posted
"The researchers--from the National Institutes of Health (NIH), the FDA and Harvard Medical School--detected novel close cousins to XMRV called MLVs--which stands for Murine Leukemia Viruses-- in 86.5 percent of 37 patients and nearly 7 percent of 44 controls."
[ 08-23-2010, 09:00 PM: Message edited by: m0joey ]
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Tincup
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posted
Encouraging news, perhaps (?), for the CFS community... and if this is something to consider as a cause of human illness or their specific illness, I do hope someday they can figure out how to cure a virus, especially since the strains are so varied- like 300 known Lyme strains- that I doubt they can make a vaccine.
On the other hand....
Not sure the news has any specific relevance in the Lyme community, but we'll see.
Since a certain percentage of the general population tests positive to the virus and they are "healthy controls", we would think some of us may also test positive too. At least that is what I would expect to happen.
My hope is that folks don't get all worked up about this being another "BIG discovery" and that this is the final frontier, the end of all ends....
Or that it means the virus is the definitive cause of human illnesses, like for prostate cancer or CFS ... because it may not be...
Or infer that it is the missing link to "our" continuing illness.
It would be a shame to have hopes built up by hype as we've seen happen too many times in the past... and it not be "the" answer.
A few quotes I found interesting... and keep in mind these patients studied were all from the same area of the country.. the New England states. What is found in those patients may not be the same as what is found in patients in other geographical areas.
"As stated in the reports, there could be a difference in the prevalence of these infectious agents in CFS patient pop- ulations in different geographic areas."
"Even if subsequent studies confirm an association between MLV-like viruses and CFS, that will not establish a causal role for these viruses in the pathogenesis of this illness."
"On repeated testing 2 years later of four of the academic center patients, all four remained positive. On repeated testing of eight academic center patients ∼15 y later (in 2010), seven remained positive."
"The finding of XMRV or MLV sequences in persons with CFS or other diseases does not constitute definitive proof of viral infection."
" CFS is a syndrome defined exclusively by a group of nonspecific symptoms and thus has an ill-defined phenotype. Future studies should adhere to consensus case definitions such as that developed by the Centers for Disease Control and Prevention (CDC) (1). Conversely, putative ``healthy'' control subjects should explicitly deny the presence of those symptoms that constitute the case definition of CFS."
"Furthermore, even bona fide cases of CFS may have different viral or other etiologies."
"It remains to be shown that the association that we have found, using the methods that we have described, can be generalized to a larger group of patients with CFS. Indeed, we suspect that the association will be lower in CFS cases identified through community-based surveys, as contrasted to cases seen at academic medical centers."
Thanks for posting this MoJoey... interesting thoughts.
posted
Dr Lo indicated that the variety of MLV's (mutations) lends more weight to their being a causative role in disease. HIV manifests differently in different people, but all people share a common problem: immune deficiency. So, in CFS, the immune system is up-regulated. Yet, one has more pain, many have sore throats and swollen lymph nodes, and all have post-exercise crash of varying degrees. I personally think that they will find this retrovirus is at the root of the CFS illness, but humans are unique, so there will be unique manifestations, perhaps based on individual vulnerable or weak areas of the body (and here is where genetics comes in). The big question is, how does a mouse virus get from mice to humans? Via a tick bite, flea bite or ? Perhaps a vaccination?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
This definitely pertains to the Lyme community. Judy Mikovitz (who originally found XMRV in ME/CFS patients) stated that about a third of XMRV-pos. patients had Lyme as a coinfection. So Lyme does NOT equal CFS, but these can certainly be coinfections, along with other coinfections (babesia, bart, etc.).
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I agree--this definitely pertains to the chronic lyme community. Every human retrovirus discovered in history (HIV, HTLV-1, HTLV-2) has been known to be pathogenic in nature, so yes there is a chance that this is just a "passenger" virus but we should presume that it is not. Dr. Burrascano and LLMDs already weighed in on this being a huge development.
I am one of those patients that thought my CFS was lyme disease. I tested positive for lyme per CDC and igenex IGM criteria, saw Dr. H, treated with long-term antibiotics, and not a single symptom shifted. Turns out I'm XMRV+. I understand that treating lyme and bacterial co-infections help some, but obviously it does not help everyone, and a retrovirus can at least in theory adequately explain why many do not respond to antibiotics and antiviral (not antiretroviral) therapy.
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Rumigirl
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posted
Yes, Dr. B is quite involved with following the research on this, as he believes that it may well be a missing link for the people for whom Lyme and co-infection treatment has not been sufficient.
As he has been saying, "stay tuned."
There are some people who are doing anti-retroviral treatment, as they feel they can't wait for the research to grind on slowly (they might not make it, if they waited).
But for most, this is premature. There is lots that we are just beginning to find out about, like the role of biofilms, filaria, etc. but that's not for this thread.
m0joey, does Dr. H, or anyone else, have ideas on what treatment to give you?
This is an important finding; it would be great if it did help. I do know that two people, who are treating with anti-retrovirals are seeing improvements. Of course, this is very early to really know much.
