are no clinical tests for it as yet, most likely won't be for years.
The treatment being theorized for CFS, if they find a causal link between infection with this virus and CFS, is AIDS and cancer drugs.
Posted by cantgiveupyet (Member # 8165) on :
So there is no test available for XMRV? Would Valtrex work on this virus?
Posted by Bugg (Member # 8095) on :
The article I posted from the Cleveland Clinic (see above) answers some of your questions about testing.....Scroll down towards the end of it...
Posted by nenet (Member # 13174) on :
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.'
Posted by nenet (Member # 13174) on :
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.
Posted by nenet (Member # 13174) on :
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.
Posted by Lymeorsomething (Member # 16359) on :
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.
Sorry for the initial misinformation. Still it's intriguing to think that other unforeseen cross-reactions may be occurring right under our noses.
Posted by JamesNYC (Member # 15793) on :
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!
Posted by JamesNYC (Member # 15793) on :
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
Posted by coltman (Member # 21272) on :
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.
Posted by nenet (Member # 13174) on :
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.
Cool discussion, thanks.
Posted by Robin123 (Member # 9197) on :
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.
Posted by nenet (Member # 13174) on :
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.
Posted by Amanda (Member # 14107) on :
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.
Posted by nenet (Member # 13174) on :
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.
Posted by Lymeorsomething (Member # 16359) on :
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.
Posted by JamesNYC (Member # 15793) on :
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.
Posted by JamesNYC (Member # 15793) on :
XMRVnet.org Posted by nenet (Member # 13174) on :
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?
Posted by ChuckG (Member # 19093) on :
quote:Today, 06:27 PM Terri Member
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.
So much for years until there is a test.
Posted by kim812 (Member # 17644) on :
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.
Posted by seekhelp (Member # 15067) on :
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.
Posted by lou (Member # 81) on :
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.
Posted by coltman (Member # 21272) on :
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
Posted by Keebler (Member # 12673) on :
- Allicin is looking very good right about now. -
Posted by coltman (Member # 21272) on :
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
Posted by sunnymalibu (Member # 9586) on :
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.
Posted by Bugg (Member # 8095) on :
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...
Posted by lakes592 (Member # 18905) on :
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.
Posted by Teapot (Member # 19369) on :
This is pure speculation:
Mice can harbor Bb and/or XMRV.
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.
Posted by kim812 (Member # 17644) on :
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.
Posted by kim812 (Member # 17644) on :
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...
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Hoosiers51 (Member # 15759) on :
-
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. -
Posted by kim812 (Member # 17644) on :
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...
Posted by n.northernlights (Member # 17934) on :
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.
Posted by cleo (Member # 6646) on :
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.
Posted by lassie (Member # 17813) on :
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.
Posted by n.northernlights (Member # 17934) on :
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 ]
Posted by Eight Legs Bad (Member # 13680) on :
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
Posted by n.northernlights (Member # 17934) on :
Have you read this one on how the cdc handled the outbreak of ME/CFS back then? http://www.oslersweb.com/newsletter.htm Posted by sparkle7 (Member # 10397) on :
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...
Posted by Elizabeth S. (Member # 22405) on :
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.
Posted by coltman (Member # 21272) on :
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
Posted by n.northernlights (Member # 17934) on :
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 ]
Posted by seekhelp (Member # 15067) on :
Blaze, I have to ask one thing. I'm not agaist or for the EMF issue as I don't know enough. It must have some validity if researchers like Dr. K have concerns about EMF.
What I don't understand at times is you have 234 posts on this board and I'm betting all 234 are EMF related. Don't have you other concerns, advice, positions on TBIs you could share with us all. If you've researched EMFs so avidly, I imagine you're as thorough with other possible causes of these illnesses.
Why are you so laser focused on this one topic? I've always wondered. I never see any posts just stating how you're feeling, symptoms you're experiencing, treatment you've tried, and other things.
Posted by lou (Member # 81) on :
northern lights has posted a description of govt malfeasance in CFS that could just as easily be used for lyme, just change a few names. Apparently this is a well known response to new diseases. I bet they have the plan in a file, like some cities have storm response plans.
Posted by coltman (Member # 21272) on :
quote: And it seems only a handful of people here on Lymenet have been cured of Lyme. Most of us suffer on, even with multiple antibiotics.
There are many reasons they might not be cured
quote: Do I often trail off into the EMF topic? Yes. Because the spirochete that causes Lyme isn't the devious, ruthless demon we've made it out to be.
Umm It is what it is. If you search on pubmed for borrellia you can read for a while about its multiple forms ,biofilm formation and abx resistance. All based on actual research
quote: It only crossed our blood-brain barriers when we happened to have our heads in the path of some radiation source at the wrong time.
Any studies proving that? No? -then it is just speculations. Does not mean it could not be true, but I dont think its productive to investigate every single speculation out there, especially one you cannot realistically address (seriously what you suggest to do about emf? live in the desert?)
Posted by Elizabeth S. (Member # 22405) on :
quote:Originally posted by n.northernlights: 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.
Wow, wonderful explanation there, northernlights! I know this is a Lyme forum but that's a very good description of the whole "CFS" thing.
Posted by n.northernlights (Member # 17934) on :
I wonder how many here have that gammaretrovirus, as they would need antiretrovirus medicines in addition to antibiotics. There are tests coming. That would explain why many struggle for such a long time with lyme.
I wonder if the cdc has been sitting on the "mouse retrovirus contamination" all the time, refusing to research it.