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Tincup
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Good points.. but you have to question the reasoning also. I am having a hard time explaining it .. but I'll try.
If 1/3 of the CFS patients with the XMRV had Lyme disease as Judy M. claims ...
Then 1/3 of prostate cancer patients with XMRV might also have Lyme?
First of all...
Is that really unusual? People with weakened immune systems like you'd find in Lyme and CFS can be predisposed to acquiring all sorts of opportunistic infections.
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Then switch the thinking around...
Lyme patients might have both XMRV and prostate cancer.. but does that automatically mean they have CFS?
To make it simpler...
If 1/3 of CFS patients had blue eyes...
And 1/3 of prostate cancer patients had blue eyes...
Did their blue eyes cause their diseases or have something to do with their diseases?
Does that mean they all have XMRV or that the blue eyes caused the XMRV?
OR.. does it mean they all have Lyme or that the blue eyes caused the Lyme?
`````````````````````````````````````````````````
I go back to this simple example...
100 homes were checked by researchers for germs. They checked 100 toilet seats and 100 cutting boards to make a comparison.
They determined the cutting boards had more germs than the toilet seats.
Therefore, does that mean people should cut their veggies up on the toilet seat?
Just want folks to not jump to conclusions and think this is a hot diggity dog discovery without a lot more research and proof the XMRV has anything to do with anything. We've had WAY too many disappointments over the years.
Now.. find the XMRV in ticks.. and maybe we would have something to think about. And don't forget about the geographical connections.
The New England patients had a higher percentage of the virus than the general population.. but...
Locally 100 Lyme patients were tested and only one had the virus. So why are they still sick?
I am NOT trying to argue.. just want folks to be careful jumping to conclusions and closing minds to other factors.
I have gotten some feedback on treatment from Dr. Daniel Peterson, who along with Dr. Paul Cheney are the CFS equivalents of the Dr. J and Dr. Burrascano's (martyrs, trailblazers, veterans, patron saints) of the lyme community. They started seeing CFS patients together during the Incline Village outbreak of 1984 and suspected a retrovirus was involved all along.
[ 08-26-2010, 07:56 PM: Message edited by: sixgoofykids ]
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Tincup
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"There are some people who are doing anti-retroviral treatment, as they feel they can't wait for the research to grind on slowly (they might not make it, if they waited)."
Rumigirl noted that this is premature and I agree.
Keep in mind these people didn't test positive for the virus either. If taking the drugs does help for some reason and doesn't hurt them more with the side effects...
There still is NO proof that the drugs helped the virus because they don't even know if they had it.
This is another reason we should not jump the gun and try to treat nilly willy. It can be dangerous.
Personally I like Eva Sapi's research much better. It is more plausible (in my opinion) and we are seeing results with patients by treating using the biofilms theory.
Then again... we are all totally different. What is good for the goose in not always good for the gander.
And just think about it. The IDSA is still claiming 3 weeks of antibiotics cures Lyme. We are light years ahead of them.
Tincup
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posted
Mojoey... good writing! Thanks for sharing that. I am sharing this quote from the write up you did.
"Bottom line: he knows of at least 10 patients on ARVs and nobody is better yet. That doesn't mean ``don't do them'' but he definitely wouldn't do ARVs until XMRV+ results have been replicated with another lab (a few confirmation studies are referenced in the last paragraph) and then results may take months to years to manifest."
springshowers
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posted
I really think that there are so many layers and we all just have different layers and some people who have the Viral issues first and then can get the lyme and other infections pile one.
or vise versa or somewhere inbetween.
If you ask me you have to keep your eyes and head open to all the viral, bacterial, fungal and parasitic infections and use your own history and common sense to help your doctor unwind and treat things in the order that makes sense....
I have found I have gone full circle to being told I have CFS and then FMS and that they were the same and then to having many infections related to both.. and then later lyme and those tick borne co infections added to that list...
And then being told that CFS and FMS is really all lyme..
But I have now treated lyme and it is cleared out from my body. I full feel that as well as the tick borne infections and yet as I keep going I am not treating the first infections and type of infections I got those are viral..
and the symptoms are definately things that can and do overlap but also that I would easily be able to say now I have FMS and CFS and no more Lyme Disease Illness symptoms...
I find it all very interesting. I have been very in tune with my body and watching and feeling symptoms in relations to treatment types and herxing and kinds of medications and other things that have given me guidelines I have been confident about .. of course not 100 percent but I have been able to narrow down and isolate the symptoms and even sometimes it is the same symptom by name but it shows up in a different way or place in or on the body.....
I though do feel we can not draw too many lines either and keep your and open mind.
I once went to a FMS support site and tried to talk about Lyme Disease and Nobody responded at all or the few that even did to any post were very negative and would just say "we do not have lyme disease here" I was taken back at that line in the sand.
There is no line in the sand and as long as we get any ongoing untreated infection and our immune systems become compromised we are open to other infections and the more we aquire the more the things we were exposed to as children and even childhood diseases or vaccines etc.. Anything in us or newly exposed to have a chance to take advantage of that and come forward or be activated and give us new infections because our systems can not battle them off or keep them in check..
So to undo all of those and get to a place where our systems are strong enough is tough. And esp if you have children genetic issues that got you very sick all during childhood such as I did. I am not sure that "getting back there" may be totally possible..
This whole thing is big and the big picture should always be looked at..
I hope the doctors will also do this as I find many doctor believe "one" thing or "This" or "that" based on their practice or research or specialty and they call could put heads together and I suspect they all have much more in common and we all have much more in common than not..
So we got to have doctors and medical care that keeps that big picture wide open so things are not left out and so that we also do not stay narrow minded and drawing lines in the sand too.
I mean can you believe all the names of the disorders and immune disorders and diseases and how they are all treated by the symptom and by specific doctors and then each of them getting stuck into their own worlds..
There is no one answer
It does seem up to us to keep our doctors and to keep ourselves and to support one another to keep on looking at all the options and to keep that open mind open...
I so appreciate those on sites like this that remind us of those things and to come in and remind people to be tested for other things besides lyme or to look into this or that and to not forget these sorts of things..
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springshowers
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posted
I recently discussed this also with a doctor whom confirmed what I believe and that in the biofilm is colonies of Bacterial, Protozoan, Fungal and Viral issues and we have to keep breaking apart and treating a wide scope and too as one infection reduced then the others will come down and or the take turns on and off during the time we are treating... as they all live in this environment and co exist and are trying to stay alive and will respond to the various things we keep using.. as well trying to stay safe away from the immune system and medications.
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posted
Some HIV activated AIDS patients have Lyme, too, but no one would ever tell an AIDS patient that the root of their problems is Lyme!
Retroviruses dysregulate the immune system so that all kinds of viruses and latent infections become reactivated. The root of CFIDS is likely to be viral, and Lyme is likely to be a piggyback infection in people with CFIDS.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
Late stage AIDS patients often die of secondary infections such as mono, but that doesn't mean the illness is caused by mono.
If a patient takes antibiotics and is cured, then yes I think the root of their problem is lyme, mycoplasma, or some other bacteria.
If a patient takes valcyte and is cured, then yes I think the root is the herpes virus.
If a patient does all of the above and doesn't budge or achieves little substantial improvement, a retrovirus may be worth exploring.
Politics of individual pathogens aside, the riskiest thing we can possibly do is latch onto any particular theory or individual cause. Treat something and if it helps, continue. If it doesn't, don't let anyone stop you from moving on. The best proof of causation is treatment outcome. Commentary on yesterday's announcement from a team of Canadian and French resesarchers http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html:
"As we currently lack postulates to prove a causal association with a prevalent agent and a chronic disease with genetic predisposition, it would also be appropriate to conduct interventional studies. Indeed, the Helicobacter pylori hypothesis of peptic ulcer disease was only accepted after Barry Marshall showed that bacterial eradication with antibiotics cured peptic ulcer disease (21)."
Posts: 713 | From Los Angeles | Registered: Oct 2007
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For anyone interested, this is one of the best synopsis's of the NIH telebriefing with a little added history on CFIDS (which implicates certain government agencies/personnel as outright hindrances to finding the truth -- for at least 2 decades) (Caution, this might enrage some people):
It makes a connection between the Gulf oil clean-up with dengue. It's sort of a similar situation of which came first & what pathogen is making people ill.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Thanks. No more stem cells for me in light of the retrovirus(es) confirmation. Leading researchers and physicians are telling me retroviral replication is a big risk with stem cell division. Some think that may very well end up being a differentiating factor in what patients respond and don't respond to stem cell transplants.
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sparkle7
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posted
Wow - that's deep...
How about the guy with HIV & lymphoma who was cured with stem cells? The stem cells were from someone with immunity to HIV... Do a search on google for more info. It was on Bloomberg news about 6 months ago - if I recall correctly.
Something to think about... It may be best to just wait a bit & see what develops.
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Rumigirl
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posted
TC, the people who are treating with antiretrovirals that I know about HAVE tested positive for XMRV. And the two I know of have improved significantly in the 5 months that they have been treating.
There were in-vitro studies done to see which antiretrovirals worked on XMRV, and they came up with 3, which is what people are using who are treating.
This is HUGE. There will be some researchers and Dr. B speaking about it at ILADS in Oct. And there was a researcher who spoke at U of New Haven (Sapi's conference) in the Spring.
The more I read, the more breathtaking this is. I am following the research; a lot is coming out quickly now.
There have been major articles that just came out in the National Academy of Sciences, the Wall St. Journal (front page), Scientific American, the NY Times, and Newsweek.
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Hoosiers51
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posted
I thought the Wall Street Journal article was particularly useful, because it sums up the current research very simply and quickly, without having to jump back and forth between a lot of research:
This is an interesting thought. It is interesting to think that there could be quite a few viruses, all in the same "family" that we are dealing with.
When my LLMD told me that they were having a hard time predicting which of their patients were testing positive for XMRV and which ones weren't, that told me something. It told me that either... 1) the current testing for XMRV isn't very accurate, or 2) there were more variations that we weren't yet looking for, or 3) in general, this retrovirus thing is a non-issue in a sea of many causes of CFS.