Posted by n.northernlights (Member # 17934) on :
"Friday, October 9, 2009 Testing for XMRV I'm hesitant to post this until I can verify it but here's some info about how to get tested for XMRV.
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 plan on calling the VIP lab for pricing....
Okay, I called VIP Lab in Reno. They do have test kits for the XMRV virus but they won't have a price on it until next week.
If you want to be tested call the lab at the above number and they will ship out a kit to you. Your doctor has to sign off, then take it to a local lab to get the test done and then it gets shipped overnight back to VIP Labs. It takes about two weeks to get the results. The woman I spoke to was very nice. They are swamped with calls but expected it. "
Posted by seekhelp (Member # 15067) on :
That lab is going to make some serious money.
Posted by peter j (Member # 11825) on :
I think their findings are right, and I think that this virus they have found (which is supposed to be in many ways similar to HIV) is an enabler for Lyme.
When someone gets chronic Lyme they are extremely lucky if they come over a educated doctor by chance. Most people (who have got help) have seen some ten or twenty doctors (or even more) before they get help.
So very, very many of those end up with a syndrome diagnosis before they come across one with knowledge of Lyme.
So the majority of those who have chronic Lyme are either undiagnosed, or with one of the IDSA-docs which label them with some syndrome which fits their symptoms.
If anyone here knows how to get tested for this virus, then please PM me.
I think this is a great day for us with Lyme, and this might be one (of many) explanations as to why people don't have a visible immune response to Lyme.
Remember, Lyme doesn't get chronic until it has got a year or so.
If it's HIV-like, then it might damage the immune system.
Posted by Hoosiers51 (Member # 15759) on :
Has anyone tried treating XMRV?
Until they treat it, they can't prove whether or not it causes CFS. Right?
Correlation (between two variables, like CFS and XMRV) does not equal causation. You learn that in college statistics classes, but other people pick it up via common sense.
Just because 98% of people with CFS test positive for XMRV, does not mean XMRV causes CFS....the two could simply be correlated.
Just like the studies that are suggesting people with positive Western Blots and ELISA's really have Cytomegalo virus and EBV instead. Are the viruses *causative* of the positive WB's, or visa versa?
In other words, it could just be that people with Lyme test positive for a lot of viruses. I haven't read those EBV studies, so I don't know if they actually prove causation (which would be telling) or simply correlation (which means it's a chicken vs. egg scenario) with positive Lyme bloodwork.
[In case this is confusing anyone, these last two paragraphs are off the XMRV topic, but I think it was in this XMRV thread that Timaca brought up those studies, so it is kind of relevant]
Anyways.....before I'd pay for an XMRV test, I would want to know that 1) there is a treatment, and more importantly, 2) that XMRV is not simply correlated with Lyme, as I suspect many viruses are.
Which would mean treating it might not make anyone with Lyme feel better.
I don't want to marginalize this discovery....because it is interesting, but I don't know how many conclusions we can draw, or whether this is just opportunistic, like HHV-6, like Fry's gram-negative hemobart, etc.
Posted by peter j (Member # 11825) on :
HIV makes the CD4 count go very low. Normally after years-
XMRV is a HIV-like virus.
Could it be that XMRV is an enabler? Could it be that XMRV makes the CD57 count go very low?
Posted by lightparfait (Member # 22022) on :
Is there a chance that the Tetanus shot contains this virus? I test strongly energetically for acquiring this virus three times in tetanus shots.
Would be interesting to see if other new tests for this show I have it as well.
Posted by lassie (Member # 17813) on :
I received a Lyme dx only recently. For the prior 18 years, my diagnosis was CFS and I met all the criteria for ME (Myalgic Encephalomyelitis).
I had tons of testing that showed reactivated viruses, abnormal RnaseL, and other biomarkers that people in the Incline Village outbreak had. In addition, I had an abnormal qEEG, tilt test, bike exercise test, and neurocognitive test, all considered markers for ME according to Dr. Hyde's definition of the disease.
I always relate best to people who have the type of CFS found in Incline Village in the mid-1980s. My symptoms match ME much more than they do Lyme.
I was tested for Lyme within a month or two of getting sick, and, despite negative test results, received ten days of abx treatment.
I was tested several more times for Lyme over the years, including at Stonybrook. It was only through IGeneX that I had some positive bands.
I am not responding tremendously well to abx. Frankly, I had a stronger response to one of the early antivirals.
So I think it is entirely possible that Lyme is the opportunistic infection, and that a retrovirus like HMRV is the cause of a suppressed immune system.
I care less about the label given my illness than I do about getting well, frankly. If HMRV turns out to be a causative factor and treatment is made available, then YAY!
Posted by Hoosiers51 (Member # 15759) on :
lightparfait,
You are testing for getting XMRV from a tetanus shot?
How are you doing energetic testing for XMRV specifically?
I got very ill after my recent DPT (diptheria pertussis tetanus) vaccine. It caused a horrendous relapse.
And why would that vaccine contain XMRV anyways? Maybe the animal/human cell lines used to create the vaccine were infected with the virus?
Posted by n.northernlights (Member # 17934) on :
just google xmrv and contamination. Like http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2519784 It says "Murine Leukemia Virus (MLV) is a rodent gammaretrovirus that serves as the backbone for common gene delivery tools designed for experimental and therapeutic applications"
Posted by Eight Legs Bad (Member # 13680) on :
Sparkle, I don't have evidence thst XMRV is connected to Lyme, but there is evidence that the disease labelled ME/CFS is caused by Lyme in many cases. Therefore if this present study which found XMRV in CFS patients is confirmed and verified by future unbiased studies, then that may mean there is a correlation between this retrovirus and Lyme.