It sounds like it could be #2.
Because to me, if you can't predict which patients will test positive for the virus (speaking of just XMRV), that drops the connection between this virus and actual symptoms. So if there are other things to test for (these MRV's), great.
Of course I do believe there is a link, I'd just like to see even more positives among those of us that are sick with something that's seemingly "not" anything else.
I haven't been tested yet. Still holding off while the science moves forward, to get the most bang for my buck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Excellent information and interesting discussions.
We live in an "ocean" of viruses and bacteria. I'm a biologist and these things are amazing-amazingly adaptable, amazingly variable, and fascinating to study. They have been around far longer than the human race has.
Different people in different areas are exposed to hundreds? thousands? of bacteria and viruses every day. Depending on the virus/bacteria and the "habitat; i.e. our body", there can be any number of outcomes. People can stay completely healthy, others get a "flu" like illness and get better, while others get more virulent pathogens and combinations of pathogens that can really make it hard on the immune system.
There isn't a single person on this forum or on this planet who only has one pathogen to deal with. Obviously it seems that with Lyme the situation becomes more complex. I first became very ill with mononucleosis at age 19. Five years later, when I was exposed to Lyme I was convinced I had "recurring mono" (which was also dismissed by doctors) for almost 20 years, as the symptoms of fatigue, flu, sweats, were so similar.
Maybe the EBV predisposed me to having a weakened immune system, which lead to Lyme, which has lead to many other things.
I think information and knowledge is power. The information is relevant because doctors will not be able to tell suffering patients that it is always in their head. More research will go into these auto immune dysfunctions....Lyme is a part of the puzzle. Remember, HIV used to be a death sentence and now many people can live normal lives with medication and treatment. I think these discoveries are VERY relevant as the more we understand what is going on inside the body, the more we can move towards a cure-yes...a cure...why not? At the very least, learn to manage complicated cases.
Let's keep our immune systems as strong as possible. The science will move forward, I agree, one science paper isn't a "cure" but it is a major step forward.
It's interesting, right now I am living in Peru and these types of diseases simply don't exist...there is no "chronic fatigue syndrome" here, etc. Maybe stronger immune systems? Most of the population in Peru got wiped out by the common FLU when the spaniards arrived; maybe those that are around today have strong immune systems.
As Dr. B. says, "stay tuned". Have a great day all!
Posts: 172 | From ohio | Registered: Feb 2010
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posted
The chronic EBV theory for CFS was thrown out a long time ago. The most common trigger you hear of for acute-onset CFS is EBV, but most CFS researchers do not think that's the cause. There is actually a chronic EBV disease where patients have EBV, don't recover, treat with valtrex, and do. The vast majority of CFS patients do not recover from valtrex, valcyte, or any antivirals targeting herpes infections. (I've done valtrex)
For 5 years I thought I could fight this time in a bechamp-based manner by keeping my immune system strong, building it up, doing anything to give it the upper hand. In the meantime, my NK cell absolute count dropped to 40 and my LU30% (measure of NK cell cytotoxicity) dropped to 2, both the lowest in 5 years. Retroviruses don't operate under the same logic: it has been shown that variants of MLV reside inside the white blood cells, so taking supplements or even drugs to increase WBCs such as immunovir won't actually help you get rid of a retrovirus. Ampligen is an immune modulator that has had the best track record for CFS patients, but it has also been shown to kill XMRV in a test tube, so that may be why it has had such a high level of success with potential retroviral patients and then patients relapse (sometimes dramatically) after they stop the drug.
I've finally gotten to the point where I realize an attack-based therapy is necessary before I rebuild. This doesn't mean drugs; I'm going with photons and rifing first, then possibly ampligen and HIV drugs.
As for CFS not existing in south america, I don't know about Peru, but one patient I know of on ampligen is from south america and moved to Charlotte, NC to get treatment. Also, ampligen is now licensed to a south american pharmaceutical company so clearly they recognize the market for CFS there.
I think epidemiological research and clinical research hasn't reached a tipping point in many developing countries yet to establish a disease that isn't even officially recognized as an infectious disease by the CDC in the US, the most developed country in the world. It will take time, but when the dust settles, I believe the prevalence in the rest of the world won't deviate too much from the US
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I think it's good to keep an open mind on any research that comes out. Other wise I don't think we are any better then the closed minded docors we have been to that can't see out side the box.
I just came back from my doctors and he said all 10 of his patients that have come back positive for XMRV are all positive to Lyme too.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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timaca
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posted
mOjoey~ Have you been tested for enteroviruses? There is a doctor who lives in your area that specializes in that....Arup lab is best for testing.
Yes I was positive for enterovirus too. Did the endoscopy and was analyzed by Dr. Chia's lab. He said I was +1, which meant it was present but not severe as +2. Took oxymatrine (now called equilibrant) for 6 months and didn't improve at all. I've tested positive for antibodies to coxsackie and it's shown up in energetic testing, but it's come-and-go trend tells me it's opportunistic for me.