However as someone here pointed out: correlation does not necessarily mean causation.
Northern Lights has posted a reference to the use of mouse retroviruses as a vector in genetic engineering. I think that that is a very important issue to take into account when we think about all this.
A typical experiment would involve genetic manipulation of the mouse retrovirus, knocking out gene sequences involved in replicating it, and adding instead a foreign gene, which the experimenters hope to implant into a cell of a living creature, such as a human.
The aim is to harness the retrovirus' trademark ability to make DNA copies of its own genes and insert its "impostor" DNA into the host's chromosomes.
This recombinant work was thought to be safe, because, as pioneers of the retrovirus technique reasoned, since they had removed the genes that would allow the virus to "come back to life" as it were, and replicate in the host, there could be no danger.
They were wrong.
Many living things have in them, as a natural part of their genetic make-up, "endogenous retroviruses",which are believed to be relics of ancient infective agents which eventually lost their pathogenicity, and came to be incorporated into the organism they had invaded.
Human beings are no exception - hundreds of different endogenous retroviruses have been found in the human genome.
The mouse retrovirus experiments sometimes went wrong because genes from endogenous retroviruses "filled in the gaps" and replaced the viral genes which had been removed for safety reasons. The monster is brought back to life.
So mouse retroviruses became a less popular choice amongst genetic engineers.
I think it's worth being aware of all these issues when we try to work out the significance of XMRV.
Elena
quote:Originally posted by sparkle7: ...
8 legs bad- do you feel this new info about XMRV is connected to Lyme somehow? Do you have any evidence? Please post.
..
Posted by Hoosiers51 (Member # 15759) on :
What are, "gene delivery tools designed for experimental and therapeutic applications?" (from northernlights and the link).
I am confused as to what we are even talking about. Like what are the "applications?" Are we talking about the making of vaccines against other pathogens (not XMRV)? Or are we talking about scientists playing around (genetically) with XMRV specifically in a lab?
I was the one that brought up the "correlation does not equal causation" thing, but what we are talking about now is either over my head, or I'm just confused.
Posted by emla999/Lyme (Member # 12606) on :
In the article bellow Dr. Mikovits said that XMRV can lie dormant in people, until it is "turned on or off" by other factors. She gives vaccination as an example of something that could possibly "turn on" XMRV.
"According to Dr. Mikovits, XMRV (which admittedly sounds like a satellite radio system for your Winnebago) can lie dormant in people, until it is "turned on or off" by other factors, such as stress hormones like cortisol, or in response to the presence of inflammatory "cytokines," protein molecules secreted by immune cells to help regulate the immune system.
And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.
"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells.
So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus.
So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."
Posted by coltman (Member # 21272) on :
Hey thanks for great link! I do not have much time right now to go find original papers (too busyr researching other stuff) , I trust they exist, glancing over abstracts it does look convincing though regarding EMF effects on BBB.
I agree with you that it is indeed subject that should be researched.
What to do about EMF is hard question though. I have a 2.4 Ghz wireless router sitting right there in front of me . Do I have to throw it away? What about the guy downstairs who has same thing? I can pick up around 4 WLANs right from my bed, and of course cell phones work too
Computer on my desk has 4 GHZ CPU, 1 Ghz front bus and 100mhz PCI bus, do they emit it too ? I relatively rarely use cellphone but it is the only phone I use.
At my job I am surround by computers and in server room there are hundreds of them.
So all in all - more research about EMF needs to be done. Given all other factors I just dont see any practical approaches to manage EMF
Posted by Lymetoo (Member # 743) on :
Blaze, you got thrown off this site once before for this kind of stuff.
Posted by n.northernlights (Member # 17934) on :
The speculation is, the MLV mouse virus gene things they use can trigger/activate the other viruses, other retroviruses, or this one if it is lying dormant. Or even that some vaccinations have been accidentally polluted.
maybe it is just dormant XMRV activated by HHV-6, the common human herpesvirus responsible for the childhood diseases roseola. Or by any vaccination.
http://en.wikipedia.org/wiki/Herpesvirus in a table" ....Zoonotic infection found in 4.5% of general population and more common in laboratory workers handling infected mice"
I read about retrovirus in ALS patients that they found more retrovirus activity in relatives of ALS patients than spouses, so the speculation is that is was inherited and triggered somehow. (and they are quite sure ALS is retrovirus-mediated)xmrv has been ruled out in ALS patients (but they only tested a small number for xmrv)
Posted by sparkle7 (Member # 10397) on :
Blaze - it's a thread about XMRV. Do you think there is a link between the retrovirus & EMFs? Who knows...? There could be. That's a long speculative discussion, though.
I think most people would agree that EMFs can be harmful. Extra shielding should be a safety concern for sure. It's just how do we get the Genie back into the bottle now?
It's kind of hard to live in a Faraday Cage.
8 Legs Bad - All of this gets so complicated. I wish there was a way to learn about all of this in laymen's terms.
I just have to do more reading, I suppose. There are other things I would like to be doing but now I have to spend time studying this...
I've read that there are peculiarities in the BB genome. This was actually the first bacteria that the Ventner Institute analyzed when they started decoding DNA - if I recall correctly.
I hope I'm using the correct language & accurate facts but I did do some reading on this a while back. Out of all the bacteria, etc. they chose BB to decode it's DNA first...
As for "I don't have evidence thst XMRV is connected to Lyme, but there is evidence that the disease labelled ME/CFS is caused by Lyme in many cases."
Many illness seem to overlap in symptoms. When my mother first got lymphoma - they thought she had cat scratch fever... I'm sure there are infinite examples.
Fatigue & pain are pretty basic to many illnesses.
There are so many tests for these pathogens that we are all dealing with. How do we know if any of them are accurate? If they are accurate - what do we treat these things with?
People seem to be having a very hard time with Lyme & the co-infections as it is regarding accuracy in testing & treatments.
If there are many viruses & many bacteria - the combinations could be endless. Then, you add environmental toxins, molds, funguses, yeasts, heavy metals, stress, EMFs, genetics, parasites, etc... It starts to become a very complicated picture.
Who knows what other weird pathogens are out there making people sick - either man made or natural... My feeling is that they are not natural but I'm not a scientist.
It's another situation where the Genie is out of the bottle. Once they started splicing genes to create bio-weapons it was all over... It's like a horror/sci-fi movie to consider the implications of nano sized chimeras & what that means for people on Earth.
OK - I'm just a crazy, conspiracy theory nut... Everything is fine. Go back to watching TV now.
Posted by Robin123 (Member # 9197) on :
This is all so very interesting. I used to live with and be surrounded by people with CFDs. And most were from Connecticut, too.
It was obvious to me that everyone was sick but we had no clue then as to what it was.
Without knowing more yet, it makes sense that the mice donated the retrovirus to the ticks that bit these folks, or that it was genetically engineered and let loose.
Peter J - you asked an interesting question about the CD57 possibly being attacked by the CFDs retrovirus.
My CD57 count is fairly up there - in the 140s, and I do not have the profound chronic fatigue.
So this is an interesting CD57 question - now wondering how many who have low CD57 counts also have profound fatigue.
And if there are more folks like me with high counts who are not overly fatigued.
Posted by peter j (Member # 11825) on :
n.northernlights thank you very much for the ALS referance.
ROBIN123 (and others), please be "the devils advocate" here.
This is how I see it (still a hypothesis):
*) Dormant Lyme disease is very, very common.
**) XMRV is a newly discovered virus. The process of going from dormant to active can take about a year (with HIV it takes years, not a year, see example below). Most often XMRV is triggered (going from dormant to active) by other things, sometimes it's not.
***) Anything which challenges the immune system (a vaccine, HHV6, giving birth, mononucleosis, severe stress etc.) can trigger XMRV, and thereby make the Lyme disease active.
When the XMRV is active the CD57 count goes very low.
The CD57 goes additionally down because of Lyme, which then is to be seen as a 'synergistic' infection with XMRV. When they are together, and active, XMRV gets much more 'room' to do damage.
****) The least common way to get Lyme is that the infection goes from stage 1, to 2 to 3 immediatly after tick bite.
The only reason why this is perceived as the most common way is because it's very rare that those who don't get it that way find out (most often by doing a good job themselves) that they have Lyme.
*****) Back to point one, dormant Lyme disease is very, very common. And being dormant, the immune system holds the infection in control.
It's when the Borrelia gets the 'upper hand' on the immune system that the infection becomes active.
But the infection can break out without the presence of XMRV. When someone goes stage 1,2,3 directly after a bite, it MIGHT be that the bacteria load is pretty high with that person soon after the bite, and Lyme gets room to grow.
And other strong infections might do the same as XMRV (mentioned in point three), but most often it is with XMRV in the picture.
******) Lyme (with its hoards of sub-strains (the level under garinii, s.s., afzelii etc) and undiscovered strains) is what causes the majority of the symptoms. XMRV is an enabler.
*******) If XMRV is a HIV like virus, it might also be one (of several) reasons why the immune response is NOT visible with antibody-tests when someone has been sick for years.
It's pretty well proven that the ELISA has a sensitivity of above 90% a month or so after erythema migrains. It's absolutely not sure that those who don't get the rash gets an equally strong antibody response. But what is ABSOLUTELY sure is that the IDSA does not have any evidence for the sensitivity of the ELISA when someone has had an untreated Lyme disease for years.
Posted by Lymetoo (Member # 743) on :
blaze.. I didn't say you were rude. I'm sorry if you felt I was being rude. I was just warning you about your posts since that is what happened before.
Posted by n.northernlights (Member # 17934) on :
Dr. De Freitas' commitment to studying and researching a cause for CFS, in the midst of such a political morass as CFS, was astounding.
I will never forget reading "Osler's Web." Before I found out I had Lyme, I was researching all I could about CFS, because at the time, that (and Fibromyalgia) was the closest thing I knew of that could explain my illness. I kept looking though, thankfully.
CFS is a very good area to study in order to observe that Lyme is not an entity unto itself when it comes to government and corporate industry neglect of patients' needs, intentional and unintentional obfuscation of a real illness, and corporate and government malfeasance.
"Osler's Web" is an amazing book, and I recommend it to every Lyme patient, because there are very valuable lessons in there for all Lyme patients, or for anyone with a serious and/or chronic illness.
Politics, and bad application of science, abound throughout medicine and healthcare, even cancer has its controversies in its science and treatment.
Posted by kim812 (Member # 17644) on :
I have profound chronic fatigue and physical exhaustion constantly. It basically never goes away but I have it at different levels everyday.
Anyway, my CD-57 was a 21 then a 36 up to 60 then down to 45 when I quit treatment. I never felt good no matter what level it was at.
So it will be interesting to see if chronic fatigue and the CD-57 are somehow related...