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timaca
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Interesting. I'm on oxymatrine, and it has helped me. I've been on it about a year and a half.
A friend of mine is on it too. She is on valtrex, and I'm on acyclovir. We've both improved. I've wondered if it doesn't help to add an antiviral to the oxymatrine...
Timaca
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:I just came back from my doctors and he said all 10 of his patients that have come back positive for XMRV are all positive to Lyme too."
This is probably heresy on a Lyme forum, but what if all 10 of his patients in fact have XMRV and NOT LYME?
Lyme is a "clinical diagnosis," and so is CFIDS. Symptoms overlap so much, even Lyme doctors can't tell them apart (nor can ID doctors and other specialists).
Everyone acknowledges that Lyme tests are unreliable and there can be cross-reactivity.
So, who really knows?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
Here's how I like to think of lyme versus MLVs:
If you were born tomorrow without all your prior knowledge, suddenly got sick, tested positive for both lyme and a retrovirus (that happens to embedded in your white blood cells) and did research on the pathophysiology, what would be your logical conclusion on which is the more likely cause of immune suppression?
I think we need to step away from the lyme versus CFS paradigm and move toward common sense. If the answer to the above isn't clear, please do your research on how a retrovirus behaves and how a spirochete behaves before you derive any conclusions from what your doctor tells you.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Unfortunately ampligen is not a FDA-approved drug. It may be going into phase III clinical trials soon, so if you're really interested you may want to contact hemispherx and get on their email list for trial info. There are open-label cost-recovery trials going on (you pay for the cost of the drug plus all testing, administration--costs about 20k a year), but only two doctors in the country are doing that right now.
Hopefully it'll be FDA-approved within the next year so more CFS patients have access to it. It is easily the single drug with the best track record in the last 20 years of CFS treatment.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Tincup
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posted
Many of us are frustrated that chronic Lyme can be very difficult to treat for some people and can cause intolerable symptoms that can last a life time. But please note...
Over 3.2 million people in the US have already contracted Lyme disease (according to CDC 10-fold assessment) since 1990.
The majority were treated and recovered in various stages.
Of the percent that did not recover- many were found to have co-factors and viral, bacterial and parasitic coinfections impeding their progress. MANY of these diseases and disease causing organisms below have various strains and sub-strains, and are co-mixing in the environment.
Babesia
Bartonella
Mycoplasma
Ehrlichia
Anaplasma
Parvo B-19
Epstein Bar
Herpes viruses
Tularamia
Brucellosis
Colorado Tick Fever
Relapsing Fever
Leptospirosis
Rocky Mountain Spotted Fever
Salmonella
Morgellons
STARI
HIV
West Nile
etc., etc. etc.
To complicate matters...
There are over 300 known strains of Borellia. We only test for one (standard labs).
In the past few years several new tick borne disease were discovered that no one is paying mind to and some aren't even named yet. How can they be identified in patients and treated successfully, if they can?
Then there are the worms, cysts, L-forms, biofilms, etc. to consider in some patients- if not all who remain ill.
Then there are neurotoxins caused by Lyme and Babesia, genetic factors, cytokine storms, yeast, immune suppression issues, TGF beta activation, mold, etc.
There are side effects of all the meds and supplements we are taking that can add to the problems...
And normal human conditions like diabetes, heart problems, age, cancers, etc to deal with.
It would be great if we had all the answers to be able to address all these diseases and cure everyone, but we don't.
Do I think XMRV is "the" only Big Bubba that must be addressed in this group of people.... who weren't treated properly or in a timely manner... in order to cure them?
No.
Do I think the XMRV may show up in a subset of Lyme patients like these other infections did once we knew they existed and tested the patients for them?
Yes.
We've come a LONG LONG way weeding through this complex mess (infectious soup) and have found many answers that have helped a lot of patients (no thanks to the IDSA).
But is this XMRV the only Big Bubba to focus on and once addressed it will make us all dance in the moonlight once again?
I don't think so. Wish it was, but I can't recommend folks bet the farm on it.
We need more research to figure out the possibilities and the answers, if they can be found. We need to keep an open mind for sure and not be overly excited and end up putting all our eggs in one basket.
As for Dr. B saying "stay tuned"... even he admits we have a long row to hoe and like the other coinfections, eventually we may learn more about what causes some subset of Lyme patients to remain ill and then do more studies to be able to address it.
We will keep chipping away at the old block and hope for the best for our families and our future generations. That is the best we can do.
I don't want to take issue with your response, but your response captures the "let the researchers and doctors figure it out" mentality that I think can stand in the way of taking the body of scientific knowledge at our disposal and drawing logical estimations of what is going on.
Do I think there will be many infections discovered down the line that we don't know of that are causing illness in people?
Yes.
Do I think XMRV or retroviruses in general are the answer for people that don't recover from antivirals or anti-bacterial therapies?
For some, not everyone.
If I tested positive for a bacterial infection (borrelia, babesia, bartonella, mycoplasma etc) and a retrovirus (MLV, HIV, HLTV-1, HTLV-2 etc) and read about how each pathogen replicates and infects the human body, would it even be a question that the retrovirus is more likely of the two to have a role in immune suppression?