Posted by Lymetoo (Member # 743) on :
kim.. were you tested and treated for babesia?
Posted by sparkle7 (Member # 10397) on :
The thing I don't understand is that they say HIV is slower than XMRC... Back in the 1980's in NYC - many people died of what was known as AIDS.
If it is slower than XMRV, why did it seem to effect people so quickly? How come I'm still alive with this (if it's what I have)?
If this is really what's been wrong with me, I've probably been ill with it since 1989 or so. I don't remember being bitten by a tick, ever... I never had a EM rash.
I do remember having very disabling flus on 2 occasions where I felt really awful. Both times afterwards - I became ill with CFS or Fibromyalgia.
I was able to get over the CFS when I was in my 20's after about 3 years. The second time when I became ill at 36, I was not able to kick it. I thought I had Fibro until I got a clinical Lyme diagnosis after being ill for 9 years.
I don't remember having any kind of contact with anyone who were ill with these sorts of symptoms. So, how did the people with XMRV acquire it?
All of these things are vague (or they have been for me). I had tons of bloodwork & nothing obvious has shown itself to be the cause.
It seems to me that this is really a complicated issue. I don't know if we will ever get to the bottom of it all. I don't think we are being given the whole story.
There alot of disinformation & outright obsuration, misuse of funds, telling people they are hypochondriacs, etc. Seems that some famous people with diseases like AIDS or CFS are able to be somewhat healthy (like Magic Johnson or Cher). What do they know that the rest of us don't?
Is it just a coincidence?
Posted by lightparfait (Member # 22022) on :
Cher sees Dr. J. in Germany...who uses a special detox along with immunization therapy. I have heard this MD speak in my area. An amazing presentation. She is back in NY next month and wonder what her take on the XMRV is.
Farrah Faucett was also a patient of hers, and was too far along to help by the time she went for the German treatment.
Germany is currently doing more therapies with DNA and detox from inherited toxins, environmental toxins and acquired toxins. Saw pictures of patients with large tumors, the size of melons, shrink over time with the therapy. and now cancer free patients.
She says Americans are the worst off of any she treats across the world. We have so many disregulations, and our environment and lifestyle. She sees different things in people of different nationalities, and ways to treat cancer for them. Specifically Asian, African and European have different genetic predispositions. Americans are a mix of so many things, that each are individual, but require more work.
I found it very interesting. She said a cookie cutter approach cannot work with cancer. It has to be individualized medicine. And chemo never works, she claims. In tumors that have to be removed, she always finds borriella, and loads of viruses, bacteria and metals. She believes the main reason for cancer is bacterial.viral/ and toxins, like heavy metals/fungi/molds and parasites, added to preexisting genetic conditions. It's individual.
Posted by Myco (Member # 9536) on :
P.S - XMRV = HIV = $$$ for big pharma. A life of expensive antivirals with no real cure. Please people. There is no interest in solving this puzzle, only selling more drugs.
Elaine Defrietas found a retrovirus AGES AGO and they did not pay attention. Didn't want to call it a "Heterosexual" version of AIDS at the time.
There are patients here that are bitten by ticks, there are patients that have become ill with airborne pathogens, etc...
This is no smoking gun and if they find/found it, we will never know.
Posted by Rivendell (Member # 19922) on :
I guess that the most rational way to look at this is that a combination of viruses, bacteria, fungi, and parasites, plus genetic tendencies, environment, and stress all work together to make us sick and suppress our immune system. There may be one infectious agent that gets it started, but then the rest come along and we become disabled.
And I guess the best way to manage it and even maybe get well, is take vitamins, herbs, etc. that treat all these different infections, keep our bodies healthy by eating healthy food, including some raw or even vege juices. Work to stay as peaceful as possible. Find ways to sleep well. You know, do everything possible to cover all the bases. And if medication truly helps then do that too.
Posted by Robin123 (Member # 9197) on :
Sparkle, maybe AIDS is more virulent.
And you don't necessarily get to see the tiny tick that bites you.
I had a known tick bite with no rash and no symptoms at all for ten weeks.
As of now, people are conjecturing that if the tick bit a mouse, then the mouse transmitted the murine virus to the tick. All conjecture, but interesting.
Lightparfait - I am successfully shrinking lipomas with noni juice and grapeseed extract capsules.
As treatment goes, it's painless and the results are clear - take these anti-inflammatory antioxidants and the lipomas shrink. Don't do them and the tumors expand. Clear as day. An endocrinologist in San Diego is working on this.
Posted by Myco (Member # 9536) on :
Here's Hilary Johnson's thoughts on the XMRV discovery:
"XMRV is a gammaretrovirus, as opposed to HIV, which is a lentiretrovirus, from the Latin for "slow."
Lentiretroviruses may take years to cause symptoms after infection. Not so gammaretrovirues. They've long been known to cause neurological disease, cancer and immune deficiency in animals.
Until 2006, scientific dogma held that gammaretroviruses infected only amimals. "
Seemed alot of people died fairly quickly who were diagnosed with AIDS back in the 1980's - I'm not even sure if HIV = AIDS... I believe there is controversy about this.
Meanwhile, if I was infected with this XMRV back in 1989 or so - why am I still alive?
---
I looked up this Dr. J who treated Farrah Fawcett. Not much on CFS, mostly cancer treatments. I don't know if I would say that Americans are worse off due to the issues you stated, Lightparfait.
I don't know if I could agree with this if it's her stance on illness. Nothing personal towards you for mentioning it.