No.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's also dangerous to assume that everyone with a clinical Lyme diagnosis should blast away with abx for an extended period of time. Some people do that thinking that one day it might work... because, after all, it has to be Lyme.
This is not a good way to think about this illness in my opinion. So much damage can be done by large, extended doses of abx. This is especially true if the thing that is making us ill is not going to be effected by abx.
Given the list of potential pathogens... it may be best to be a bit cautious of the treatments. I'd say, if you try something for a good amount of time (like a few months) & it doesn't work - chances are that you need to try a different approach.
I've heard that in some cases of cancer - people who aggressively treated were no better off than people who did nothing. I'm not saying to not treat anything... we just have to be selective & have some common sense. Most doctors are not going to know this.
We have to think for ourselves. We are all being inundated with potential pathogens every day. All of this has to be addressed on an on-going basis. Drugs can be very helpful.
It would be nice if some people shared an alternative protocol or some alternatives to drugs. I like to study what people are doing. I'm not big on drug protocols but I'd like to read about anything that may help from a holistic angle.
Artemesia Annua has been helpful for me, as well as, treating parasites via the old stand by - green, black walnut hulls, cloves, wormwood... Artemesia has been studied for retroviral applications. Anything else?
Given the environment these days - we really need a daily protocol to help us detox. Herbs have always been helpful for me.
Please post any alternatives that may be useful.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sparky- you got it!
Just what I was talking about. You said...
"I'd say, if you try something for a good amount of time (like a few months) & it doesn't work - chances are that you need to try a different approach."
First of all, your comment is smacking of what the IDSA tells us over and over... which is...
It isn't Lyme disease if it isn't cured with a short course of antibiotics so you need to stop treating with antibiotics and just look elsewhere.. . and their "elsewhere" is looking at stuff like at MS, arthritis, fibromyalgia, CFS, etc...
And like this new theory, their cure is not to be had... and those taking that road could get much worse with what is really hitting them in the meantime if they stray.
And THAT is the concern I have. In a nutshell.
Many people don't understand the complexness of Borellia and coinfections and they think (by hoping it so) that they can try this and that for a little while to see if it works... and keep jumping from one ship to another if not satisfied with the results and/or if the cure doesn't come fast enough for them.
For example.. I don't know of any LLMD that would expect people who are infected and coinfected to be cured in "a few months" or so, like your theory states in your post. It just doesn't happen that way.. in many many cases.
Most of the successes I've seen can take a year or more (much more in many cases) of treatment to properly address this stealth pathogen and other known and unknown infections.
Even then folks may still be sick from THOSE organisms after we've done all we can to treat it... and will have to learn to live with it.
Sometimes you can't put Humpty Dumpty back together again, no matter how hard you try.
Anyhow... you've made one of my points. Don't jump the complex Lyme/coinfection ship on a whim or jump the gun because of a couple of new reports that may or may not pan out.
Plus... where in these new studies does it say the XMRV tests and comparisons were done on Lyme patients? Or Babesia patients? Or Bartonella patients?
It doesn't. The tests were run using people with one of the many "CFS" definitions. Soooooooo...
If I had diabetes and took insulin... and someone else gained weight like a diabetic can do.. does that mean the weight gainer should take insulin?
Overlapping symptoms from one condition to another does not make OUR condition the same as theirs, or vise versa.
If it did, everyone who has headaches would be taking narcotic drugs because some who have headaches found relief that way. See how that doesn't make sense?
Anyhow.. my hope is that people don't ride off into the sunset just because someone waves another new theory in their face.
Too many people over the years have been hurt doing that... big time physically, emotionally and financially.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Mojoey said..
"If I tested positive for a bacterial infection (borrelia, babesia, bartonella, mycoplasma etc) and a retrovirus (MLV, HIV, HLTV-1, HTLV-2 etc) and read about how each pathogen replicates and infects the human body, would it even be a question that the retrovirus is more likely of the two to have a role in immune suppression? No."
We are going to have to agree to disagree on this point.
I don't feel there is enough research showing the true value of the comparisons you laid out above... and how we are affected by them singly or in combination...
Nor enough studies in on the immune system in general as it relates to Lyme and coinfections or viruses to be able to make a "for sure" stand either way.
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And my response might have said to you it has the, let the docs figure it out mentality... but if I felt that way, I'd be long gone.. as would many many others.
Sorry my writing reflected that image because that is not at all "me".
After all, everyone knows I eat doctors for breakfast... especially IDSA ducks!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Tincup - I think you misunderstood me... I think alot of people may be treating their Lyme & it really isn't Lyme. I never liked the IDSA vs. ILADS thing in the first place. I think there is some truth that antibiotics may not do it for everyone. I think it's wise to be cautious.
This is the only place (or set of people - "those with Lyme") I've been to that thinks that large doses of abx are "alternative medicine". Doesn't anyone but me find that a bit odd? Most "alternative medicine" I've read over the course of my life has been about staying away from abx...
I know of people who did years worth of abx & they just got more ill than they were to begin with. People who ended up with bad intestinal issues, yeast, lost gall bladders... These are serious side effects. I just don't think that everyone who ends up here on Lymenet has Lyme.
The tests are all so faulty - we just don't know. I'm all for XMRV research & it being a potential cause some of our illness. I don't think that's the endpoint. There may be 100 other things out there that haven't been "discovered" yet.
Then, there the "hybrids" of all of those things plus the known things like herpes, Lyme, yeast, heavy metals, other co-infections, etc.
It's all too complex to think a bunch of heavy duty abx is going to cure it all. I'm not telling anyone not to do it but I'm not going to do that unless I'm at least 90% sure it's relevant.
I am not against drugs but we have to be cautious. I would give things a time limit. If I don't feel somewhat better from something I'm taking - I discontinue it. We all have to decide for ourselves how long that time limit is.
Abx never made me feel better, ever. You have to be cautious about all of this. Some doctors will just string you along even though you may not have Lyme. It's good for them & it's good for the companies who make abx... There's a profit motive, unfortunately...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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There have been lyme patients that were cured of Lyme disease with antibiotics. Period.
I have never heard of an AIDS patient that took a short course of antiretroviral drugs and was cured. HIV is a retrovirus that you have for life and, using the best HAART drugs available, requires drugs for life. Although MLVs aren't the same as HIV, they're both retroviruses that are embedded in our own cells.
The research is there to make the obvious differetiation between aerobic and anaerobic bacteria and retroviruses. AIDS and HTLV research has been going on for decade. So we have a very good understanding of how they can potentially ruin your entire immune system.
It's probably best to agree to disagree for now. I'll leave with this: sometimes certain ideas become blaringly obvious when we just step away from the politics, our past negative experiences with the medical establishment, our preconceptions, and for all intents and purposes, get the hell out of our own way and see things from a fresh empirical perspective.
The science is there not to tell us the answers. It's just the fuel for our own logic to derive our own answers. I've never been more certain about something being the root of my illness, but time will tell and I'm always open to being wrong.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I suspect it is a "left over" protein.
Cellular uptake, activation and incorporation of EPA into lipids may be related to
induction of cell death in ***leukemia*** cell lines.
posted
I personally think that if it's been several years of antibiotics, and you aren't getting better, or you are not completely better, I think it's time to reevaluate.
What's the point of clinging to a Lyme diagnosis, when you may have an underlying immunodeficiency syndrome?
I don't think the IDSA gets it, and I don't think ILADS gets it either. I'm not going to talk about evils. It's not worth it.
I guess when you spend years trying to fight a Lyme diagnosis, doors shut to other possibilities. Sure, you may have Lyme disease, you may not have ever had Lyme disease, or maybe you don't have it anymore.
I feel confident that I have chronic Lyme disease. The herxes were intense, but they are now fading away.
The symptoms I am left with look like CFIDS symptoms. I wonder if a retrovirus could have been what made the Lyme spirochete go chronic in the first place, especially since I lived by Incline Village, NV when I got sick. If that were the case, I think that perhaps the I acquired the spirochete after I already had an asymptomatic XMRV variant. Perhaps in some, the Lyme spirochete is already in their body (but asymptomatic), and acquiring this retrovirus is what starts Lyme disease the cascade of symptoms.
Of course, I don't want a retrovirus, but at the same time I want to live a normal life again, so I am open to the possibility.
Maybe with research related to XMRV and its variants, chronic Lyme disease will become legitimized among the mainstream medical community. Maybe not, but I have hope.
The test kits available aren't suitable for detecting all the strains yet. So saying only 1 out of 100 tested positive locally (wherever that is), doesn't really say much yet.
We need to take the key and open that rational side of our brain. Humans tend to like to associate with groups, political parties, etc, but in my opinion, being a free thinker and keeping your mind as open as possible is the best approach. And yes, I am consulting with a CFIDS doctor now.
Change is ok. Reevaluating your beliefs every now and then is healthy.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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I didn't know you lived in Incline Village! When did you live there? I'm not sure I'm of the opinion that whoever goes there will come down with the "mystery pathogen" that caused the outbreak in 1984, but I have no doubt there was an infectious outbreak in 1984 as well as in Lyndonville in 1985 and other instances well-documented in history.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
m0jey, I only lived there for 2-3 years before becoming sick. I lived there long after the outbreak. I honestly don't know if Tahoe had anything to do with it as we don't really understand how the disease is spread.
But if there was an outbreak in the mid 1980s and if the virus doesn't seem to be spread by normal human-to-human contact, how is it spread? Could it be vector borne (e.g. mosquitoes)?
I don't have answers to my own questions.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
One possibility is that the trigger for the outbreak wasn't the retrovirus but some other easily-spread acute infection, and that subset of the population already had a high percentage of positives for the retrovirus and many were asymptomatic prior to the trigger.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I have read as much as my mind can hold about this XMRV and MLV and this question may sound stupid, BUT I will ask anyways..... if ticks carry lyme, and ticks feed on mice and this virus is Murine, meaning mouse derivative, could the mouse give it to the tick and we get it as a whole concoction???