I mean, take a look at Africa... AIDS & malaria are rampant. India is pretty bad from what I hear regarding environmental poisoning & toxins - not to mention parasites for many countries, lack of clean water & sanitation, starvation, war, crime, rape, child soldiers, women treated as second class citizens, etc...
Life may be stressful here but it's not a war zone like in the Middle East or the Congo...
I can see that there may be issues regarding what your genetics are & that we need individualistic treatments but to put it the way you mentioned is a bit xenophobic. You probably don't mean it that way but it just sounded a little odd to me.
I'd like to know what kind of success rates Dr J gets with her approach.
---
Getting back to XMRV, I can see Rivendell's approach as being the right way to go for now.
Thanks for all of the info! I knew you guys would be on top of this news.
Posted by coltman (Member # 21272) on :
quote: Seemed alot of people died fairly quickly who were diagnosed with AIDS back in the 1980's - I'm not even sure if HIV = AIDS... I believe there is controversy about this.
Meanwhile, if I was infected with this XMRV back in 1989 or so - why am I still alive?
well not people with AIDS die either. It the same thing - combination of your genetics ,environmental factors and individual diseases and pathogens which will affect overall how well you do.
I am not bedridden either, and some people apparently are so bad they cant walk for long time
I keep thinking about the statement that future of medicine is in modulating immune system. We still unfortunately not anywhere at that point, topic is poorly researched and poorly funded (on paper it funded well but the topics researched are mostly dead ends and aimed at making new symptoms controlling drugs instead of finding a cure)
Posted by kim812 (Member # 17644) on :
Lymetoo- Yes I was treated for Babs with Malarone for 14 months...
Posted by lightparfait (Member # 22022) on :
Sparkle, I'm not saying Americans are worse off..these are Dr J's findings from her own tests that the Americans she treated and treats have more built up toxins, and mostly from environmental or food related things than others across the world she treats.
Here is a link to someone who posted notes from a few of her talks...I was at a different one, but it gives you an idea of what she is about.
I forget exactly what the Japanese and others were said to have more of from her lab reports...maybe EMF's ...
I just thought it was interesting to see her statistics in the presentation as she has a unique world view of various cancers. Althought ;the Americans she sees, are the wealthy ones, and most likely have had plastic surguries galore...with who knows what injected for beauty!
She does see how tumors can shrink with various treatments without pharmaceuticals, surgury or chemo. She saves surgury and chemo for very last steps to prolong life when that is all that is left to do.
She said her American patients seem to have more surgery's , than others from other counties. She said the effect of anesthesia takes a big toll on the body as well. Her lecture was given to doctors and researchrs at Columbia U. and Cancer specialists in Texas teaching University Hospitals. She brought her results and procedures to the renowned ones here who are now starting the same type of cancer techniques, using immunizations for Cancer.
This was just announced about a year ago in the press as new Cancer breakthroughs at Teaching University in Texas...but this has been done in Germany for much longer and they are working with specialists in USA now. They are trying to work together. That's why she comes here to lecture.
We will see a new emphasis on individualized medicine in the future in the USA as well as complementary medicine.
She treats living cells with natural things.
She is a cancer surgeon, but also treats CFS, and all other chronic conditions, including lyme that are pre-cursers to the cancer. Not as an expert on CFS or other conditions...but just as a preventative to cancer. In consort with specialists.
She prefers to treat those who are proactive and come for evaluation to catch the cancers before they get too far along. Most successful that way. We all have cancer, and it can be found in our blood...but not everyone has it in tumor form. We need to keep the body flowing and purifying...so cancer does not take hold.
These are her thoughts...paraphrased, so I'm just sharing them here.
I am no expert and have not been treated for cancer. But I do see the relationships and am doing my part to keep as toxin free as possible.
[ 10-14-2009, 10:50 AM: Message edited by: lightparfait ]
Posted by JamesNYC (Member # 15793) on :
My God how this thread has gone out of control!
XMRV has NOT been proven to be a cause of CFS, that is repeated in EVERY article. There is a long way to go to prove that.
Anyone wanna wait until they actually prove it before you try to get "cured"??
Anyone now thinking they DON'T have lyme? If so, you fall right into the IDSA trap. (that was rhetorical, don't actually post a response).
Sheesh.
Posted by JamesNYC (Member # 15793) on :
Blaze,
If EMF is the cause of all ills, why are you on a Lyme forum?
Isn't there a EMFnet.org you can spew to?
Posted by nomoremuscles (Member # 9560) on :
Is that necessary, James?
Posted by Bugg (Member # 8095) on :
Post-Lyme syndrome and chronic fatigue syndrome. Neuropsychiatric similarities and differences.Gaudino EA, Coyle PK, Krupp LB. Department of Neurology, State University of New York at Stony Brook, USA.
BACKGROUND: Patients with chronic fatigue syndrome (CFS) and post-Lyme syndrome (PLS) share many features, including symptoms of severe fatigue and cognitive difficulty.
OBJECTIVE: To examine the neuropsychiatric differences in these disorders to enhance understanding of how mood, fatigue, and cognitive performance interrelate in chronic illness.
METHODS: Twenty-five patients with CFS, 38 patients with PLS, and 56 healthy controls participated in the study. Patients with CFS met 1994 criteria for CFS and lacked histories suggestive of Lyme disease.
Patients with PLS were seropositive for Lyme disease, had met the Centers for Disease Control and Prevention criteria, or had histories strongly suggestive of Lyme disease and were experiencing severe fatigue that continued 6 months or more following completion of antibiotic treatment for Lyme disease. All subjects completed self-report measures of somatic symptoms and mood disturbance and underwent neuropsychological testing. All patients also underwent a structured psychiatric interview.