Posts: 893 | From Florida | Registered: Dec 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
My feeling is that it has to do with vaccinations... If it has to do with mice - it may be lab bred mice, not mice in the wild. I'm not sure on that - it's just a hunch... I haven't been studying this. I have done alittle reading on it.
I had a CFS diagnosis in the 80's. I had a test for EBV back then & I didn't have it. I was "triggered" by some kind of bad flu. The same sort of thing that happened when I got ill again in the 1990's...
I haven't been studying it alot since I don't really want to be on anti-retrovirals. At least, until I see some results... I may reconsider in time. I haven't had the test for XMRV.
Again - does anyone know any alternative treatments that we can do that don't require a prescription in the mean time?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Didn't the new name proposed by Dr. Burrascano drop the "M" for murine?
I thought it was because they found out it doesn't have as much to do with mice as initially thought? Not sure if that means it did not originally come from mice after all, or if mice are just one of many sources, etc....I would have to go back and re-read.
It has been proposed that this virus/es might be tick-bourne. But who really knows.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
The name change is mainly political. It is definitely an exogenous retrovirus and it definitely infects human cells, but XMRV, MLV, and all its variants originally came from mice. They may have recombined over time to form a virus that only infects humans, but that remains to be seen.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Kday I think what you said about the virus could have been the tipping point for lyme disease in many of us could be true.
I was bitten by ticks all the time as a child growing up but I think my body kept it at bay till my 30's. I can remember having a prostate infection in my 20's and the Dr. giving me a shot of pennicilin and it clearing up but never sending it off to diagnose what the infection was.
I came down with a viral like flu in my 30's that slammed me and had to leave my job. Classic CFIDS diagnosis back in the day. We can only hope the virus is finally an explanation for many of us.
Reading this part of the link from above makes me sick as I forgot all about Dr. Defreitas findings in 1991. I swear I hate the NIH/CDC.
In 1984, Dr. Paul Cheney and Dr. Daniel Peterson dialed up the CDC for help with an outbreak of a flu-like illness that had hit their picturesque town of Incline Village, on beautiful Lake Tahoe, Nevada. When the epidemiologists arrived, they saw about 10 patients, and then went skiing. That outbreak turned out to be one of several outbreaks of Chronic Fatigue Syndrome seen worldwide in the 1980s.
In 1991, a young researcher at the University of Pennsylvania's Wistar Institute named Dr. Elaine DeFreitas discovered a retrovirus in the blood of CFS patients. Twenty years ago, newspapers and TV news shows latched onto DeFreitas's finding, spreading the word that the cause of the debilitating disease had, perhaps, been found.
The jubilant atmosphere was short-lived. The CDC failed to find DeFreitas's retrovirus in patients and controls (without using DeFreitas's protocol) and British researchers found the retrovirus in all the controls and the patients--again without using her protocol. Given the diametrically opposed findings, DeFreitas reasoned the problem was rooted in the methods. But by that time, retroviral disbelievers outnumbered believers, media interest had flagged and the CDC took the unusual step of publicly chastising DeFreitas, which halted retroviral research into CFS.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
Thank for posting about DeFreitas. There has been much controversy on whether the retrovirus she found is the same that the researchers are finding now. She said that what she found was a non-C type retrovirus (non-gammaretrovirus), but the recent findings were gammaretroviruses. The most important part of her findings was that she found the retro inside the mitochondria, the energy producing factories of the cell, which could be a fitting explanation for the post-exertional malaise suffered by CFIDS patients.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Joey rumor has it that Dr. Judy Mikotivs the head researcher is out to prove that it was the xmrv virus Dr. Defeitas was looking at.
The DeFreitas 1991 article repeatedly uses the phrase "HTLV-II-like", meaning that they weren't really sure what it was, only that it had similarities to HTLV-II. It seems that they suspected they were looking at a new virus. The last sentence of the article states, "In any case, biological characterization of this agent and its role in the pathogenesis of CFIDS awaits its isolation."
From Oslers Web In Osler's Web, DeFreitas seemed very aware that she had found an unknown retrovirus:
p. 524: "DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'"
p. 525: "Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type." So non C or a C what she found was worth researching. As mentioned she really wasn't sure what it was. It is such as shame her work was thrown out and Dr. Defreitas knew how the NIH skewed her research with magnesium. Can you imagine if they had started funding to study the virus in 91 where we could be now.
Posts: 805 | From Utopia | Registered: Feb 2006
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"XMRV is Not the retrovirus identified by De Freitas et al."
However, WPI has certainly shown itself to be flexible in its ways, and Judy seems like the type of researcher that wants to get to the bottom of things rather than maintain her ego.
Just from a political and treatment standpoint, it would certainly benefit all of us if it were same virus instead of a bunch of different retroviral variants and even types. Even if you look at in vitro studies of HIV drugs on XMRV and MLV (effect of drugs on human cells in test tubes), the efficaceous drugs are different. Simpler is always better.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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