RESULTS: Patients with CFS and PLS were similar in several somatic symptoms and in psychiatric profile. Patients with CFS reported more flulike symptoms than patients with PLS. Patients with PLS but not patients with CFS performed significantly worse than controls on tests of attention, verbal memory, verbal fluency, and motor speed.
Patients with PLS without a premorbid history of psychiatric illness did relatively worse on cognitive tests than patients with PLS with premorbid psychiatric illness compared with healthy controls.
CONCLUSIONS: Despite symptom overlap, patients with PLS show greater cognitive deficits than patients with CFS compared with healthy controls. This is particularly apparent among patients with PLS who lack premorbid psychiatric illness.
Posted by sparkle7 (Member # 10397) on :
Thanks Lightparfait. Like I said - my comments were not directed towards you. I'm just a bit skeptical of all approaches.
I think it has been proven that most chemotherapies do not work for cancer. There are a few exceptions.
You really have to study it to see which ones are effective. My mother had non-Hodgkins lymphoma & she got an experimental therapy at Sloan Kettering & it worked.
So, I'm not anti drugs in favor of only natural remedies. You really have to conside everything carefully.
JamesNYC- Some of us have been battling this illness for many, many years. Not everyone has Lyme but some of us have been given that diagnosis. I feel I have been one of those people.
There are false positives with Lyme just as there are false negatives. I did the abx for about 9 months & nothing happened. No change in symptoms.
It's not uncommon. Some people take extreme amounts of abx & don't get better & may lose their gall bladders. Abx should not be taken lightly in my opinion for many reasons.
Some people sued the lab in Florida since they feel they were given a false positive. They took abx for a long time & lost their gall bladders.
I don't recall all of the details since I haven't researched this lately but you will find out about it if you search google. Not everyone who is ill with Lyme symptoms has Lyme.
This discovery of XMRV makes alot of sense to me. I you look at the website of the organization doing the research - they say that 95% of more than 200 people tested with CFS were found to have this virus.
It's important news but it's just the tip of the iceberg. If anyone has gotten a CFS, Fibro or Lyme diagnosis - it may be very important news about this discovery. I believe it is possible to have both. One does not cancel out the other.
coltman- thanks for your reply. I'm not trying to be flip in saying what I said. It's just that I lived in NYC around that time when AIDS first became known. People were dying left & right. It was sad.
It just confuses me when they say it's a "slow growing" retrovirus. It seemed that all of the sudden, alot of people got ill & died. Maybe it was more virulent at that time?
I have heard of cases where people were immune or that they were able to manage the illness. It just that it was a BIG thing where as the people who had CFS were ridiculed.
I'm sure it was very difficult for the people with AIDS but at least there was a public outcry for support.
Posted by peter j (Member # 11825) on :
Getting lymphoma and thereby CFS is not unnormal. It's actually pretty common. Everything which temporarly challange the immune system (and cancer and chemo is naturally such things) can make a dormant infection break out.
What I think (don't know of course, but think) is that Lyme causes most of the symptoms and XMRV could very well be an enabler.
Maybe the HIV-like XMRV works on CD57 like HIV works on CD4.
And when you have lyme they are synergistic (the lyme giving the XMRV more room, making the CD57 even lower).
Posted by sparkle7 (Member # 10397) on :
peter- They are saying that there may be a connection between XMRV & lymphoma - also prostate cancer... There are probably more things to it.
There needs to be more studies about all of this before we really know what's going on. It's just sad for the people who are ill & trying to get well.
My situation really fits the study that Bugg posted. Thanks for posting that.
Many illnesses have fatigue as a component. I believe there is a difference between fatigue & the kind of fatigue that you experience with CFS.
My symptoms have changed. When I had CFS back in the 80's it was fatigue. When I became ill again 8 years later - I had more pain rather than fatigue. That's when I was diagnosed with Fibromyalgia. 9 years later, I got a Lyme diagnosis...
I had lots of tests but nothing seemed to be evident as to the cause. My diagnosis for Lyme was clinical. I was also tested for EBV but my results were low.
There may be overlaps for all of these things - viruses, retro viruses, bacteria, parasites, mold, chemical toxins... At this point, it's pretty endless in what variations what may be making us ill.
I guess the thing that is important is that after all of these years - something is validating the people who were told they had a mental problem when it was CFS.
I believe CFS is a distinct condition from all of the other illnesses. We need to be able to separate it out so that we don't think it's something else & use the wrong treatment.
BTW - my mother had 4th stage lymphoma & chemotherapy cured it. Some of the drug treatments do work for cancer. In the case of Farrah Fawcett - we don't know if using Dr. Js therapy from the beginning would have saved her.
There's an Italian doctor who is having success at getting rid of tumors with baking soda.
All of these things are very individual. There is no one thing for everyone.
I haven't researched retroviruses since I had no idea that that's what could be making me ill up until now. We really have to research our individual case.
That's why it kind of makes me mad when people say everyone has to deal with mercury, yeast, mold, or "fill in the blank" or abx are no good or everyone should take abx indefinitely or we should all do AI, or drink mangosteen juice, etc.
No one here knows what everyone here should do. We all are individuals.
Posted by PV (Member # 20436) on :
An interesting thread, I read about this at the weekend in 'The Independent' newspaper and was excited by the great news. I was most excited by the connection to mice as this is a source of Lyme infection too - please read on.
Stories from around the world on the discovery are on the link below. Clicking 'View Reprint' at the top gets the full PDF report free of charge.
Praise to The Whittemore Peterson Institute for Neuro Immune Disease - Nevada
"We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested."
The next link suggests that the virus is present in mice? Consider these steps of infection:
1. A nymph tick usually takes it's first blood meal from a field mouse. The tick is then loaded with 'infectious soup' from the mouse consisting of various: bacteria, viruses (inc XMRV); parasites and other micro-organisms. The extent of the soup is yet unknown and will obviously vary.
2. The tick departs from the mouse and later attaches to a human/larger mamal for next blood meal.
3. Human is now multi-infected with the 'soup'.
4. Could lyme fatigue be caused by the XMRV element?
1. XMRV might just be the latest piece of the puzzle for some infections. Add it to the viral column alongside all the other "Chronic Fatigue Syndrome" supposed viral causes. The big difference here is that XMRV is a retrovirus, not a herpetic virus.
2. We need to find out what, if any, cross reactions XMRV has especially on immune assays. For instance, there's some evidence to show that EBV and Lyme will cross react. If the test isn't specific enough, it is only going to lead people in the wrong direction
3. We need to investigate small mammal > tick > large mammal/human transmission vectors to illustrate if most people are picking up XMRV from the same bite that gave them everything else, versus a separate exposure.
Years ago a few associates and I applied for a grant investigating pathogens similar XMRV but were denied for pretty much being too small an operation in finances and reputatation. It irritates me it took some of the "big names" to blow the door off this sort of thing, but progress is progress.
I'm going to make a few calls to see if I can get some preliminary tests done for/on myself. If that goes through, I'll see what I can do about expanded testing.
Posted by sparkle7 (Member # 10397) on :
Are the mice infected in the lab or in the wild?
Sometimes these pathogens get loose & things in laboratories can be tainted...
When I first became ill - I was living in Brooklyn, NY. I would have had more of a chance to have contact with mouse droppings, etc. then with ticks.
Lots of rats live in the subways. I know ticks are everywhere - even in large cities but I don't think I ever saw any there. Who knows...? I may have gone for a hike in upstate NY or something.
How can we remember everything we did 20 years ago? Does it even matter?
Please keep us informed Blackstone.
Posted by sparkle7 (Member # 10397) on :
Factors that are reducing and therefore protective include fresh vegetables (not overcooked and preferably raw) and especially freshly juiced green drinks, olive oil, low stress, clean environments, low EMF exposure (aka avoiding cell phones and unshielded house currents), and avoiding drugs that induce P450.
Oxidative stess will potentially amplify XMRV replication. The biggest amplifier of oxidative stress is NF Kappa B and one of the best inhibitors of NF-kB are the artemisins (Artesunate and Wormwood). Artemisins are also thought to be useful in cancer.
Olive leaf extract
Phyllanthus niruri (an herb)
Posted by emla999/Lyme (Member # 12606) on :
I thought some of you might be interested in this.
Just my 2 cents....I had a friend that went through 2 years of Viral Therapies with the harshest drugs and he got worse....very bad. Most viruses are opportunistic.
Posted by Hoosiers51 (Member # 15759) on :
Bears,
By "the harshest drugs," do you mean the ones they use with HIV? There is a common protocol for HIV where they will combine 3 or 4 antivirals, but it isn't the usual Acyclovir, Valtrex, etc that we Lymies deal with.
I had been wondering if some of those harsh HIV meds would be helpful with any of this.
Posted by n.northernlights (Member # 17934) on :
In 1992, reeves cautioned against cfs patients giving blood: http://www.cfs-news.org/joan.htm Posted by n.northernlights (Member # 17934) on :
Check out Peggy's blog http://peggymunson.blogspot.com/ in te fist blog entry about xmrv she also mentions Cheney and Lyme briefly.
Posted by Myco (Member # 9536) on :
Peggy mentions her severe chemical sensitivities. I had terrible chemical sensitivities when I first became ill. I was diagnosed with CFS but luckily a friend sent me to an LLMD and I had Lyme, Bart and Babs.
As soon as I began antibiotics my chemical sensitivities began to dissipate. I now have none after 2 yrs of treatment. I think these infections sequester in the liver and cause severe porphyria.
I wonder if Peggy ever went to an LLMD?
Posted by sparkle7 (Member # 10397) on :
HIV drugs or anti-virals may not be effective for XMRV. It's a retrovirus & it's different than HIV (from what I've read). The drugs probably need to be something specific to apply to XMRV - if that's what needs to be treated.
Posted by nomoremuscles (Member # 9560) on :
Peggy is an outstanding writer. I'm not sure I get all her points, but she is a pleasure to read. I wish I had the crackling energy that's in her prose. Hell, I'll bet she does too.
Posted by Lalkay (Member # 50146) on :
Hello I am cured of ME/cfs on antiretrovirals viread and raltegravir. I do not have lyme.
Posted by Lalkay (Member # 50146) on :
Need to start on low dose and build it up to full dose
Posted by Rivendell (Member # 19922) on :
JamesNYC
I agree with you and have the same concerns. All of this research is so valuable and yet it falls into corrupt hands that want to protect profits, and investments, and we end up screwed.
I hope this research can be used in a positive way. There has been research proving that lyme still exists after adequate treatment - why didn't that make big headlines?
And I do believe viruses also cause chronic illnesses. I think all these infections work together.
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), please let me know. I am genuinely curious about this.
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